Donna Steigleder

As the full-time caregiver for her disabled spouse, Donna has more than 30 years of experience providing care not only to Lynn but before him, to her daughter now in her thirties. After retiring from full-time employment as a Human Resources professional in 2018, she focuses her attention on helping support the eight members of her immediate and extended family needing caregiving support daily. Between her first career as a registered nurse and her years working in the employment world, Donna developed many skills that make her successful in problem-solving and crisis management. Her greatest desire now is to put those skills to work to help relieve some of the burden caregivers face every day.

Audiobook…Take Me Away

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I love to read.  Since I was a small girl, I’ve taken a book with me everywhere I go. If there

Rising Tide available from internet bookstores
Rising Tide available from internet bookstores

was the possibility that I might have waiting time, I had my book ready and waiting to spare me from any boredom as I was taken into the world of “whatever” for the few minutes I would wait.  LOL…There were even times when I wished for more waiting time so I could finish a particularly interesting section.
When I read, I become immersed in the story.  I escape into the mystery of “who done it” and follow the trail to the next clue cheering along the good guys and hoping the bad will “get theirs.”  During a week’s vacation I would devour 5-6 novels sitting for hours at pool side or in the condo totally relaxing with my  imaginary friends.
This year when I went on vacation, I didn’t even take a book.
I used to watch a lot of television when I wasn’t reading. I don’t watch television anymore either; at least not to sit down and actually watch a show in one sitting. I do record movies or programs and watch them as I feed Lynn but other than that, I don’t have time for TV.  With television, you have to see so much of the action to know what’s really happening and I usually have my back to the television cutting, cooking, cleaning, or caring.
Of all the things I’ve given up though, I think reading  is the one I miss the most.  A quiet corner with a cup of coffee or tea beside me, maybe a snack as well, sitting with my legs curled under me and a blanket over my knees while I escape into an alternate reality.  Ahhhh….That’s my idea of relaxation.
But those opportunities are no longer available.
Now, every waking minute of every day is filled with either working, catching up on work I couldn’t do during normal business hours, caring for Lynn, making meals to have on hand, ordering supplies, helping Lynn with his writing (he’s become an author since he can no longer do physical labor. See book cover above.), laundry, grocery shopping, etc, etc, etc. There is literally not a 15-minute period all day that is “down time”…unless you count when I’m asleep or in the bathroom. Those however are essential bodily functions so I consider that as part of the work day.
So how do I cope with having no leisure time?  I listen to books instead of reading them!  I’ve discovered that I can borrow an audiobook from the library for three weeks and read it whenever I’m working in the kitchen or driving to/from work.  Books describe what’s happening to the characters, their emotions, thoughts, and the action taking place, about to take place, or which has already occurred.  With an audiobook I can still enjoy my favorite leisure time activity even though I’m not having leisure time.  Plus, I think about the story and not about the challenges of my job or caregiving.  It’s a great escape for me.
I think having some form of escape is essential when your life is so packed with responsibilities. It’s often difficult to find any “me time.”  Listening to a book gives me back my favorite pastime and allows me those moments of escape that are so essential to my mental health.
In fact…..I need to get back to London now.  I think Margaret is about to disclose that Roger is the one who killed Jasmine. … or could it be the Major???

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A Little to the Left Please

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I often complain about how picky I think Lynn is.  One of my greatest frustrations is how much effort it takes to get something right for him.  It has to be “just so” before we can stop fiddling with whatever it is.  I’ve always thought that it was just because he was picky but something he said last night made me realize that he really was just trying to get comfortable.  He was telling me that his son said to him once, “Dad, you just have to accept that you’re going to be uncomfortable occasionally.  Just accept it.” (I’ve often had that same thought) Lynn’s response back was, “But you don’t understand. I’m uncomfortable ALL the time.  When I keep asking you to do it over, I’m just trying to get the extreme uncomfortable down to a mild uncomfortable.”
When I heard him explain it that way, it helped me to understand his world a little more.  He actually does not complain a lot.  True, whenever I enter the room I have to do  4-10 adjustments to some part of his body comfortable, but after he gets it where he wants it to be, he’s pretty quite till the next time he needs something.  He’s not a big complainer and I think he would certainly have a right to be.
Since MS is a condition that affects the nerves, I’m assuming that not only does it affect how something functions but it also affects how sensitive the nerve it.  Thus, I expect his nerve pathways are really hyper and that’s why he can’t seem to get comfortable.  His skin itches a lot (I use a lot of lotion on him which helps some) and he can’t scratch it.  That could be a good torture technique, to make someone itch and not let them scratch. It could just about drive you insane, I bet.
Not only is an itchy spot a mental torture, but a side effect of an unscratched itch is that it can trigger his legs to jump. If you’ve ever experienced restless leg syndrome, it’s a lot like that.  The tension builds and builds until it suddenly releases in a spasm causing his leg to jump. So many small touches or scrapes seem to be able to start that spastic response in him-a corner of a towel rubbing gently across his leg, something liquid falling on his shin, anything hanging over his chair that occasionally rubs his legs. Something that simple triggers the nerve build up and then he gets the spasm.
He also seems to have the “princess and the pea” syndrome.  He feels a lump or something in his seat cushion or under his leg and I have to find the irritating culprit. It seems the smallest crease can really cause a lot of pain after hours of sitting in the same position.
I realize that not having use of his hands puts him at the mercy of whomever is around.  I often complain because he expects me to innately know where the discomfort is and to fix it.  Trying to get him to describe where the offensive site is can be a real challenge.  I keep asking for more detail while I make an educated guess regarding the exact location.  If I really think about it, he’s actually pretty good at describing where it’s located.  It’s not an easy thing to do.  I was seeing a surgeon about possibly having surgery on my hands and he was asking me where it hurt and how and I had the hardest time narrowing down the exact location.  Pain sort of radiates to multiple areas so finding the epicenter can be a challenge.
At any rate I need to pray more for patience with him and the difficulties he has with getting comfortable.  He really manages it all remarkably well and I just need to put myself in his wheelchair before I make a comment.

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I Didn't Say That

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I’ve discovered that a lot of people who have never been caregivers just don’t get what it really means to be a caregiver and they make a lot of bad assumptions that sometimes cause us hurt.  I had an example of that this week.
On Friday, I received an email from my former sister-in-law.  She was “outraged” by something she believed I had endorsed and proceeded to accuse me of being thoughtless, uncaring, unappreciative, heartless, and a Christian who did not live what I believed.  She said some very hurtful things based on a rumor she had apparently heard from someone who was uninformed and absolutely wrong in what they shared.  Not only did she hurt me but she hurt my daughter who she was really trying to get to through me in the first place. It was an unprovoked attack and unfortunately, one that will certainly taint any future interactions I may have with her (though hopefully there will be no more).
She had heard that my daughter would not bring her child to visit his great-grandmother due to fear of MRSA (Methicillin Resistant Staph Aureus– a very difficult to treat infectious condition) in the rehab facility where she was staying.  Her assertion was that my daughter should bring her child for a visit regardless and since she was a stay-at-home mom, she certainly had the time to be able to visit. She conceded that she realized I had my hands full but she felt I should have insisted that my daughter visit instead of encouraging her to stay away.
I was stunned by her assumptions and accusations.  First off, I didn’t even know that my former mother-in-law was even in a rehab facility much less that she was asking to see Eli. Second, I couldn’t imagine that if Sarah (my daughter) knew about the request that she would refuse unless there was a very good reason. The truth of the matter was that she did know that her grandmother was in rehab and had in fact, already planned with her to take Eli there to visit when her husband was available to assist her with the toddler.  Eli is a special needs child.  In almost every way he’s as normal as any other 16-month old toddler; full of energy, into everything and wanting to put everything in his mouth still. However, he does not eat.  He refuses to drink almost anything and he eats only 2-3 tablespoons of food at any sitting. He does not take in enough food to survive on his own so he has a feeding tube.  Therefore, to take him anywhere means taking all the supplies for his tube feeding and replacement materials in case the tube comes out or gets dislodged.  On top of that, this tube that goes through his nose into his stomach, hangs out of his nose and goes down his back.  The tubing provides a direct passageway from whatever it touches outside his body to his stomach.  Therefore, letting this tube come in contact with MRSA is a very big deal. But the biggest insult was the assumption that since she stayed at home, it was no big deal to go for a visit.
That’s the part that people just do not understand.  Going out is a very big deal.  Though our challenges are different, my daughter and I both have the same issues when leaving home with our charges.  You have to pack supplies (for me its catheter supplies; for her it’s tube feeding), food (Lynn can’t eat out due to his special diet; Eli will only eat very specific things), and comfort items (clothing, water, medications, etc). Lynn fatigues very easily and his spasticity causes him a lot of discomfort if he can’t get on his peddlar that will rotate his legs and relieve the spasms.
I know people wonder why we don’t go anywhere but it’s so difficult to do so and it causes so much discomfort for us both that the enjoyment of a visit is not enough incentive to make up for the problems to address in getting there.  It’s not that we don’t care about other people or that we wouldn’t enjoy a visit but its high risk and often takes more time for recovery afterwards than the amount of time we were gone. So we don’t go.
Bottom line, I wish people would stop making assumptions about what they think is our reason for not participating or not doing what they think we should be doing.  Just like that saying goes, “don’t judge until you have walked a mile in that person’s shoes.”

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Who Am I?

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Looking outside, I see some new orange and yellow colors where last week I saw green.  There is a sporadic fluttering of leaves cascading in front of the window on their way to cover my yard. The air is crisp causing me to need to turn on heat this morning so Lynn would not be too cold today.  It seems that summer is definitely over.
Working from home now so that I can care for Lynn, I find it hard to really be part of the seasonal changes.  I wear the same scrub suites all year.  I am only outside a very few minutes at a time usually so I can always be in earshot of Lynn’s call for help or need to be catheterized so the usual changes in temperature do not trigger time moving on like it did when I went into work each day.  Therefore, it seems at times as if I am a spectator to life rather than participating in the changes.  I find it difficult to “know” instinctually what month it is.
I think about when I worked as a nurse years ago, I used to ask patients, “what is your name, what month is it, and who is the president?”  Honestly, there are times I think the only one I could answer correctly is my name! My world is focused on keeping up with my daily demands moving between being a caregiver to an employee within minutes of each other and that transition occurring hundreds of time a week.  After a while I’m so focused on trying to stay in the “here and now” that I am not aware of what’s going on around me.
Lynn listens to Fox news in the morning so I usually hear a little about what’s happening in the world as I assist him in his morning routine but after that, I rarely know what’s happening outside of my small world unless a family member emails me a question or shares a comment.  I have to consciously strive to stay in the “here and now” both at home and in the world around me.  It’s very tempting to just stay in my little world.  I have plenty to do to keep me occupied if I did that.  But….is that the right thing to do?  I have to say, “not.”
It’s easy to become isolated when you are so busy caring for one person; after all, they are the center of your world. When that happens, however, I think that the “person” gets lost in the process.  It takes extra effort but keep establishing my “personhood” apart from caregiving responsibilities but I think it’s important to do so. I “lost” myself in my first marriage changing who I was and what I liked to be accepted and to try to save that relationship.  I’m a “people-pleaser” by nature and it’s difficult for me to not just allow myself to blend in and go along with the crowd. But when I did that, as in my first marriage, once that relationship ended, I didn’t know who “I” really was.
When you give and give and give and set aside your own wants and needs, you tend to cope with the necessity of putting others first, by repressing your own inner desires and enjoyments.  But then if the relationship ends either through divorce, death, or just separation as people go in different directions, what do you have left?  Sometimes, it’s not so clear. I remember a counselor asking me during the early days of my divorce what I liked to do and I honestly did not know.  It had been so long since I had done anything just for my own enjoyment (other than read occasionally) that I had no idea what I might want to do for entertainment that I would do with others.  It took me awhile to find “me” again; so I’m trying not to let that happen this time around.
That’s why I write this blog, to assert who I am and how “I’M” affected by this role. It’s why last week even though I needed to do so much at home, when my daughter said, “let’s get away,” I said, “yes,” instead of, “another time.”  It takes a lot more effort to get away than it would seem. Something always has to give when you do, but I think it’s also important to remember to let who you are get free at times from being overshadowed by caring for others. Most likely, one day, I will not be a caregiver any longer and when that happens, I will need to know who I am so that I have “someone” to fall into.  When that happens, I want that “someone” to be a friend; not a stranger.

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So This is What a Day of Freedom Feels Like

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My daughter approached me during our vacation and asked if I would be interested in speeding the day with her “escaping” from our caregiving responsibilities and just doing what we wanted to do.  She knew I usually worked on the weekends but thought that I should take a break and do something just for myself.  She also confessed that she, too, needed that break from caring for her special needs child as well. Falling into the category of “great minds thinking alike,”  I told her I had been thinking the same thing.  We both needed a “me” day so, of course, I said, “absolutely!”
Well, yesterday, she made it happen.  Her husband who works almost every weekend was off.  She checked with my step-son, and though he is often busy also with work activities on weekends, he said he, too, could be off. So her husband got baby duty, and my step-son got daddy-duty and my daughter and I got no duty, well mostly. As a caregiver you never completely get a day off unless you go out-of-town, alone.  We both had our morning activities to complete with our loved one before we could go but we got away from our homes by 11 which was remarkable.  Usually when Lynn and I have somewhere to go, our morning process is anything but smooth but not so yesterday.  All was smooth sailing and in fact, I finished up so early, I was even able to do some outside decorating changing my artificial flower display (I do NOT have a green thumb or time to water plants so it’s either fake or nothing) from spring/summer to fall colors.
On my way to her house to pick her up, I stopped and got some more flowers for outside and then strolled into her house to say, “hi,” to my grandson who was absolutely adorable even with nasal congestion from his cold. “Loving” him from a distance, I made contact with smiles and gestures (can’t get close enough to pick up his germs to take home to Lynn) and then I escaped with his Mom for a day of freedom.
We went out to lunch and had dessert, then we decided to go shopping since neither of us ever can just “shop” for ourselves.  It was awesome!  During our meal, neither of us had to stop to feed anyone else first while our food got cold or clean up spills or do anything other than concentrate on our food.  With shopping, we split up knowing that we didn’t need to “be together” to “be together” and each had the freedom to browse or buy as they saw fit.  With the use of cell phones we kept up with where each was in the store and we mutually did our own thing. It was relaxing and carefree. We enjoyed good conversation and both bought some things we wanted and needed and actually had time to try on before we bought it.
We lost track of time somewhat and suddenly realized it was getting to be the time we had said we would be back but in reality that wasn’t bad either because we had an estimated time for return rather than a deadline.
I really needed this day.  I know I had forgotten how it felt to be able to just take a day off from responsibilities. Sometimes I worry, as I know she does, about what we share with others about our feelings of isolation and being trapped at times.  It’s not that we don’t want to be where we are or do what we do.  We love the ones we care for and want to take care of them ourselves and don’t regret our decisions associated with making that commitment.  But sometimes it just gets overwhelming to do the same thing day in and day out and not see an end in sight.  I admit I get selfish a lot.  I look only at what meeting his needs does to my agenda and don’t consider the fact that he wouldn’t ask if he could do it himself.  I wish I had the patience and compassion I was able to display in the early days of caregiving before I started feeling burned out but I’m getting tired…physically tired, mentally tired, emotionally tired.  However, having a day like yesterday helps me to cope with that fatigue and helps to recharge my battery.
Thanks to my stepson and son-in-law for sacrificing their day off to let us have that time.  Bless you both for caring and loving us enough to see that we needed that time.  Thanks to all my children, their spouses, my parents and in-laws, brothers, sisters, uncles and aunts, friends and readers who offer support, encouragement, and hands-on help.  I don’t know how I would make it through the day in and day out challenges of our life without you.  God has truly blessed me in this life with each of you.

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When Is This Going to go Away?

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I realized something this week. Somewhere in my subconscious, I seem to be waiting for all “this” to go away…to wake up one day and “everything” be back to normal.  How odd is that?
Lynn was diagnosed with MS in 2006.  We were married in 1997.  I knew well before his diagnosis that he had MS even though he was repeatedly told he didn’t; that his symptoms were something else.  Lynn didn’t want to have MS so he accepted that explanation; however, I’m a realist, and in my heart, I knew.
When the official call came and one of his worst fears was realized, I just received confirmation of what I “knew.”  I immediately started researching what I needed to know so I could manage his care. Initially, he was more involved in putting up roadblocks to learning about his condition than in really being involved.  I, however, have always faced my challenges through trying to learn more.  I look to find answers in the wisdom or knowledge of others through books, articles, webinars, etc.  I try to absorb all I can with the hope that the more I know, the easier it will be to cope.  In many ways that works for me because as the challenges occur, I at least have a starting point on how to approach it.
That being the case, then why am I waiting for all this to go away? I realized that I keep clinging to the hope that one day a miracle will happen and he will no longer feel so tired or so incredibly bad all the time. I read about other people with MS and they go out, have fun, work, participate in family events, do advocacy work, participate in bike rides and walk-a-thons, so on and so forth.  They seem to feel well and have energy though they get around using a wheelchair, cane, or walker.  They say they have bad days but overall they seem to feel pretty good.
Not Lynn.  He has maybe one day a week he feels pretty good. He’s pretty good on Monday, not too bad on Tuesdays usually. By Wednesday the first half of the day is okay but by afternoon he’s heading downhill.  Thursday is worse, Friday is pretty bad, Saturday and Sunday just “suck.” He feels so bad today, I’m surprised he can even function.
Why does he feel so bad?  We have lots of excuses.  His thyroid hormones are way off.  He’s slightly anemic.  His Rebif shots seem to accumulate in acting as a toxin to his system as the week goes by. The combination seems to make his quality of life pretty low most of the time.  It’s hard to watch him be miserable day after day after day; to watch him hope for a good day and need to accept that it’s not going to be one…again.
For me personally; if he’s having a bad day, he needs more attention.  He becomes impatient; then I get annoyed and then feel guilty for being annoyed but still get that way anyway. He can’t help with any movements so I have more muscle fatigue and spasms.  He needs to drink more fluid to flush out his system which means I have to cath him more (I cathed him 21 times yesterday in that 24-hour period. Needless to say, I was interrupted in whatever I was doing about every 30-45 minutes all day long).  So even though he’s the one who feels bad, we are both significantly affected.
He tries not to burden me with how he feels.  He tries not to ask me to do too much but when he’s like this, he really cannot even find the strength to lift his good hand to flip a switch on his peddler to turn it on; to scratch an itch behind his ear because he can’t lift his arm that high; to change the TV channel on the remote because he doesn’t have the strength to push the button, etc.  If he can’t do these small things, forget feeding himself, getting dressed, shifting positions in his seat or in the bed…
When he started Rebif, he was told it should take about six months to adjust to it.  He started it in April 2012.  We’re still waiting on the adjustment.  While he’s better than he was initially, this drug really kicks his butt.  Even as bad as he feels though, he’s afraid to stop it.  He has not had an exacerbation since 2010.  Is that the medication?  If so was Copaxone doing just as good as Rebif?  That didn’t seem to be the case because he progressively got a lot worse while just taking Copaxone.  If Rebif has been helping him to not lose further function is it worth feeling awful most of the time to keep it going?  Maybe so if an exacerbation might take away his ability to breath on his own, or be able to see, or remember, or speak.  There are a lot of really bad “loses” that can happen with MS so maybe putting up with extreme fatigue and weakness is not such a bad thing.
But I keep hoping that each day will be the day he suddenly adjusts to the medication, either the medicine for his thyroid or his anemia, or the Rebif suddenly works and he no longer feels absolutely awful.  I keep waiting for that day; expecting our lives to no longer be held up by how he feels and that we can again go back out into the world and be part of it.  Is it possible that could happen or is it just wishful thinking?

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Now This is What I Call Accessible

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you asked for it!For the first time in eight years, Lynn has been able to “swim” in the ocean.  He was overjoyed at the experience (that grimace in the picture is only due to the wave splashing in his face; he was having a blast) and so were we.  So in spite of the fact that Radical Mobility apparently lied to us about sending us the parts to make his 4wd wheelchair work for our beach vacation, we found a truly accommodating community that supported our needs.
During the winter, I was told by one of our home health providers about a handicap accessible house on Emerald Isle in North Carolina.  She told us that the fire department there loaned floating wheelchairs that could be used on the beach on a first come first served basis.  We checked it out and found a beach house that had a ramp that lead directly to the beach and was able to get a wheelchair from the fire department.  Those chairs are incredible! They have huge back wheels, slightly smaller front wheels that are very bouncy and are made from materials that can get totally wet.  Therefore, when you get the chair in the water, it floats up.  It took three of us to hold it steady in the water but he was able to ride the waves!
After playing at the beach, he took a day off to re-energize and on Wednesday, he hit the beach again.  Though, my husband thinks he’s brave; I just know he’s crazy; but he wanted us to tie a rope to his life vest and let him float in the water without the chair!  He was convinced that the vest would keep him from drowning.  We tried to argue but he was not budging.  So I tied the rope to the top of the vest and let him see that when the waves came in, the rope swirled around in the water and could create a safety risk itself.  He finally saw that and agreed that was not a good solution. Finally we compromised.  We sat him in the water a few feet from the edge of the surf so it would hit him mid-chest. He wanted to lie on a buggy board to float but we convinced him that face down in the surf without the ability to hold onto the board, might not be very effective.  He tried to clutch the board and realized his spasticity would not allow him to do what he wanted and gave up on that, but he still had a great time.
This has been such a great vacation for him.  He’s finally realized he needs a day of rest between events and that has helped.  He has been able to participate by sitting on the deck that overlooks the sea because it’s plenty big enough for his wheelchair to maneuver around.  He has been a part of the group or alone based on how he feels.
The rest of our group has been very supportive to us both.   Though I cannot get away without putting in an indwelling catheter which limits my outing times, I have been able to get away twice to run errands and his son takes over my role.  Plus his son is much stronger than me so he’s helped with so much of the moving and lifting.  We are so blessed by our supportive and loving family who have often put our needs before their own.
We have also have our grandson with us as well as my parents.  Altogether we have had eight adults and 1 child (age 15 months so he’s into everything).  Both my husband and the baby are special needs so we have all taken turns Eli at the beachrelieving the baby’s parents and they in turn relieve me.  It really helps to make vacation time manageable; otherwise the extra efforts needed to survive in a house that is not set up to meet the “patient’s” special needs would make a vacation miserable.  To be honest that has been the case for many of our former vacation years.  Not so, now.  We have found our vacation spot!
In fact, I’ve put in a “pre-registration” for a house next summer in this same area that has a roll-in shower, handicap ramp, a pool, and an elevator.  I’m really excited because the shower is still a bit of a problem here.  They have an outdoor hot/cold shower but it does not have sitting for the disabled so we have hooked up a hose to the spout and shower him just outside the shower itself.  It’s a bit cool doing it that way though plus he can’t take his shorts off since  it’s outside and could be viewed from the street.  Don’t want an x-rated show for the neighbors.
I wish all communities were so sensitive to those with special needs.  It should be that all people can have the same opportunities to access the beach; not just those with two feet.  Emerald Isle is such a community and I’ve been very impressed with them.  If you’re looking for a great summer spot, I highly recommend them.lynn going to beach

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Radical Mobility Lets Us Down Yet Again

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Within a few days, we’ll be getting ready to head out to the beach. Lynn loves the beach.  His favorite past-time has always been to surf fish.  Since he became restricted to a wheelchair, this has not been possible.  So in hopes of being able to participate in that joyful experience he purchased a very expensive 4-wheel drive wheelchair from Radical Mobility in 2009.  Unfortunately, he has never been able to use it (see my post about this from March 2013 for details  http://mscaregiverdonna.wordpress.com/2013/03/01/thinking-of-buying-4wd-wheelchair-dont-buy-from-radical-mobility/).
When it first arrived, he was too sick but by the following summer, he was well enough to take it with us to the beach.  However, once there, it would not carry him up the ramp into the van and it would not drive on sand; both essential functions if you want to go to the water’s edge.
When we returned home, he started attempting to contact Radical Mobility to find out about having it fixed. Per their instructions we sent them the parts that were defective in April 2012.  To date, we have not gotten them back.  When I posted that blog, Radical Mobility commented to it:

Albert says:

Dear Mrs Steigleder,

We are extremely sorry that you did not receive the controls that was sent, we should have checked back with you to make sure everything was in order. We did receive email from our new branch in Durban but assumed you have received the package. I have forwarded your mail to our CEO, (martin@martinbrown.co.za) who is going to be livid and heads are going to fly.
He has had some heath issues this past year but is recovering well. We will send you a new control, cable and power module on Monday 4th when the factory opens at 08h00. It will be sent with TNT, UPS or Fed ex so we can assure its arrival this time, only thing we will need is picture of the two motor plugs. They are the plugs with the red, black and two white wires in the centre, reason being that they can get the polarity correct on the programming.

Once again we apologise and hope to get Lynn fishing soon, please join our blog, Facebook page, Twitter, Flickr as we don’t see you at all on those sites.
You can mail me direct at workshop@radicalmobility.com, lets get these parts to you soonest and Lynn out fishing again.

Kind Regards

————————–
Albert Seko
Operations Manager

Radical Holdings (Pty) Ltd
T/A Radical Mobility

I was so excited to think that our waiting was over and they would promptly correct the problem.  I trusted them at their word to send back out parts.  To date, we still don’t have the parts.  We were told weeks ago it had been shipped and we would get the tracking numbers.  Though we have emailed multiple times and requested the tracking numbers, we have not received them.
In my frustration, I threatened to write bad reviews anywhere I saw them advertised.  Their response was to threaten to take me to court.  I don’t know the laws in South Africa but I would assume that a company is held to their verbal commitments to stand by their product so as long as I comment on what we have experienced, I don’t think I have a legal concern.
To be honest though, the legal issue is not my main concern. My concern is that once again we’re heading to the beach and Lynn will be left out of much of the fun because he can’t get out on the beach. It’s so very depressing to be so close yet so far away. It’s bad enough to feel bad every day, to not be able to do anything for yourself, to have to watch others have fun while you sit on the sidelines; but what is worse is that they PROMISED we would have the parts back easily in time for him to have the wheelchair working this year. They lied.  We built hope around that lie and now, though he’s not saying it, I know Lynn is dreading going.  And because he can’t participate, neither will I for most of the activities.  I’ll need to stay close by in case he needs anything.  Our kids will stay with him some but they want to go out too.  They stay usually in one room while he sits in another watching TV or typing on his book.  He gets very lonely because he has limited access to all the fun and to being part of the group.  Some of that is his own fault because he doesn’t want to watch what they do and won’t do so just to be in the group  (but on the other hand, if he’s miserable, watching a program you don’t like doesn’t help either.)
We’re trying to stay positive.  I hear the fire department there might have manual wheelchairs we can use on the beach so hopefully we can rent one for a few days.  But it’s a shame we have to pay money to rent a chair for the beach when we have one we bought for that purpose sitting right here in our living room.
Lynn doesn’t want to take legal action, but I see no other choice to bring this to resolution; so does anyone know what type of lawyer I need to deal with a company in South Africa who breached their contract? If so, please let me know.

Radical Mobility Lets Us Down Yet Again Read More »

Fear of the Future

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One of the ways we cope with Lynn’s condition is to deal with what we have “today” and not look too far ahead.  That’s especially true for Lynn; not as much for me.  My personal make-up requires that I have a sense of control about my life so I ALWAYS look ahead and plan for what’s coming up. I hate surprises and am not an impulsive person, at all! While that works for me, Lynn doesn’t want to think about the future.  He might plan for projects that he wants to do but he doesn’t want to really look at the future.  He’s almost, but not quite, the type to bury his head in the sand.  That’s especially true when it comes to MS.
Ever since he was diagnosed with multiple sclerosis, he has not wanted to learn anything more than he needed to know to manage his symptoms for that day. I was on-line reading all I could find the day we got home from the doctor’s office with the diagnosis. Not Lynn; he didn’t want to know anything about it and would ask me to close the screen if he came into the room.  Part of that, of course, was the fact that he had “lived” MS with his father who had died in his 40’s after a very progressive battle that put him quickly into a wheelchair and then a bed where he stayed till he died of complications.  It’s Lynn’s philosophy that if you are told about negative things that “could” happen, you’re more likely to subconsciously progress in that direction.  I can see his point of view on that so I try not to bring up symptoms he does not currently have and I don’t talk about disease progression.  When he talks about being able to stand independently or do this or that (things he has not done in over two years) then I mutter encouraging words, try to help him with his physical therapy toward that goal, and try to support his mental hope. Then in private, I continue to research what might be causing any new symptoms I might see and look for disease modifying therapies or devices to assist in his daily care.  I also admit that I DO think a lot about future care even though I try not to.
Currently, I am very fortunate that I can work from home and I have his family who comes in twice a week to help.  His mom and sister come on Mondays and his son comes on Wednesdays.  They are a God-send because on Mondays I have a lot of things scheduled that take time and it helps to have Lynn’s needs being met so I can focus on those things.  On Wednesdays I usually go into my office at work for any face-to-face meetings I might need to attend and to just remind people that I actually work there. However, I know at any point that assistance may no longer be available.  His son could get a job that required him to physically be at the office very day (he currently works from home and just works here on those Wednesdays).  His mom could get sick or his sister change jobs and they would no longer be available either.  My daughter used to help out but now she is a full-time caregiver for her son who has special needs and she can’t really manage his care and Lynn’s except for short periods; certainly not on a regular basis. I had a friend who used to come regularly to stay with him a few hours each Thursday but her personal demands have changed and she can rarely come any more.  Therefore, as time goes by my options for support have had a way of dwindling down.  That’s pretty common for long term conditions. People can help temporarily but long term is another matter.  So, I know that at some point, I’ll have to figure out how to pay for someone to come to my home or come up with another solution.
It’s discouraging the way resources are made available to those who do not work but for those of us who try to pay our own way, we can’t get any help.  For me to get assistance, I would need to quit my job, go on welfare, and maybe declare bankruptcy. I currently spend a lot of money on supplements that have really improved Lynn’s health but which are incredibly expensive!  I’m spending $3-4oo easily each month on supplements. Then there’s the grass-fed meats which are more expensive, medication co-pays, assistive devices that we find useful but which are not covered by insurance, and so many other expenses that to think about trying to come up with money to pay someone to stay here while I go into work, is mind-blowing… so I just don’t think about it yet.  I’ll deal with it when I have to since nothing is going to change between now and then…or could it?
A caregiver support group formed at my church in April.  We meet once of month.  In the group, we have one person whose spouse has a heart condition that limits his functioning, another whose spouse had a brain injury who needs significant support, one whose spouse has Alzheimer’s or something similar and three who had parents with cognitive or physical impairments needing care.  Since April, two have lost their loved ones and another has had a series of heart attacks which are limiting his life expectancy to months instead of years. As I told Lynn of each of these occurrences, I could see him becoming more and more concerned.
Our last meeting of the group was held at a rehab facility where two of the group had recently placed loved ones.  When I told Lynn about the one going into rehab and the issues associated with trying to take him home (his house is not handicap accessible with multiple stairs to get into the house and significant restrictions inside for using wheelchairs, lifts, etc.), I could tell it really bothered him. Later that day he shared that he was scared.  He’s so afraid that one day he will have to go into a nursing home.  He knows that even a well-run and high quality nursing home would mean he would get limited attention and would often be uncomfortable (he has A LOT of comfort needs.  It’s very difficult for him to feel comfortable and I’m forever adjusting this, moving that, changing whatever).  He also knows that he would feel isolated from family and friends because they would not be around all the time like I am now. He sees this happening to someone he knew who was able-bodied long after Lynn was unable to care for himself and it brings home to him how quickly things can change.
I assured him that as long as I’m able, he will never be put in a nursing home and that even if something happened to me, I’m sure the kids would take him in and work together to care for him. The reality is that I’m sure they would want to do just that, but could they?  They have jobs; they need to work.  They could not get financial assistance to care for him in their homes; just like I can’t, but they could get assistance if he was put in a nursing home.  How crazy is that?  It’s much more expensive to pay for inpatient care than to have a caregiver come to the home for a few hours but the more expensive one is an option, and the money-saving one is not.  Short-sighted? I would say so.
At any rate, I think my assurances helped him not feel as insecure.  He knows I’m overwhelmed with all I do and he knows my physical condition is deteriorating due to the wear and tear on my body from lifting and lack of sleep so he knows that I may mentally be willing but physically may not be able to do so.
So, what was my advise to him?  The same as always and the only thing that’s sure.  Just trust in God to take care of us when we need Him to do so.  He hasn’t failed us yet and He won’t fail us then.  I don’t know what the future holds for us.  I know Lynn’s likely to get worse instead of better.  I know I’m likely to have problems that interfere in my ability to care for him.  Can I do anything about that now?  No.  So I’m going to move forward in the manner I’ve used to cope so far…I’ll think about that later; not now.  For now, today, I have work to do.  He needs to be fed. He’s calling me to cath him.  I need to do some “work” work and I have some meals to prepare.  That’s enough for today.

Fear of the Future Read More »

Happy Birthday to Me!

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T0day is my birthday.  I’m a grand ole 56 years young or old depending on which joint is aching and how much sleep I have had.  Usually, I do not pay much attention to birthdays.  My children are grown and no one is in the house but me and Lynn and he has no way to buy me a card or gift or anything so it’s just another day.  I get cards and emails and they are all fun and make me feel good but today….today was the best birthday I can ever remember having!!
First off, I went in to work.  Usually I work from home which means I juggle taking care of Lynn and doing my job–often a difficult balance at best and can be very frustrating to split thoughts/functions/ activities continuously throughout the day.  But today, I went into work so for most of the day, I only had one focus…  my job.  It was awesome.  I love having only one thing to focus on even though I had multiple issues to address there, it was one role.  My staff took me to lunch and I was treated to a wonderful fat cheese burger, with the works, and sweet potato fries.  Delicious!  I treated myself to a decadent mocha blended coffee; full of calories, and refreshing for my 15-minute walk from my office to my meeting.  I was outside in the fresh air, able to enjoy peace and quiet; not rushing to get back in the house before I got called to help Lynn in some way or to finish up something that was on a deadline.
I got several text messages with birthday greetings and some beautiful cards.  The cards this year were especially wonderful.  Each one made me feel so humble.  Several spoke to how special I was to the sender and how much they admired and appreciated me. It was so uplifting to have such sweet sentiment shared and to know they meant it. My brother and his family sent me flowers (which is no small thing since I live in the country).  But there was one present I received that words cannot fully express the impact it had on me.  It was truly the best, most awesome gift, I have ever received in my entire life.
It was a card.  Not just any card but a card that was a colleague of pictures of my extended family. My wonderful, thoughtful 81-year old Mom, cut out pictures of each member of my extended family, glued them to a card and introduced me to the family I have not seen since Lynn became unable to travel.Family pictures
I grew up with my Mom’s sisters and their children (my cousins) always around. We were all a very close family.  We all got along together and really, truly enjoyed each other’s company. My Mom had three sisters and from those sisters I had 13 cousins.  Each cousin has had children of their own, most of whom I have never met because I live five hours away and have not been able to go home for most of the family gatherings, even before Lynn was taken ill.  For various reason, I could not get there on the days or times that they were able to gather.  The last time I saw everyone was when my Grandmother died in 2000, thirteen years ago.  Since then Lynn’s condition has made it impossible for me to take him with me back to my family home because their house is not designed for access and Lynn doesn’t tolerate travel very well anyway.  The only travel we do now is once a year to vacation area with our children in a condo that is handicap accessible.
In my heart, I’ve known I would never see my “family” again.  I hear stories and see pictures but it’s groups co-mingled together and difficult for me to tell who’s who.  Well, no more! My Mom (what an angel) assembled a separate page for each family group.  Started at the top of the page with her sister and brother-in-law and then introduced each of their children (my cousins) with their children (my second cousins) in groups and sometimes their grandchildren as well.  I have just met each one and KNOW them. I see the family resemblance and it brings back so much love and longing for them.  I can’t stop crying tears of joy.
As a caregiver, you have to give up a lot.  It comes with the job that you have to make sacrifices that just can’t be helped in order to take care of the needs of your loved one.  I’ve accepted that and just don’t dwell on it.  It makes me sad that I can’t go to family reunions and I often fear the day when one of my precious relatives dies and I want to go pay my last respects, to be with our family in our grief, but know that I cannot do so because I have no way to meet Lynn’s needs nor anyone to stay there with him while I am gone.  I hope that if and when the times comes, I’ll be able to find a way but …who knows?  It’s just a sadness I carry in my heart over the loss of that family I loved so much. I’m not referring to my bothers and their families because they are wonderful about coming here so we can get together at least at Christmas but I’m referring to those childhood playmates that meant so much to me.
I didn’t realize how much I missed them until I got that card.  At first I was grinning so much my face hurt. Then I took it to show Lynn what a special present I had received and the tears started to flow… and then the sobbing… and all the longing for my family I’ve storied in my heart for years just came out.  I am still tearing up as I write this.  I miss them so much and I still love each and every one of them the same as the day I last saw them.
So, I learned today there is more than one way to visit and unexpected joys can come that touch your heart in ways you never expected. I have been so blessed today by so many people and am so humbled by the love that has been shared and given freely.  I am so, so blessed.
Happy birthday to me…

Happy Birthday to Me! Read More »

Choices and Calculated Risk

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I had to make a choice this week about my own care that turned out well but according to the urgent care doctor I saw, was not very bright.  Maybe so, but it was a calculated risk and one that I felt was the right decision at the time and as it turned out, was the right decision in retrospect as well.
You see, I have a lot of allergies and sensitivities.  I am often caught off guard by some new thing I’ve become allergic to so I keep epi (epinephrine) pins around just in case.  Well, Saturday night I noticed I sure had a lot of bug bites for only having been on my deck picking hot peppers for a few minutes.  As the night progressed, they were even itchier and in more places.  By morning, I had patches of hives all over which itched me to a frenzy if anything touched them; especially my hands. I wanted to claw the very skin off my hands!!  It was awful.  I figured the cause was either this new drug I had been put on for arthritis pain or the extra dose of a supplement I was taking so I stopped them both to wait for it to pass.  By night time though, I wasn’t feeling so well.  Besides the hives, I had started to feel a lot of burning pain in my GI tract and my esophagus was feeling like I had a thick lump in it. Since I have lots of medical equipment around here, I took my blood pressure–fine–my pulse–fine–and my breathing was not labored nor was my oxygen saturation off.  So having assessed my own condition, I decided to use the epi pin to stop the progressing reaction.
It helped a bit but I was still miserable and it was worse again the next morning.  Being Monday, I thought that Lynn’s family was coming so I was preparing to go to the urgent care center when they got here.  They were late so he called to see where they might be. His mom reminded him that she had told him the week before that they were coming on Tuesday, not Monday, this week.  Now what? I couldn’t take him with me because he was not feeling great either (his thyroid hormone level is way off) and besides who would take care of his needs while I was being examined etc.?  Though I hated to do it, I decided to call my daughter who has the baby that doesn’t like to eat so she is busy all day long with his feeding tube, therapy, and such.  I honestly had about decided not to go but to just suffer with the intense itching when I realized that I needed to take care of me for once. I also knew that if I didn’t call her she would have felt awful that I did not ask for her help.
As it turned out it was the perfect time of day for her to be able to come over.  I finished Lynn’s care for the morning, put in an indwelling catheter, and hooked him up to his peddler. She got here before I even got him completely ready and off I went.  I’m now on prednisone and the BEST non-itching medicine I ever had, Zyrtec. It was amazing.  I went from frantic scratching to no itching at all in a few hours.  I highly recommend it.
As I look back on this situation, I realize that I have become so used to being the caregiver that I cease to care for myself at all.  While I’ve had enough allergic reactions to be able to gauge pretty well what I need to do, those reactions can trick you and I should have done as the doctor said and call 9-1-1- right afterwards.  Why didn’t I? Because what would I have done with Lynn that late at night?  I hated to call someone out of bed to come stay with him.  I didn’t feel like I had the energy to put in a catheter.  How would I get home if an ambulance took me to the hospital? It just seemed too much of a hassle so I decided to just wait it out.  In reality, any one of our children would have come over to help if I had called.  One would have stayed with Lynn, one would have gone to the hospital and the other would have helped in whatever other capacity was needed.  I know this but I just didn’t want to ask for the help.
I am a caregiver and not a care receiver.  I know that one day something will make me a receiver but I don’t want to change that role right now.  I want to give and not receive…but then so did Lynn when his MS got worse….
We don’t have a choice often in life but to deal with what we get and make the most of it.  Sometimes we make the right choice; other times not so good.  I was lucky this time but I do need to keep in mind that if I don’t take care of myself then I won’t be here to care for him.  Therefore, as his caregiver, it is my responsibility to do what I need to do to be well enough to keep going….and going….and going…..

Choices and Calculated Risk Read More »

Divine Intervention?

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I’m supposed to be at my eye appointment right now.  Since I’m writing a blog instead, you are correct in assuming, I didn’t make it there today. I really wanted to go get my eyes checked but even more, I really wanted new glasses.  I wear progressive lens in very inexpensive frames and for the past two years I have struggled with them constantly slipping down my nose, irritating the bridge of my nose where they sit, and not being able to see anyone I was talking to who stood within two feet of me because I would have to view them through the wrong “progressive” section of my lens.  I had it all arranged…Lynn’s aunt and uncle were coming early so I could leave on time and I had planned in my mind how I would get my exam, order my frames and pick up things I needed at the store, but as they say….the best made plans of mice and men…

I got to bed at 2:30 a.m. last night which is fairly typical for me but not what I wanted to do since I had to get up at 6:30 a.m after a night of every two-hour catheterizations. So we agreed that we would get up at 7 and cut a few corners in getting ready.  I set my alarm and went to bed.  Got up at 4:30, did my thing, went back to bed.  Got up at 6 for another catheter experience and back to bed for an hour.  Next, I’m being awakened at 8 a.m.  Apparently, my alarm did not go off and Lynn had just woke up and needed to be cathed.  I checked but there was no apparent reason that the alarm did not work.  We figured out how to cut corners from our normal 3 hour morning routine to be able to be ready in 1 1/2 hours. We started our scramble doing multiple things at one time to get in all we could.  Our plan could work, PROVIDED his bathroom time went smoothly.

Well, you guessed it….his bowel regiment didn’t work today. That’s not unusual for when we have to go somewhere. Maybe it’s a subconscious fear that it won’t go smoothly that causes his nerves and muscles not to work for success but it’s often the case. Of course today was typical of that.  Two suppositories and a pediatric enema later and we have very return on our investment.  Ugh…I can’t leave him home with folks who cannot take him to the bathroom in the event his GI system decides to become cooperative later so I call and cancel my appointment.  I’ll reschedule eventually but I only have Saturday “coverage” every other week and the next time is my Caregiver Support group so it could be a month before I could reschedule.  Oh, well, what’s another month when I’ve been dealing with these irritating glasses two years anyway….

Actually though, I’m at peace with it.  Normally I get very upset when my plans get sabotaged by uncooperative body parts but for some reason today, it did not upset me at all.  I calmly told Lynn I would cancel my appointment and reschedule and never thought another thing about it.  Why? I never act that way (as I have shared before, when my plans get changed, I get frustrated and then my evil twin comes out) but today I was not upset at all. The way I figure it, God was telling me I should not go today.

I believe there are no coincidences in life.  I think God’s hand is in everything.  Not that he makes things happen, but that he is aware of and working through whatever happens. I do not believe that God does things TO us but that he works within whatever happens to and around us either for our good and that of someone else.  I do not believe he causes fires or earthquakes or terrorist attacks to get even with us but that He allows those bad things to happen and through those struggles we learn perseverance or we are humbled into realizing we need others or for some other reason unknown to us but for the good of someone or something.

Sometimes I wonder, “why us,” about Lynn’s condition. At the time he was struck down by MS, he and I both were extremely involved in our church; we were there almost every day of the week either in choir, drama, praise band, worship, or service.  We were actively serving God and reaching out to share His word but now we can’t even go to church.  We hardly even see anyone.  We went from serving others to being served, and served, and served…and it was a hard transition to make.

I’ve had people from church who come help us out say what a blessing it is to them to be able to do so and having helped others, I know that is true, but being on the receiving end is hard at first.  “It’s more blessed to give than to receive,” is true.  Being the “receiver” was initially embarrassing and humbling but eventually, I learned to accept that we were God’s receptacle for the service of others and to be thankful we had that role.  We have been blessed over and over again by His interventions using others on our behalf.

So why am I not upset today about not getting to my appointment?  Because for some reason, and I may never know why, I was not supposed to go to that appointment today.  Maybe I avoided an accident, maybe it was His way of preventing me from causing an accident due to lack of sleep, maybe someone else needed my appointment more than I did, or maybe it was so I could share my thoughts today with someone who needed to hear them.  I’ll never know, but I do know this….God did not want me to go to that appointment.  My alarm didn’t go off, I overslept, and Lynn’s bowel program all worked together to keep me here–so that’s that.  Not sure what the rest of today will hold but for now, I’m at peace.

Hope you have a good day as well.

Divine Intervention? Read More »

Awesome News, Patrick!

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When I first began to write about my experiences as an MS Caregiver, Patrick Leer was there to share an encouraging word.  Since his first comment on my blog, I have followed his journey in caregiving for his wife, Patti, whose MS has progressed to the point that she is in a long-term care facility ( http://caregivinglyyours.blogspot.com/).  However, not having her at home has not lessened his participation in caring for her.  His dedication to her well-being has been constant and remarkable.  Now Patrick is the one who needs care and support.  Patrick was diagnosed last year with Lung Cancer and a few months ago discovered it had spread to his brain (http://lung-cancer-survivor.blogspot.com/).  After intensive treatment, I am thrilled to share that the brain metastasis is no longer showing on the MRI.  He continues to fight for victory over his lung metastasis but I have no doubt that he will beat that demon as well.  Way to go, Patrick!!  I’m pulling for ya!
Since I have heard about Patrick’s new challenges with his own health, my own personal health and future have been on my mind.  I’m pleased to say that a recent medical appointment indicates I’m doing well other than for on-going struggles with arthritis and the associated pain. It’s odd though how when something starts needling your brain, it seems to come up from multiple sources…
At my last caregiver’s support group at church, one of the participants challenged us to create our own personal mission statement along with a vision for our future and goals to accomplish that vision/mission. Her premise, which I think is spot on, is that we get so engrossed in caring for our loved one that we can easily lose ourselves in the daily struggles.   I totally get what she’s saying because I’m really struggling with even seeing a future beyond tomorrow.
Don’t get me wrong, I’m not being morbid and I’m not depressed, but one of the ways I cope with all that I have to do is not make too many plans beyond today or next week so that I don’t get disappointed if plans fall through. To be honest, if I was not caring for Lynn full-time while trying to work and maintain our home, I would go back to school to get my Masters Degree in Business Administration or maybe Criminal Justice. At the very least, I would study and get my certification as a Human Resources Professional.  However, every time I start to “apply” for one of those, reality sets in. To take a course, you must have quiet time to study, time to think about what you read, complete projects, maybe attend study or project groups, and go to the library.  While I might attend class online, I still have to find time to attend. I currently don’t even have time to read a book for pleasure anymore (I listen to them on tape instead).  I can’t get coverage at night to attend classes and during the day I work; shoot, during the evening and night I work because I get interrupted so much during the day, it takes me 12-hours to work 8 and 7 days to work 5.  So if I signed up for a course, I would flunk out through inability to attend or inability to complete assignments therefore, making that dream unrealistic.
My other desire is to write a book about my experiences as a caregiver.  I really enjoy writing and sharing with others and there might be 10 or 12 people out there who might find what I have to say interesting (those 10-12 include family, friends, and my church).  I know; however, since my husband is a writer, that writing a book takes a significant amount of time and getting an agent or publisher takes even more dedicated energy….not sure I have that available. I expect I would get frustrated wanting to get to my writing when so many other things were calling for my attention.  In fact, I actually started on a book on vacation last summer and da moment to look back at what I wrote since then.  Okay, then strike that goal.
Maybe the secret to this personal vision and goal business is to keep it simple.  So trying to be realistic, I need goals that only take a few steps to reach and limited time and which are in line with what I have to do each day.
Okay then, here are my goals for the future…

  • I want to have sufficient income and low enough debt to retire when I turn 66, the age at which social security says I can retire.
  • I want to be healthy enough that I can still enjoy my family and watch my grandchildren grow up.
  • I want to have been successful in being able to keep Lynn healthy enough that he is still here to share those good times with me.
  • I want to be able for us both to go back to church and participate in worship there among our church family.
  • I want us to both be well enough that on occasion we can leave this house for something other than a doctor’s appointment and actually be able to enjoy the time out without rushing to get back before he “crashes.”
  • I want to go out to dinner in a restaurant and order what looks good including dessert.
  • I want to attend a movie or a play without having to leave early or miss part of it to cath Lynn at least once.
  • I want to go shopping and get a new wedding ring to replace the one the doctor had to cut off my finger last year when I had an allergic reaction to fish oil.
  • I want to take my grandson to the park and play.

My pessimistic side tells me none of the above are likely to happen. My optimistic side says don’t give up hope.  I’ll go with optimism and keep my eye on the goal….Just maybe, I can make them happen.

Awesome News, Patrick! Read More »

The Best Laid Plans…Oh, Forget It

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By far, one of the greatest frustrations I have as a caregiver is that I have no control over what I want to do and when I want to do it. I am sitting here so frustrated at this moment that I can hardly think straight.
Today is July 4, my day off.  However, I actually planned to work today to catch up on some projects at work that I REALLY need to do.  I had my plans all straight but here it is 4 pm and I have not done anything I planned to do.  I could cry.
I took some “me” time last night from midnight to 2 a.m. to watch a movie I rented from Blockbluster (been trying for a week to even be able to put it in the DVD player).  BIG MISTAKE.  It never pays to take “me” time.  I always regret it later.  So anyway, I took the time to watch a movie; afterwards waking Lynn for his dinner (yeah, I know we have weird schedules), feeding him, doing his night routine and then mine, so I got to bed at 3:30 a.m.  Up again at 5, 7, and 9 (Lynn thinking it was 10.  He seems to think he’s my personal alarm clock and heaven forbid I just be allowed to sleep till I wake up on a day off!) to cath him. I go back to bed to sleep till 10 so I get 5 3/4 hours of sleep (15 min per cath event).  Getting up at 10, of course, makes me  late getting started but I figure, we have nothing special we have to do today, I’ll easily get started by 1 with what I need to do.
Then the day precedes to be shot to h___.  I do the morning prep work while he does his vocal exercises.  I take him to the bathroom and it doesn’t go as expected.  He has to use suppositories due to limited muscle strength and it didn’t “come back” like it should.  That means disaster.  Now we’re waiting in the bathroom and he decides he needs to pee (why couldn’t he have gone before we go the bathroom–yeah that doesn’t make sense to you unless you know that the cath supplies are in the bedroom not the bathroom). I finish that, get him cleaned up and then he announces he wants to sit in his manual wheelchair (he’s trying to toughen up his butt in hopes he can tolerate the cushion in that chair and maybe go to church again one day).  That means rearranging various pieces of equipment to get the manual chair out of of that room and putting him on it instead of the power chair.  That done, we go to the kitchen for his morning pills.
In the kitchen he takes his meds and decides he wants me to put weights on his wrist to work his arms.  That done, I turn to begin preparing my meal….no wait…. he needs me to help him with his arm exercises.  I do that, then take off the weights, and begin to get ready to take him back to his room. No wait….”I want to do pull downs in the weight room,” he announces.
I again go to the weight room (which I had just rearranged to get the manual wheelchair out), rearrange it again to get it ready for him and back I go to the kitchen to get him.  I roll him to the weight room and help him do the pull-down work out and then take him to the bedroom to set up the massager for his feet. I then go to start my breakfast (two hours after I get up) and eat.  While eating I prepare mushrooms for roasting, and cook spinach for his diet; also make his soup for lunch.  As I finish, I hear, “Sweetie, come back. I need to go to the bathroom again.”  Large GROAN.
With sagging heart, I go and take him back to the bathroom (remember, I only do manual lifts so I’m physically lifting him in and out of these wheelchairs and onto the toilet).  He “goes” and then says he might as well lie down awhile so I roll him to his bed.  “Oh, yeah, I want to do  push-ups.” Seriously???
I get out the PVC work-out pipes that I insert under his mattress (out of the weight room, of course) and help him do push-ups.  Then I settle him down for a nap (put his pants on him again, cath him, put his boots on him so his feet don’t cramp, get the TV set for viewing, wash his face, and straighten up the room.)
While he’s down for a nap, I just finish cooking what I put on while eating, washing the dishes and doing a load of laundry when I hear, “I’m ready to get up.”  I get him re-dressed, hook him up to his peddlar,  hear “I’m hungry,” so I feed him breakfast and as I finish feeding him, hear, “I need to go back to the bathroom again.” Major sigh…..
Back to the bathroom, back to bed, redress, get him back up, reconnect him to his peddlar, make him tea, cath again, and do a few adjustments, and now it’s 4 pm.  Six hours after I get up, I’m finally finished with his morning activities and I’m ready to “start” my day.
I give up! I think I’ll just take the take “off.”  After all, it will be time to cath him again in thirty minutes (true enough, he called to be cathed again at precisely 4:36) and he’ll want a snack 30 minutes after than, and then more tea, followed by another cath…..
So much for my plans.
I know none of the above was unnecessary for his comfort and well-being.  I know that he hates the fact that he had to disrupt my day so much (and I’m sure he hated hearing my complaining about it even more).  But that doesn’t change the fact that it’s depressing to have so little control over my plans. I’m tired of being unable to plan anything and I’m tired of disappointments but most of all I’m tired of the fact that I haven’t found a way to not let it get to me.
I really wish it didn’t. I wish I could laugh it off and just roll with the punches but that “funny bone” just ain’t working right now.  Could be lack of sleep; could be the fact my arthritis is really bugging me; or it could be….I’m just feeling sorry for myself and making it all about me.  It’s not all about me and it’s not all about him.  It’s all about us.  We’re in this together and I need to keep my perspective on it.  In the scheme of my life right now, not being able to work on writing policies for my job is not a big deal. Being able to make him comfortable and take care of his needs IS a big deal. I just have to refocus and get my perspectives right.
Hmmmm….I think I might just have the thing to do that…I think I’ll go make a slushy out of watermelon….yeah, that will make it all better.
Happy 4th of July.

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See Me Through His Eyes

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I’m ashamed of how much I complain to Lynn about the things he asks me to do.  If he calls me to cath him and it’s only been 40 minutes I’ll say something like, “you’ve got to be kidding!  You couldn’t possibly need to pee again this soon.”  Today I was gripping because he now eats four small meals a day rather than three times a day. That’s one extra 30-minute period for me to prepare his meal and feed him.  When he wanted to exercise, I sigh and say, “Guess I won’t be making that phone call I need to return.”  I say things all the time to make him feel guilty for asking for my help!  I don’t see how he puts up with me or why he still calls me his sweetie.
Thinking about how I must make him feel, I envision what his world must be like with me in it.  I want to share that with you and hopefully remember it myself the next time I start whining and complaining.
————————–(this is how I imagine Lynn thinking to himself)———————–
I wish I could go back to sleep. It’s 7:30 a.m.  Is Donna getting up at 8 today or 9?  I really need to pee but I had her up twice last night and I know she needs to get some sleep.  Maybe I can wait…
Did I hear her? “Donna, are you awake?  I hate to wake you up but I really need to go.”
Donna: “I’m awake now.  Can’t you hold off a little while longer?  I’ve only been able to get five hours tonight.”
Lynn: “I’m sorry but I really do need to go. I’m so full, I don’t think I can hold it much longer.” I hope this is not a false alarm.  I really don’t want her to be miserable all day and I hate to interrupt her sleep like this but I feel about to bust. 
Donna: “Okay,” (heavy sign) “I’ll get up.”

(an hour later after he has done his vocal exercises)

Lynn:  “Do you have time to help me exercise?”

Donna: “What do you want to do?  My hands are really hurting this morning and so is my back.”

Lynn:  “Can you help me with the Tram?”

Donna:  “I don’t know.  I need to check emails and get things ready for us to go to the chiropractor today.  I really need to get back to xxxx.  Maybe if you don’t ask me to do anything else afterwards, I can fit it in.”

Lynn:  “Maybe I should wait and do it tomorrow.”

Donna: “No, you want to do it today so we’ll do it today. (heavy sigh)  Just let me figure out how to fit it in.”

Lynn:  I don’t want to bother her but it’s been a week since I was up on the Tram and if I let it go much longer, I’ll stall my progress. I’ll try to do it quickly so I don’t bother her any longer than necessary.  “Thanks.  I really appreciate it and I’ll try to keep it quick.”

As I rush out to get breakfast, Lynn thinks, I hate being such a burden.  I know she’s doing the best she can and she doesn’t have enough time like it is.  I know I shouldn’t add to her work but if I don’t exercise, I can’t get my strength back and I’ll never be able to help her around here.  I want to be her husband again.  I want to take care of her and do the yard work.  I want to fix the front porch rail and get the windshield wipers changed for her on the truck. I want to take her places with me driving so she can sleep in the car or read like she used to do. I want to earn a real living; not just get a few dollars from disability.  I want to take the load off her shoulders.  I’m her husband.  I want her to see me that way again and not have her think of me as one of her children to care for or worse yet, a job she has to do.  I’m afraid she will grow to resent me and my demands on her time, but I get so cold if I don’t drink hot tea and then I have to pee so often when I do. 

“Donna, can I have some tea?”

D___ I dropped the remote. I hate this show.  I’ll type instead.  Let me send another query letter out for an agent. …I’ve written that paragraph four times now and I’ve lost it each time.  My computer is acting up. Maybe she can help me  figure out the solution.  I’ll ask her when she comes back… but I know she doesn’t have time.  Maybe I can get her to help for just a minute though.  Maybe she won’t be as bothered with me if I get her to do everything while she’s here and not have to call her back anymore…

—————————————————————————————————–

In my mind, I imagine those types of thoughts go through his head every day.  I know he hates to be a burden. I know he doesn’t feel like a man and that he’s eager to get his book to sell, not for the glory, but so he can bring money into our home to help relieve some of my struggles. Lynn is very thankful for what I do for him.  He gives me a lot of praise and signs of appreciation.  I’m very fortunate, he is so thoughtful and doesn’t make my caregiving experience so much harder than it already is. I’m a lucky woman; so why am I so critical and complain so much?

Lord, forgive me. Help me to see through his eyes, to feel through his skin, to hear with his ears, to feel his pain and frustration.  Help me to see the man I married and not a patient demanding my attention.  Help me to show compassion and love, respect and gratitude, encouragement and hope, and most of all faith in You that you will see us both through the good and the bad times.

Amen

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Call If You Need Anything

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Ever had this conversation?
“How’s (insert family member’s name here)? You know, that if you ever need anything, anything at all, that all you have to do is call….”
Really?  In my experience most of the time that is a polite way of letting me know the person cares and at that time, they certainly mean they would be willing to help, but they hope secretly that you’ll never actually call. Getting unsolicited offers of help is rare and asking for help is just hard.
When Lynn first got sick, I always declined offers of help.  For one thing, I didn’t want anyone to think I couldn’t handle it.  He was “my” responsibility and I didn’t want anyone saying I wasn’t doing well by him. The other reason though was that Lynn had still not come to terms with his condition and he didn’t want anyone to see him so dependent on others.  In fact, when we had visitors he would stage an appearance.  His clothing had to be reminiscent of the clothes he wore before his disability.  He only ate what he could manage himself.  He would slip in and out of the gathering discretely so people would not notice him needing special attention.  He would also push himself to talk more and do more to the point of exhaustion most of the time.
As I became more exhausted from caregiving 24/7, I began to realize I had to have some help but I was still reluctant to ask for any. What a blessing it was to have someone come and offer to do something specific for us!  Offering to come to stay with Lynn so I could go shopping for supplies, to cut the grass, to prepare meals, to help me get my car repaired–all these are things I need help with, and the offer to do them for me would certainly be received favorably by me.
I realize most people don’t know what to offer and are concerned about offending me by offering to do housework or other similar things.  Trust me, I’m not offended!  Anything that I can cross off my list is something I don’t have to worry about getting accomplished and is appreciated.  So, if you’re wondering how you can help someone who is a caregiver, here’s what I would recommend.
1.  Offer to do something specific.  Think about what is a task that takes a long time or may require special skills.  For me, now that summer is here, I need yard work done. I can’t go outside and mow the grass because I cannot hear Lynn call for me and if the phone is on vibration, I can’t feel it if I’m riding the mower.  I need the grass cut, weed eating is done, grass in the driveway sprayed, repairs done to the rotten rails on my front porch, trash taken to the dump (I live in a rural area where we actually take the trash to the dump ourselves), or similar things.  I finally hired a maid service so I no longer need my house cleaned but shampooing the carpet, helping to pack up things to take to Good Will, you know all those weekend projects that take a lot of time, would be suggestions on how people could help.
2. Offer to stay with Lynn for an extended period of time.  It’s very difficult to find someone to stay with Lynn for long periods so I can run errands on the weekend.  Most people work and have busy weekend schedules themselves so setting aside an extended period to be a companion to someone is not a favorite pastime.  Also, some are intimidated by his condition.  Since he cannot do much for himself, they’re afraid he will need something they can’t handle or that they will hurt him in some way.  I remind people that he’s not fragile.  I always take care of his medical needs before I leave.  Really, all they need to do is help him with food, typing (if they know how), drinks, and other comfort items.  He really doesn’t need anything special; just someone to be his hands and feet for a while.
Once the offer is made and accepted for a specific job, there are some caregiver etiquette rules I would recommend you observe.
1.  Treat this as a job.  If you can’t come, call in advance; give a specific time and be there at that time; be prepared to stay as long as you said you would and build in a little flexibility with the time so the caregiver won’t have to stop in the middle of shopping to rush home before the sitter has to leave.
2.  Realize you are there to help out; so help.  I’ve occasionally seen people offer to come help but when they get here, they sit back and do nothing. They are just here in the body only; not connected to the needs of the patient. If you’re here to help, ask the caregiver what they need and then jump up to help promptly if the patient requests help rather than letting the caregiver still do the work.
3.  Don’t tell the caregiver, “You just have to take care of yourself better.  You need to start exercising and getting more sleep.”  When someone says that to me, I want to say, “Don’t you think I would do that if I could?  There are only so many minutes in the day and if things have to get done, there is no one else here to do them so ‘taking care of me’ will just have to wait.” They mean well but they just don’t get it.  Telling a caregiver to do something more, even if it’s good advice, just means more for us to do and it takes, too, much energy to even think about that.
I have been very fortunate because Lynn and my family are wonderful about helping us out; plus we have our church family who comes through for us all the time; however, so many caregivers are not as fortunate as me.  It’s hard to ask for help and it’s even harder to relinquish our loved one into the care of someone else but it’s a blessing when we can get some relief; some time away for ourselves or to do the things that need to be done but can’t be when you’re caring for someone.  Thank the Lord above for the angels He sends to help.  I know I couldn’t have made it without them.

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Loss of Intimacy?

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When my role as a caregiver became more demanding, I found myself acting more as a caregiver and less as a wife.  In the early stages of MS, Lynn still worked, drove himself around, completed projects, and helped me with things I needed.  He shared in the responsibilities of the house and we shared our lives as a couple. While he needed some assistance, particularly at night when he was most tired, he was independent in his own care and was still functioning as a husband, making decisions about our future, making sure maintenance of our home and vehicles occurred, taking measures to ensure our safety and securing our resources.
Then came the day he was home alone, fell, and could not get up.  He was stranded for almost three hours lying next to a heat register, getting overheated, alone and totally helpless.  It changed him. After that, he was afraid to be alone.  He didn’t want me to leave the house and was even reluctant to let me leave if someone else was with him.  He began to rely on me for everything.  He was afraid to try walking with his walker anymore unless I was right there.  He became very depressed and struggled with the realization that he was becoming or had become DISABLED.  It was at that point that our roles changed.  I became his caregiver and he became my “charge.”
Within a few months after he fell, his condition deteriorated to the point he was hospitalized and was in and out of the ICU during three separate hospitalizations.  By that point, I was responsible for everything–all decisions; his protector; his liaison with the outside world; his life-extension. When we left the hospital after the first admission, we left with him as my patient and only an essence of my spouse.
That was 2 1/2 years ago. He’s much better now, physically and mentally, but the aftereffects of that time remain.  He has use of only one arm and hand which becomes essentially no use of limbs by night fall.  I position his body for him so that I can dress him; I manually move him from bed to wheelchair; I position his arms for comfort and his legs/feet go into his peddler so when his spasticity gets uncomfortable, the movement can relieve that.  He does not have the strength of movement even when he does move his limbs for effective action.  He cannot even scratch an itch or wipe his eye of sweat.   That being the case, when the person you love cannot left their arms to hug you or tighten their muscles to embrace you; how do you maintain intimacy?
We are fortunate in that Lynn’s mind is still very active and engaged.  Though we can have no physical relationship, we do have a spiritual and interpersonal relationship.  We are still able to enjoy a television show or good movie together.   We discuss the news.  We share in the joy of parenthood and now grand-parenthood.  We can still send each other special smiles and looks and we still strive to support and encourage one another.  We still have companionship and for us, that has allowed us to continue as a couple.
I have talked to others whose spouse has withdrawn from being engaged with the events around them or who can no longer remember the here-and-now but instead lives in the yesterdays of their minds.  For them, the person they loved no longer exists in the presence other than as a responsibility.  They still love their spouse but the person who “was” no longer “is.” Therefore, they carry on in a one-sided relationship becoming the caregiver who functions not as a partner, but as the one responsible for everything that needs to be. That type of relationship can be very lonely. Though someone else is present in the same home there is no companionship; no sharing; no refuge from life’s challenges by being able to unburden their load with someone else.  They now have to receive their satisfaction in the relationship though the knowledge that they are making their spouse’s life better, their life expectancy longer, their potential for greater recovery an option.
I am very thankful that I am not at that point yet.  I dread the day that may or may not come when Lynn doesn’t recognize me or where we live.  I know if that day occurs, the burden of caregiving will seem greater unless I prepare emotionally and mentally for what lies ahead.  It’s possible Lynn will not develop memory or cognition problems but many MS patients eventually do.  However, for now, I’ll feel blessed that he “has all his oars in the water,”   and I send up prayers for my friends who are not as fortunate.

Loss of Intimacy? Read More »

Life's Precious Balance

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As winter progressed to spring this year, Lynn was finally beginning to feel less fatigue, his muscles were getting stronger, his reactions to the Rebif injections were becoming less and less and it seemed that he was finally over the hump of recovering from his hospitalization in 2010, the anemia afterwards, and then the adjustment to the Rebif.  He was feeling good.
We set a goal of returning to church the first Sunday in April and were really getting excited about our plan to re-enter the fellowship of our church family. He started trying to get acclimated to his manual wheelchair so he would be able to tolerate sitting in it for up to two hours (our church elevator is old and cannot accommodate his powerchair so he would have to use a manual chair for the service and the 30-minute trip there and back).
That first weekend in April rolled around and he just wasn’t feeling himself.  We waited till the last minute but finally had to say, “no,” to our plans to go to church that Sunday.  We figured maybe it was the pollen build up because that always affected him.  Then the next few weekends after that, we had Daniel and Katie’s wedding so those activities were tiring him out, we said.  Each week we tried to figure out what was going on?  He said he was feeling like he felt when he first started Rebif.  Why was he going backwards?
I think this week we might have an answer.  Lynn asked his doctor to order some lab work on the recommendation of his dietician to find out why he could not lose weight.  He had been steadily losing about 1/2 to 1 lb. a week since he started trying to lose weight in January but around March/April he hit a plateau and no more was coming off.  Since Rebif can affect blood cell production and liver/thyroid function, we also asked for those values to be checked.  The blood work results came back this week and his thyroid TSH is up.  There’s our answer!  The Rebif has reduced his thyroid function so that he has developed a leaning toward hypothyroidism.
If you’re not familiar with hypothyroidism, symptoms include, among other things, fatigue, weight gain, and feeling cold.  All symptoms that Lynn has been experiencing and which have been getting progressively worse over the last several weeks.  Fortunately, the “fix” is an increase in his thyroid medicine so we know he will get better but often it takes several weeks to notice an improvement.  There goes most of the summer….  Hopefully he will be back to normal or at least less miserable when we go on vacation at the end of August.
When we figured out what was going on, what struck me is how tenuous  our health and, by association, our happiness is.  The thyroid gland is not very big but it carries a significant role in the health of the body.  A little too much or not enough hormone being released and it makes you feel like you’ve been run over by a tank, scrapped up, and then fed through a shredder.   That’s true though for so much of what makes our bodies work.
Have you noticed that if you get a paper cut on your finger or a blister on your toe how you are aware of that pain in your subconscious all the time?  Something so minor will make you favor that appendage.  By favoring that body part, it puts a strain on other body parts which in turn start complaining.  If their complaints are ignored too long then they malfunction in some way making them the center of attention and resulting on other areas adding their voices to the mayhem. Let one little area get off track and the precarious balance we count on for health and happiness comes tumbling down.
That’s not only true for health but also everything else in life.  Too little sleep, too much food, not enough water, too many activities….  Too much or too little of anything and our world tilts.  Reminds me of the advise I’ve received so often, ” Practice moderation in everything.”  It’s good advise.
As a caregiver finding balance is very difficult.  Maintaining balance seems almost impossible.  Just when I think I’ve got it all under control, something changes.  I get a new project with a short deadline at work.  Lynn’s health gets worse and he needs more attention.  One of my kids has a problem or is reaching a milestone in their lives that I want to share. I know that’s true for everyone but for caregivers I think it’s even more difficult to manage.
So much of our lives are not under our control.  We manipulate events to handle them the best that we can, but I don’t think we have much control.  I’ve found, in fact, that the more I try to control, the more depressed or overwhelmed I get.  When I’m smart, I recognize that fact and turn it over to God to manage.  When I don’t turn it over right away, then I just suffer longer and finally have to go there anyway.
Being a caregiver has convinced me more than almost anything else that I’m a created being and that my world was likewise created.  The very fact that imbalances wreak havoc tells me that something with intelligence had to have put this all together. I’ve looked at mud puddles and they aren’t very smart.  They just sit there and let things fall into them or they dry up and go away with the sun’s heat. Therefore, I cannot believe a glob of goo millions of years ago suddenly came together to create any of the things I see before me today.  Same goes for a big bang…I’ve seen fireworks and all that comes from them are sparks and maybe a fire if they’re too close to trash.  It takes a whole lot more faith to believe in either of those theories than it does to believe that a rational, intelligent being created man and this earth.
Enough on that soapbox…it’s just that I realize how complex life is when I see how a small wound, a change in lab values, or too little rest can throw us off-balance.  It makes me appreciate having a routine and the common sense to realize that having “enough” is enough.
I WISH YOU ENOUGH
I wish you enough sun to keep your attitude  bright.
I wish you enough rain to appreciate the sun  more.
I wish you enough happiness to keep your spirit  alive.
I wish you enough pain so that the smallest joys  in life appear much bigger.
I wish you enough gain to satisfy your  wanting.
I wish you enough loss to appreciate all that  you possess.
I wish you enough “Hello’s” to get you  through the final “Goodbye.”
– – – written by Bob Perks, P.O. Box 1702,  Shavertown, PA 18708-1702, USA

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Accepting What You Grow Up With

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When I was young, no one in my immediate family had any type of visible disability.  I grew up in the “country” and all the adults and children were physically active and spent a lot of time in physical labor.  I remember helping my parents build the homes of other family members. By the time I was twelve I had helped lay cinder block, shingle a roof, painted walls, hammered nails, dug in gardens, cleared land, etc.
My story was typical of the experiences of others in our community (we didn’t have neighborhoods per se because most houses had at least a few acres around them so all our neighbors were further away than a stone’s throw).  I knew or was related to almost everyone for miles. There were a few people I knew who had disabilities, but not many. I had a great-uncle with no arms. There was a family that lived next door to my cousins where the parents could not hear but their child could.  I also had a third cousin who was paralyzed from the waist down and who was married to someone who had survived polio and walked with leg braces. Other than that, I can’t say that I was aware of disabilities at a young age.
I remember as a child being very curious about how to talk to Mamie Lee and Tommy who were both deaf when they first moved in beside my aunt and uncle.  My cousins knew some of the sign language they used because they were related to them on their father’s side. I remember trying to learn some of the signs because I thought it was a neat way to talk.  They seemed to understand what we said, but I couldn’t understand them as well.  They were good at pantomime though so it was no big deal to get a message across. I didn’t really consider them disabled; just different. Though they couldn’t hear, as a kid I sort of liked that about them because it put us kids at an advantage–we could be as loud as we wanted when we were at their house and not get yelled at; plus we could sneak into rooms which were off-limits usually (though Mamie Lee was amazing at seeming to know what we were up to anyway).
I also remember being curious about my third-cousin, Glenn.  He was paralyzed due to a car accident.  I would watch in fascination as he would drive his own car and then, by himself, remove his wheelchair from behind his front seat and transfer himself into it.  Though he had no use of his legs, he was very able-bodied.  He was a watch repairman and an awesome banjo picker.  He seemed to get around as well as anyone and seemed happy most of the time. His disability; however, being visible was more obvious and the need for us to help him when he visited was apparent.  For example, when he visited, we either all stayed in the yard to visit or Dad put up planks so he could be rolled into the house.
Then there was Uncle Grover… a truly amazing man.  He was an excellent plumber.  He loved to fish, grow his own garden, drive a stick-shift truck, and knew how to do just about anything.  He also had no arms.  One was lost in a hunting accident and one got catch under a mill-wheel and was ground off.  I never thought of him as disabled either; only amazing to watch how he was able to do things with his stubs. I do admit though sneaking sly glances at his stumps and wondering about them.  He caught me looking once and took the time to show them to me and answer my questions about them.
I’m sure there were others who had physical limitations and some that I knew about but just didn’t see as often so they did not make an impression. I heard about a distant cousin with MS but never saw him.  We had a few relatives with dementia; one with schizophrenia, I believe, based on what I now know about the condition.  My point in this “memory lane” experience is that maybe I don’t remember them as being disabled because we only see someone as disabled when they are not part of our lives.  If we grow up around someone with a disability, then they just have a different “normal.” The need to accommodate them becomes an assumed responsibility and we automatically adapt.  We can talk about their situation, ask questions, and learn how to interact with their physical challenges so that it is no longer a mystery that stands out as being different.
You may be wondering why this was on my mind…
I was watching my grandson yesterday around Lynn.  Eli is at the age where he crawls everywhere and now that he’s out of the hospital, his feeding tube has been accepted by him as just another piece of clothing that sometimes gets in his way.  Other than that, he does not pay attention to it.  On the other hand, he is fascinated by his grandpa’s wheelchair and other mechanical devices.  I can put him down anywhere in this house and he makes a beeline to Lynn’s room to see if he’s on his peddlar or foot massager.  Eli loves both (so does Lynn). He also loves to check out the wheels and “drive” the controls on Lynn’s wheelchair (obviously we cut off the power when he does that or else Lynn would likely drive through a wall).
I wonder if Eli will grow up with a different understanding of disability?  Hopefully, he won’t have his feeding tube for many months so that will not be his point of reference; however, seeing his grandfather unable to care for himself and learning that special consideration is needed for him, will that make him view others in their wheelchairs as “normal” like his granddad? I hope so.  I hope that his exposure to caregiving from being around us will make being around others with disabilities something he just accepts as a different normal.  I hope when he looks back on his childhood, as I did above, he will remember the funny stories of meeting the challenges associated with the disabilities and be amazed at how well the disabled adapt to their worlds.  I also hope that he will be able to help others understand wheelchair etiquette and learn to view the surroundings for obstacles that make participation by the disabled a greater challenge…and assist in removing those obstacles.
I fully believe that God puts people and experiences in our lives to prepare us for situations in the future; sometimes to help others but also sometimes to help us.  Eli will have skills for caregiving and compassion that he would not have if his granddad was not in a wheelchair. Perhaps God is using Lynn to show Eli a way of life that He will ask him to incorporate later into one of His missions for him.  It’s a nice way of viewing Lynn’s disability as having a greater purpose for the good of others.

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Second Generation Caregiver

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It would seem that as of this week, my daughter has officially become a caregiver thus establishing a second generation of caregivers in our family. In reality, she has been a caregiver for many months now, but with the hospitalization of her son, my grandson, it now seems official.
Eli will be one year old on Memorial Day. He is full of energy never wanting to stop exploring his world.  He notices everything and remembers what he sees.  He’s becoming independent crawling wherever he wants to go with determination.  He pulls up and walks around things holding on so it’s just a matter of time before he takes off running across the floor.  He has a smile that will light up the room.  He LOVES people.  He has never met a stranger (yeah, that means we will have to watch him closely) and he makes whomever he sees feel as if they are the most special person around.  He’s adorable.  He also weights only 15 pounds (he weighed eight at birth) and is the size of a 5-6 month old.  He stopped growing around five months.  While most children by age one are eating finger foods and sucking down 7-8 ounces of milk, we’re lucky if we can get 3-4 ounces in him at a sitting or 1-2 teaspoons of level 1 baby food.  He just won’t eat and what he does eat, he burns off.
Until last week he was classified as “failure to thrive” with stunted growth.  He grew a little in height but did not put on any weight and was then reclassified as mildly malnourished. With malnutrition, if it progresses in severity, it can result in organ impairment or collapse and brain damage–all serious stuff.  So he’s now in the hospital with a feeding tube trying to boost his nutritional status.  If he doesn’t drink at least 3.5 ounces at a feeding the rest is added by feeding tube.  At night from 9 p.m until 7 the next morning he gets a continuous flow of formula (about 2.5 ounces per hour).  The process seems to be working.  He has put on 2 ounces since he was admitted on Thursday; however, he still does not take the food in himself so that tube is going home with him.
Since Eli was born, he has had difficulty with his feeding.  When very young his cried a lot and could not be calmed very easily.  Then he realized he could refuse to eat.  Now he takes in just enough to no longer feel hunger (or so it seems) and then he clamps those little lips like a vise–so something is wrong but what, we do not know. Therefore, Sarah, his mom, has officially become a caregiver.
All moms (and dads), of course, are caregivers–without them children would have a difficult time living very long; however, when a child develops special needs, that caregiving challenge doubles or triples.  Like me, Sarah rarely gets adequate sleep. Eli does not sleep well and needs assistance to fall asleep (we now know that is probably due to acid reflux causing him discomfort).  She breast feeds so every night around 4 a.m, she has to pump to make sure he has enough to eat since breast milk is his only nutrition.  Since he’s so active, he needs constant interaction and observation even with the help of baby safety devices (it’s amazing how he gets around those things). She has to fix him special formula to supplement her milk.  Feeding him takes 1-2 hours to get 3 or 4 ounces in him. Then once he has finished with milk, she has to try the baby food.  Once that is done, it’s time to get the next bottle ready, so on and so forth.
Eli will likely be in the hospital for 1-2 weeks while they see if he continues to gain weight and while they try to determine why he won’t eat in the first place.  Once he comes home, Sarah will be managing his feeding tube.  If he pulls it out (which he has done every day he has had it) it will need to be reinserted.  That takes two people.  Since I have had more experience inserting feeding tubes in my former nursing career, I offered to do the insertions for her (which she gladly accepted). It’s going to be very tough on us both because it’s not fun for him or us trying to get that tube through his little nostril, down his throat and into his stomach and not his lungs. Being nurses, we both know if it comes out while he’s feeding, he will likely get aspiration pneumonia which could be critical.  There is also the trauma associated with the people you trust holding you down and forcing a tube down your throat.  That’s traumatic for us all actually.
As a second generation caregiver, Sarah knows how her life will be centered on her charge.  She will eat and rest only when her patient does not need her.  Her first priority will be her patient; her child; and ensuring that he gets the care he needs as safely and expertly as possible.  All this she will do while at the same time probably neglecting her own health.  She found out the Monday before his admission that she has osteoporosis.  She has already broken three ribs just by bending over things. If she falls, she could break something else that will interfere more with her life.  They currently have no idea why she has developed osteoporosis at 28 years of age so it’s important for her not to ignore this.
That’s where I come in.  I’ll be her backup caregiver for Eli as she is now my backup caregiver, (along with Lynn’s son, Eric) for Lynn.  We will be the other’s support system and resource.  While I never wanted my child to have to become her child’s caregiver, I know he’s in good hands.  I also know that God will give her the help she needs to make it through this.  She has a wonderful, supportive husband and other family members she can also call on for support so though it won’t be easy, she’ll make it though and hopefully this will be a short ordeal without long-term consequences. 
I hope so.  Having one full-time caregiver in this family is quite enough….

Second Generation Caregiver Read More »

Caregiver or Mom?

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Happy Mother's Day
Happy Mother's Day (Photo credit: Wikipedia)

Having just celebrated a great Mother’s Day with my three children and their spouse’s, I couldn’t help but think that although my kids are all now grown, my mothering days are not over. I’m not referring to my status of “once a Mom, always a Mom,” which is certainly true but I’m talking about how being a caregiver is much the same as being a mother.
As a Mom, I did everything I could to keep my kids safe, happy, and well.  As a caregiver, I do the same.  Whenever I’m in the presence of my “child” (Lynn in this case) I watch for signs of danger.  Is he about to run over something with his wheelchair that might topple him over?  Has he allowed his food to sit out too long without being eaten so that I need to throw it out?   I even automatically throw my arm out in front of him when I have to stop quickly!  (He always asks me what I think that will do to protect him since he is bigger than I am but what can I say, it’s an automatic reflex.) I always reach out to protect him from whatever dangers I feel might be lurking around. 
I also protect him from “bullies,” others causing him harm in whatever fashion,  by overseeing his health care, going to bat for him in defending his rights, making sure all his “stuff” is secure and cared for.  I am his “mamma bear” protector in the same way that I was to my children.  When I feel a doctor or other healthcare worker is not paying attention to his needs or missing something that I think is important, I step in. If I think someone is trying to take advantage because of his condition, I’m ready to go to battle.  I am his protector….Just like I did for my kids….
When I was raising my kids, I liked to always see them happy. I do the same for Lynn (and have the same challenges and defeats as I did for my children.)  I try to make sure he has what he wants; that he has entertainment and fun in his life; that he feels comfortable and secure. I try to keep his fears at bay and lighten his load so that he doesn’t worry or become depressed.  I try to keep him “happy.”  Hum, okay, I admit, that’s not always true but it wasn’t always true for taking care of my kids either. There are days that I strike out with my sharp tongue that can be cut like a knife.  I don’t always protect his feelings and I often fight back when I think I’m being taken advantage of but overall, I’m very sensitive to his emotional needs.   I try to help pick up his spirits if sad. I comfort and encourage him when he’s down and discouraged.  I bolster his ego and am his cheerleader.  I’m the proud Mama clapping and shouting for joy when he gets good news about his book promotions or gets a good book review.  I glow with pride when I hear him sing knowing that God gave him that voice to praise him (and praise him, he does).  All these emotions I have for him and give to him; I had and gave to my children as their mother.
Another goal I have is that I strive to keep him well.  Now as a caregiver, I seem to spend most, if not all of my time, in this category.  What I feed him, how I care for his physical needs, where I step in to ensure he has a balanced life; all these actions are done with the goal of keeping him well.  I make sure his food provides the best nutrient balance to fight MS.  I assist with his physical therapy to keep his muscles, respirations, and circulatory system in the best shape possible.  I see that his hygiene is kept up and watch for skin breakdown or discoloration that could indicate a problem.  I try to make sure he rests when he shows signs of being tired and I attempt to keep his life a balance of stress and joy. All this is done for his well-being.  All of this I did for my children and their well-being also.
So being a caregiver is essentially the same job description I had as a mother, EXCEPT as a Mom, I knew I was “growing up” my child to go out on their own.  I was giving them the best start they could have in life and laying a foundation for them to enter their adult life with health, knowledge, abilities, and emotional strength so that they, in turn, could raise their own families and be successful in their own right. 
Not so as a caregiver. 
What I do each day as a caregiver is not to prepare my child for a future to go out on their own but instead to continue in this life at my side and under my care for as long as they live or as long as I am physically and mentally able to do so.  He will not “leave the nest.” If he leaves its for a worse situation; not a better one (except personally, I have a strong belief that heaven is an awesome place and much better than earth could ever be; so in reality, it would be a better place for him; just not the dying part). For us, right now, there is not an end in sight, for which I am fortunate because as a caregiver to someone with an incurable condition, an end means THE END and is not a happy goal to achieve.
So as I reflect on Mother’s Day, I realize, I have my three children, my three children-in-law, my grandchild, and my spouse-child.  I have a house of children and in my opinion there is no better (or harder) job in life than being a Mom. 
Thank you, God for blessing me with my children.

Caregiver or Mom? Read More »

Has Anyone Seen My Magic Wand?

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When you are a caregiver, you learn to multitask and plan ahead… or you don’t survive. Once you get good at doing these two things, then others, especially the one you’re caring for, seem to think that you can do anything…like magic.
It mystifies me that I can tell Lynn what’s on my “to do” list and thirty minutes later, he thinks it’s done.  He has no concept of how much time it takes me to accomplish a task because he has no idea of what happens when I go to do a task.
Let me give you an example which will be very familiar to many of you:  going to the kitchen to get a snack for him after finishing his bath. It goes something like this…
Lynn:  “Donna, can you get me an apple and some hot tea?”
Donna:  “Sure, in just a minute.”
I  prepare to leave the bedroom but before I do, Lynn wants just a quick adjustment to his clothes, then he needs to scoot back in his chair, just a few squirts of nasal saline (more like 15 per nostril), then another adjustment, change the channel on the TV, and close the door to his room to keep the heat in. Leaving the room, I gather the dirty clothes discarded after the shower and the empty tea mug.  Going down the hall, I realize he’s almost out of shorts so I stop to get the dirty clothes from the hamper, dump them and the other clothes in my arm in the washing machine and start a load of laundry.  I prepare the tea and put it in the microwave to heat up, wash the apple and slice it into pieces he can hold on his own, rinse out the dishes in the sink, load the dishwasher and start it washing. Meanwhile the tea is ready, I transfer it to the mug he can hold, add favoring, put the apple in a small plastic bowl and take his snack back to him.  As I’m heading down the hall he’s saying, “Donna, did you forget my tea?”
Now, to his way of thinking, I only got his snack, but in reality I was evaluating future needs, planning and putting that plan into action to prevent problems later on so that miraculously, he does not run out of his favorite shorts and socks and he always has access to the dishes he can manage on his own.  Just like magic.
What brought magic to mind was that he got a call today from a relative who wanted to stop by and see him on Sunday.  I had taken him the phone so I knew he had talked to someone.  When I was in the room later, I asked him who called and what the call was about.  He told me it was someone he rarely sees and then casually mentioned they were coming over on Sunday.  I stopped dead in my tracks, “Sunday?  Are you kidding?  What are you thinking?” (yes I was a little put out).  The rest of the story…Sunday, we have tickets to go to Virginia Beach to see a Rush concert.  It’s a two-hour drive down there and we plan to leave at least three hours before the concert.
Lynn’s response:  “What’s the problem?”
Me:  “The concert is Sunday.”
Lynn:  “So?  They’re coming at noon and we don’t have to leave before four.  We have plenty of time.”
Me:  “They rarely see you. They aren’t likely to just come in and immediately leave.”
Lynn: “They probably won’t stay more than an hour.  That gives us plenty of time.”
And that’s the statement that got to me.  “That gives us plenty of time.”  For him, going to the concert just means driving his wheelchair out to the van and climbing aboard.  For me, it means, getting us both dressed.  Preparing him food to take with us, packing layers of clothes because the temperatures are supposed to drop. Packing fluids, medications for spasticity, and other meds “in case of;” thinking through what all he will need for comfort; figuring out how to get everything packed in as small a bag as possible. Getting the van gassed and ready to go, getting directions, making sure I have the tickets, spare money for snacks, emergency supplies in case we break down; and since we’ll be getting back late, planning for what we will need immediately upon our return so we can get to bed as soon as possible.
I have a load of things to do before we go but for him, it’s just a matter of going and all his needs are met. It’s like magic. .. only it’s not.  It takes a lot of hard work and planning.
As a woman, doing many things at one time is natural.  I’m always doing more than one thing at a time; but it’s different for men.  My Sunday school class read a book called, “Men are waffles; Women are spaghetti.”  It really opened my eyes to our differences.  Men do one thing at a time (except if at work. For some reason, at work they can multitask.  Go figure) While they do that one thing, that’s all they do.  Their thoughts and actions stay in that little block of that section of the waffle and they don’t think about the next task till the first one is over. Women, on the other hand, are like spaghetti.  Everything touches everything else and the tasks overlap, clump together, weave over and under and are blanketed in sauce.  That’s just the way it is for us. 
Actually, I think caregivers, men or women, are like spaghetti.  Everything touching everything else;all things connected.  It just has to be that way to survive and to be able to get done all you have to do.
….Oh, yeah, that and the magic wand we’re all given when we take on the caregiver role.

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The Caregiver's Prayer by Kelly Combs

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The following Caregiver‘s Prayer appeared in a local church’s newsletter recently.  Lynn’s aunt shared it with me and I contacted Kelly, the author, to see if I could share it with you.  She graciously agreed. I have included her bio below as well as the introduction to the prayer and the prayer, itself. I hope it blesses you as it did me.
Kelly Combs wrote this poem for her father, who has been a dedicated caregiver to many, and is currently caring for his wife who has Alzheimer’s. Kelly writes a devotional blog at www.chattykelly.com.

The Caregiver’s Prayer

By: Kelly Combs

Being a caregiver is hard. Whether it is your aging parents, a sick spouse, or another chronically ill person, the weight can be overwhelming, even as it is done in love.  We can’t do it alone, but when we partner with God, His strength can sustain us. I hope this prayer blesses those of you at Fairmount who may be caregiving, or know someone who is a caregiver. Please feel free to share it.
Dear God,
I’m feeling overwhelmed. I don’t know what to do. I’m tired Lord, the work is hard, and so I come to You.
My role here isn’t easy, but it’s one I wouldn’t trade. I know I’m following Your will, but my strength’s begun to fade.
You said Your yoke is easy, and that Your burden’s light.
I need to rest my soul in You, and lean on You tonight.
I pray for peaceful, restful sleep; to wake fully restored.
I hope that’s not too much to ask of You, my precious Lord.
I pray that You renew my strength because in You I hope; Then I will soar, and not be faint, and You will help me cope.
You modeled loving-kindness, teaching us to be like You.
That gives me the strength to care. I know it’s what You’d do.
So I will keep care giving, on the bad days, and the good.
I’ll love the way You love me, treating others as I should.
Please bless the one for whom I care and hold us in Your hands. Together, with You, we will make a strong cord of 3 strands.
And when I get to heaven, and stand before Your Son,
He’ll call me faithful servant and say to me, “Well done.”
– Amen

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Update on Ongoing 4WD Wheelchair

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If you follow my blog, you read a post on March 1 describing the challenges we were having related to a 4 wheel drive wheelchair we bought three years ago from Radical Mobility that has never worked.  We sent them the motor to the wheels, the controller and cabling, almost two years ago now and have still not received them back.  We had attempted over and over again to communicate with the company but unsuccessfully…until I wrote a blog about it.
I immediately got a response from the company (Radical Mobility) apologizing for the issues we had experienced and was given a promise that our repairs would be immediately addressed and the items returned, going into the mail on March 5.  Well, it’s now April 24 and they still have not shipped the items!
Initially I though we were going to get the relief we wanted.  I got excited that FINALLY we would get the parts back and Lynn would be able to use his wheelchair on our summer vacation.  I was contacted by the sales department to send them pictures of the connecting cables to make sure they were wired properly.  I immediately responded and was promised the motors would be fixed and ready to go by the next week.  Then silence; weeks of silence. 
I have repeatedly sent them emails; most of which go unanswered.  I occasionally get a response back promising that it’s going in the mail by xxxx.  I’ve been told the parts were stolen when their warehouse was broken into.  The parts would not have been there to be stolen if they had sent them when they promised.  The last promise was that they would be shipped the Tuesday after Easter and the tracking numbers would be sent to us promptly. 
Still no tracking numbers.  No answers to my inquiries either about the status.
I am so disappointed in this company.  When I visit their webpage, the wheelchairs look like they do exactly what Lynn needs so that he can fish again.  His life is so limited in entertainment and fun.  I had so hoped that Radical Mobility would come through for us but once again, I’ve been seriously disappointed.  I was even going to rescind the negative blog if they had followed through…but they haven’t. 
The owner of this company appears to be a quadriplegic.  If he is, he KNOWs how important these type of devices are to those who have so few options to participate in the activities they enjoyed before…  Why would he allow his company to disappoint those who face the same challenges he does?  We paid him $15,000 to get that chair and it has never worked.  Makes me wonder what he uses the money for. Is this a scam or a legitimate business?  I’m just not sure anymore.
So once again, I warn my readers, if you are looking for an all-terrain wheelchair, do NOT buy from Radical Mobility.  They cannot be trusted to support their merchandise and their customer service, both in communication and in follow-through, is non-existent. Don’t believe what they put on their website; if you do, you’ll be severely disappointed as we have been. 
We still have our hopes that if they FINALLY ship the parts, they might get through customs and to us before the end of summer so he can go fishing but it’s now starting to look very doubtful. Say a prayer for us that they will live up to what they promised soon.
Thanks

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Just Sharing

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Usually I have a theme for my posts, but not so today.  Instead, I just want to share what’s going on in my life because life doesn’t stop for a caregiver; it just gets busier and busier.
Lynn:  He has started to feel better from taking his Rebif. Hallaluyah!  It only took a year.  Though he still has fatigue, it’s much better; except for this past week. For some reason when pollen comes out each spring, it really hits him hard.  He needs about 25 squirts of saline mixed with nose spray every time I enter his room and sometimes twice while I’m there.  He has felt very tired all week and rather depressed. The depression leads to impatience and irritability so my tolerance has been stretched as well.  He seemed better today so I hope he’s getting adjusted.
Eli 146My grandson, Eli:  Poor little guy has been labeled with “failure to thrive.”  He’s 10 months old and the size of a five month old.  He has not gained height or weight in several months. He will only drink 2-3 ounces of breast milk at a time and if he eats solid food, he breaks out in a rash.  The GI specialist says his tummy probably has the same type of rash inside as he skin outside and so it hurts him to eat. He’s on an formula that has been added to the breast milk and it smells bad and must taste bad because he pushes it away as soon as he tastes it.  We’re trying to get him to drink at least as much as before adding the supplement but he’s really fighting it. If this is not successful, he may need a feeding tube.  It’s very frustrating and anxiety producing for his caregivers but the little guy is just as happy and loving as he can be! His smile is infectious and he’s a joy to be around. 
His mom, my daughter:  She bent over a chair Monday and broke two ribs!  She also broke her ribs bathing Eli when he was about two months old so now we have the added concern of why are her bones breaking so easily?  Bones don’t usually break unless an unusal stress or intense pressure is applied. She just leaned over the chair.  So, she’s having all sorts of lab work done plus a full body bone scan and a bone density test to figure out what’s wrong.  Though they do not suspect cancer, bone tumors or bone infection can be the cause of such breaks.
While she goes to the doctor, I keep Eli and Lynn.  A typical hour from such a day:
     Lynn:  “Sweetie, I need to pee.” (I pick up the baby, settle him into something he can’t get out of, cath Lynn and deal with whatever else he needs.  Meanwhile, baby gets fussy.)
     Eli:”Mamamamamam, (squeal), dadadadad, (whine)” hands reaching up, whining getting worse; he’s rubbing his eyes and needs his bottle. (I settle Lynn, go heat up the bottle, with Eli crawling around my legs begging for his milk that he wants THIS MINUTE)
     I rock Eli to get him sleepy so he won’t fight eating.  As his eyes start to shut, I remove his pacifier and stick in the bottle. Success, he eats 2 ounces.  I try it again in a few minutes- another ounce-and that’s all he will take.  I finish rocking him to sleep (he’s a very light sleeper; if you move he wakes up and is ready to play) I start to fall asleep (I’ve only slept six hours so I’m always tired) and after about 20 minutes, I hear:
     Lynn:  “Sweetie, I need to pee”  and we start over.
      I never ends…
My son:  He’s getting married on Friday at our house and having the reception on Saturday at our house so Lynn can attend and have a place to rest. So my house is covered in flowers and wedding preparations and every spare minute I’m busy working on something related to the wedding.  I’m taking next week off from work to get it all done because I’m WAY behind. I don’t even have a dress yet!  But I’m very excited and happy for them both.  It’s been a lot of fun helping them put it all together.
Me:  I’m seeing a surgeon on Monday.  My right thumb joint needs to be replaced.  I can’t really put it off any longer.  It’s painful all the time, I can’t open anything with it, I can’t grasp anything so I need to get it done BUT, what am I going to do with Lynn? I’ll need some respite care of course but I won’t know till I see the surgeon how long I’ll be unable to use my hand.  Ugh….I dread dealing with his needs more than I dread surgery for myself.  I don’t know how I’ll afford the continuous care but I’ll need to see if we can get help for 24 hours because I can’t cath him with one hand nor can I transfer him into or out of bed with one hand.  Wish me luck on this one.  May take several weeks to work this out.
My work:  busy as usual, still needing me when I’m needed at home. 
So as a caregiver, I find there are many ways I need to provide care and to many people. Lynn and my daughter for their medical needs. Eli for medical and baby care.  My son for sending him off into the world with his own family.  And myself. 
Who takes care of me?  God.  He provides me with what I need, when I need it and thank goodness for it.  
PS:  All prayers are welcome!

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