Question for those who are also disabled

Do you ever feel pressure to move into a nursing home or another 24/7 environment to get all your care needs met? Or do you find community supports enough to meet your day to day needs?

Honestly, I find that the community supports are not functioning well enough to meet all my needs, but I am scared to move into a 24/7 environment because of restrictions and the age difference between me and other residents. I know as I get older my need for care will increase and I will have to do something.

Anyone else feel this way?

CPDude said:

Do you ever feel pressure to move into a nursing home or another 24/7 environment to get all your care needs met? Or do you find community supports enough to meet your day to day needs?

Honestly, I find that the community supports are not functioning well enough to meet all my needs, but I am scared to move into a 24/7 environment because of restrictions and the age difference between me and other residents. I know as I get older my need for care will increase and I will have to do something.

Anyone else feel this way?

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It might be different in the US. But in the UK I would stay out of a communal care setting. Unless I have absolutely no choice.

I know care in the care in the community is not all that it could be. But I would rather Still have the privacy of my own home.

If you think that you could do with more support hours. Then it is the squeaky wheel that gets oil. When other words making lots of noise about it I keep going into you get what you want.

Hope this helps

I hear this often. A good friend of mine is a personal carer. Firstly I think it's your right to live as independently as possible, and secondly, young people should not be put in nursing homes. Sorry to the old folk, but let's face it, most of them are really really old folk. If they must have community care for young people then it should be age appropriate so that social needs are properly met. The other thing I hear about is lazy personal carers, or those that don't seem to really give a crap about their work....I really hope you don't experience them.
It must be so frustrating not being able to fully take care of yourself, and I can truly appreciate the anxiety you would have about possibly having to move somewhere where you are reliant on people you don't really know.

I am already relient on people who are not family. I get hours from the state, but finding the caregivers to fill all those hours is a pain. Wages are too low and many people simply don't want to do the work of feeding, bathing, dressing and changing wet and messy diapers everyday. I wish I could hire privately. Would be easier

Sorry to hear that. I guess it takes a special kind of person who has a really caring nature. Maybe if caregiving was given more cred by society in general, things would be better. But seriously, most people, and especially decision makers, don't have to even think about it. How things would change if the tables would turn and they found themselves in need of full care.

I have used that argument before. Anyone who spends a day with me will see I need care. It's obvious. A couple of times, I have been glad to check into the hospital, they are really good at direct care, and someone is always there.

I have a friend in South Boston, MA with CP, and she is young and in a nursing home.
She really hates being in there.
No privacy, and the Dementia/Alzheimer's patients are driving her totally nuts.
She ended up in the nursing home after losing her apartment due to rent increased beyond her ability to pay.
Independence is preferable to living in an institutional shithole.
ADAPT has a motto:
"FREE OUR PEOPLE!!!!!"

It would be nice if there was an intermediate facility. There are some places that qualify as assistant living where the person has their own apartment. My aunt was in such a place and it was very nice. There were four ground level apartments called clusters. Each apartment was a good size, kitchen, eating area, living room, two bathrooms and two bedrooms along with a screened in porch. All the walkways had a roof protecting the sidewalk. There was a common restaurant/eating room along with a lot of other amenities, but it was very expensive.

She made a large, non-refundable down payment, and paid quite a bit each month. She could afford it but I'm not sure my wife and I could. And that's the problem. Good care is expensive. She was independent in her living, but someone called her everyday to make sure she was okay.

Independent living is an important issue for us disabled adults.
So far, I am ageing in place in the family home with my little brother checking in on me, since he also lives with me.
Someday, I will need more supervision, but for now, our arrangement is working.

Yes independent living is important, but my community keeps showing me they are unwilling/unable to meet my needs. Being unable to find experienced caregivers to work shifts that have been open for more then a year is frustrating. The lack of paid supports has put strain on the limited amount of natural supports available to me. None of my family lives close enough to help and I doubt they would want to. Assisted living is nice, but expensive. If Medicaid/Medicare doesn't cover it, I can't .