If I get to the point where I'm terminally taking all of another unpaid person's time, I will exit.
Gotta make time and space for the next generation, and don't wanna be remembered for what I took for an extended period at the end of my life.
Is anyone else helping someone with a degenerative illness?
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Gotta make time and space for the next generation, and don't wanna be remembered for what I took for an extended period at the end of my life.
Noor
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The problem is that you can say that now, as my parents did years ago, but when you get into your 90s, all you think about is the here and now and all your plans go out the window.
I think moving into assisted living before you need it might be an idea.
I have taken care of three elderly parents for two, six, and ten years respectively at the end of their lives, and here is what I learned.
If you are deeply condition in religious rituals, that is what you will retain when you lose your short-term memory. If you are conditioned to be self-absorbed, that will be your MO when you lose short-term memory. Same if you are conditioned to be considerate of other people's time.
With the latter orientation and with a basic understanding and availability of strong opiate drugs, I want to relieve others of an extended caregiving campaign when the time comes for me to get out of the way.
I know of another man (diagnosed with rapid-decline Alzheimers) who did that recently. His widow later told me that it was his final act of love.
Wolf_Song
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In having done some hospice volunteer time, plus being part of taking care of dying friends and family through the decades including through COVID years of taking care of childhood friend till he passed. Being there for many going through such before and after loved ones passing. And other things done. It deepens a person in empathy, compassion, understanding and more.
As well I am an advocate for MAID Canada and MAID (Medically Assistance in Dying) in other countries to. It is a more humane option than some one withering away painfully or to long in a vegative state. It is both more humane for those suffering in dying or otherwise plus for loved ones.
( big comforting hugs for those passing, those their for them and those mourning passed on loved ones)
As well I am an advocate for MAID Canada and MAID (Medically Assistance in Dying) in other countries to. It is a more humane option than some one withering away painfully or to long in a vegative state. It is both more humane for those suffering in dying or otherwise plus for loved ones.
( big comforting hugs for those passing, those their for them and those mourning passed on loved ones)
Scareltt
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This was a really rough weekend for Matty they’ve totally changed his meds, and he’s having a tough time with it.
The current cocktail they have prescribed has a side effect of erectile dysfunction ..
The type of “Personalty Changes” (that a clinical term) happen once every few years at first then like clockwork they get worse..
They redid his meds back in December..
Huntington’s Disease not for the faint of heart..
The current cocktail they have prescribed has a side effect of erectile dysfunction ..
The type of “Personalty Changes” (that a clinical term) happen once every few years at first then like clockwork they get worse..
They redid his meds back in December..
Huntington’s Disease not for the faint of heart..
Nicefella
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aliencardigan
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My heart goes out to you and Matty. I 100% agree that HD is not for the faint of heart.
Sadly my BIL is declining rapidly and the day to move into an assisted living facility is rapidly approaching. Fortunately he has a caring friend to assist him and a couple of his children give lots of support to him too. He finally has some meds that allow him to get a good sleep and that helps his day greatly.
I'm dreading the time when some of his children develop HD. He has too many children not to be affected.
Scareltt
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I worry every day about our girls. Wether they have HD or not only one of my concerns…
It’s a big one for sure..
How is care for Huntingtons in Canada?
Here it’s surprising. They assigned Matty a social worker, two neurologists, and occupational therapist.
He’s been in several drug studies…
Still the spiral continues, as you know nothing about this gets better..
aliencardigan
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He has a good neurologist and works with social agencies. It's still essential that close family or friend support continues. Sadly he never sought treatment years ago which could have delayed the onset. Eventually he will be in a personal care home to live out his final days.
The care that one receives is dependent upon the person or their caregiver having to advocate and push....it's not easy. My mrs did that for her mother. It's mentally and physically tiring and I would never wish the burden on anyone with HD or theire family/friends that support them.
HD devastates the families affected and those without the disease in their family will never know the toll it takes.
Scareltt
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I’m actually hopeful for our girls.. but my husband feels like it’s too late for him..
https://www.livescience.com/health/...for-huntingtons-disease-to-slow-the-condition
https://www.livescience.com/health/...for-huntingtons-disease-to-slow-the-condition
CuriousRick
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That looks promising
Scareltt
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The US works too slowly.. unless you have an additive substance similar to heroine.. then it’s approved immediately!
spacekowboy
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I've actually wanted to reply to this thread many times over the last few years. Over nearly the last 10 years I was a caregiver for my dad. From 2021 till the middle of 2024 when he passed it was round the clock. I wish I would have entered the chat, as the kids say earlier but when I would come to this place it was to find some distraction. Caring for him was simultaneously the hardest thing I've ever done in my life and the most rewarding. I do miss the old timer every day but I can talk about it now without tearing up too much. But anyhow, if anyone needs advice dm me and I'll get back to you when I can. I'm not here as often as I once was but I'll reply when I can.
Rob_Royale
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My parents are 82 an 83 and we're going through early dementia and short-term memory loss.
justanewsub
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Just sending you well wishes as I see this thread. I can't imagine, but I'm glad you have folks who will listen. While I don't know you, always willing to lend an ear!
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