I recently heard a story about a couple in which the wife has had Huntington's Disease for twenty years. They married in their early thirties and she was diagnosed five years later. Over the course of the last two decades, each exacerbation has left her at a lower level of functioning. For the past ten years, she has lost her ability to do any self care, to transfer herself from bed to toilet and back to bed, and to speak. Over the past five years, her cognitive abilities have become compromised.
Her husband has been her steadfast caretaker for all this time. He modified their house to make it handicap accessible. He found aides and home health care providers to help with her care. He took her to try many avenues of treatment. He was the primary parent. And he worked at a full time job.
Now, after twenty years, he realizes he just can't do it any more. He has his own physical conditions, and he is bone weary and wants more joy in his life as he enters his own final decades. He is afraid that if he keeps being the primary caretaker, he will get sick and be unable to help his wife at all.
He decided to place her in a high quality nursing home - for her sake and for his.
This is one of the toughest issues couples dealing with debilitating illness face. What do you think about this man's decision? Have you made the decision to place your ill partner in a nursing home or other long term care facility? Would you ever consider doing this?
5 comments:
As a nurse, a sister, a daughter and a mother, I certainly would consider this move! Huntington's is so severe, and I think he's right, it is too much at this stage and he'll do no one any good if he gets worn down (which will happen). Oddly enough, I just posted on 'Nursing Home Checklist' a few weeks ago on my blog. It is a scary thing, but with proper investigation and knowledge of the care certain homes provide, it can be a win-win situation. Stephanie
Well, I am probably the person in our relationship that will end up in a nursing home first.
I have thought about it. I don't think I would really mind. I mean I would but, I would understand. Besides since I am a social person it would at least reduce the isolation I am now having.
It would also reduce the stress on my hubby I would imagine. The only thoughts I really have on the subject, is I would like to be involved in which home I would go to and what would happen while I was there. If I was able to of course.
I have already shared with my husband which homes I would be comfortable in. While I am not that old, he has already considered it, as he is working multiple jobs just to keep us afloat.
That does leave me home alone so often sometimes for 36 hours at a time.
I guess I am just looking at what is best for us both. It is hard but it will be alright.
I have MS and have already decided if I get to a point where I can't take care of myself I will make sure I get myself to a nursing home before my partner has to make the decision.
It is too stressful to put that decision on my partner.
Glad I found your blog.
New to your journal, I may be jumping in here but I believe this is more a "we" than an "I" question and answer. As a 20 year veteran of Multiple Sclerosis spouse caregiving "we" faced that transition from homecare to 24/7 facility care. It surprises most people but neither the caring nor the involvement changes just the environment improves.
Caregivingly Yours, Patrick
Thank you Stephanie, Pink Doberman, Have Myelin and Patrick for your thoughtful comments. An important element I take from your comments is how the scary thing of moving to a nursing home can be mitigated if it is done within the context of love, with guidance, and with research.
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