Physical effects

Physical consequences of being a caregiver

The Impact of Caregiving on the Caregiver

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s I was taking my morning dose of Advil (4 tablets rather than 2), I was curious about my future as a caregiver and what being a caregiver was doing to me personally.  So I thought I would look up to see if any research had been done on that topic. The Family Caregiver Alliance had a nice comprehensive summary of what research says on their website.  I caution you though, that if you are the receiver of care, this might make you feel guilty and if you are the caregiver, it might make you feel depressed. That is not my intent.  I think these facts are important to realize; however, so that appropriate decisions can be made for everyone’s future.

 Mental and Emotional Health Impact of Caregiving

  • Caregivers have higher levels of depression (40-70% have signs of clinical depression).
  • They often have coexisting anxiety disorders, substance abuse or dependence, or chronic health disease along with depression.
  • Caregivers have higher stress levels experiencing symptoms of frustration, anger, feeling drained, guilty or helpless.
  • They report feeling a loss of self identity, lower levels of self esteem, constant worry; feelings of uncertainty, less self-acceptance and feel less effective and in control of their own lives.
  • More than one-fifth (22%) are exhausted when they go to bed at night and feel they cannot handle all their caregiving responsibilities.
  • Caregivers who experience chronic stress may be at greater risk for cognitive decline including short-term memory, attention and verbal IQ.

Studies indicate that stressful caregiving situations may result in the caregiver participating more often in the use of alcohol or other substance abuse and caregivers often use prescription and psychotropic drugs more often than non-caregivers.  In addition, family caregivers are at greater risk for showing higher levels of hostility.  Over time as clinical depression increases and the person they are caring for shows greater impairment in mental and physical dependency, the caregiver is more likely to engage in harmful behavior toward their loved one if they themselves have become depress. Depressed caregivers also show a greater incident of suicide.

 Caregiving Impact on Physical Health

  • Eleven percent (11%) of caregivers say their own health has declined since taking on caregiving responsibilities.
  • Caregivers have a lower level of subjective well-being and physical health. In 2005, three-fifths (45%) of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared to one-third (24%) of non-caregivers.
  • Caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching), increased tendency to develop a serious illness, and have high levels of obesity and bodily pain.
  • Studies show that caregivers have a diminished immune response leading to frequent infection and increased risk of cancer (caregivers have a 23% higher level of stress hormones and 15% lower level of antibody response).  They also suffer from slower wound healing.
  • Ten percent report they are physically strained.
  • Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk for the development of cardiovascular syndromes such as high blood pressure and heart disease. They also are at greater risk for diabetes and higher levels of cholesterol.
  • Women who spend 9 or more hours per week caring for a disabled spouse increase their risk of health disease two-fold.

to continue reading this blog, go to http://multiplesclerosis.net/living-with-ms/impact-of-caregiving/

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I Like Ours Better

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There’s always a lot of hype that surrounds holidays, and Valentine’s Day is certainly right there keeping pace with all the rest. It’s supposed to be a day to celebrate your love for one another in some special way with gifts, dinner out, and other more intimate ways of expression. I’ve never been overly romantic; though Lynn was.  He used to always send me flowers where I worked or made me some type of special decorative object.  He always did something special because he enjoyed showing his expressions of love in his own way.
Now that he is unable to get out on his own, he isn’t able to do those things anymore. He can’t make anything since his hands don’t work and he can’t order anything to surprise me since I manage the household funds and would have to type in the credit card information. He can’t take me to dinner because he tries to stick to his special diet and by night time he’s pretty wiped out anyway (plus this time of year we avoid crowds anyway due to cold and flu germs).…he can’t show other more intimate expressions of love independently—other than a kiss.  He can’t put his arms around me or hold me or cuddle with me unless I position him like a manikin and honestly, with my arthritis pain and muscle spasms, that’s just not something I want to do for a few minutes of physical closeness.
You would think that this loss of physical intimacy might have adversely affected our relationship, but I honestly think just the opposite is true. Before Lynn became so dependent on me, we both were VERY independent souls.  Both had previous marriages that did not succeed and both had learned to be both a mother and a father, a housekeeper and a maintenance worker, a CEO and a front-line worker.   Learning to share and include one another was not always our first instinct and that oversight often caused conflict. We may have had physical intimacy but we didn’t have as much emotional intimacy.
While it may sound strange to say this, Lynn’s loss of mobility has lead to our relationship actually becoming much closer than we ever were when we could go out and participate in things together.  Now we have to share everything.  If he has an itch, I have to scratch it. If he needs a bath, I have to give it. If he has a problem…he now tells me about it. There is a strong connection that bonds us like nothing we had before. No longer am I shut out of his life; we truly are one.
 
Read more of this blog at: http://multiplesclerosis.net/living-with-ms/like-better/

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My Role as a Physical Therapist

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Personally, I have never been good at exercising.  I hate it.  I might feel much better if I stayed with it a while but I’m so out of shape that I feel awful doing it.  Not so, for Lynn.  He has always been good about doing some type of exercise almost every day. The major difference now is that I have to help him with it. Therefore, one of my many roles in caring for Lynn is to be his personal physical therapist.
For anyone, but especially people who have conditions that produce fatigue, keeping conditioned is essential to conserving energy.  If the muscles don’t work efficiently, it takes a lot more energy to do the simple tasks of everyday life.   Lack of stimulation to the muscle groups causes them to become de-conditioned which require more oxygen and other support from the body to make them work correctly.  When Lynn was in the hospital so much in 2010, he was told that for every day of inactivity (i.e., being confined to bed) he experienced, it would take approximately a week to regain what was lost due to deconditioning. He found that to be true to a large extent.  It has taken him years to build back up much of the strength he lost during those three hospitalizations and some of it has never returned to the same level.
There is not a whole lot you can do to prevent the progression of MS; however, if you keep fit you’re more likely to be able to maintain greater strength and endurance than if you are out of shape.  Lynn does not want to give up and let me do everything for him.  He wants some control over his condition so exercising is both a mental triumph as well as a physical one. Here’s some of what he does.
 
Read the complete blog here: http://multiplesclerosis.net/living-with-ms/my-role-as-physical-therapist/

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We Love To See You But….

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Lynn loves to socialize.  He’s much more outgoing than I am and often wants to invite people over; especially family members.  However, what I hear when he says so and so is coming over is this:  I’ve invited people over who may or may not have been exposed to a cold, flu, norovirus, or any other germs that could make me extremely ill and bring on an exacerbation or deterioration in my condition that could have long term effects.  Plus, I will likely spend a lot of energy talking and entertaining which means that what little energy I have will be totally used up and it will take me 2-3 days to recover so be prepared to provide even more care for me than you normally would.  In the mean while, I need you to fix a little something for them to eat like maybe a roast, baked potatoes, and some vegetables, while caring for me and trying to work and I would really like the house to look presentable though not necessarily festive.  “Really?” I say.
Don’t get me wrong, I also like to see family and friends and I really enjoy our time together but now that Lynn has an autoimmune disease that makes him susceptible to other illnesses, I see socializing in a whole new light.  Here’s what I would like to say to our guests (and actually sometimes do).
Read more at: http://multiplesclerosis.net/living-with-ms/we-love-to-see-you-but/

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I'll Miss You, Patrick

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It was with great sadness this week that I learned of Patrick Leer’s death.  He passed away at home in the presence of his daughter, Megan, after battling unsuccessfully lung cancer with metastasis to the brain. Throughout his journey, he remained a fighter, keeping a positive outlook and determined not to let the disease win, but win it did on November 11.
When I first decided to write my blog, it was actually with the expectation that no one would likely read it but family even though I hoped that maybe a few other caregivers of family members with MS might stumble across it and we could connect through sharing our experiences. Patrick was one of the first to make that connection with me.  He had been caring for his wife, Patti, for over twenty years after she woke up one Thanksgiving morning unable to walk.  Their’s was a sudden entry into the world of MS and his wife progressed in her condition until for her safety, she had to live in an assisted living facility.  She developed MS dementia and may not have been fully aware even of her husband’s condition and eventual passing.  I remember Patrick sharing with me early on that caregivers often die before the one they have cared for does.  I also remember when he first wrote about having cancer his commenting that he had become a statistic; a caregiver with a serious condition that might take him before his loved one.
Reading about Patrick’s struggles and the impact it had on his ability to care for Patti brought home to me once again my fear of the same.  I often worry that I’ll have a heart attack or stroke and not be able to care for Lynn any longer.  Cancer is not as prevalent in our family but heart disease is and I’m sure I’m high risk for it. I rarely get sufficient sleep; I eat to stay awake so I’m gaining weight again; and I get no exercise so even the slightest exertion now makes me short of breath.  All are high risk factors for heart disease.  I keep thinking that I need to get on my treadmill each day for 30 minutes or I need to cut back on eating so many snacks or I need more sleep but I’m honestly at a loss on how to do any of those things.
I keep thinking I’ll get to bed earlier but I seem to get there later all the time. I often am so sleepy by 4 pm, that I fall asleep at my desk.  Some days I actually lie in the floor for a few minutes to take a nap or even lay on the bed and take one for an hour.  Those precious extra minutes keep me going till I can really crawl into bed around 2 a.m. each night.   I try hard not to nap though by snacking on things that will give me bursts of energy but which also are high in calories.  They help me keep going but my clothes are sure getting tighter. Then there’s the issue of exercise. The only time I could change into clothes, be able to exercise for 30 minutes, and change back out again without being interrupted is around 1 a.m and that’s too late to do something that would just wake me up. These things just sound like excuses to not take care of myself but in reality, they are choices I’ve made to take care of Lynn and our needs instead of me.
My children are worried about what will happen if I can no longer care for Lynn.  I understand their concern because in reality none of them could quit work and care for him; much less two of us.  They would certainly want to do so but they have to work and don’t have extra money to hire a caregiver so care could be provided at home.  Therefore, all our possessions would need to be sold so that we could go into assisted living.  Lynn is convinced he would die if I died first because he would not want to go on.  A large part of that is because we’re close and he would grieve my loss but the other part is he knows in assisted living he would not get the level of care that I give him and he would likely die from complications due to that lack of attention before many years.
It’s really a shame that there is no assistance for caregivers that can come into the home and support them so that in the end two don’t need to be cared for instead of just one.  Just another short-sighted aspect of our medical care.
Nuff said on this depressing topic but in closing I do want to say that I truly admired Patrick.  He was a dedicated husband and father for many, many years when men with less integrity would have rode off into the sunset.  I’ll miss you Patrick …. but not nearly as much as Patti will even though she won’t know why.

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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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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.

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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.

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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…..

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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 »

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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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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What is a Caregiver?

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I’ve had the opportunity this week to read a few blogs from other caregivers and last week to attend a caregiver support group.  In hearing the stories of other caregivers, I started thinking about what it meant to be a caregiver.  There’s certainly the obvious answer, “to give care to someone periodically or full-time,” but there is more to the story; especially if you’re a full-time caregiver to someone who is totally dependent on you due to a mental or physical condition.  Here’s my take on it….
…first, there’s the physical commitment which takes on many faces…

  • If the person cannot “do for himself” then you become his muscles and nerves; not just his hands and feet. It is through your muscles, and therefore, your strength, that he moves to change positions, to find comfort, to alleviate pain, to participate in distractions, to have his needs of daily living met, to experience the joys and challenges of life as a participant and not as a spectator. It is through your nerve endings that his body is protected from water that is too hot, sharp objects that might damage skin, body temperatures that indicate infection, bandages that are too tight, food that is too cold to be enjoyable, and other potential discomforts or enjoyments that he is beyond the ability to change but must rely upon someone to care enough to notice them and adjust as necessary for his comfort and enjoyment.
  • The flip side of using those muscles and nerves to provide for care is that you have more aches and pains than you might otherwise have. Your muscles are often strained and in spasm from lifting a body that cannot provide any support for itself.  It’s true what they say about dead weight being heavier.  A limb that cannot be lifted by the owner is heavier to lift than one that the owner can provide assistance.  Sure it weighs the same but the effort required makes it heavier.  So you get up in the morning with sore muscles and periodic spasms.  A good exercise routine would probably help that but finding the time to commit to that is a challenge (especially if you’re like me and hate to exercise!)
  • Besides the daily physical requirement, there is also the fact that you commit to their care even when you need care yourself!  Gone are the days that you could lie in bed and rest if you had a cold or migraine.  Gone are the days that you can have a GI bug and just stay in the bathroom till you are well. You have to figure out how to get help for the person you’re caring for either in-between bouts of being ill or who to call to come rescue you both. Personally, I’m probably going to have surgery soon and will have to find full-time care for Lynn before I do so.  That’s bothers me more than the thought of the surgery!

 ….Then there’s the emotional commitment or impact….Though the physical aspect is draining, the emotional impact may be even more difficult to handle.

  • Again, there’s the emotional contributions of caregiving toward the “caree.”  Part of your role includes observing the emotional thermostat of the individual. Are they depressed?  Are they becoming angry and difficult to control?  Maybe they are afraid about the future or that you will decide not to look after them anymore so they cling to you or try to “guilt” you into staying.  Someone who is chronically ill often goes through the emotional stages similar to someone dying, “denial, bargaining, anger, depression, acceptance” with a lot of going back and forth between the stages as they encounter new issues.  Guess who has to help them through those stages?  The caregiver of course,who is also likely to be going through the same stages themselves.
  • The caregiver’s emotional response is often very difficult due to self-imposed guilt over having some of the emotions we have.  Too often we think that we are “bad” to be angry or resentful about being “stuck” in a situation. We don’t want to give ourselves permission to experience the negative feelings we have.  What happens though if you don’t allow yourself to express them is that they come out anyway in response to the one being cared for or in destructive ways to yourself.  I tend to overeat if I’m depressed and I become overly negative and critical toward Lynn. It’s important to acknowledge the feelings and allow them to be expressed but in a healthy way rather than in a destructive way.  Support groups and therapy help a lot with that as well as writing a blog : )
  • You also experience the effect of constantly having that person on your mind. You have to plan ahead for meeting their needs…do they have enough supplies, when is their medication refill due, are their bills being paid on time, are their clothes okay, are their meals being prepared correctly, who is going to cover for you when you can’t come by, who will take over if something happens to you….etc. etc. etc.  

…Besides emotional and physical commitments, you also become the other person’s “window to the world.”

  • You help them remember what day it is and to celebrate the special occasions on the calendar.  Often every day is just like the last so it’s difficult for them to keep straight the season or the holiday being experienced.
  • They may not read the news or watch it on TV so helping them keep up with current events may be a way to keep them connected (personally, I do not read them either so we could have had an alien invasion and I wouldn’t know about it till someone stopped by and told me about it.)
  • You are the one who takes them out into the real world.  I admire Patrick, who writes Caregivingly Yours.  He takes his wife Patti, who has MS and is fully dependent, on multiple excursions per week.  He keeps her stimulated with new places and entertains her with new advantages to help her keep involved in life, even though her MS Dementia would make it easy for him to say they did when they didn’t.  That’s try commitment to doing what’s good for someone when it would be so easy to let it go.

Then in addition to being a “caregiver” you add MS to the picture.  I know all chronic illnesses have their special challenges but since I deal with MS, I’ll describe that impact.   MS is unpredictable.  Since any nerve pathway could be affected by the myelin degeneration, ANYTHING could go wrong. What is working fine today might not work at all tomorrow.  Someone who is functioning well in the morning may not have the ability to do anything for themselves by afternoon. A simple cold can put them in bed for a month or more and lead to new exacerbations that have long-term limitations. A period of forgetfulness might mean fatigue or the beginnings of MS dementia.  And while all these symptoms create challenges, for the most part they do not shorten life expectancy so the accumulation of new challenges goes on and on and what’s lost is rarely regained.
There is no doubt that being a caregiver is a sacrifice of one’s self.  For me, I often feel like I am an extension of Lynn and at times, even lose myself in him so that I no longer exist.  When that starts to happen I have to work to separate myself from that place; otherwise, depression sets in and I am less effective at anything. 
Overall, I feel blessed to be a caregiver.  I receive a lot of rewards from being one.  It’s the hardest job I’ve ever had to do but it’s also the most rewarding because I’m very fortunate that the person I care for, cares for me, and we share the challenges together.  Plus, he’s very grateful and I have much support from our families and friends. 
But most of call, I’m blessed because God gave me the spirit of being a caregiver so I am doing what he has given me the talent to do.  Not everyone is so lucky and for them being a caregiver is a much greater challenge.  To them I say, “do the best you can but don’t expect to be perfect and don’t beat yourself up if you don’t like it.  You’re a blessing to the one you care for and that’s enough.”
So am I.

What is a Caregiver? Read More »

When is a Nurse Not a Nurse? When she's a Family Caregiver.

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My first career in life was as a registered nurse.  I graduated in 1978 with a diploma in nursing and obtained my BS in 1980.  I was fortunate to have a position that allowed me to learn lots of new procedures that I would teach to others so I had exposure to all types of products, procedures, and knowledge.  Though I left nursing after my first child was born to begin a new career, I kept abreast with many of the changes. I even did home health care for a while as a second job.  I fully believe that God used those experiences to prepare me for my current role as a family caregiver.
We have had a home health nurse overseeing Lynn’s wound care for several weeks now.  I was telling her last week, that we really did not need her anymore because the pressure ulcer is nearly healed.  All I had needed her for anyway was a consultation to make sure I had the supplies I needed to care for the wound.  I could not get them as a family member but I could if I asked a home health nurse to get an order for them.
It’s been a bit frustrating at times being a nurse but unable to “be” a nurse as a family member.  When Lynn was in the hospital I assisted with all his care except managing machines.  I was unfamiliar with those so I either left them alone or had someone teach me how to manage those too (not something they would usually do).  I would do my own assessments of his body and vital signs and consult with the medical team regarding what they observed.  I still do that.
When I call in to the doctor, I have already taken vital signs, I give sizes and descriptions of skin breakdown, I describe sounds or smells that indicate problems, I have “home” kits that I use to determine if infections are developing.  I do all these things and his doctor’s trust that I know when something is wrong and they listen to my recommendations.  I am truly part of his care team.  However, because I am the spouse, I cannot “order” supplies except through home health.  I cannot get reimbursed for care provided such as wound care because I’m the spouse.  The home health nurses have not once done his wound care.  I do it.  I tell them what I’m using, what I think is going on, how it’s healing, what supplies I need, and they go along with what I say.
Not so with insurance companies.
If there is a family relationship, you lose all credibility with them.  I get “stripped” of my license when I try to justify care needs.  So I’ve learned to get what I need by getting an order for home health (which is a waste of money for the insurance company since I could easily do this without them paying for a home visit). Just another problem that exists in our health care reimbursement system.
…Just like not paying for preventive care….don’t get me started on that!
There’s another time when a nurse is not a nurse when she’s a family caregiver; that’s when she tries to tell her spouse what to do.  I have so many times told Lynn he was developing a “condition” of some sort.  I would warn him that he needed to go to the doctor to get such and such.  However, he won’t go until the situation is so bad he’s in pain or can see for himself that it won’t heal alone.  I get no credit for what I know.  Yes, I’ve “told him so” a few times now and he even admits that he needs to listen to me but there’s something in his ego that just won’t let him take directions from me.
I also realize that as a family caregiver, I’ve become his enabler.  I realize that he would probably have more “abilities” to care for himself if I was not here to do so much for him. When he’s tired, he just won’t “do” for himself. He calls me.  If he was in a facility or had someone who was not family caring for him, he would likely have to do it himself or not get it done. He would not be happy and he might have long waits, but I often wonder if I’ve done him harm by always being there to help.  On the other hand, I know that if I had not been there to watch over him, he most likely would have not lived to this point because I have caught and/or prevented so many medical issues for him before they became serious.
So, my medical background is a true blessing from God.  He’s provided me with the knowledge, skills, and abilities to care for the husband He gave me.  Though He has not led me to “be” a nurse, He has led me to “be” His healing hands for Lynn.  For that I am very grateful and we are both truly blessed.

When is a Nurse Not a Nurse? When she's a Family Caregiver. Read More »

Wanted: Caregiver Ten Hours a Day

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I needed to go into work on Monday.  I was supposed to be meeting someone at 12:30 so I had to leave by 11 (an hour to get to work, 30 minutes to walk to the  location of the meeting and time to prepare for the meeting).  To leave by 11, I have to allow three hours preparation time at least.  To leave, I don’t necessarily have to have someone here but Lynn has to be out of the bed and “set up” for both comfort and safety.  Therefore, to get to work to attend a meeting at 12:30, I need to be out of bed to start by day 4 1/2 hours before the time I need to be there.
Because I come on site only one day a week, I usually set up back to back meetings for while I’m there.  It also never fails that when people see me in the halls, they stop and ask my advice on whatever is happening in their area at that time (that’s my job essentially; I give advice).  I usually take some type of ready-made lunch bar as my lunch to chow down as I walk between meetings.  The entire time I’m on site, I’m watching my time knowing that on my way home, I have to stop and get groceries while I’m “in town” and whomever I’ve asked to stay with Lynn is usually anxious to get back to their lives.
It’s almost always the case that I’m running late.  Lynn always needs several “just one things.”  My relief usually walks in the door as I’m trying to walk out so I get no help getting out the door.  Once I’m at work, I always have at least one or two, “have you got a minute?” requests.  Then grocery shopping always takes longer than I think and I almost always need to add a stop of two (library, post office, another store).  Therefore, I’m always late and always feeling guilty for being late.
Monday it really got to me.  I ticked someone off at work before I ever got there about a class I was supposed to teach and didn’t want to because the registration was only for one person.  I finally said I would teach it but they had arranged for someone else to cover for me and that someone was annoyed when I said I would take the class over after all since she had spent her weekend re-doing my slides.  I felt so guilty for having her cover for me that I cried all the way into work.  Then I went to her office to apologize for her being asked to do my class and I cried again. I hate for anyone to do my work for me! I don’t want people to think I’m slacking off and I know that because I work from home, people think that I’m not doing my job as well.They don’t say that to my face; on the contrary they tell me how amazed they are at what I get done; but I see  the looks.  I know the tone of voice.  I know when I’m not told about things that I SHOULD be told about and when I’m not included in things that I should be included in deciding.  I also know what is usually said about people who work from home–Are they really working all the hours required?  Can they be counted on?  Are they really meeting the expectations of the job? Should they be required to come back into the office?
That last question is the big one for me.  I would love to be able to work from the office and escape from being a caregiver/full-time worker every day.  However, I know that if I was required to come into the office, I would probably have to find a way to quit.  On my salary alone, we could not afford a 24-7 caregiver for him.  I also know that if I took over his care when I got home that with all I would have to do between arrival and departure the next morning, I would get even less sleep than I do now which is on average only six hours a night.  Driving would not be safe; physically I could not keep up.  Plus if Lynn had to use a foley every day and still used the peddler as much as he does now, he would get a urinary track infection from the trauma of the constant movement.  His last UTI landed him in the hospital for three months due to various complications.  I don’t want to go there.
So I decided to hire a care giver one day a week for 8-10 hours a day to arrive an hour before I had to leave and to stay long enough for me to do all I needed to do.  I wanted an employee.  Someone I could give instructions to and who would do all I asked because he/she was being paid to do so.  Someone that was a stranger so he/she could help Lynn with hygiene and tolieting issues without embarrassment to either.  I told Lynn what all I wanted this person to do … and he asked his son to do it.
Don’t get me wrong.  His son is awesome about helping me out but he has a new job that is already making it difficult for him to be here as often as I need him.  Plus Lynn doesn’t want him doing as many personal things for him because he doesn’t want to embarrass him or make him feel overly burdened.  I know Lynn was trying to help out and I know he would feel more comfortable with his son than anyone else but now I don’t think my goals for what I need will be met. I’m going to see how it works and plan to request of him all that I would have requested from a paid caregiver just to see, but I’m not confident.
Keep your fingers crossed for us!

Wanted: Caregiver Ten Hours a Day Read More »

The View From Up Here

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Stretched outright, Lynn stands about six-foot tall.  For the past three years; however, he has been around four-feet tall. That’s his height when he’s in his wheelchair.  Since just before he was hospitalized in 2010, he has not been able to stand up or walk.  Being restricted to a wheelchair has; therefore, changed his perspective on how he sees the world. In other words, his view of the world dropped about two feet.  This week that changed…
I may have mentioned that we were looking into buying a device that would help him stand.  Lynn has been exercising religiously since he got out of the hospital trying to regain the muscle tone he lost while “laid up” for about three months off and on in 2010.  It takes much, much longer to get it back than it does to lose it. In fact, we have heard it said that it takes a week for every day of bedrest to get back what was lost.  After many hours of exercising, he has now gotten to the point where he wants to focus his energy on possibly being able to stand independently.  He realizes he may never be able to do that, much less walk, but he also figures that if he doesn’t try, it will absolutely never happen.  Having made that decision, he went in search of a device that could help him reach that goal. He found what he was looking for in the newly released Rifton Tram (find out more at: http://www.rifton.com/adaptive-mobility-blog/tag/rifton-tram/.)
The Tram is a multi-purpose device with a low center of gravity that lifts from below rather than above.  In some ways it’s similar to a hoyer lift with the legs that widen but that’s where the similarity stops.  It has the ability to be a lift/transfer device, but it also allows you to help the person go from sitting to standing and then from standing to walking.  It’s light-weight; only weighing about 70 pounds; and rolls easily.  While no medical equipment is cheap, this one actually sells for right around $5000 depending on whether you buy the optional scale device with it as well.  The scale allows you to determine how much weight-bearing is occurring and helps with determining progress in that area.
Since the insurance company says this device is too new to demonstrate that it is truly effective in all that it claims to be able to do, they won’t pay for it.  They classified it as “experimental” when they rejected it. So, we decided to take the money out of savings.  Sure it took a big bite out of what we might have for other things but how do you put a price on hope? For Lynn, the price was $5000.  In the scope of what it might do for him, that price seems worth it.
Adaptive Solutions (http://www.myadaptivestore.com/) , the company that helped us find out about this device and purchase it, was very supportive throughout the process.  Lee Rooney, the owner, really believes in this equipment, and personally brought us the device and showed me how to use it. For him, it was a two-hour drive from Lynchburg on a Saturday to deliver it to us so that we could ave it as soon as he got it. You can see how dedicated he is to his customers.
Though the process is simple, I have to admit, it takes a lot of practice to get the straps set up to be the most effective for what we want.  Yesterday it took me four tries.  Once, the straps were too tight in the forward position causing it to lift him into a sitting position rather than standing. Two other tries had him once with his right side longer than his left and then the third time with his left side longer than his right.  Finally, I had the straps equal enough that he had almost even pressure on his toes and he was able to stand for a while. Today I got it right on the first try!  He was able to push his feet into the floor and to slightly pull back on his knees as if to lock them–both movements being necessary if he wants to stand.
One of the main reasons we got the Tram though is Lynn’s feeling of independence and normalcy.  He recalled that when he was in physical therapy, his therapist used to stand him almost upright when he transferred him.  He described how exhilarating that feeling was.  When he first stood with the Tram, it was a similar experience. “I feel so tall!” he grinned.  He explained that he had forgotten how it felt to look down on things.  He was so used to being at eye level that to look down and see objects below him made him feel like a giant.
It was a good feeling…for us both.

The View From Up Here Read More »

Warning! I have a Cold!

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Yesterday we celebrated Christmas with my side of the family.  Several traveled about five hours so that we could be together. We had a wonderful time but it almost didn’t happen.
Earlier in the month I posted a blog about how difficult it was to choose between caring for Lynn and helping out my daughter who was sick and whose baby was very sick. After reading that post, my loving, self-sacrificing, 80-year-old parents jumped in their car and drove five hours to come help her out so I would stop worrying about her.  (See where I get my caregiving tendencies?)  It was such a relief to have them here so I knew Sarah could get some much-needed rest.  They kept the baby at my house, and I could help from across the room or up close if I was careful to stay away from his little contagious face.
My parents needed to get home for some things previously planned so they left early Friday morning of that week (two Friday’s ago).  A few hours after they left, my daughter sent me a text, “do you have a spare stethoscope?  I think Eli is wheezing.”  Though I didn’t have a spare, I immediately took what I had and went over to check his breathing.  In doing so, I walked into virus city but I took the risk because I was worried about the baby.  I’m glad I did because he was certainly wheezing and, in fact, ended up in the emergency department a few hours later to get breathing treatments.  I stayed away from them after that but it was too, late–the alien invader cold virus breached my armour and attacked.  I now have a horrible cold and I’m miserable…and feeling guilty and worried.
Several other members of my family had also been sick last week with colds and one developed an intestinal illness which was a totally new bug to throw into the mix. We almost postponed the family get together; but by yesterday morning, most were feeling better so we decided to have a “no touch” celebration.  Honestly, I think I was the sickest one there so I hope no one gets sick from me!  We occasionally forgot and gave a hug but for the most part, we did not touch.  Since the baby had finally gotten better, the only ones who could touch him were his parents and me (other than my parents who had no symptoms of illness and had already been exposed to him) which was disappointing for the others.  I was ill but from the baby sharing his germs so he could not be re-infected from me.
As I sit here, now, sneezing almost continuously, my biggest fear, of course, is Lynn.  I can’t help but share these germs with him.  I’ve washed my hands till they are cracked from dryness.  I put a towel over my shoulder when I have to move him to keep his face away from my clothes. I turn away when I cough and sneeze but he’s living in my germs.  I give him Zicam around the clock. However, I fear it’s just a matter of time before he is sick, too.  In fact, he said his throat was a little sore this morning and his use of nose spray has started to increase.
Everyone hates to get a cold and hates the miserable symptoms that cause sore noses, difficultly sleeping and other unattractive and inconvenient maladies.  However, for a person with MS, it carries even greater concerns.  MS is considered to be an autoimmune disease because the immune system in an MS patient is “confused.”  Where in the lives of a person who does not have an autoimmune condition, T-cells and other infection fighting agents are good guys, in a person with MS, they are traitors.  Instead of helping the body, they attack it.  Think of it this way…
Two little countries are located side by side and they hate each other with a passion.  Both countries train their soldiers to attack and destroy any soldier from the opposing country on sight.  The two country’s inhabitants have unique skin colors.  Country-A inhabitants have yellow skin and Country-B have green.  Finances are an issue one year and Country-B is low on resources.  They came up the strategy to put a blueing ingredient in the water of Country-A.  The next morning when Country-A wakes up, everyone who has had water to drink during the night has turned green.  The rest of the “yellow” inhabitants think they have been invaded and began to attack and kill the “green” invaders.  Thus they destroy themselves and the Country-B gains control.
Something similar happens in MS.  The person’s immune system senses danger and attacks itself so when a new infection is introduced, more “defenders” are produced by the body and these new defenders not only attack the invaders but also the person’s own body.  That makes the individual susceptible to having an exacerbation and developing new MS problems. 
That happened to Lynn two years ago.  He got a bladder infection that was not treated correctly. He lost his desire to eat and his body’s inefficiency to fight the infection led to him being hospitalized.  Once he was hospitalized, he developed pneumonia due to an accidental aspiration from the feeding tube he had, and between the two infections (respiratory and urinary), his body engaged in WWIII tactics which nearly cost him his life.  He has just now gotten back almost to his pre-hospitalization level but still has a way to go even now.  Before hospitalization, he had better balance, could use both hands, and had voluntary control of urination. Now he has none or limited ability in these areas.
So, it is with great concern I wait to see if my cold leads to an illness in his body.  I’m also concerned because he currently has a stage III skin breakdown on his right buttock.  Therefore, his body is already under attack trying to repair the skin damage.  I fear that adding in the defense of a cold will be over whelming. 
I’ll just have to wait and see and ask for prayers of defense.  I know if he gets sick not only will he need prayer support but so will I.  (He becomes even more needy when he doesn’t feel well and I’m already on overload from that front as it is!)
On a more pleasant note, I look forward to two more family events this coming week and one next week for New Year’s Eve if he isn’t sick. 
In closing, I wish you and your family a very MERRY CHRISTMAS and God’s blessings on your new year!

Warning! I have a Cold! Read More »

Oh, no. Is that a skin tear?

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For most of us, if we get a cut or scrape or even a deeper laceration, we start to heal immediately and in a few days or weeks, it’s much improved.  Skin has miraculous healing powers.  Immediately after a cut, the body clots the bleeding, sends white cells and special chemicals to the site to fight off infection and within hours new cells start replacing those that were lost.  It’s awesome how God created such an amazing process for regeneration within our own bodies that takes place day after day.
When everything in the body is working properly, skin breakdown is not big deal, but that’s not always the case with an MS patient.   For one thing, MS is an auto-immune condition meaning the body already has it out for itself. Therefore, it’s NOT working properly much of the time.  Then, if there are mobility issues, the circulation to areas that do not move as well is often impaired and that slows down wound healing, too.  On top of that, if you’re taking an interferon like Rebif, then you could suffer from a decrease in the production of replacement cells.  And on top of that if you’re on steroids, your wound healing is REALLY impaired.  So getting a skin tear is a big deal with a wheelchair-bound basically immobile individual.
That being the case, when I give Lynn a bath, I really try to check out his skin and keep a watch on any cuts or scrapes that might be present.  He gets a lot of skinned elbows because he doesn’t pull in his arms as he should when rounding a corner going into a room(and no, he won’t wear elbow pads, I’ve tried).  Usually those heal pretty well because he moves his arms a bit more than his legs.
My greatest worry though are open wounds on his buttocks.  He has two almost pin-head size openings on his buttock near his coccyx.  Not a good place to have one. He can’t sleep in a bed right now because his legs are so uncomfortable so he sits in his wheelchair probably 22-23 hours a day–that’s a lot of time sitting on one part of the body; plus he doesn’t move his core very much.  He can’t really reposition himself in his chair other than to tilt his chair backward so he can slide backward.  Therefore, to get a wound on his coccyx area is a big deal. It’s a risk all the time for more shearing with movement and the pressure makes circulation to the area less. 
He has had buttock wounds before and I’ve tried various types of skin barriers and patches to treat them. Often the patches, even though designed for wounds, tend to tear the skin in other places when they are removed due to the adhesive. I’ve had small areas the size of pin-heads enlarge in a week to wounds the size of a quarter due to removal of bandages or dressings. It’s very discouraging and something to watch very carefully.
I know from when I was working as a nurse that patients who do not manage skin wounds well can die just from the horrible wounds and infections that develop over time.  I also know that at times the layers of tissue under what appears to be a scab are often continuing to deteriorate.  Wound care is very complex.  If the person you’re caring for gets a wound that keeps getting bigger rather than smaller and isn’t in time, showing the nice pink edges of healing, or if the wound starts to smell or drain a lot, see a doctor or wound specialist pronto.  Skin wounds are nothing to ignore.  Take them seriously and don’t wait, too, long to have someone who knows how to treat them properly  take a look.  If you don’t, the results can be tragic.

Oh, no. Is that a skin tear? Read More »

Depression

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Have you seen that commercial that asks, “Where do you hurt when you have depression?” and the answer is, “Everywhere.”?  That came on while I was helping do something this week for Lynn and suddenly I realized that maybe I have “misdiagnosed” his symptoms. 
Lynn started on Rebif about two months ago.  Over the past month, he has become more and more tired the day after his shot but even between those times, he feels bad.  It’s not aches and pains but more of a heaviness–the weight of not feeling good.  He has also gotten very irritable, more impatient than usual and, though he controls it well, he gets angry very easily. 
I was talking to his primary care doctor about something else and she asked how he was doing with his new medications.  She was concerned because one of the major side effects of Rebif is suicidal thoughts.  I assured her he was not suicidal but that he was having some emotional effects and might need intervention for them but I would call back if I decided that was the case.
Later I talked to Lynn about it and told him that I thought that was what was going on with him.  He uses an antidepressant already due to struggling with depression associated with just having MS but I think he now needs more.  He thought about it and agreed, but he said to tell the doctor he was not so much suicidal but homicidal (don’t worry, he was joking about that.  He would never actually try to hurt me or anyone who came here.)  What is actually happening though is that his frustration level rises quickly and he throws off weights that he is using to exercise or he shoves things roughly out of his way or his language gets rather colorful–all of which can be signs of depression.
What is depression actually? 
It’s basically a mood disorder that can vary in degrees of severity. 

  • There can be situational depression–you get depressed because you just lost your job and finances are already tight.  That type of depression usually gets better as the situation gets better and once a resolution to the issue is found, the depression goes away. 
  • Then there are depressions caused by a chemical imbalance–the body doesn’t secrete enough of a particular chemical to keep your system in balance and depression occurs.  Antidepressant medications often work to restore the appropriate levels for the person with this type of depression. 
  • Depression can also be due to medications.  Sometimes medications will cause a chemical imbalance and changing the medication will help relieve the symptoms.
  • Then there are the medical disorders that predispose you to depression; like MS.  A significant number of MS patients develop depression either due to the lack of stimulation by the nerves to the organs that control the chemicals noted above or due to the impact of the disease on the person’s life.

When a person has depression, they lose interest in a lot of things.  When I first noticed that Lynn had depression, it was because he had a lot of “hopeless” talk and he lost interest in eating.  He didn’t want to go anywhere or see anybody.  His personality changed.  He used to love to see people but when depression started, he just wanted to stay in his room and didn’t care if anyone came to see him or not; not even his son whom he is very close to or his Mom and sister. After a few weeks of that not changing, I told his neurologist he was depressed and needed medication and he referred him to a psychiatrist.
Lynn didn’t really want to see a psychiatrist because he didn’t want to “sit around and talk about my feelings.”  I told him that wasn’t really the purpose of the appointment.  Psychiatrists  (MD) often treat with medications and psychotherapy techniques while licensed clinical social workers (LCSW) or licensed clinical counselors (LCC) often do those “talking about feelings” therapies.  A psychologist, another type of therapist, uses tests to help determine what is going on with someone and then refers them to either a LCSW/LCC or to an MD depending on the suggested diagnosis from the testing.
Going to the right type of therapist is very important in getting the help you need.  If you possibly have a chemical imbalance or will need medications, the psychologist, LCSW, or LCC, cannot do that so you should get an appointment with a psychiatrist.  If you want group therapy or the typical 50 minute therapy session where you talk about how you feel and what you can do about it, then you could do either the MD or the LCSW/LCC.
Whichever one you think you might need, go see them.  I was depressed when I went through my divorce from my first husband.  I went to a LCSW which really helped. I did need some medication so the LCSW contacted my primary care doctor to discuss what was needed and he prescribed something. So you can see that you don’t always have to have a psychiatrist but like in all fields, psychiatry has a lot of new medications coming out all the time.  I recommend that you talk to someone who knows which medications do what and what will work best in conjunction with your medical condition and any other medications you may be using.  Once you get the right mix, you’ll feel a lot better.  Then the world will start to look sunny again and you can see hope returning.
If you think you or your family member might be depressed, mention it to your doctor.  Depression is truly a miserable feeling and just like the commercial says,  when you have depression, you really do hurt everywhere and everyone around you is affected as well. Don’t wait…Get the help you need.

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Multitasking

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When I was trying to decide what to write about this week, I was having a hard time coming up with something unique.  I’ve touched on many of the hardships and challenges associated with being a caregiver but as I look out the window at all the new growth for spring, I am also thinking of all the benefits.
Some of the challenges we ensure also have benefits associated with them.  I realized early in my life of caregiving, actually when I was acting as both a Mom and caregiver for my child who had a chronic health condition too, that God prepares us for the challenges ahead without our realizing it.  It seems in looking back that each difficult road I’ve traveled helped prepare me for something ahead that would have been more difficult if not for the previous experience.  For myself, I find that God led me in a very unique way to prepare for where I need to be now. 
I originally trained to be a nurse.  My first nursing position was evening shift and I worked “the house” training other nurses in new procedures and helping out in all crisis events.  I learned a lot of skills, both nursing and interpersonal.  When my first child was born, my husband at that time wasn’t coping very well with being the one responsible for her care while I worked so I sought a day shift position.  I became trained in Infection Control, Employee Health, and eventually was the Director of Education and Training.  From there, I was asked to train in Human Resources so I could take over that department (this was obviously a small hospital).  I eventually stayed in the area of Human Resources but moved to another hospital and focused on Employee Relations and development of policies.  My role was primarily advisory in nature (over the phone or email consultations) and I learned the role technology could play in communication. 
As you can see, my nursing and HR training, as well as experience in use of technology put me in a position to be able to work from home so that I could provide care for my husband.  I can now consult with contacts by phone or email while I’m simultaneously assisting Lynn.  My job with my company is no longer 8:30 a.m. – 6:00 p.m. but is now 24/7 (24 hours/day seven days a week).  By working from home I access my emails and continue to work on projects between the times Lynn needs my assistance.  I’m a 24/7 employee and a 24/7 caregiver.  When you speak of multitasking…I’m the Queen!
I can be directing the action plan for a crisis while I am cooking spinach for Lynn’s diet and giving him his breakfast, all at the same time.  In fact, I would say it’s pretty rare that I focus on one thing at a time.  I expect that is true for all caregivers.  Multitasking is a talent each of us has to develop in order to get everything done that we need to do. We each need more than 24-hours in a day but God in his wisdom realized that if he gave us any more, we would never get any rest!  I know if I had more time, I would just fill it up with more tasks.
Though multitasking is a requirement for being a caregiver, it’s also a blessing we have been provided.  It allows us to manage our lives and the lives of those to whom we provide care.  It makes us better employees and more talented workers.  We develop greater skill and stronger personalities.  The only down side is we tend to try to do too much at any one time and we forget to take time for ourselves.
I guess every challenge has a benefit if we seek it.  Sometimes we just have to look a little deeper to find it.

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Back to work

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I have so much going through my mind today that I find my emotions on the surface for no real reason other than overload.
We’re having friends over for dinner tonight.  They are bringing the meat and I’m doing the vegetables. This is a couple we really enjoy being with and can be ourselves with so why am I feeling overwhelmed?  Maybe because it’s 1:30 p.m. and I haven’t been able to go to the grocery store yet to pick up the vegetables. Maybe because in the course of writing this paragraph, I’ve had to go back to the bedroom twice where Lynn is supposed to be resting.  Once because “I’m ready to get up,” but he changed his mind.  Once because “I need you to push my toes”  (releaves muscle tension) and again now because, “I’m ready to get up now to peddle” and each time he calls me I go back there and he is snoring….but insists the minute he opens his eyes that he has not been sleeping and must get up because his legs are aching so much. I’ll be right back…
It’s now 3:41.  Yes, I have been helping Lynn with one thing or another since I wrote the last paragraph and can now resume where I left off. I’ve cathed him, given him his two MS shots, gotten him dressed and into his wheelchair, connected him to his peddler, given him his nose spray twice, adjusted his clothing for comfort five times, heated up his lunch (eatten mine as his cooked), fed him, cleaned up afterwards, cathed him again, answered some of his emails for him, put the dishes away and sat back down to write this again.  Oh yea, and canceled our dinner plans.  He’s achy and can’t get comfortable; he’s sleepy and irritable; just not a good day for company.  What’s wrong? Probably the change in atmospheric pressure.  We have been having the weather go from hot to cold to hot and now back to cold and when that happens, it wrecks havoc with his system so it’s not a good time for company. 
Though disappointing, not having to worry about getting ready for company is actually a relief today.  It’s fun when things are going well but not when they aren’t.  We had plans today to have the dinner tonight and to go to the fabric store and Lowes this morning to get things for the device he’s building for his legs to move in bed.  We didn’t do that either. His stomach was grumbling and questionable.  He was very tired and I was on the edge of tears most of the morning  just trying to get chores done so we could go.  When life gets like that, it’s just better to stop and let it go.  Maybe tomorrow we can go those places; or maybe not.  He had his Avonex (IM MS drug)  today so tomorrow he will feel achy like he has the flu so it might not be a good time to try a trip then either.  We’ll see.
The other stressor I’m feeling is that next week I have to start finding a way to go into work some.  Yep, the full-time working from home has come to an end.  I’ve been blessed to have it for a full year after his initial hospitalization but my supervisor asked me, very gently and kindly, if I could find a way to start coming in more often.  She was very nice about it and certainly didn’t have to be; after all I have an important job there and I’m needed so they have been more than accommodating.  In fact, she still is.  She isn’t making me come back there full-time and suggested trying once or twice a week for a few hours to see how it worked.
I have to admit, I have very mixed emotions about going back. 
Worries:  Who will stay with Lynn?  He wants me to go in on either Mondays when his son, mother, and sister come to visit or Thursdays when our friend comes to help him with his writing and book marketing.  That makes sense…he’s comfortable with all of them and they all have an idea of what to do for him but now it will go from them “wanting to come” to my “needing them” to come.  I’ll need back up plans for if they are sick or have something else to do so that will add pressure every time I plan to go in…will they come?  Plus none of them can cath him so I’ll have to put in a foley.  Foley’s are more irritating and cause urinary track infections easier due to the irritation and direct access of the catheter from the outside of the body to the inside.  We’ve had one really bad experience with a UTI which landed him in ICU. I learned from that but it has left its scar. 
Plus getting ready to leave him is always a lot of work; getting meals ready, comfort items set up, and providing him with emotional comfort. He has a lot of separation anxiety when I leave him and he can’t help but to show it which makes me feel guilty of course.  If I decide not to use family, I’ll need to find someone to come in that he likes and we can afford.  That means researching what our insurance will pay and the different care options.  Ugh, just one more task.
Pluses:  On the other hand, I’ll be able to get away.  I REALLY need to get away.  I can feel the stress build up of constantly having to stop what I’m doing to scratch, adjust, fetch, move, etc.  I miss the people I work with.  I miss doing something that is productive and is an accomplishment.  I miss interacting with others and I need to be able to get away from “Hey Sweetie!” 
I think going back to work will be a good thing.  He needs to learn to let me go and I need the break.  I hope I can handle the extra work though.  To go into work means I’ll actually have to work more hours.  Currently, I can just go to my desk in my living room and begin work.  Now, I’ll have to get myself ready and get him ready and drive the 45 minutes – an hour (depending on traffic) to my job and back so all that will be lost time I’ll have to make up.  So in order to work two hours there, I’ll have to make up four hours when I get back home or on the weekend.  If I go in twice, then it doubles.  It will certainly be a challenge but somehow I’ll make it work.  I have to…so I will.

Back to work Read More »

What happens when the caregiver gets sick?

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I picked up a magazine as I was waiting for Lynn to have an MRI last week and read an article entitled, “What happens if the caregiver gets sick?”  It caught my eye because I’ve allowed that question to surface just on the edge of my consciousness several times but each time it comes, I rationalize that I’ll handle it when the time comes and move on.  I realized,  however, when I read that article that I really need to do something other than just assume it will all be okay. 
The article commented on two different scenarios–what if the caregiver got sick and what if she died.  I had thought about what if I got sick…Lynn’s care would be taken over by our family members, right?  But then I got to thinking, “what if I was rushed to the hospital and didn’t have time to get everything set up for them in advance?  What then?”
Wow, that’s scary to think about.  Lynn could not go in the ambulance. Who would come stay with him?  There is no one close by but there are people whom he could call to come.  But if something happened to me, emotionally he would fall apart and I’m not sure he would know what to do.  Let’s assume I was incapacitated and could not communicate for a while.  No one knows what medications to give him when. My daughter is a nurse and could cath him but what if he needed more supplies, plus she works full time so she could not stay with him? The children are vaguely familiar with Home Health, but not who to call. Thinking about all that, I realized I really need to develop a plan in writing that communicates the what, when, who, where and how to make sure someone could take over in case I’m not around.
Then what if I died? Lynn says, if I die, he will too, just from depression and giving up and I think that might just be true for him.  He would be so depressed, he would become non-functional. Therefore, no only would he need care but he would be in no shape to help anyone figure out what he needed.
I realize I need to get our wills updated.  We had them wills when the children were little but we need to update that now that they are grown.  Lynn would not be able to figure out who to contact related to life insurance and forget him probating a will…he would not be capable.  So, we need to find a lawyer to re-write the will who will also agree to probate the will and get our affairs settled. I also need to write out all our information for our family to use. 
This stuff is not fun to think about but it’s really as important as what I do for him every day.  I put it off because I think I will have time tomorrow, or next week, or next month and besides I’m healthy.  But what has health got to do with it? Just this month, I have known of two deaths of healthy people my age or younger from unexpected events.  It happens and we do not always have time to prepare.
So my New Year’s resolution (a little late but at least I’m thinking of it now) is to get our affairs in order.  As with all things, it will be up to me to do this and even though it’s one more thing to handle, it’s something I really need to do.  I dread it though.  It’s going to take a lot of time and thought and I had just rather avoid doing anything I can put off that is not essential.  But this is..essential, I mean, and I have to make myself do this both for my own peace of mind and for Lynn’s safety.  Ugh….

What happens when the caregiver gets sick? Read More »

My back hurts…

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Caregivers are at great risk for back injuries due to not using proper body mechanics in moving family members correctly.

Actually, it’s my side.  I tried a patient lift, but it didn’t work with Lynn’s wheelchair.  I know the one that I would like to get–it’s a modified version of what we used in the hospital–but it’s over $3000 because it’s not provided by our insurance company.  So I lift Lynn myself.  He now weighs 215 lbs.  That’s a lot to lift.  I’m no small person either. I weigh about 180 lbs, which is probably part of the problem.  If I were in shape and lost about 50 lbs., I would have more energy and more flexibility, however; as my doctor explained, losing weight is difficult when you’re under a lot of stress.  My body thinks it needs to store fat so that I’ll have the necessary energy to fight off what’s causing the stress.

I also admit I have no will power right now.  To think about counting calories or watching portions is just more than I can face.  I eat to keep up the energy, and I grab what’s easy.  I try to keep sweets out of the house, but I snack on nuts and bars and whatever I can find that I can eat while I work. I’ve looked at weight loss ads, but I’m afraid of that plus I have a lot of sensitivities to foods of it’s just too much to think about right now.

I know I also need to exercise.  I sometimes get in a few  minutes of stretching to help my muscle spasms but to even carve out 30 minutes means either reducing sleep time or work time and if I reduce work time, I have to take vacation time and I need to store that up in case he gets sick and goes into the hospital again. What a roller coaster!

I worry though about these spasms I’m having so often from lifting.  I know one day I’ll probably pull something that won’t go back and then what will we do?  I’ll have no one to take care of either of us. Then what?  I have long-term care insurance to cover me, but Lynn already had MS when I had the opportunity to get it, so he wasn’t qualified.  Just one more thing to leave in God’s hands because I can’t worry about it right now.

For now, it’s 11:00 p.m.  I finished working at 10:30 and put a pre-made meal from a friend in the oven for dinner.  Thank the good Lord (and Amelia) for those meals.  I don’t know what I would do without them.  I’ve had some Advil and Lynn’s in his powerchair attached to his peddler for the night. Think I’ll go have something to eat…

My back hurts… Read More »