Physical and mental diseases together (secondary progressive MS)

Posted by anthonym @anthonym, Jul 18 4:09pm

My wife has SPMS (secondary progressive MS) and it has started affecting her cognitive capacity. I can "cope" with her physical disabilities (she is totally dependent for her daily needs), but have no capacity (read patience) with her cognitive problems. She is neither here nor there. She understands all, but short term memory is getting worse, lives by the clock and by very fixed routine. Does not admit to being forgetful, not hearing well, not seeing well, and yet looks well speaks well and I am a sort of a prisoner as she is also a good blackmailer making me feel guilty for going out any errand. She is in that in-between state which is so hard for me to handle. Taking her out is difficult but whilst she enjoys an outing the return home is always to the routine. Why do I bother is a question I ask myself. Obviously because after 46 years (of which 42 with MS) she is part of me and who I am and I just feel that I have to do and want to do all I can for her to feel better. But it's very hard. I have helpers to assist with her getting up, bathed, dressed and prepared to lead a "normal" life. How is it possible not to feel bed when I get angry at her repetitive questions and statements. She is not one to go to a day centre or have "activities" (never was, even when not cognitively affected). I am being selfish I suppose wanting her back and not being able to, and not wanting this continuous living in limbo, as I am neither here nor there in a different sense. I suppose this is what the "for better or for worse and in sickness and in health until death do us part" is all about. I shall, I will and I do. Thanks for reading my discharge. Good luck to us all who are going through this. My wife just fears that I will "go" first. But we always finish the day with a smile and a kiss. Will it be better tomorrow?

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I'm so sorry about all that you are going through. This is a very long time to be a caregiver. I can relate to your story. My husband has only been cognitively impaired for 6 years or so but I'm already burned out.

Hubby wants me next to him at all times. I come home from errands (45 minutes at the most) to accusations of having an affair or making plans to leave. It's when I remember that he truly fears this is true that I take a breath and drop everything to reassure him. I know he's terrified of losing me and that breaks my heart.

I'm glad you can still end the day with a smile and a kiss. We do too. I'm hoping we can both find ways to get away and focus on self care before our health is affected.

Well meaning loved ones insist I get some help (like I don't know that) but until they've lived it they have no idea that it's not so simple.

I'm holding you and others in similar situations in my heart.

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@jehjeh

I'm so sorry about all that you are going through. This is a very long time to be a caregiver. I can relate to your story. My husband has only been cognitively impaired for 6 years or so but I'm already burned out.

Hubby wants me next to him at all times. I come home from errands (45 minutes at the most) to accusations of having an affair or making plans to leave. It's when I remember that he truly fears this is true that I take a breath and drop everything to reassure him. I know he's terrified of losing me and that breaks my heart.

I'm glad you can still end the day with a smile and a kiss. We do too. I'm hoping we can both find ways to get away and focus on self care before our health is affected.

Well meaning loved ones insist I get some help (like I don't know that) but until they've lived it they have no idea that it's not so simple.

I'm holding you and others in similar situations in my heart.

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Totally understand. All we can do is take one day at a time and appreciate the time when we are having a good day. Today my husband was doing his dishes today without using soap just rinsing them. I don’t want to take this away from him but now I have to check the draws and cupboards.

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I am starting to see more changes and biting my tongue more and more. My husband has given me the best years of my life which I have to remind myself constantly. I cry when I think of what the future holds for us. We have no family just me and I have hesitated to tell everyone. I don’t see the point people say let me know if I can help but no one bothers to give you their number. I can manage for now I am just tired from doing everything. Although my husband does do the dishes, garbage fills up the coffee etc which I appreciate. I think he also is scared I will go first. I am 76 he is 85. Thanks for listening

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