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anticipatory grief

May 11, 1998

thanks again for this service. you folks are awesome!

I'm living with my parter of 15 years who has aids and a relatively short life expectancy from this point (<1-2 years). he was just diagnosed with aids 6 months ago, has moderate dementia, and has had a mild stroke in the past year; we didn't even know that he was hiv+. he's threatening suicide (4 times in past month) because of the quality of his life and also because of how his illness has changed our relationship (eg, its not sexual anymore-my choice due not to concerns about getting hiv, but rather to issues about being emotionally beat up by him as he's declined -- I want to focus on rebuilding our relationship first and feeling trust there again; he wants to make certain that he has sex again before he dies). i'm suffering from tremendous confusion, pain, some guilt, and grief in anticipation of his death, sooner or later. I'm also the primary care-giver for him. Has anyone else out there been in a similar situation? i feel completely trapped and manipulated by this situation. yet, i want to be there for him. How can i survive this? I'm overwhelmed because I have to get through until his death and then I have to deal with his death. In the meantime, I've lost my life partner, plans for the future, and a whole lot of hope. I am getting professional help and participating in a support group, but this seems hopeless. He refuses to talk to a professional counsellor. Altough I can understand why he might want to end his life because he has lost so much, the linkage of this to my sexual participation with him is really hard to take. this morning he told me that he was going to buy a gun. any suggestions for 1) taking care of me and 2) taking care of him would be most welcome. god bless.

Response from Mr. Shernoff

Your partner is definitely trying to emotionally blackmail you into resuming having sex with him.How could that not infuriate you and cause you to not want to have sex with him? My professional experience has been that as people deteriorate from HIV and approach their death their preexisting way of dealing with problems and with the people around them becomes exacerbated. Is this the case with your partner? Was he manipulative before being diagnosed with HIV? Were you generally the care taker even then and if so was he always demanding and at least some what self-centered? I would venture that those dynamics existed long before HIV.

One thing that you can do is to tell him that you would prefer for him not to kill himself, but if he does do it, you will not feel responsible for or guilty about this action as you have been a loving and loyal care partner for him to the best of your ability. Remind him that of course you know how much he has already lost due to the illness and how much he will continue to lose until his death. But that in fact you are also in the midst of an enormous series of losses. His illness is impacting on both of you and the quality of the relationship, not just on him. I would urge you not walk on egg shells about how angry he makes you, how hurt you are and how his disregard for your feelings is helping create a painful distance between the two of you that you desperately want to address and repair before he becomes too ill to do so.

Tell him that there is no way that you are going to resume being sexual with him unless he agrees to go to a couples counselor where the two of you can work on the issues impacting on your relationship. Your partner is exhibiting something I have labeled the "Tyranny of the ill." This is where the sick person uses his or her being ill as a way to bully the people around them into doing what they want to have done for them and FEEL ENTITLED TO HAVE DONE FOR THEM because they are serious ill and dying. I think it is just self-centered self indulgence and should not be humored. Your needs and feelings are no less important simply because you are not HIV positive. This kind of confrontation with him will almost certainly not be pretty, and will likely enrage him. In a way that is very good and empowering in so far as it may result in the two of you being able to fight as equals and help rebalance the power equation between you that has become grossly off kilter. I know that what I am suggesting makes me seem hard assed, but believe me, trying this appraoch is the only way you can begin to regain your sense of power and equality with your partner before it is too late. It won't be easy, but I really believe that it will be well worth the risk of your trying this tactic. Good luck, and remember, as the line from that great gay icon All About Eve states: "Fasten your seat belt. It's going to be a bumpy ride."

Michael Shernoff, MSW

When to tell a 12 year old they are HIV +
To get involved with someone HIV + or not

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