Main Forums > Pre-HAART Long-Term Survivors

LTS as caregiver

<< < (2/4) > >>


--- Quote from: mitch777 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.


--- End quote ---
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.


    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   :)   

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.


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


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.


[0] Message Index

[#] Next page

[*] Previous page

Go to full version