Nursing Home Resident Seeks Other Nursing Home Resident Penpals

I imagine there's a human services director or equivalent at your nursing home, speak to that person and see if they are aware of any nursing home resident chat rooms that already exist. Another option may be setting up a program between several nursing homes where residents can communicate with each other, simply sharing emails addresses with other residents seems an easy way to get started. Or get someone's brainiac grandkid to set up a nursing home forum! lol

I think what you are after is a terrific idea, being able to communicate and share with others in the same living situation could be a huge emotional lift to your days.
 

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.
Click to expand...
First, you have my condolences on the loss of your wife. May she finally R.I.P. I'm also sorry for all you have had to go through. I hope the facility you are in is a very good one and you'll continue to get the care you need.
 
Bushrod said:
Only seeking other nursing home residents but thanks anyway.
Click to expand...
In this case, why don't you write a letter stating what you are requesting. Send copies of it to various nursing homes and include a cover letter asking staff to post your letter on their bulletin board. The staff can vet your information that you have included to be sure their residents are safe. They could give interested parties your address.
Maybe you'll get some bites. šŸŸ
 
Last edited:
C50 said:
I imagine there's a human services director or equivalent at your nursing home, speak to that person and see if they are aware of any nursing home resident chat rooms that already exist. Another option may be setting up a program between several nursing homes where residents can communicate with each other, simply sharing emails addresses with other residents seems an easy way to get started. Or get someone's brainiac grandkid to set up a nursing home forum! lol

I think what you are after is a terrific idea, being able to communicate and share with others in the same living situation could be a huge emotional lift to your days.
Click to expand...
Thanks much for your suggestions. Truly appreciated. Problem is, everything here is set up for people who are to some degree mentally incapacitated. I'm told I'm the only one with a computer, though some have phones for talking with family. I asked, and our patient welfare people don't know of any chat rooms. Sorry to respond so late. Been too sick to focus until very recently. Best!
 
Feeling half human again is great, particularly because it helps me understand what I was trying to express when I was in extremis and first posting here. So I'm given the opportunity of correcting myself, as follows:

(1) I wasn't really looking for "pen pals." Never had one in my life. To my befogged mind at the time, it simply seemed a short way of describing people with whom to communicate using printed words, as opposed to audio or visual. Posting on a forum like Seniorforums is fine and could theoretically suffice for me. I have no need for privacy and am happy that many people can see what I post.

(2) The core issue, the main reason I was specifically targeting nursing home residents, is this: For me, the central, defining characteristic of my predicament is physical helplessness, which I find terrifying. Right now, I can move around a little, at least some of the time. But over the past two years there have been times when I've been as helpless as a baby without a mother. And there are no guarantees it won't happen again. Scary.

So my basic desire is to communicate with people who, like me, deal with the daily reality of disease-induced immobilization or realistic fear of the same, without the possibility of cure or recovery. To find out how they deal with it. To learn from them. To share. To improve my situation, if possible. That's it. That's all I was trying to do (and am still trying). Sorry not to have been able to make that clear at the beginning!
 
hearlady said:
In this case, why don't you write a letter stating what you are requesting. Send copies of it to various nursing homes and include a cover letter asking staff to post your letter on their bulletin board. The staff can vet your information that you have included to be sure their residents are safe. They could give interested parties your address.
Maybe you'll get some bites.
Click to expand...
I don't think the homes will respond, and I wonder whether they have bulletin boards, as well as wondering what tiny fraction of residents would pick up on it. My energy and time are severely disease-limited, so I can't waste them on scatter-shots. I'll keep trying with MG-related websites and fora, as well as with senior boards like this one, and disability boards as well.
 
Hi Bushrod,
Iā€™m glad you are feeling a bit better. Getting old sure has its challenges. Itā€™s good that you are reaching out to others. I think human interaction is great. Itā€™s good for your mental health on many levels. For one, itā€™s good to have company . Two, itā€™s good for your dexterity, eye hand coordination.

Today is a bright, sunny day here and 12 degrees. Iā€™m quite certain the snow is finally gone. Yayyy! We just came back from walking our dogs. They love days like today. We walked on the nature trail. They found a quail . lol. Of course, it flew away.
Hereā€™s a picture of the nature trail. Itā€™s right by the Atlantic Ocean.
IMG_8669.jpeg

Anyway, I hope you have a good day Rod.


IMG_8672.jpeg
 
PeppermintPatty said:
Hi Bushrod,
Iā€™m glad you are feeling a bit better. Getting old sure has its challenges. Itā€™s good that you are reaching out to others. I think human interaction is great. Itā€™s good for your mental health on many levels. For one, itā€™s good to have company . Two, itā€™s good for your dexterity, eye hand coordination.

Today is a bright, sunny day here and 12 degrees. Iā€™m quite certain the snow is finally gone. Yayyy! We just came back from walking our dogs. They love days like today. We walked on the nature trail. They found a quail . lol. Of course, it flew away.
Hereā€™s a picture of the nature trail. Itā€™s right by the Atlantic Ocean.
View attachment 420994

Anyway, I hope you have a good day Rod.


View attachment 420995
Click to expand...
Wish I was There!
 
Im so glad youre feeling better too. Im not familiar with gMG but I did do a quick check online and there are forums and Facebook groups for auto immune disease and MG. Some people might be homebound so you wouldnt meet them if theyre not in a nursing home.

Facebook support groups. Google Search
 
StarSong said:
@Bushrod: I didn't know much anything about gMG until researching it after reading your post. I'm sorry for the pain, helplessness, isolation and frustration this brings to your life.

Please stick around the forum. We discuss a wide variety of topics, some of which may interest you.

I look forward to reading your comments.
Click to expand...
Thank you very much indeed.
 
Veronica said:
Im so glad youre feeling better too. Im not familiar with gMG but I did do a quick check online and there are forums and Facebook groups for auto immune disease and MG. Some people might be homebound so you wouldnt meet them if theyre not in a nursing home.

Facebook support groups. Google Search
Click to expand...
Thanks, Veronica. It means a lot to me to have folks like you speak out. The MG forums and Facebook (and Reddit) groups are all good in their way and I participate in them regularly. But it's still hard to find people who want to (and are capable of) verbalizing things that most of us (including me) would much prefer to forget if they could.
 

You must log in or register to reply here.

Back
Top