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LTS as caregiver

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OK. I try to refrain from online breast-beating (for other than fun), but I'm faced with an increasingly difficult situation and it may help to get it out in the open.

Are there other long-term survivors coping with being caregivers? What about the stress that accompanies those responsibilities?

I am a LTS (coming up on my 25th Dx anniversary on Monday). Once upon a time I was anticipating my own need for care as my health declined, but instead I have wound up over the years caregiving for aging parents, and now a long-term partner. I managed through the difficulties of my father's passing and taking care of my mom as she slipped deeper into dementia, and have managed the stress well.

I have an older (poz) partner with whom I have lived over 21 years and who has been dealing with an increasing number of health issues. I am his primary financial support and almost his sole social support. Yesterday he was diagnosed with Parkinsonism, not just physical but cognitive. I had long been aware of the cognitive decline so I was expecting it, but the diagnosis was a tough blow for him, and brought me back face-to-face with the hard road I had to take caring for my Mom. My partner's condition will only degenerate so I'm trying to face reality as best I can. He is also coping with diabetes and liver disease complications. FYI, his HIV has always been well managed and is likely the lesser of his health concerns at this point.

To complicate matters, our relationship had been in trouble for at least the past couple years. Knowing what we know now, it's possible behavior and personality changes may have been the root cause of some of the dysfunction, but the age difference (12 years) and difference in life patterns and attitudes account for a lot of it too. And yes, we'd been through counseling. I was finally on a path towards more self-caring and self fulfillment, which meant detaching from a partnered relationship, but obviously there is a new big wrench in the works.

To put a pretty bow on it, there is a wonderful man who came into my life in the past few months, bringing a level of love, connection, and appreciation I had forgotten was possible. He has been tremendously supportive, but it is anguishing that my sense of responsibility and loyalty to my old partner may continue to restrict parts of my life for some time to come.

If anyone has stories to tell about dealing with difficult situations being a caregiver while coping with their own HIV care, or if you want to chime in with words or support or criticism, go for it.

Thanks for listening.

Jeff G:
The best advice I can give is take time for yourself and give yourself permission to feel the whole range of emotions that come with the territory, from the laughs and joys to the tears and sorrow .

You cant do it all, all the time so do what you can and get help with the rest .

I'm finding myself at the beginning of being the go to guy for sick friends and aging family . I was feeling guilty because I'm at a point in life for the first time where my worries are few and sometime I resent helping those that never lifted a finger to help me when I was in need ... and then there is the thing I hate to admit the most, a part of me wants to run away from the responsibility and just stay here at home in my happy nest I have made .

After I admitted how I feel I got down to business and decided where my boundaries are with the people in my life and figured out what I can do to help that is realistic and sustainable .

That's a longwinded way to say only bite off what you can chew and do not feel bad for making choices that's good you as well as them .       

Oh Moxie first I am sorry and familiar with the issue off care giving to dying Parents ,friends, and what started it all a Partner who died in 1989 , Very differant circumstances to yours , though some similarities .

What ever the state off your relationship it has some history and from your other Posts  and how you are presenting this I guess you don,t want to totally leave your LT partner nor put your life on hold not enjoying and developing the new relationship that has come along. Its going to take some negotiating and I would think at times some with holding off the full picture from your LT partner. I agree with Jeff what ever you are feeling for Gods sake have somewhere where it can be said. Plain and simple.

How co-op is your Lt partner with your needs, does he have friends independent off you, are the ? coming to mind when I imagine the road ahead for you , not looking unless you want to for your answer,s but I hope that we as a group off LTS can offer you the space here and with PM,s that might be helpful to you.

All the best for now I hope you realize PM will be welcome , take care

Thank you both. As I said, my post was a bout of breast-beating, so I appreciate you indulging me, understanding, and offering honest and pertinent feedback.

I think why I raised the issue in relation to being a LTSer is not only the stress involved, and the effect it can have on my health (physical and mental), but these situations are affecting and directing, often limiting, my life just as my HIV infection has done over the years. I know life's not always fair, but sometimes it's a pisser. Plus, I managed so long to take care of myself, but now feel a little…what? hurt maybe?…that I am consistently the caregiver and source of responsibility, and sometimes feels like I never get a break and cared for. I don't get to pull the covers over my head because of those depending on me.

Anyway, enough woe-is-me. My partner's diagnosis has actually provided a little structure and definition to the situation. We are starting to have very frank talks about what lies ahead. I am trying to assert my need to take care of myself if I am going to be able to take care of him.

I know from experience that is difficult for survivors to cope with dementia. We lose the ones we love even while they seem to be with us. In understand now that my partner likely began changing in subtle ways some time ago. I have to come to terms with that and remember that I am continuing on in my own journey.


I wanted so badly to reply to you as soon as I read your first post but I'm at a loss still.

I don't envy the situation that you find yourself in at the moment and I sincerely hope for your happiness as best you can in dealing with a new love while caring for a love that has faded due to illness.

Dementia doesn't get discussed much in public. Kinda taboo in many ways. Makes it all the harder to understand it and almost impossible to prepare yourself whether you are the patient or the caregiver.

I have no doubt you will figure out how to go forward. Just try to enjoy someone putting the covers over you when needed.



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