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Perspective: partner with AIDs dementia

May 17, 1999

Hi there, I’ve written you before and have appreciated your perspective. Now, I need some additional perspective on my situation.

My partner of 16+ years has AIDs with dementia. Unfortunately, we’ve had some rough times the past few years as he got sick, got better, and came home. We didn’t even know he was + until he nearly died from PCP 1/3 of my life with, and loyalty to make certain he is cared for. Sure costs me a lot. He's seems surprised that I have my own issues with our situation that have nothing to do with sex, that have nothing to do with him "getting better," and that I believe that there's little he can do to change that. I simply don't believe that he is capable of meeting my needs and there's so much water under the bridge already. The unfortunate fact is that no matter what his issues are, I'm still the one that is living with a compromised partner, watching life go by and having my life limited as a result, and will (eventually) have to bury him. Eg, my issue isn't with him in many ways: it's with me and my life. It’s very hard to get past this and nothing he can do will change these pieces for me. And, yes, I blame him big time for messing up my life.

I’m not asking for advice on what to do per se; what I’m looking for is perspective on people who have dealt with cognitively/emotionally compromised partners. Did they just walk away? Did they suffer through it and find gifts in there? Did they stay and not suffer? It is reasonable, in spite of the feelings of loyalty, love, and caring that I have for him, to just walk away? Is it fair to him? Is it fair to me to stay? I promised through sickness and health; now I worry about my own emotional health and whether I can survive at all emotionally.

We both have our therapists and me, a support group. We’ve been stuck here for awhile and I’m losing hope very fast. Maybe, I'm just in denial that I just need to walk away....


Response from Mr. Shernoff

You raise an obviously very complicated set of issues. He has very real needs but then again so do you. Any good relationship whether it is a lover relationship, friends or family has to be about BOTH people feeling that there is room for their feelings and that mutually each person cares about what the other is feeling, and is secure thatthe other person always cares about his feelings as well. This way, even when two people do not agree aobut any issue or situation at least there is a mutual empathy and respect for each ones feelings. This is the glue that helps hold any relationship together and strengthen it, especially during a crisis. It sounds like this kind of glue that is the foundaiton upon which a strong emotional harbor and home are built is no longer present in your partnership, if it was ever there in the first place.

What seems to me to be the problem here is that this man is only concerned with his needs and feelings. When you say that he is surprised that you have an entire set of feelings and reactions to how his illness has affected you and your life, to me that is the biggest clue that there are real problems here in this relationship. How could you not have an entire constellation of reactions? You have shared your life with this man for almost two decades! Demented or not, he is being an inappropriately self-centered and selfish person. Dementia often casues an individual to regress to a much less developed stage of emotional maturity, but not always. I was lucky in that when my partner became developed his tendency to be sweet and caring only grew despite his deterioration. Unfortunatley, this is not what you are experiencing. I am sorry that you are now in this palce that causes you such obvious distress.

My professional and personal experience confirms that the vast majority of people who have AIDS and HIV related psychiatric problems rarely have complete personality changes. The illness only causes their personality traits to become exaggerated. The person who was always very concerned with other people remains this way. The person who was somewhat self-centered and manipulative before becoming ill may become more so. I wouldn't be surprised if your boyfriend was always somewhat more self referenced prior to the illness progressing, and the dementia has resulted in these difficult personality traits becoming exacerbated.

I have worked with numerous couples where a loving partner felt that despite the relationship no longer being one he considered to be or wanted to be a permanent partnership, he remained taking care of the man who was ill out of a sense of obligation, loyalty and past love. The well partners usually reported that they felt they wanted to and felt able to do this knowing that the man who was ill did not have a long time to live.

But now with the advent of triple combination therapies several of these men felt that they were no longer willing to put their lives on hold for the indefinite future and came to therapy to get help faciliating a transition in their relationships. They never did this impulsivley, but only after much thought and wrestling with conflicting feelings. It seems like this may be where you are at. One thought that I alway ask these ment o consider is that if they move out of a shared household and formally end the lover part of the relationship it need not mean that all ties are broken and that the person with AIDS is just abandone. To a man, the well partners wanted to amintain some level of friendship, intimacy and care taking for their former partner while no longer living together or being the primary care taker. None of these relationship transitions were without alot of difficult feelings and some hurt, anger and even betrayal expressed on both parts. But ultimately once the well partner moved on, the sense of freedom, increased psychic and physical energy and self-empowerment gained, allowed him to be even more emotionally available and loving to the former partner.

In your case I think you need to at least seriously consider this as a possibility. If your partner threatens suicide as a way of trying to emotionally black mail you, you must realize and tell him that he is the only one who is responsible if he does decide to make that choice. And while it would greatly sadden you, his threatening to hurt himself can not be the reason you remain in a relationship where there is not any room for your feelings. It will not be easy, but perhaps it is overdue. Good luck and let me know how things progress. Michael Shernoff, MSW

Depressed AIDS widow
Worry about coping

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