Realities of Life

For the most part, our home life is fairly stable meaning we have the same things happening day in and day out. We have a routine – I get Lynn up for the morning and help him with his exercise, take him to the bathroom for his bowel regimen, put him back to bed and do a partial bath including skincare, and he takes a nap to recover from that activity. It takes about three hours to do all that. None of it is complex (except sometimes the skincare) but most of it is very physically demanding and Lynn can do nothing to help with it except cooperate with what I do to him. Once this morning routine is completed, the rest of the day is pretty basic attendant type care (assist with eating, getting things to drink, changing position, helping him write, etc.).

At night, the work increases again by preparing meals, etc., for the next day, bath time, nighttime rituals, etc. Including my own personal care and feeding, it takes about five hours to get it all done and get us to bed. Again, the work is not complex care; just physical and time-consuming. None of this is complicated but all of it is necessary to maintain quality of life that is not miserable every minute of every day till you die so it’s very important stuff. It is also stuff that if you cannot do on your own, is very, very expensive to have someone else do for you unless you are fortunate enough to have family or friends to help you out.

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Something New to Deal With

Every time Lynn starts acting differently for several days in a row, I start to wonder if it means there’s some new problem we have to face. MS can affect so many different body parts and functions that I just never know if a new problem is MS or something else.

For instance, Lynn has been sleeping a lot. He talked to his dietitian who thought he needed more protein in his diet; so, we added two protein shakes a day. He loves them and he is putting on a little more weight (he lost a lot dieting and not tracking how much he was losing) which is probably a good thing, but he still sleeps much more than he used to sleep. Now, I know MS causes fatigue and I know that our sleeping habits are poor because he wakes so often to empty his bladder but is this just the natural order of MS; lots of fatigue leading to the need for more sleep? Should he sleep this much if he’s tired or does sleeping a lot cause him to feel tired? Could be either. Should I be concerned or just let it go as part of the normal course of MS?

Continue reading at https://multiplesclerosis.net/caregiver/something-new-to-deal-with/

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Blessings from Pain

Many caregivers find strength, comfort, and support from their faith. Physicians report that patients who have strong belief systems recover from major events quicker and seem to have better success rates than those who have no belief systems.

I’m sure you have heard others reference the saying “turn lemons into lemonade.” It implies taking something bad and turning it into something good. Our pastor challenged us to think along those lines but with a different twist. When something has you down or something bad/inconvenient happens, try thinking about why that’s a good thing. I have to admit I have difficulty doing that much of the time but each day I try to think of at least one thing good about that day, be thankful for it and share it on my Facebook page. It helps me to, at least once a day, think of something positive. I’ve been pretty negative lately because Lynn and I have not been feeling well and I’ve spent three weekends in the last two months in the emergency department without any answers regarding what is causing me to have abdominal pain. I know it’s nothing serious but I don’t know what it is and I’m getting tired of it. Anyway, I’m also tired of being so negative. Therefore, my post today is my attempt to take this challenging period in our lives and make it into something positive. Here goes….

I am blessed that I have been in the hospital three separate times for three overnight stays because it has allowed my family and me now to have a trial run on what we would do if I was sick for longer than overnight.

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Give Me a Hand

Someone asked me recently if I had ever written about how we adapted to Lynn’s loss of function in his hands. I haven’t, but it’s a topic that might be helpful to some, so here goes.

Lynn’s loss of the use of his hands gradually progressed over time. I’m guessing the decline occurred over maybe 3-4 years with generalized weakness initially and now no strength to speak on either side.

He has almost no function in his left hand/arm and minimal in his right hand/arm. I think he started noticing a decrease in responsiveness about the time of his 2006 diagnosis. I say that because I came in one day to see him comparing the speed at which his fingers would move between the two hands.

It was that sight that made me realize that his weakness was not just in his legs. I demanded that he see a doctor because no longer could he insist it was just his sciatic nerve. As I told him, sciatic nerves do NOT affect the shoulder, arm, or hand movement, so it was more likely to be a problem in his brain or upper spinal cord. He agreed, and so came his first MRI and the diagnosis of MS.

Continue reading at https://multiplesclerosis.net/caregiver/give-me-a-hand/

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What Resources are Available if I’m Not Around Anymore?

The way you become a caregiver has a significant impact on how you adapt to being a caregiver.

About this time last week, I was experiencing discomfort in my abdomen. As the hours progressed, the pain got worse until eventually it was so intense that I was vomiting. Unable to sit up, I was lying on the floor moaning in pain with no access to help within reach. Fortunately, Lynn heard my moaning and used his emergency response button to call for help. The dispatcher was able to summons the rescue squad and contact my daughter to come to our house to stay with Lynn until his son could arrive to take over (she has a special needs child she had to get home to before her husband left for work).
As I lay on the floor in agony, what was going through my head? I need to find a break between vomiting to put a Foley catheter in Lynn or his bladder will become too distended. I waited for my next break after vomiting and while doubled over, collected catheter supplies and inserted it before I was unable to remain upright again. At that point, I was able to focus on me.
Continue reading at: https://multiplesclerosis.net/caregiver/what-resources-are-available-if-im-not-around-anymore/

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Planning for the Future with Our Children

Sometimes I forget the impact our life has on the rest of our family. Today, that impact is more evident as I wait for our three children and their spouses to come over to “talk about the future.”   I have been having just such a conversation with my brothers and parents but hadn’t really thought much about needing to have that conversation with my own children.  However, they have requested an opportunity to discuss the “what ifs” that can occur either as a result of my disability or my death.
As a result of secondary progressive MS, Lynn can no longer provide any self-care.  He relies on me for everything from feeding to assistance with going to the bathroom.  It’s a lot of work but we have a routine that works for us pretty well. However, what if I suddenly could not provide that care? What would happen to Lynn?  And what if the “what if” was not my death but my disability and not only would total care be needed for Lynn but also for me?  The obvious answer to that is that our children would have to figure out what to do with us.  Therefore, I understand and appreciate their desire to have this conversation with us today.
All three of our children are in their late twenties, early thirties. Two of them have just been married two years or less and the other one has been married longer but has a young child with special needs.  All are in those early years of learning to make it on their own and struggling to do so in today’s economy.  I also know that each of them would do anything for us.  They are very good about helping out and they want the very best for us, but realistically, if something happened to me so that I could no longer care for Lynn, there would certainly be an impact on them as well as me.
With any illness or injury there are mounting bills to pay.  If we were both dead and had outstanding debt that was not paid by life insurance, the bills would go to our heirs. That doesn’t seem fair but if I’m not mistaken, that’s how it is. Therefore, to protect my family, I have bought supplemental life insurance that should be enough between what my company provides and the additional I carry, to pay my last expenses and provide the ability to care for Lynn.  I can keep this insurance as long as I’m employed but I’m also 57 years old now so I may only have that option for another 10 years, if that long.  Hopefully, I’ll be able to afford to carry that as independent coverage afterwards though; so financially, I think they will be okay.
Providing Care
Money is one thing but who is going to be responsible for taking us in?  None of them have houses that would allow Lynn to move in along with all his equipment and supplies.  Therefore, they would either have to move into our house or move Lynn into an assistive living arrangement (or more likely a long term care facility).  I know that none of them want to do that but sometimes there is no choice in the matter.  I have some Long Term Care for me to help pay for a place for me to go but Lynn was in the process of being diagnosed with MS when that option became available with my company so he was turned down for coverage.  Would they be able to afford a long term care option or would someone have to quit their job to stay home to care for him? And, if that happened, could they afford for one of them not to work?
Continue reading at: http://multiplesclerosis.net/living-with-ms/planning-future-children/

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Is This It? I Thought It Would Be Bigger

For the past year, I have excitedly looked forward to this year’s beach vacation.  I have dreamed about how awesome it would be, talked about it with anyone who would listen, and looked forward to it like a child looking forward to a Christmas Eve visit from Santa. I was so excited because I thought I had found the perfect place for Lynn to go that would meet all his needs and allow the rest of the family to have a great time. This place sounded perfect.  It had an elevator, roll in shower, mobility assistance devices, wider doors, and a pool that slanted so he could roll into it on a floating wheelchair.  It sounded perfect…
Reality set in when we arrived. The first disappointment was that I misunderstood how high the elevator went in the house. I thought the elevator went to the top because it went to the second floor; however, this house has three floors.  I counted the first living area as the first floor and the entrance floor as the ground floor so when I asked if it went to the second floor, they said it did (and were correct) but I envisioned the third floor as the second floor instead. I was very disappointed because my parents and Lynn’s Mom have difficulty with steps.
Next issue: the elevator.  When we first arrived, I read the sign that said the elevator only held 500 pounds so between Lynn and the power chair no one could ride in the elevator to operate the controls.  He has very little hand strength so operating the elevator on his own would be difficult and frustrating.  I finally found the switch the next day to control the elevator from outside the cab so even though I was disappointed initially, it all worked out.
Then, we went to our room.  It was the smallest room in the entire house and I had more than twice the supplies and luggage needed for a week’s worth of living and caring for him.  Though it had a roll-in shower (a big plus), the actual space in the bathroom was very limited.  Then, when I tried to sit Lynn on the toilet, it was a disaster.  The toilet was sitting so close to the wall that the handrail placed on that wall to assist someone in getting up or down prevented him from being able to sit in the center of the seat.  His spastic arm was not able to be moved beyond the height of the rail and he was sitting in extreme discomfort besides not being safe.  I had to quickly get someone to hold him while I went to get the shower chair for him to sit on. However, the shower chair didn’t have a bucket so it could be used as a toilet chair so I had to improvise by using a lined trashcan–not a good experience.
The bed in the handicap accessible room was a queen size and took up most of the room.  That left very little room to maneuver his power chair so I had to move the bed against the wall to make more space.  The bed was high so it made transfers to and from more difficult.  While there was a TV in the room, it was small and difficult to see from a distance. The bathroom sink was just a sink and no vanity (though there was a good sized medicine chest there).   All and all, very disappointing and not handicap friendly….at least for his handicap.
And that’s my point… “his” handicap. This beach house is actually awesome. It’s big and spacious with lots of amenities, a wonderful pool, and lots of space on the second floor to move around.  I’m sure that if it was used by someone who did not need to share a room, who only used the over-head lift equipment to get in and out of the bed, whose toileting was not done on the actual toilet or who managed it without assistance, the challenges we had with the room would not be an issue.
I complain often that a “handicap accessible” label is a distinctive misrepresentation of most places.  Most of the time it just means handrails or bars attached to the wall in the bathroom.  I’ve never actually been to a place that was really equipped for someone totally mobility challenged.
continue reading at: http://multiplesclerosis.net/living-with-ms/thought-bigger/

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When Lynn and I were dating, I knew that his father had only lived to be in his forties and that he died from complications of MS. Having a medical background, I had a vague, general knowledge of the condition but primarily just enough knowledge to know that it affected mobility and the eyes and I had had a few employees make accommodate requests related to memory.  I knew that genetics was a factor, but not an absolute, in determining if he would also suffer from MS.  I also knew that while Lynn had his vises, he was good about what he ate and he exercised regularly; so, in my opinion, he was more likely to have complications from his smoking than he was from having MS.  I seriously considered all these factors and went into my marriage with full knowledge of what I might encounter.  I actually was very reluctant to get remarried, not due to the MS, but due to the fact that marriage was so difficult and even if you tried your best, you can’t control the other party. When I finally decided to marry Lynn, I went into marriage with a full commitment to staying married for sickness or health, richer or poorer, etc. I had survived one divorce and didn’t want to go through another.  In other words, my fear was not of the MS but of the relationship difficulties itself.
And, I was right to be concerned.  Those first few years were VERY difficult trying to blend two families; taking two very independent and totally different personalities and trying to learn how to compromise and adapt.  We struggled.  We had counseling.  We became distant and we sought and found ways to become closer.  We had to work at it; it did not come naturally to either of us. We were both very afraid of being hurt again and therefore, afraid of totally giving ourselves to the marriage. After all, we both knew how it felt to have loved and lost; but throughout it all, whether or not he might have MS was never a factor.
Then, one day I found him comparing how fast he could wiggle his fingers on one hand as compared to the other.   I could see the difference.  He had seen a physical therapist about occasionally having “drop foot” after exercising.   He had complained of numbness and some weakness in his left leg which was attributed to sciatica.  I asked him during those occurrences if he had mentioned his family history of MS and he said that wasn’t what it was and his doctor had his family history.  I knew then; however, that he had MS.  My daughter, who was in nursing school at the time, and I talked about the fact that we both believed he had MS.  Even his son, suspected it but Lynn was in denial.   I finally got so frustrated that I confronted him about my concerns and demanded that I be allowed to go with him to his next appointment because he would never give me a straight answer about what was discussed.
As it turned out his next appointment was with a cardiologist (he also has mitral valve prolapse).  The doctor asked him how he was doing; then, he asked me.  I told him Lynn’s heart was fine but something was wrong with his nervous system.  Lynn shot me a look of daggers but the cardiologist promptly set us up with a neurosurgeon because at the time, I thought it was possible it could be a disc issue (since he said MS had been ruled out by his doctor already).  The rest is history.  Blood work was done; as was a MRI and a lumbar puncture, and as we were driving home from an anniversary visit to the beach, he got the call that said it was MS.
I already knew in my heart what the diagnosis would be and I think Lynn knew but didn’t want toknow. However, actually hearing it still kicked us in the gut.  I have to be honest that fear of what was ahead did cross my mind. Lynn and I were distant emotionally at that time because he would not share his thoughts or his life with me.  He kept me at a distance.  I think he was afraid I would leave if he got MS.  His parents had divorced while his father had MS and though I don’t think the divorce was due to MS, it probably played a part in it.  However, for us, it had the opposite effect.
I became Lynn’s advocate.  I shielded him from too much information (at his request; he still wanted to deny as much as possible); I did all the communication with the doctors and healthcare facilities.  He finally recognized that he needed me and he let me in and though that process we are closer now than if he had not had MS.  If he had not been diagnosed with MS, who knows if our marriage would have survived?   I like to think it would have because we are both Christians who are totally committed to staying together but I’ve learned you can never say never…about anything.
continue reading at: http://multiplesclerosis.net/blog/marriage/

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Second-Hand MS

Before Lynn was diagnosed with MS, my experience with the condition was from a distance.  I knew of a third cousin with it that family members talked about in sympathetic tones of doom.  I had a few encounters with colleagues who had MS and who shared some of their struggles with me when they asked for my assistance in obtaining a reasonable accommodation (I work in Human Resources) so they could perform their jobs successfully.  I remembered some information from my nursing training twenty-five years previously but it was mixed in there with the rest of the chapter on neurological conditions so I wasn’t sure if I was remembering symptoms of MS, Muscular Dystrophy,  Myasthenia Gravis, or something else. I knew enough to know that I needed to learn more.
Our first appointment with the neurologist was a little over-whelming.  We came home with a bag full of literature to pour through to decide which medication he might want to try, the option to participate in a study, and several pamphlets that basically were along the lines of, “so now you have MS…”  Lynn didn’t want to have anything to do with any of it.  He gave it to me; said, “tell me what you think,” and turned his back on the entire thing.  At that point, I believe he was too depressed to let anything in.  He wanted to be in denial and would not even let us say aloud that he had MS.  His philosophy was, “If you say you have it, you give it power over you and I’m not going to do that.” While I could understand where he was coming from, on the other hand, MY philosophy was, “knowledge is power,” so we immediately separated into our two corners to deal with the situation.
…So began my journey of having “second-hand” MS.
Continue reading at http://multiplesclerosis.net/living-with-ms/second-hand-ms/

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I Like Ours Better

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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Arsenic, Mercury, and Lead – What do They Have to Do with MS?

If it’s one thing I have learned in caring for my spouse, it’s that in order to keep him healthy and functioning at his optimum level, I have to take a holistic approach to his care.  Taking MS drugs to prevent exacerbations helps prevent significant loss of function; however, if his body is not in the best shape possible to fight attacks from viruses or bacteria or if he’s injured or allows his body to become de-conditioned, those issues are just as significant to his well-being as the medication he takes. Therefore, Lynn’s wellness regime includes a diet that targets mitochondrion function (repair of nerve cells); he exercises every day focusing on different muscle groups; and he rests when he gets tired.  At his last neurologist visit, his functioning was better than the visit before and as it had been the visit before that.  In fact, the neurologist stated, “You’re surprisingly better and it’s not due to what I’m doing for you.  Keep up the good work.”  It seems that he’s doing all the right stuff so why is it that he continues to feel so bad?
Lynn has been taking Rebif for almost two years now.  If you’ve taken Rebif or know anyone who has, it has the ability to make you feel like you have the flu; however usually that gets much better as your body adjusts to it.  That hasn’t happened for Lynn.  In addition, as a side-effect of Rebif, his thyroid stimulating hormone levels became high indicating that his thyroid was not working properly.  Hypothyroidism makes you feel cold, extremely fatigued, and generally miserable. So hypothyroidism was blamed for why he felt bad; but then the thyroid levels began to get back to near normal but his fatigue and general malaise seemed worse. Was this just another MS issue he would have to live with? Maybe not….
The best healthcare provider he has had by far to date is not his neurologist but his dietician. She’s amazing. We were having one of our regular consultations with her and describing how bad he felt and she quickly became suspicious that something else might be going on. She asked his primary care doctor to do a urine test for heavy metals.  She requested a six hour provoked test which required him to take some pills that stimulated the release of heavy metals that might be stored in his cells into his bloodstream and later excreted into his urine.  This test would show potentially if he had stored heavy metals in his system that might be affecting his health.  We were shocked at the results!
To continue reading, click here: http://multiplesclerosis.net/living-with-ms/arsenic-mercury-and-lead-what-do-they-have-to-do-with-ms/

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I'm the Primary Healthcare Provider

Lynn has never been good at sharing information. He’s one of those men who can go to the doctor about a problem, find out he has a new medical condition, start a new treatment program, and when he comes home will say, “The doctor says I’m fine,” or say nothing at all. He did that for years before he was diagnosed with MS. Used to drive me nuts! I have a nursing background and when he came back from the doctor, I wanted to know everything—his blood pressure, what lab work was done, what was the differential diagnosis, what is the treatment plan, what options was he given before he made a choice, etc. Needless to say, I never got that level of detail from him because not only did he not ask those questions but if he did, he didn’t “hear” the answers and could not, therefore, provide any details.
One day after such an experience, I blew up and demanded that I be allowed to accompany him to his next visit.  Not only was I going, but I was going to make an appointment for him with a neurologist and he was going whether he liked it nor not!  I knew he had MS. I also knew he was not telling the doctor what he needed to share so that the doctor would consider that possibility. THAT was the moment that I truly assumed the beginning of my caregiver role.  I decided his medical care was coming under my supervision and that was that!
To read more go to:  http://multiplesclerosis.net/living-with-ms/im-the-primary-healthcare-provider/

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Radical Mobility Lets Us Down Yet Again

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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Accepting What You Grow Up With

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

Accepting What You Grow Up With Read More »

Just Say "No"?

I have never been one to find it easy to say, “no.”  I’m a people pleaser, I guess, but I find delight in making others happy and I enjoy helping people.  However, I guess for my own sake, and, maybe sometimes even for theirs, I should learn to say ‘no’ but how do you know when it’s the right time to do that?  Here’s some examples of times I’ve found it hard to say ‘no’ to Lynn.
When Lynn got his “back pay” from Social Security.
As is true for everyone, it took us long time to get social security benefits.  We had to wait until we could go before a judge who could see for himself that Lynn was totally disabled. So when he got his check, it was rather sizable.  At that time, he had not been in a wheelchair very long and still had good use of both arms.  Lynn loves to surf fish and he was looking ahead to vacation.  He wanted a way to still be able to surf fish and wondered if there was such a thing as a 4-wheel drive wheelchair.  He did some research and found just what he was looking for…in South Africa.  It could go over sand, climb steps, elevate his seat so he could look over things, had headlights, a horn, ahh…it was cool.  It gave him hope that he could continue to do what he enjoyed most in life for leisure time–fish.  But it was VERY expensive!  It would wipe out all the back pay if he bought it.  He really wanted it. To him it was a symbol that his disability would not wipe out his ability to have fun.  It represented freedom and gave him the feeling of being in control and out-smarting MS.  However, he felt guilty about using all that money for a toy.  He looked to me for permission to buy it.  What did I say?  “Yes,” of course.  How could I take away his hope? It was, after all, his money and not money we had already been counting on to pay bills (though secretly, I had several credit cards I wanted to pay off that I had run up with costs associated with his care). But, the main reason was I just could not take away his hope.
Was that the right decision? Yes for his mental health; no for our finances.  To this day, that machine has not worked.  We took it on one vacation and it would not move in the sand. We  sent the motor back to South Africa in March of this year and have yet to get it back.  Right now it’s a huge obstacle in my living room that has no motor and cannot function at all.  Had I known this, I would have said ‘no’ but not knowing this, his hope was more important to me than the cost.  Therefore, I still think it was the right decision because having hope when you are disabled is essential to life.
Purchasing a New Lift Device
Once again I’m faced with whether to say ‘no’ or participate in hope and once again, I’m going with hope.  Lynn wants very much to stand and if possible to walk, again.  Who wouldn’t want that?  He’s convinced that if he works his muscles well enough that he will be able to do so and that it is not the MS that has caused him not to be able to stand but the deconditioning he experienced when he was hospitalized two years ago for so long.  The doctors can’t say for sure though they believe that progression of his MS is the reason for his immobility.  However, with the change in his diet to following the Terry Wahl MS diet and his dedication to exercise, he truly is moving more than he has in years. Who’s  to say that he could not eventually stand if he was able to recondition all the necessary muscles?
The problem with reconditioning muscles necessary for standing is that there are so many of them.  Doing exercises to isolate one muscle group at a time requires considerably more energy than he has available.  Therefore, once again he has done his research and identified a device that will help him stand with assistance.  It’s called a Rifton TRAM. It allows the caregiver to put a saddle under the hips of the patient and gradually lift them to a standing position.  With the saddle in place, they have support in the amount needed to bear weight.  The advantage of this is that by bearing weight, he can activate more muscle groups plus the stress on the bones, makes the bones stronger.  Osteoporosis sets in when there is no stress to the bone and that causes bone deterioration which makes the person more susceptible to fractures.  So by using the TRAM not only could he strengthen muscles to stand on his own but could help prevent future bone fractures. 
We are in the process now of getting the information necessary to the insurance company.  However, even if they do not approve it, he still wants to buy it because he’s convinced of what he can achieve with it…and who am I to say he can’t?
What’s going through my head though?  Will he be crushed if he cannot stand and go into a deep depression?  Can we afford to pay the full price at a time when year-end bills are coming?  His son’s wedding is in four weeks and we have to prepare and pay for the rehearsal dinner as well as Lynn’s clothing and get their wedding present.  Christmas is coming which means presents.  And of course, there are the multiple bills that need to be paid.  Knowledge of all these needs causes me a lot of stress as I agree to buy the TRAM even if the insurance won’t pay. 
I really want it to work for him but I keep remembering that behemoth wheelchair in my living room and don’t want another useless device in my house so agreeing to this takes a lot of faith on my part.  I know however, that God will take us through whatever lies ahead and if it doesn’t work, He will help us both deal with that.  If it does work, then He will be gloried in helping us to get the device through faith. 
So, once again, I just say, “Yes.”

Just Say "No"? Read More »

Was That a Vacation?

We were on vacation when I wrote this blog this week. I was not able to post a blog this week because, unknown to us, the condo we use changed their practice this past year and each home owner is now required to provide their own internet service to their renters.  The home-owner for the one we rented, apparently decided internet access was a non-essential amenity for their guests (I found out later that most initially believed that to be the case but most are changing their minds now with all the complaints).  Fortunately, the condo office allows you to come to their lobby and “borrow” access while there. Unfortunately, for some reason, I could not get my computer to work with their service (probably my limited knowledge of computers being the “fault” in this case.)
Every year I look forward to vacation and being at the beach.  Lynn’s son and fiancé, goes with us as well as my daughter, her husband, and this year we have the addition of our new grandson.  The family time is wonderful and something I really look forward to but vacations now are very different from years gone by.
First off, the preparation is different…all preparation, along with all the daily activities of our home-life are my responsibility.  Periodically, Lynn would provide instructions like…”don’t forget my small white fishing rod,” (which I forgot) and “I want to bring the red and blue weights to use to work out…no change that to the small and large gray ones…no I think the red and blue ones will be enough…” By the time I finished packing, I had ½ a suitcase of clothing for myself, my computer, and a few books (none of which I had the opportunity to read other than a few chapters in one) and everything else was about Lynn.  I brought an extra-large cooler for all his specially prepared food; clothes for hot, cool, cold, and warm conditions plus layers for in-between; exercise equipment; shower and toileting equipment; his medication and supplements (which aren’t a few); his peddler (plus a spare in case one broke); his foot massager; catheter supplies; nebulizer and supplies; spare wheelchair; spare cushion for power chair; charges for all aforementioned equipment; a microwave for our room; and many other miscellaneous supplies.  Yes, I packed our house.  I barely had room for us in the van!
Then the drive down is very different.  He used to do all the driving because I get very sleepy when I drive.  Now I do all the driving and just being the passenger is extremely tiring for him.  It’s a debate whether to stop and let him out of the van to rest or to keep going so he can lie down when we get there.  Since we were traveling with a new baby in the car behind us, we stopped a few times for feeding and coffee for me so I could stay awake before we decided to travel separately.  Once we got to the condo, it was time to unpack and arrange everything…no small feat.
It took almost two days for Lynn to recover from the trip.  During that time he needed almost constant attention…and he seems to think I’m the only one who can do anything for him.  By Monday night, I was in tears.  My family vacation was no more than me in a room with the door shut (because Lynn was cold) taking care of Lynn’s every need and him  being unhappy because he didn’t have access to the internet, the cable package in the condo was limited, and he felt lousy, exhausted, and miserable.  Plus he decided he would try standing up with the help of our son and son-in-law…which didn’t work at all, so he was depressed about that.  What a vacation!  
I finally spoke up and shared my depression about spending our entire vacation shut up in a room with our children in the next room but inaccessible to me.  He realized what he was doing and then it got better.  He came out of our room each night after that point for us all to watch a movie together plus I put in an indwelling-catheter two days and managed to go to the pool for an hour (where I slept).  In fact, I’ve spent a lot of time on this trip sleeping.  I think my body is trying to tell me something.
So after a rough start, things got better.  The others put in a lot of effort to make sure I had some “me” time.  I had to remind Lynn periodically that others, besides me, could help him when he needed it but he would better at asking others for help when I reminded him of that fact.  Plus on Thursday when he tried to stand up again, he actually did better.  He could not really stand but he was almost there, so he was more satisfied with his efforts.  We also watched “JAWS” together and had a JAWS breakfast in honor of the meal scene in the movie.  It was a very nice time of family sharing.
One morning we got up at 5 to go fishing but by the time he could get ready, the sun was too hot and that trip was cancelled.   We tried again the next day, skipping some of his morning routine, and he managed to be on the pier for about two hours before he had to come in.  He was too tired to hold his own rod though which was a disappointment.  He tried twice but just didn’t have the strength to control it.
Today is the day after we got home.  I’m exhausted and irritable from the unpacking and trying to get caught up.  He’s exhausted and irritable from the traveling and being very needy but I guess things will settle in soon.  It’s good to be home though where at least he can get on the internet to entertain himself and watch his favorite programs.
So, “Was this vacation?”  Yes, it was…and one was able to enjoy periodically.  Different from the ones in years gone by but one still full of family and love and occasionally relaxation…just different from what we did in the past.
… Just another adaptation that comes with being a family caregiver.

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Short Trip but Major Planning

If you are a caregiver for someone who is totally dependent on you for everything, you know that there is no such thing as a “quick run” into anywhere when you take the person you are caring for with you.  Today, Lynn and I had an appointment with an attorney to sign our wills, power of attorney, and medical decision maker documents.  The location was approximately 35 minutes from our home so I estimated we would be gone two maybe two and a half hours.  I also planned to stop at the post-office, return something to the drug store, and stop at the bank.  Here’s how it went…..
The appointment was for 10:30 a.m. so we got up at 7:00 to get ready.  After cathing Lynn and arranging things within his reach, I went to put on clothes and prepare his morning supplements.  Then I returned to unstrap him from his peddlar, put on shoes, etc. and return to the kitchen where he took his supplements and exercised while I ate breakfast.  Then it’s into the bathroom for his morning routine, and to bed to rest while I checked messages at work between answering his calls for assistance.  Then getting him up, dressed, situated into his wheelchair, and groomed for the trip. As he’s waiting, I assemble his “bag” of supplies to go out….saline nose drops, Valium for spasticity, his cell phone, cold water with a straw, a smoothie for a snack, supplies for up to four catheterizations, getting what I needed for the post office, taking it to the van, cathing him one last time, getting the van ready,  securing him into the van and locking up the house. 
Then we’re off to the attorney’s office.  Almost there and he needs to be cathed.  Pull over and take care of that (if you’ve never cathed someone who is in a wheelchair while they’re in a van, you don’t know what you’re missing).  We get to the lawyer’s office, I find a place to park in the shade (it was supposed to be near 80 today) and go in to say, “we’re here.”  Lynn can’t go in because the building is not handicap accessible for wheelchairs (as we found out the hard way the last trip when his wheelchair got stuck in loose rocks when he drove off the sidewalk trying to maneuver around bumpers of cars).  Our lawyer is very nice and he gets everything ready and brings the papers and witnesses to Lynn in the van.  All’s well and we leave.
Next stop is the drugstore.  He stays in the car and I run in to return a mobility table that was supposed to be able to attach to his wheelchair which didn’t.  Fortunately that was a five-minute stop.  Back to the van and he needs to be cathed again but where we are is too public.  I’m craving caffeine so we go to Starbucks where I can park away from viewing eyes.  Another “in van” catheter experience.  Then coffee for me and tea for him after I help him get his smoothie for a snack and strap him in again so we can move on to our next stop. 
The next stop is the bank back near our house.  He needs to get out this time because we are setting up a new account by closing his business account.  That takes about 20 minutes plus we got a safe deposit box for the wills.  The bank was easy to access except doors had to be held for him to drive the wheelchair though since there were no automatic openers.   Back to the van, strap him back in again, and he needs to be cathed again.  I need spinach at Foodlion so we go to the far end of that parking lot, I cath him, again, run inside and return to realize the post office, which is our final stop, would be closed now for lunch. No matter, Lynn is exhausted by now and so we head home for me to feed him and hook him up to his peddlar to help him relax. 
I unload the car, set everything back up for his easy reach, run to the post office alone (which I must say is much easier and quicker alone) and get back in time to, yes, cath him again.  By now it’s 2:30 and I’m ready to begin my day at work….
It’s great to be able to get out of the house now using our van which makes the option to go places actually a possibility.  However, travel is no easy matter.  Supplies must be taken, nourishment must be considered, and comfort must be planned for.  Much like taking a small child somewhere, travel takes significant planning but somehow taking someone who is 6 ft tall and weighs close to 200 lbs is a bit more complicated than taking a 25 pound infant….

Short Trip but Major Planning Read More »