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Author Topic: LTS as caregiver  (Read 1867 times)

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Offline moxieinme

  • Member
  • Posts: 90
LTS as caregiver
« on: January 11, 2014, 03:50:24 PM »
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.
« Last Edit: January 11, 2014, 03:54:04 PM by moxieinme »
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline Jeff G

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  • Member
  • Posts: 10,754
  • How am I doing Beren ?
Re: LTS as caregiver
« Reply #1 on: January 11, 2014, 04:10:51 PM »
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 .       

Offline Theyer

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  • Posts: 2,470
  • Current ambition. Walk the Dog .
Re: LTS as caregiver
« Reply #2 on: January 11, 2014, 04:31:17 PM »
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
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline moxieinme

  • Member
  • Posts: 90
Re: LTS as caregiver
« Reply #3 on: January 13, 2014, 05:07:13 PM »
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.
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline mitch777

  • Member
  • Posts: 3,359
  • wish i were here
Re: LTS as caregiver
« Reply #4 on: January 13, 2014, 05:32:18 PM »
Moxie,

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.

m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline moxieinme

  • Member
  • Posts: 90
Re: LTS as caregiver
« Reply #5 on: January 13, 2014, 08:15:21 PM »
Moxie,

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.

m.
Dear Mitch, thank you.

As I described, love has indeed shown up in my life when I wasn't looking for it or expecting it. I had always been very clear that regardless of my own intentions to find self-fulfillment, I expected to honor my commitments to those dependent on me, as restricting as that might be. I guess to accomplish that I shut myself down in the process.

So now there is someone who has gently listened and provided love and support, and expressed appreciation, which -- in light of my earlier moaning and groaning -- was the most wonderful gift of all. There are angels in this world. Whatever happens, I am strengthened. I'm not looking for an "out" or a new life, but to have some light shine in keeps me going.
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline weasel

  • Member
  • Posts: 1,635
Re: LTS as caregiver
« Reply #6 on: January 15, 2014, 07:05:24 PM »

    Hi  Moxie ,
                     I can relate to your situation , Bob is not as bad as
  your partner but he is a handful .
    My husband has dementia , it can get bad at  times .   Over 30 years
 together I see that we will be together forever , for the most part that is
 great . When he is having what I call an episode , unless I am really pissed ,
 I turn my back and move on the next day , like nothing happened .
 Not fare ?   Life is not fare !
   Eleven  weeks ago  Bob shattered his ankle bone and broke his leg , The first
 two weeks I thought I was in hell .  We have almost zero  social lives . 
   I adapted to 24 /7   , like in your face 24/7  fast enough , we seldom go
 anywhere and I rarely get to escape to go out on my own .
  Bob is five years older but at times acts like he is 70 :(     I enjoy  going out
seeing people , any people !     I assumed Bob would end up being a care giver .
 Not so ,   Did not  work that way .   He has asked if I would ever put him in
 a home .  I would never . As long as I can have a for the most part loving relationship it won't happen .
  In your case Moxie I see possibly getting some sort of home care , so you can
go enjoy your new love .  At some point we all have to come to grips with
 what is right and what is living .   
  I do not blame anyone for finding love . I pray everyday my Husband will
 get back to walking and in doing that will regain functionality  that works for us .  Some days I also want to hide under the pillow , Sometimes I do get to . For the most part my HIV is a tabu word .
   Sending a big HUG  your way .

                                                              Weasel   :)   
" Live and let Live "

Offline Theyer

  • Member
  • Posts: 2,470
  • Current ambition. Walk the Dog .
Re: LTS as caregiver
« Reply #7 on: January 15, 2014, 07:12:35 PM »
Moxie , really I am not known for indulging people , however folk who show they have human love and kindness and know that they are not the only person on the planet tend to get my ear. Folk who are grappling with fuck awful situations my respect and anyone who finds love my teeth clenched envy [ for 10 secs or so ]

Your situation can have as much space as you want as far as I am concerned.
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: LTS as caregiver
« Reply #8 on: January 15, 2014, 07:37:06 PM »
weasel,

I'm sorry to hear about you hubby bob's dementia :-\

last week my otherhalf's Mom died and she had dementia

hang-in-there, I know it's hard

HUGS
DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline moxieinme

  • Member
  • Posts: 90
Re: LTS as caregiver
« Reply #9 on: January 17, 2014, 05:21:54 PM »
Dear Theyer, thank you for those words of validation and acceptance. I won't take them for granted.

Dear Weasel, thank you for your honest sharing. I'm so sorry to hear about your own situation coping with dementia coming into your life and relationship. I'm wishing the best for you, mostly that you find the strength to persevere. It sounds like you have a lot of love to pull from for that.

As I mentioned, I already have experience accompanying a loved one (my mom) down the rabbit hole of dementia. She's still around…physically. In retrospect the process has been so informative about life and ourselves. But then when I find myself at the starting line again with someone else, all the wrenching and stressful aspects come flooding back. Sure I can bring hard-earned skills to the new situation, but I also have a keener awareness of how daunting it is.

It would not be fair to go on about the state of the long-term relationship. But it is worth noting that what has put me in a bind is that for the past several years -- and we're talking over a decade -- I have been almost his sole social contact and support, in addition to being a large part of his financial support. Much of this was my doing because we move to a rural area at a time when we both thought we had lmited time left. But over time his own relative isolation has contrasted sharply with my own need to reach out and connect and grow and be fulfilled. And many times he lives as tough he's given up, and it's hard being an LTSer and be with someone so much who lets life and the joy drop away.

But I can not just walk away without pulling out all his supports. If he were self-sufficient or had his own support system it would be another story. Now, of course, the significant health issues add to that dependence. I am resuming counseling to help me work through all this, thankfully.

As for new love, well, as I said it wasn't planned, and it yet still evolving. I hope it endures through my current challenges, but only time will tell how all these pieces fit into place. Regardless, as woeful as I may sound, I know I am strong and I have survived many things in my life, and I will survive this too.

Thanks for all the love, guys.
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline Theyer

  • Member
  • Posts: 2,470
  • Current ambition. Walk the Dog .
Re: LTS as caregiver
« Reply #10 on: January 18, 2014, 11:17:01 AM »
Moxie ,

Dear Heart thanks for the reply , I agree you are strong and will meet your challenges -----now will you consider something and then do it please ?

Plan at least 2 nights away with oh I do not know , say a new friend . In fact this planning can begin now , if you need help give me the area and budget and I will get back to you .

Love and respect , Life and Joy
Michael / Theyer
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline moxieinme

  • Member
  • Posts: 90
Re: LTS as caregiver
« Reply #11 on: January 21, 2014, 10:12:46 AM »
Dear Michael,
Did you read what I said about there being Angels in the world? You just revealed yourself to be one of them. I am humbled.

I will have time in the near future to take a break from the caregiving relationship, and also expect to spend a little more time being on the receiving end of love and caring. As will happen, the stressors of the past few weeks have had ripple effects and put pressure on everyone involved. In the past week so much has been off-kilter, including *all* the relationships in my life. But I'm quickly reminded that if I can keep my center, if I can pay attention to self-caring, I'm in a stronger and healthier place.

But really, thank you from the depths of my heart for the mere gesture of care and concern you put forward. May such gestures come back to you a thousand-fold.

JD/Moxie
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline poz91

  • Member
  • Posts: 74
Re: LTS as caregiver
« Reply #12 on: January 27, 2014, 03:47:13 AM »
"...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..."

I should probably just :-X but...

If you were talking about someone you'd only been dating for a short while and wanted to run for the hills because diabetes, liver disease, and Parkinson's was too much to deal with and not what you signed up for... that'd be one thing.

But you've been together for over 21 years and you should feel more than just a 'sense' of responsibility to him. You've built a life together.

This is the eventuality and heartbreak of every relationship... this is where the 'in sickness and in health' part kicks in.

Offline Theyer

  • Member
  • Posts: 2,470
  • Current ambition. Walk the Dog .
Re: LTS as caregiver
« Reply #13 on: January 27, 2014, 04:27:58 PM »
"...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..."

I should probably just :-X but...

If you were talking about someone you'd only been dating for a short while and wanted to run for the hills because diabetes, liver disease, and Parkinson's was too much to deal with and not what you signed up for... that'd be one thing.

But you've been together for over 21 years and you should feel more than just a 'sense' of responsibility to him. You've built a life together.

This is the eventuality and heartbreak of every relationship... this is where the 'in sickness and in health' part kicks in.


Poz91 if you read the whole thread you will be reassured that is the position Moxie has up held and is fully aware off.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline harleymc

  • Member
  • Posts: 198
Re: LTS as caregiver
« Reply #14 on: January 30, 2014, 07:49:25 PM »
Dear Moxie,
we hear your pain.

If there was no neurological component, the issue would be so simple. End the relationship. If the offer of care is still welcome then continue in a caring role to the extent that it can fit with your new life. If he's still compus menti then it is only fair and ethical to lay the cards out on the table. To not do so also denies him peace and closure.

So the questions boil down to these:
Does the neurological component make it impossible for informed decision making or of understanding the world?

If not who else, family member for instance is in a position to be a carer? Who has medical power of attorney? What support services are available (not necessarily in the current home)?

Offline rondrond

  • Member
  • Posts: 1,712
Re: LTS as caregiver
« Reply #15 on: January 31, 2014, 07:49:00 AM »
I see nothing wrong with caring for one you love. You are only doing what you feel is right and that is all that matters.

True, it does wear on you and they do keep saying that you should have some
'me time'.

For me the stress was alleviated through what they have here in Ft Worth called CBA (Community Based Alternative Living)

I discovered that just because I was gay and had a lot of similar anecdotes about men, that Katie, being a mother and a girl. there were times that we did not connect.

We discovered that Medicaid would pay CBA for visiting nurses/aides who would come to the house for 3-4 hours a day and bath her and change her and the most important thing of all....talked to her in a language I could not.....

This gave me time to do whatever I wanted and was really wonderful.

I have also buried three loves and I found that I shut down after each funeral to where on the third, Chuck, who developed dementia and nearly took me with him, that for his own safety and my sanity, he needed to go to a home that had the care he required.

I did feel guilty, but I also realized that I was not doing him any good as I had no experience in dementia at that time.

I made the decision and have come to terms with it.

Follow your instincts and you will survive intact.....sad, bittersweet, maybe...but, I read that you know that this isn't only about you.

I'm confidant that you will make the right choices.

Ronnie
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline livingmmy9lives

  • Member
  • Posts: 18
Re: LTS as caregiver
« Reply #16 on: February 02, 2014, 05:15:00 PM »
It seems what is different nowadays (to me anyways) is that it used to be that people with hiv/aids who needed support was able to get it from the community and nowadays people seem too busy or have lack of interest to be involved at any level in one's life. Facebook has made it even worse. I feel for people who are going through serious problems related to long-term hiv disease that get little support. It's nice that we have this forum but nothing can replace live contact with other human beings that have empathy. Just a thought. Charlie.
Diagnosed 1988.

Offline Theyer

  • Member
  • Posts: 2,470
  • Current ambition. Walk the Dog .
Re: LTS as caregiver
« Reply #17 on: February 02, 2014, 05:59:31 PM »
It seems what is different nowadays (to me anyways) is that it used to be that people with hiv/aids who needed support was able to get it from the community and nowadays people seem too busy or have lack of interest to be involved at any level in one's life. Facebook has made it even worse. I feel for people who are going through serious problems related to long-term hiv disease that get little support. It's nice that we have this forum but nothing can replace live contact with other human beings that have empathy. Just a thought. Charlie.

One that is shared by many who have lived with this since the 1980,s

However I am sensing something in the wind that is beginning to challenge this cruel head in the sand shown by some.They existed when Aids was oh so chic too its just the counter crew had more energy , so its time to reach out, and do what ever can be done . The Let.s Kick Ass is a great start look it up .


Hey Moxie your thread is wanting an update. That is if your thread is called Michael .
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline moxieinme

  • Member
  • Posts: 90
Re: LTS as caregiver
« Reply #18 on: February 13, 2014, 03:06:21 PM »
Dear Michael and all,

Just a check in to keep you posted. I'm coping better with things than I was a few weeks ago for several reasons, including having some time pass and feeling less frantic, and my former partner took some time after coping with more medical issues in January to travel to Florida to visit friends and family giving me a break too. He returns today and will have to re-focus on the medical issues. I also have a chance to get away for a week at the end of the month so feel like I have breathing room.
I am committed to being present for this man as he copes with health challenges. We do have history and I care what happens to him and will help him navigate through the trials ahead. So yes, there is "in sickness and in health" but that should be true of any dear friendship. But I am also more aware of needing to take care of myself and my needs, and hopefully can hold to that as I move forward.
I thank everyone for your patience and words of support during a time when I really felt adrift. There will be more updates, no doubt.
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline Theyer

  • Member
  • Posts: 2,470
  • Current ambition. Walk the Dog .
Re: LTS as caregiver
« Reply #19 on: February 13, 2014, 05:20:10 PM »
Thanks for giving the up date Moxie. So there has been activity with your Friend off many years doing something independent off you , that must be good for both of you. I hope his visit was a success although it must off been differcult also given the news off his health developments.

At some point you said that you wanted to stick at it and work out a better solution for all this news seems to be showing that is whats happening .

It was good to read Moxie
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

 


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