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Caregiver Perspective: Hope or Regret

I know you’ve heard the phrase, “One person’s junk is another one’s treasure.” I have a new one for you: “One person’s hope is another one’s regret.”

Four-wheel drive powerchair

We have a $12,000 monstrosity my husband calls his four-wheel drive powerchair. We bought this large paperweight in 2009 but never used it because it came programmed incorrectly. Advertised as able to climb stairs, speed through sand, and out-maneuver muddy driveways without a hitch, the Predator is a basic, metal framed chair with no padding or seat, equipped with headlights, turn signals, a horn, and the ability to raise or lower its height. It’s very ugly. However, at the time, similar models were not available for the stated price in America, and Lynn desperately wanted a way to be able to go fishing.

The Predator wheelchair

Lynn loves to surf fish. However, by 2006, standing in the surf with the waves beating down on him was quite impossible for him to manage. He decided if he had this awesome wheelchair his problems would be solved. He took a chunk of our savings and ordered a Predator 4×4 to be built to his specifications and timed delivery to coincide with our July 2010 vacation. When it arrived, Lynn was too sick to even care. About three days later he was admitted to the hospital and spent the next month in intensive care. It was not until the following year that he sat in the wheelchair for the first time.

Chair needs re-programming

Fast-forward to the following summer. We towed the 4WD to the beach behind our car using a trailer (we didn’t own a conversion van). Driving a sedan towing a trailer on a highway is not an experience for the faint of heart. Horrible trip. Furthermore, Lynn was very ill on that vacation and was only able to attempt to try the 4WD once.

When Lynn did try to drive the chair, he found out the 4WD motor was programmed incorrectly and did not have enough power to pull the chair up the ramp with a person in the seat or to travel through sand. It became obvious that we need to have the chair reprogrammed. To do so we either had to send it back to Africa or find someone in America to do it. The warranty period was over and the company in South Africa was being terrible about helping us find resources in America.

I advocated selling chair

I argued that we should sell the chair and be rid of it. I felt we had made a mistake in buying the chair in the first place and should cut our losses now. I knew that Lynn was already at the point in his MS that sitting in the sun for extended periods fishing in the surf would not be enjoyable for him in or out of a wheelchair. I argued that we both knew that he could not tolerate extremes in weather such as sun or wind. I argued as well that when we went fishing that he could not hold his rod. I had to actually do the fishing for him so having the chair was not an actual benefit for him. I wanted him to sell the chair and try to recoup some of what we spent because we could use the money for so many other needs.

Expecting that Lynn would see the logic in my thinking and would feel the same way, I casually broached the subject to him of selling the chair. He was quite taken aback. He insisted he would someday use it. To prove his point, he started an exercise program to show me what he could do.

Can’t let go of the dream

That was two years ago. We still have the chair. It’s taking up space in a spare bedroom. We found a mechanic two hundred miles away to install a new motor and now it works, but Lynn has yet to test drive it. I’m sure he would actually find it too uncomfortable to use if he did. So, it just sits there in the way. Why won’t he let me sell it?

The 4WD Wheelchair represents freedom for him. It’s a symbol of freedom to go anywhere he wants to go in the face of the restrictions MS tries to put on his body. Basically, it’s a type of, “In your face, MS.” If he sells it on the other hand, he admits the MS got the best of him, again. He just can’t do that.

Chair symbolizes regret for one

I, instead, look at the 4WD as a monster. It symbolizes regret and pain for me. It’s another dream he wanted but couldn’t have. Another expensive dream that didn’t come true. Another unrealistic delusion he made up to deny he has MS to the degree he has it rather than accept his limitations and work on making his strengths as strong as possible. I just want a little reality in his dreams.

But hope for another

I regret all the money we wasted. I regret all the time we spent dealing with that horrible company in South Africa. I regret the tension it causes Lynn and me when we talk about it. I regret that I can’t seem to stop resenting that we own this thing still. I regret that he may not truly still have his denial because I want him to keep his hope for tomorrow.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • reenie53
    10 months ago

    We too faced the useless equipment fiasco. My husband decided a golf cart would be the ticket. He drove it about twice and there it sat for about 5 years. I finally made him sell it as he could not even get in it anymore. He dreams of having outdoor freedom and mobility, but the reality is his balance and strength are not there. Like the previous person, he does nothing to improve his strength or balance. I do everything for him. Everything. I wish there were a magic button wheelchair that would give him the freedom he desires, but the reality is if he had one, I’d have to run along side to help him operate it, get on and off and rescue him when he got it stuck. Saddest part of stinkin’ MS.

  • Donna Steigleder moderator author
    10 months ago

    reenie53, Thanks for sharing your story. Sounds very familiar. I truly do understand why they want to keep those things around because there is always a hope that what they are experiencing is only temporary but after a while we almost have to approach it like all other clutter, “if you haven’t used it in a year or more, than it’s going to Good Will.”

  • PattiandBob
    10 months ago

    I so understand ! Everything my husband “wants” to do / try / get I give in to because I really want him to be as independent as he can be .. but we have spent money we “don’t” have for things he cannot use that just take up room 🙁 I literally beg him to get more involved in “rehab” to maintain was little strength he has left, but he denies it helps, and hates going in 3 times a week and “wasting” his time 🙁 I understand his frustrations as it kills my day too .. but .. I am afraid that soon he will be able to do absolutely nothing for himself and I am becoming exhausted. I REALLY want him to HOPE and PLAN and LIVE .. but I want him to do it with his eyes open. We are at a point where he basically can do almost nothing. I need to help him do all transfers, toilet him, help with cathing, cut up his foods, drive him everywhere, dress and undress him, bathe him .. and on and on. He can still feed himself <3 and if I put his things out he can still brush his teeth and use the water pic, also generally he can shave .. but that is pretty much where it is at. I love him dearly, but again .. we've been doing this for a LONG LONG time and my OLD bones and joints are tired too (I'm going on 72). Sadly we cannot afford to "hire" help.

  • Donna Steigleder moderator author
    10 months ago

    PattiandBob, Sounds familiar. Have you looked into whether you might qualify for Medicaid? If you do, you can hire an assistant that they will pay to help you with some of the care. We still have too many assets to qualify but just in case you didn’t know about that as a possibility, check into it. Having occasional help has been a lifesaver for me. I was able to get someone through another source and it has saved my sanity and health. If you need more information, let me know. Hang in there. Donna Steigleder, Moderator

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