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+ partner losing his mind..what to do?
Mar 29, 2006

Thanks again for your great service. You folks have helped me a lot over the years.

My + partner has HIV dementia and was just diagnosed with PML a few months ago and has had several bouts of grand mal seizures, which thankfully are now under control. His viral load has come down a lot and his T cells are on the rise again.

I'm - and have cared for him for almost 10 years now. I've watched him lose physical ability (stamina, strength, balance, coordination) and now he's losing mental functioning (he can't remember where his regular Drs office is or how to get home from there, for example).

I'm struggling with what to do. I love this man, but he is slipping away and it's slipping faster now, it seems. And I'm having a very hard time dealing with it.

If he were very physically sick, I could see when to put him in a nursing facility. But he's not. But what to do when the change is cognitive. He can't live by himself anymore, so there are only a few choices for housing for him.

My issue: how do you know when to someone should put a loved one in an institution or equivalent due to psychological changes? He's OK being by himself now, he hasn't lost bodily control, and he's not combative. But I am near the end of my rope and it tears me up to watch him fade away and the long goodbye. I feel for those families who suffer through Alzheimer's.

How do you know when it is the time?

Response from Dr. Remien

Your struggles and feelings about all of this are entirely understandable and to be expected. You are asking a tough question that does not have a clear answer. I think the answer needs to be an individual one - the "timing" for such a transition will be up to the options available in each specific situation.

I think it is a bit "artificial" to make a distinction between "physical" and "cognitive" impairment. The bottom line and "care-taking" issue is the degree of care and supervision that is required. When someone needs a lot of care and supervision, whether due to physical or cognitive problems, it is challenging for the care-taker(s) and has its limits. Nobody can give you definitive answers to your questions from afar. Who else is involved in this situation? I would think (and hope) that you are not entirely alone in providing care for your partner. Look to others around you for support and to help find answers to your questions. My strong recommendation is that you speak with a counselor or case manager who is familiar with the options available to you in your geographic area, given your financial resources. And again, don't take this on entirely yourself - look to others for support and input. And remember, you need care and support in order to be available to provide love and support for your partner. Addressing both of your needs need not be in conflict with each other.

Take care of yourself and good luck with these significant challenges.


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