Nursing Home Resident Seeks Other Nursing Home Resident Penpals

Bushrod said:
Not for me. After not being disabled a day in my life, I suddenly at the age of 78 became totally, permanently disabled, confined to a nursing home that I'll never be able to leave. The ONLY thing I want to communicate about is the Nursing Home Experience because it's the absolutely central, by far most important element of my life.
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I know enough about nursing homes that I never want to be in one.
Thus you have my sympathy for having to be in one for the rest of your life.
How did you happen to become totally, permanently disabled, at the age of 78?
If you'd care to share your experience of being in a place like that then I'd be interested to learn about it.
 

John cycling said:
I know enough about nursing homes that I never want to be in one.
Thus you have my sympathy for having to be in one for the rest of your life.
How did you happen to become totally, permanently disabled, at the age of 78?
If you'd care to share your experience of being in a place like that then I'd be interested to learn about it.
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Sure thing. At the end of 2022 I was (luckily, by mistake - not the Dx but the overlarge prostate cancer scan that caught it) diagnosed with a large RCC tumor in my left kidney. In January 2023 I had a nephrectomy. Everything went fine. In March, my oncologist told me that my time-line to recurrence was very short and that I'd be best advised To take Merck's Keytruda infusion to improve my odds. Which of course I did. Only sensible thing to do.

The first program was for a series of 18 Keytruda infusions, one every two weeks. After the first two infusions everything started to go haywire. First thing, couldn't stand up from the toilet. Then, couldn't stand up at all. Then stopped eating. All this with a very pronounced, sudden-onset brain fog that prevented me from having more than a hazy idea of what was going on.

My wife was no help, being herself totally disabled and in a long-term decline. (I had been her full-time carer for the prior six years, doing all the housework and shopping as well, never having been disabled for a day in my life). We had had no children, she having had early onset uterine cancer, and she didn't want to adopt. So there really was no one to help me as I lost muscle-strength and weight.

Finally got admitted to hospital near the end of July. Diagnosed conclusively within four days, shipped off to a better-equipped teaching hospital for a four week stay. Tried all standard medication and all failed. Released to the nursing home in September 2023 where I've remained ever since, same room same bed. My wife had preceded me, having come down with a senile dementia UTI just before I was first admitted to the hospital. So at least we got to share our last year together. She died here last July.

My personal prognosis is bleak. We're still trying all the new (six-figure) meds, but with only the mildest success: I can now get up and walk the ten feet to the toilet and on good days - perhaps once a week - take a shower. It's an improvement, but it won't get me out of here. Highly doubtful this will change significantly.
 

Bushrod said:
…I'm just not interested in wasting my time with people not in nursing homes who just cannot possibly "get it." I'm here for life and the nursing home experience is at the moment the only thing I want to correspond about.
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That’s why I suggested gMG specific groups. Think you’d be more likely to find a NH pen pal than on a general board such as this. I hope you find someone!
 
Oh dear. I’m so sorry you are going through this. It must be horrible. I sincerely hope you find someone to talk to. And so sorry for your loss. 😢
Note: I think there are a few people living in nursing homes here. Stick around and see if they want to talk. I know one guy found a girlfriend at the nursing home so was very happy.
 
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Bushrod said:
Sure thing. At the end of 2022 I was (luckily, by mistake - not the Dx but the overlarge prostate cancer scan that caught it) diagnosed with a large RCC tumor in my left kidney. In January 2023 I had a nephrectomy. Everything went fine. In March, my oncologist told me that my time-line to recurrence was very short and that I'd be best advised To take Merck's Keytruda infusion to improve my odds. Which of course I did. Only sensible thing to do.

The first program was for a series of 18 Keytruda infusions, one every two weeks. After the first two infusions everything started to go haywire. First thing, couldn't stand up from the toilet. Then, couldn't stand up at all. Then stopped eating. All this with a very pronounced, sudden-onset brain fog that prevented me from having more than a hazy idea of what was going on.

My wife was no help, being herself totally disabled and in a long-term decline. (I had been her full-time carer for the prior six years, doing all the housework and shopping as well, never having been disabled for a day in my life). We had had no children, she having had early onset uterine cancer, and she didn't want to adopt. So there really was no one to help me as I lost muscle-strength and weight.

Finally got admitted to hospital near the end of July. Diagnosed conclusively within four days, shipped off to a better-equipped teaching hospital for a four week stay. Tried all standard medication and all failed. Released to the nursing home in September 2023 where I've remained ever since, same room same bed. My wife had preceded me, having come down with a senile dementia UTI just before I was first admitted to the hospital. So at least we got to share our last year together. She died here last July.

My personal prognosis is bleak. We're still trying all the new (six-figure) meds, but with only the mildest success: I can now get up and walk the ten feet to the toilet and on good days - perhaps once a week - take a shower. It's an improvement, but it won't get me out of here. Highly doubtful this will change significantly.
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My condolences for the loss of your wife, may she rest peacefully. Sad to hear you're going though so much pain and misery, I wish you the best possible in your future.
 
Paco Dennis said:
Welcome Bushrod,
You are angry like me.
I don't like any of this world or how my body is getting useless. BUT, it's the only game in town. Play or not....to be or not to be. :)
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Of course you're right, it IS the only game in town. But that doesn't mean I have to like it, particularly on bad days like today. Bad days entirely physically imposed and in no way self-chosen. For someone in my particular situation (not that I'm in any way special, which I'm not), on this particular bad day in this particular bad week, there is no choice beside anger.

To hide anger is to deny myself. To be asked to deny my anger is unkind and presumptuous. I wish there were an immediate way out, but there is not. There will be good weeks and good days to come. Of that I'm perfectly convinced. But I have to get from here to there. I'm not depressed, just seriously grumpy. Which I have every right to be.
 
MACKTEXAS said:
I'm truly sorry for the burden you're carrying. Had you only opened up in the beginning as you did now, you may have found that most people would have been much more sympathetic to your plight.
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Thanks, but I didn't realize it was needed. At the moment I'm dealing with a bad flu and a resulting myasthenia gravis flare that does indeed affect my executive functioning. In better times I'm sure I'd be more aware.
 
Bushrod said:
Thanks, but I didn't realize it was needed. At the moment I'm dealing with a bad flu and a resulting myasthenia gravis flare that does indeed affect my executive functioning. In better times I'm sure I'd be more aware.
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I hope you recover soon from the flu. Maybe that will help somewhat, at least.

But you're right, no one should have to come onto a forum and tell everything about themselves in order to find acceptance - - - it's just that we were in the dark and felt you didn't want to interact with us. I have learned the ways of many of the members who have posted here, and they can be very caring.
 
Bushrod said:
I have no future.
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I wished you the best possible in your future. You're in the present now, anything beyond this is your future. My wish stands, I know it's hard in your situation, but if you're as positive as possible, it will be good for you, can't hurt.
 
Im curious. Why do you not want to correspond with others not in a nursing home.
Wouldnt it be more interesting to chat about guy stuff like cars and war stories and other manly stuff.
Or movies and books and hobbies. Or complain about old coworkers and tell amusing stories about your relatives.

I havent been in one myself but the husband was as well as my mother and several other family members and inlaws.
I know enuf about them to know I dont want to be in one. From my experiences they were all no fun.
Im so sorry that youre stuck in one.
 
Veronica said:
Im curious. Why do you not want to correspond with others not in a nursing home.
Wouldnt it be more interesting to chat about guy stuff like cars and war stories and other manly stuff.
Or movies and books and hobbies. Or complain about old coworkers and tell amusing stories about your relatives.

I havent been in one myself but the husband was as well as my mother and several other family members and inlaws.
I know enuf about them to know I dont want to be in one. From my experiences they were all no fun.
Im so sorry that youre stuck in one.
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Thanks for your post. Please take a look at the new main statement I'll be posting in short order. An apology for my extended conniption fit.
 
I heartily and sincerely apologize to all for arriving on your doorstep and losing my lunch in your lap, metaphorically speaking. I've finally had a half-decent night's sleep, some powerful antibiotics and painkillers, and though still quite ill, have been able to get ahold of myself and return, somewhat, to the person I normally am. Which is pretty calm and stable and not depressed and able to enjoy the small good things in daily life that come my way. Whew! So terribly sorry.
 
Bushrod said:
I heartily and sincerely apologize to all for arriving on your doorstep and losing my lunch in your lap, metaphorically speaking. I've finally had a half-decent night's sleep, some powerful antibiotics and painkillers, and though still quite ill, have been able to get ahold of myself and return, somewhat, to the person I normally am. Which is pretty calm and stable and not depressed and able to enjoy the small good things in daily life that come my way. Whew! So terribly sorry.
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you're very welcome here.. we , all of us at one time or another have been in such pain we took it out on the wrong people.. so we understand. Hopefully you can start again from the beginning and enjoy your time here with us...(y)
 
Hey, Bushrod, I doubt any of us Seniors are having a skip thru the tulips spring about.
Cheering yourself up is great meds. Well, thas a thought anyway. Good Tripping soon!
 
Bushrod said:
I heartily and sincerely apologize to all for arriving on your doorstep and losing my lunch in your lap, metaphorically speaking. I've finally had a half-decent night's sleep, some powerful antibiotics and painkillers, and though still quite ill, have been able to get ahold of myself and return, somewhat, to the person I normally am. Which is pretty calm and stable and not depressed and able to enjoy the small good things in daily life that come my way. Whew! So terribly sorry.
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No problem. Experienced that most recently with the husband and the nursing home before he passed. The only people in there who arent occasionally crabby are the ones who are too sick or the ones who dont know where they are.

Im glad youre feeling a little better. Theres quite a few nice people here on the forum who like to chat. After you check out their posts you might find someone interesting and decide to chat privately by clicking on "start conversation".

Theres a thread started by TInaM you might be interested in.

Do you have “penpals” How do you find them?​

 

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