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Thread: Partner being involved with equipment needs

  1. #1
    Senior Member elarson's Avatar
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    Partner being involved with equipment needs

    I originally posted this in a thread on the the Equipment forum, but I think it better goes under Caregiving.

    I've been handling all of my husbands equipment needs, who is a full-time wheelchair user after strokes 3 years ago. Shortly after his strokes I knew he could not handle a lot of what was required to get a wheelchair (vision problems, lack of concentration, fatigue, not being able to type to do research, etc.). It took about 6 months to get everything sorted out with funding and get what was recommended and maintained by the government. That was a very good power chair and a very basic manual chair for transport and part-time use.

    He never used the power chair and the manual chair is falling apart and not at all suited to full-time use. We decided to start over with the whole process earlier this year to get a ultralight manual with a power add-on. We decided to do it in a way that we choose, purchase and maintain, rather than have the government do it. We both knew and agreed that it was going to be a hassle with the government and take a lot of work for both of us.

    Although I don't mind taking the lead on researching his equipment needs, I think he does not take an active enough role in it, now that he is healthwise more able to. Consequently, I feel the stress of being fully responsible for what we choose, and for some things, only he knows what feels good or works for him. I don't want to end up in another situation like last time and have him not be able to use what we get, and consequently more limited in what he can do.

    I think he is sometimes tired of hearing my relentless questions about equipment. I really don't think he has accepted what has happened to him, and me asking, measuring, brainstorming is bringing him some stress. I'm pretty much doing this on my own, because he does not really want to talk about it, and sometimes gets angry when I do.

    My head is spinning with all of this right now, and I sometimes think I go too far. For me, getting my guy back mobile and out there as much as possible is my number one priority. I have a business also, and really should be attending to that more, but I really want to help get him sorted properly and as happy as he can be with equipment that works. I can't really change what happened, but this I can help with. Probably that is very niave of me....

    I do think my husband is grateful for what I'm doing, but he just does not want to dig into what is needed the way I think is needed for such important lifestyle affecting decisions. We are also very different, in that I am more of the techie type, and he is more of a philosopher type. He is also more compliant, and will sometimes agree with the powers that be rather than stand up for what he really wants/needs. Added to that, I am a native English speaker, and he is native Dutch speaker. Although his English is excellent, and my Dutch is workable, it is harder to understand a lot of this stuff in other languages. Because there is far more information in English, and I can request information easier in English, I tend to take the lead on it (it's just easier for both of us).

    Sometimes he contradicts decisions we have previously made together when others get involved and make recommendations that really do not fit the situation. I then find myself negotiating on both fronts to get him what does fit the situation, which can be very tiring. It's also really hard to get him to try different options. We went to a rehab show and it was difficult to get him to demo equipment, though I do realise it is very tiring for him. He did briefly try a few chairs and a few power add-ons, but I can't get him to try different cushions, seat backs, etc. Unfortunately, the local dealers do not keep these on stock to demo, so I am mostly guessing at what he needs based on asking questions to him along with research and what I read on forums (especially this one).

    A few months ago he said "getting a new wheelchair is not what I planned to be doing for my 50th birthday". I felt so badly for him, because it is also not what I planned for us at this stage in our life. Nevertheless, it is what we need to do, and I always think it's better to get into it and try to enjoy the possibilities and results, rather than be sad because it is needed. Not having the equipment he needs is also making him very house bound, and we are both missing out on a lot of things we could be enjoying together, not to mention me having to do everything outside of the house.

    So my question is if you have any input so that he wants to be more involved with his equipment needs? I'd be especially interested in what you guys think, because I have a feeling some of this may be about male pride. I know that many of you take a lot of pride in the process of figuring out what is needed and the equipment you have. I would love for him to have a feeling of accomplishment and success at the end of this process, and I think that will only really happen when he is really part of it.

    P.S. I plan to copy him on this thread to read your responses.
    Last edited by elarson; 10-03-2012 at 09:04 AM.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

  2. #2
    Senior Member Foolish Old's Avatar
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    Hi! Equipment is always a hassle. Shopping isn't easy, and paying for this too expensive stuff can be depressing.

    For me, (I'm not a psychic, so I won't pretend I know what your husband thinks) getting adaptive equipment was an admission that I wasn't going to "be my old self" any time soon. Very hard pill to swallow. Denial was a coping mechanism that kept me going for the first few years. I did little other than exercise and sleep. I didn't smile for years. Exercise. Sleep. Exercise.

    One day I had to admit that I wasn't making progress. At least not the kind of progress it would take to restore me to my usual way of doing my life activities. I was fortunate to come out of rehab with a decent chair, so that was a done deal. Haven't yet followed through (after all these years) on getting all the other things that would make my life easier and fuller - but I'm getting there.

    Good luck.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  3. #3
    He should be taking the lead roll in all decisions concerning him. Being dependent on you is unhealthy and will only make him feel like less of a man. My Mom and 4 sisters did everything for me in the beginning until I said, no more.

    The adrenaline rush I felt from participating in wheelchair sports really helped me to snap out of my funk. Is he interested in sports at all? Sounds like he is still grieving. Speaking to a professional might be a good idea.

    Jim

  4. #4
    I completely understand, and sympathize.

    FO has some wise words. My father definitely deferred making any decisions/planning about equipment because that was an admission that he would need the equipment long term and would not be improving as he hoped. This still continues 5 years after his injury. It is a mixture of denial, stubborness, hope....

    Most importantly though, if there are cognitive changes due to the stroke that are contributing, then this is more challenging. I have basically accepted that my father will not take the role in managing his medical equipment and other needs as I hoped he would.

    However, it is imperative that if depression is a playing a role here that you make sure his doctors know about your concerns and that you consider all options. He needs an outlet/support - outside of you. Whether that is an anti-depressant medication, a therapist, a support group, friendships, activity/interest/job/volunteering outside the home.... Of course, these are not easy "solutions" to establish...

    It is really, really hard and I know you are doing everything you can to try to improve things for your husband.

  5. #5
    Quote Originally Posted by elarson View Post
    ...Although I don't mind taking the lead on researching his equipment needs, I think he does not take an active enough role in it...
    Exactly my situation except genders are reversed. About the only advice I can give you is make sure the equipment meets YOUR needs. That is, keeping him healthy and safe and doing the same for you. I just accept that my wife has little ambition to improve or even maintain and that she probably resents the tinkering. Rationally, I have to make sure we are not financially devastated by preventable sores, accidents, or a lifting injury for me. If I were to get hurt we are doubly screwed.
    Where I have made mistakes is assuming if I made something easier for her it would encourage her to do more. We have an expensive standing wheelchair bought out of my retirement that was barely used. I built a house with a very accessible kitchen but I do all of the cooking (if I have any time). After 20 years of progressive MS it's clear the barriers are in her mind. It's not my job to remove them.

  6. #6
    Senior Member elarson's Avatar
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    Nice to hear every ones input. Thanks for reading all of this. It really does help, because I don't have much local support (we live 5,000 miles from my family, friends and culture).

    Quote Originally Posted by Foolish Old View Post
    For me, (I'm not a psychic, so I won't pretend I know what your husband thinks) getting adaptive equipment was an admission that I wasn't going to "be my old self" any time soon. Very hard pill to swallow....
    I do think that this has a lot to do with it. I guess I came to that point much earlier than he did, so maybe he just needs more time. I also hope you will follow through on getting other things that would make your life easier and fuller. Yes, equipment is always a hassle and expensive, but I really believe that with the right stuff, life can be better.

    Quote Originally Posted by Jim View Post
    He should be taking the lead roll in all decisions concerning him. Being dependent on you is unhealthy and will only make him feel like less of a man....
    I'm hoping that after reading this he does take more of an interest in his equipment and take the lead role in decisions. I think that taking the lead role on research is harder for him, and don't mind that role. The problem is that it's difficult to get him to want to talk about these decisions, and he often gets frustrated when I try to give him the information he needs to know to make a good decision, and most choice are a compromise with other choices. I try to break it up in small chunks, like armrests or brakes, but even then he does not seem to want to understand the implications and will just point at one and say "that's good".

    Possibly he is still grieving, but I don't really think professionals are going to help much here. He has been through 2 rounds of rehab with some support therapy, but unfortunately mostly what the "professionals" say is that he has to be realistic and they are not at all supportive in giving him encouragement to try. I find it maddening, because with the exceptions of 1-2 physical therapists, they all give up before even trying. I think it is also part of the culture -- one of the most often used phrases in Dutch is "it is not possible"

    Quote Originally Posted by hlh View Post
    My father definitely deferred making any decisions/planning about equipment because that was an admission that he would need the equipment long term and would not be improving as he hoped. This still continues 5 years after his injury. It is a mixture of denial, stubborness, hope....
    I do think some of it is hope, which I think is good, as long as he deals with the here-and-now to get equipment that makes his and my life easier. Overall, I don't see him as depressed, though he was initially, and I don't think cognitive changes due to the stroke are contributing. In many ways, his cognitive changes have been mostly for the better (we are very lucky for that).

    He definitely needs an outlet, but it is kind of a catch 22 with him not having the equipment to do outside things easily. He is also a perfectionist, and I think he feels that if he can't do things like hobbies perfectly, he just does not want to do them at all. I think in many ways he also feels shame for his situation and is not interested in some of his old friendships. I think that part of that is that some old so-called "friends" have said some pretty stupid and negative things to him. I'm hoping that he can build his confidence more, or at least be able to not be so hurt by stupid people, but on that I don't think there is anything I can do to help other than to support him.

    Quote Originally Posted by MSspouse View Post
    Exactly my situation except genders are reversed. About the only advice I can give you is make sure the equipment meets YOUR needs. That is, keeping him healthy and safe and doing the same for you. ...
    Wow, some of your points really struck home. I am definitely trying to make sure the equipment also meets my needs. I'm still fit, but as a woman helping a man, it does take it's physical toll on me even more. I do think he does have the ambition to do things, and I admire his perseverance with 3 years of physio and doing 2 rounds of rehab. On some other things like going out, doing hobbies, etc, I think he would like to think he is taking action, but he is definitely more talk than action on that side. Again, I think it might be some of the other reasons mentioned above that are affecting this, but I know the only one I can help much with is equipment.

    I have also made mistakes in assuming if I made something easier for him it would encourage him to do more. On that, I have learned to slow down, and not having much extra money forces that. Though I have pretty much gone after everything we can get help with funding. I've waited on things like the kitchen, because even though he is a great cook, because he can't do it all perfectly on his own, he does not want to do it much. Until I see him help more with what he can now, I don't want to be in the same place that you are with a new kitchen. Sorry to hear about that. It must be very frustrating.

    I think what you are saying about it not being your job to remove barriers is right, but I'm not sure I am ready to accept that completely yet. His situation is not progressive, and if he does not use it, he will loose it, and that also affects my quality of life. Probably I am still a bit niave to think I can have some impact on that, but I'm not ready to give up trying. Probably that will change in time...
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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