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Losing my sweetheart a piece at a time

Sep 28, 1998

My partner of >15 years is in the hospital tonight. He's had a mild stroke, has AIDS Dementia Complex, and nearly died last winter from PCP. He's been home only 6 months from a specialized nursing facility

I came home from work yesterday and noticed how slow he was--cognitively and physically. That morning at breakfast, he was chipper and excited and had plans for the day. I took him to the ER last night. Tonight is the second night he's been in the hospital.

They've ruled out stroke, lymphoma, and toxo. But they haven't ruled out PML or further brain damage from HIV. I feel like this is the beginning of the end for my sweetheart. The man I love most in the world and find myself missing tonight.

Although in some ways, it is merciful if he were to die (he wants to sometimes). He's lost so much (so have I) and he is aware of how much he's lost. He's had major central nervous system damage, cognitive loss, and personality changes.

We won't know anything until tomorrow after more test results are in.

In in a strange way, I am remarkably peaceful tonight. In some ways, I'm ready to move on. I feel guilty sometimes about these feelings. But I find myself not wanting to spend the rest of my life living this way. Yet I love him now more than ever.

He's also peaceful tonight and I am glad for that. He described going to the hospital as "something different, kind of an excursion that you have fun with, got me out of the house." He also said he was bored and sore from the tests and that he sees how hard this is for me.

It's not life-threatening right now, but I feel the dream of growing old together slipping away bit by bit. Long-term doesn't looke very good right now. I'm afraid. I feel like I'm losing him a piece at a time.

Response from Mr. Shernoff

The reality is that you are losing him piece by piece and it is obviously breaking your heart. I really feel for you and identify with what you are going through and feeling as my partner had CNS lymphoma that caused him to forget where we lived, when he was born and even prevented him from reading or being able to follow a television show. The irony of this was that he had been a professional actor who could remember pages of a script and blocking to do a Broadway show. It has to be torture for you to watch the man you love and hoped to grow old together with become a shell of himself.

I think that when ever a person we love has a terminal illness and the quality of his life is deteriorating quickly that it is normal for us to begin to prepare ourselves for his dying, and to even hope that it comes quickly both to ease his suffering as well as our own. Please try not to feel guilty about feeling this way. Every widower I have either counseled in my practice or spoken to socially acknowledges that at times he thinks these thoughts, while simultaneously mourning the loss of the a shared future they had hoped and planned for with the man he loves.

You certainly do not sound like you need any advice from me as you are so present with and for your lover in addition to staying with all the enormously painful and devastating feelings and fears that are part of your current reality. I just hope that you are reaching out to loving friends and family to get all the support you need during this excruciating period. If you are not in a group for care partners of people with AIDS that might be an additional support. One resource that I do want to let you know about that may or may may be too early for you to take advantage of is the last book I edited called "Gay Widowers: Life After The Death of A Partner" published in December, 1997 by Harrington Park Press. It is an anthology of stories by 11 different men describing their attempts to move on and rebuild their lives after the death of their partners. Some widowers who have contacted me have told me that reading it before their lover died, helped them believe in the possibility of their having a meaningful life after their partner died. Many other men are unable to read the book in preparation for becoming a widower, but find it invaluable after their lover dies.

Hang in there, and value each remaining shared moment, as painful as it might be while you still have him. You guys are lucky to have each other. My thoughts are with you.

Michael Shernoff, MSW

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