Are there residential group homes in the U.S.? And your exp. when needing more care.

[GypsyGirl]

The subject line pretty much sums it up.

Does anyone know if there are residential group homes for ME/CFS in the U.S.? I've found resources for mental illness and the elderly & children, but not a single place for chronic physical illness. Even short term care could be very helpful.

Recently, my cognition is dipping so that the most I can do is manage to follow current protocol, but I don't know what to do/where to go/who to ask if I lose that. I have a bit of a support system - a couple friends who can help with basic stuff, and an extremely overwhelmed husband who is close to a nervous breakdown himself.

If no one's heard of group home possibilities, ideas on what to do next would be much appreciated. I'm afraid I'll end up in a hospital where no one understands the dysautonomia complications, pronounces I "seem fine" and kicks me out. Or perhaps worse, slaps a "psych case" stamp on my bum and forces unneeded meds into my system.

I have insurance, and could put a modest monthly expense to a living facility, but it seems like most ME/CFS stuff, I fall through the cracks.

Anyone with info or similar experience, feel free to respond. (And I apologize for rambling; it's pretty accurate at summing up how lost in "the System" I feel. )

 

[WillowJ]

my grandma lived in a residential care home in the US. We were not especially pleased with it (they fed the residents canned dinners and did not help them to the dining room to eat together but left them in their rooms almost all the time), but she didn't want to move, so we didn't make her move. I think there are better ones. Pretty sure I have visited in a better one, for some reason or another.

There should be a state, county, or other local disability agency which can send you a booklet, assign you a social worker, or give you the phone number for a referral service. This may be combined with the senior agency. Some of the senior housing will take disabled people.

A national link is here:
http://portal.hud.gov/hudportal/HUD?src=/topics/information_for_senior_citizens

ETA: I may have missed you were looking for an ME/CFS home. Sorry about that. as Sushi said, it does not exist as far as I know, although it's talked about a lot, as that would really be ideal in many cases.

There is such a thing as "custodial care", which is in-home nonmedical help. This is not covered by Medicare so it might not be covered by insurance, but if you have some money to pay, there might be lower-cost options. For others reading, I think Medicaid covers this, but from what I hear it isn't easy to get set up.

 

[Sushi]

@GypsyGirl

As far as I know (and it is likely I would know) there are not any group homes in the US especially for ME/CFS. It is a huge problem for so many. I recently moved to a co-housing community which, while not designed to support people who are ill, has the intention of residents supporting residents and so far it has been great. We live independently but in a small, close community.

There is also a large health food store next door!

Sushi

 

[GypsyGirl]

@WillowJ - thank you for the info. I'm in my 30's, so most senior housing probably wouldn't take me, but it doesn't hurt to make a few phone calls.

@Sushi - I was afraid that might be the case with ME/CFS group homes in the US. Though I knew the "facts" of illness, I'm continually shocked by how many others I've come across in similar situations. I'm so glad you've found a safe haven to call home. AND by a health food store?!?! Sending virtual organic banana blueberry spirulina smoothie thoughts, possibly with cacao nibs, to you. Yum. ;-)

 

[Valentijn]

@WillowJ - thank you for the info. I'm in my 30's, so most senior housing probably wouldn't take me, but it doesn't hurt to make a few phone calls.

I think "senior" assisted living also usually includes the disabled.

 

[CBS]

Have you looked into home health care services? Both you and your husband need support. Most home health care services can help evaluate needs and are "scalable," you can get help with cleaning, meals, self care etc and they are used to dealing with patients who's needs change over time. If you go this route, get references from friends and family. Cancer tx centers may have a list of preferred care providers. Patients with advanced RA and MS as well. Good luck and very sorry to hear you're having such a rough go right now.

 

[GypsyGirl]

@CBS ...I wasn't sure what home health services entailed 'til just now. I've done a quick check and that could be a really helpful stopgap. I'll definitely inquire into local services.

 

[barbc56]

Somewhere, and atm I am too foggy to find it, there was a thread where we discussed forming these type of places to live. I will keep looking.

@Sushi, I'm thinking you were involved in the thread before you moved, but I may be misremembering. :thumbdown:

Barb

 

[Sushi]

Somewhere, and atm I am too foggy to find it, there was a thread where we discussed forming these type of places to live. I will keep looking.

@Sushi, I'm thinking you were involved in the thread before you moved, but I may be misremembering. :thumbdown:

Barb

I think I was involved in the earlier thread, but I have forgotten!

Sushi

 

[taniaaust1]

I think "senior" assisted living also usually includes the disabled.

It could be as Valentijin said. I know Im not in your country but in my own, Ive heard of rare cases where as there is nowhere else for them to go, where young adults with things like MS horribly end up being put into elderly nursing homes with the elderly residents.

It seems no matter where one is in the world that if you are a young adult with a physical disablity (who hasnt been disabled all ones life), one falls between those cracks and there just arent many options out there. Im in the same boat, I cant get gardening support as I'd need to be 55 years old etc

 

[beaker]

I think I was involved in the earlier thread, but I have forgotten!

Sushi

Here's one of the threads we had on it And there's a link to another thread in the thread. whew.

Sorry things aren't going so well.
My parents took care of me, now they need help so we have aides come in for all of us. We got the names from the local "office for the aging". It's run by the county. Also many physical rehab centers will have lists of aides and/or aide services for their clients that still need help when they go home and will often share. Try a search for local/regional Independent Living Centers. Sadly our local one sucks, but I here that others are quite helpful.
Sometimes hospice groups also have home aide services and/or can point you to some resources.

 

[barbc56]

Thanks for finding the thread @beaker.

Barb

 

[GypsyGirl]

@taniaaust1 and @beaker - thank you for the info. It's encouraging to have a better idea of options (however limited they may be).

And @taniaaust1, wish I could help you garden. I love puttering around outside. I've been getting my "fix" by rewatching the 1993 movie of "The Secret Garden".

 

[aangelonduty]

The subject line pretty much sums it up.

Does anyone know if there are residential group homes for ME/CFS in the U.S.? I've found resources for mental illness and the elderly & children, but not a single place for chronic physical illness. Even short term care could be very helpful.

Recently, my cognition is dipping so that the most I can do is manage to follow current protocol, but I don't know what to do/where to go/who to ask if I lose that. I have a bit of a support system - a couple friends who can help with basic stuff, and an extremely overwhelmed husband who is close to a nervous breakdown himself.

If no one's heard of group home possibilities, ideas on what to do next would be much appreciated. I'm afraid I'll end up in a hospital where no one understands the dysautonomia complications, pronounces I "seem fine" and kicks me out. Or perhaps worse, slaps a "psych case" stamp on my bum and forces unneeded meds into my system.

I have insurance, and could put a modest monthly expense to a living facility, but it seems like most ME/CFS stuff, I fall through the cracks.

Anyone with info or similar experience, feel free to respond. (And I apologize for rambling; it's pretty accurate at summing up how lost in "the System" I feel. )

greeting's (GypsyGirl) & all .....
I live in beautiful Western NC and would love a thread on this subject also (because I want to do this ) ....me- sick for over 35 yrs...new here (member yrs ago).....& just bought an RV, because I am way too sick to make a 'reg' move......love the RV...only prob.....I am sooo issolated and I would LOVE to have ' family ' around me, who understand. !!!! I got the caregiving thing 'down' now as I have 40 hrs @ wk for a caregiver (medicaid) .....any one out there want to start a small community ?? ( a peaceful, loving,supportive, no drama, love tree's,kindness,truth,old hippies would be great-like earth mom types Spiritual, etc......w/ xxx)

 

[aangelonduty]

greeting's (GypsyGirl) & all .....
I live in beautiful Western NC and would love a thread on this subject also (because I want to do this ) ....me- sick for over 35 yrs...new here (member yrs ago).....& just bought an RV, because I am way too sick to make a 'reg' move......love the RV...only prob.....I am sooo issolated and I would LOVE to have ' family ' around me, who understand. !!!! I got the caregiving thing 'down' now as I have 40 hrs @ wk for a caregiver (medicaid) .....any one out there want to start a small community ?? ( a peaceful, loving,supportive, no drama, love tree's,kindness,truth,old hippies would be great-like earth mom types Spiritual, etc......w/ xxx)

so miss gypsygirl....r u still on u'r own ? & where in nc do u live ?

 

[GypsyGirl]

Responded in private message.

 

[taniaaust1]

greeting's (GypsyGirl) & all .....
I live in beautiful Western NC and would love a thread on this subject also (because I want to do this ) ....me- sick for over 35 yrs...new here (member yrs ago).....& just bought an RV, because I am way too sick to make a 'reg' move......love the RV...only prob.....I am sooo issolated and I would LOVE to have ' family ' around me, who understand. !!!! I got the caregiving thing 'down' now as I have 40 hrs @ wk for a caregiver (medicaid) .....any one out there want to start a small community ?? ( a peaceful, loving,supportive, no drama, love tree's,kindness,truth,old hippies would be great-like earth mom types Spiritual, etc......w/ xxx)

Though Im not in America, I'm curious how the American system works around all this. Is your caregiver paid by your government through the medicaaid thing?

Someone here told me there wasn't government paid support services for the severely disabled in America (and of cause severely disabled cant work) and I've been trying to work out how these people then survive if their support services aren't some how paid for..

 

[taniaaust1]

GypsyGirl. I too are wondering if you are in the same situation as you previously were or if you managed to get the help or find somewhere suitable to move to? I really hope your situation improved.

 

[GypsyGirl]

@taniaaust1

Since I posted this thread, my husband left me. I lived alone for about 5-6 months. I moved from NC to PA as I could no longer care for myself (couldn't get to doc appts, groceries, meds). I moved in with the only people who could/would take me in. The first few weeks were bad as I had asthma attacks and seizures as it was a smoking household. (They've since stopped smoking and cleaned their apartment better, so the seizures have stopped.) Neither drive, so I'm still having problems with everything but food; I'm no longer malnourished. I share a room with their toddler. I've lost more function and am more bedbound, never leave the apartment, never go outside. I'm going through "The System" again, being evaluated and referred around to appointments I can't get to.

I don't know which situation is worse/better. I've hit a wall of exhaustion - not just with being sick, but with fighting and fighting to get better. ...I feel like if I could rest - really rest - without the bureaucracy in a safe place, I would feel better in a more timely fashion. Big dreams, right?

I'm sorry I don't have a more cheerful response for the time being. I meant to answer, but it turned into a rant. :-\ I'm so angry at continuing to fall through cracks, and I keep getting sicker as I beg for help. It feels so hopeless. There are so many people sick like this. There's nowhere to go, and no one seems to care.

 

[AndyPandy]

Oh @GypsyGirl I am so sorry that you are going through such tough times. Just to let you know that people on PR care about you.

Sending you love and encouragement. Hoping for better days for you.

Best wishes, Andy