Group home for ME/CFS

[jester]

Does anyone know of any group homes or co-housing for people with ME/CFS? I'm a single man, 48, living with my sister but feeling very isolated and alone. I'm looking for an existing group home or co-housing living situation for fellow ME/CFS people, preferably in the Boston area where I now live.

If no such group home exists, I would like to try to start one. If anyone here might be interested in living in a group home, please get in touch with me.

Thanks,
Jesse

 

[Tally]

I thought of that as well, as the solution for burdens and isolation we suffer from. I don't live in that area, but I wish you good luck!

 

[Patrick*]

I've had the same thought. ME/CFSers could really use the sense of community that would come with such a group home. If I didn't have a family that I live with, I would seriously consider this.

Of course there will be a lot of challenges given that CFSers are usually living on low income or disability, but I think these things can be overcome. I wish you the best of luck.

 

[Tammy]

Jesse, I think your idea is a good one. Maybe their should be a section especiallly for people that are interested in this idea. I once belonged to a website that started a section especially for this. You listed where you live and whether or not you are willing to re-locate.etc. etc. What are some of your ideas to get something like this started?

 

[August59]

There was a thread started about this about maybe a year or 2 years ago. It seemed like somone had some land in either Nevade or Washington and they were looking at trying to build something - I think! It could have been a dream I had. I see if I casn find it.

 

[hurtingallthetimet]

hope you find a place you love..but liek the others i dont live there and ive never heard of it either...but it sounds wonderful...im so isolated and every month seems to get worse...i do have hubby and kids and the kids are all getting older and do help so much..im so grateful for that..

but i would love to have neighbours with the same illness who understands...someone who would be content to come over to my home and to just watch tv...or talk some...ive never felt so alone in my life...

i agree with the others that your idea is very good...and i think it would help so many...

 

[Little Bluestem]

As a single person, I am concerned about my ability to care for myself if I began a treatment. In a group home the less ill could take care of the more ill. Members of the household might need to coordinate their treatments so that there would always be a couple of reasonably functional people in the house.

 

[Jennifer J]

Thanks for the forum, Jesse. I too have wondered if such a place existed. I'm concerned about becoming homeless - within a few years won't be able to afford rent in roommate situations. A place like this would be good for the loneliness, too.

A dream of mine is to have a piece of land with independent homes or cottages and a group home there too with common area for all to share . Reason for independent separate residences is for us with adverse reactions to "fragrance", etc and other personal or health needs. I live in San Diego and I'm very interested in the idea.

 

[maddietod]

I'm interested, but not quite there yet. I've got a house in Maryland I can't afford to sell in this market, and one kid still home - but only for a few more months. I'm very interested in moving once my house gets some value back. I've been thinking maybe Vermont......I'm not too keen on traffic..........and a shared situation of some kind would be great.

 

[taniaaust1]

August I think is remembering correctly..there was some talk of someone wanting to set up some group home a couple of years ago. I dont know if the idea ever got off the ground. This kind of thing is definately needed.

It would be great if one of the big CFS associations could buy a home (as a asset if one was brought which could grow in value) and rent out the rooms to those in need who have ME/CFS. Have the same kind of rule in it as they do at many ME/CFS society meetings of no chemicals or smoking. Its certainly something I wouldnt mind some of my societies membership money going towards and besides..it would pay for itself and even by a money earner by those renting the rooms.

Maybe if enough people contacted their societies saying they wanted something like this set up for those with ME/CFS (maybe with the focus on those in most need), it could happen. (or maybe even online groups could start up an org and fundraise to buy a house to do this...

Good luck jester

 

[Aileen]

With all the foreclosures that have happened in the US in the past few years, I would think that this would be a good time for a large organization to be able to pick up something relatively cheap. Perhaps some organizations should be contacted about this very idea? The Chase Community Giving Contest will be starting soon... sounds like a good fundraising opportunity for it for someone. Just thinking out loud ...

 

[jester]

Thanks everyone for your thoughts.

Tammy, to answer your questions, my thought was to either (a) rent a large apartment, or a house, or (b) buy a house. And then rent/sublet rooms out.

I like the idea of owning a house and renting the rooms out, because then there's more of a sense of permanence and freedom to do as one wants with the property. The downside is, there's more work/responsibility. I used to be a very active craftsman/builder and could do pretty much everything required to maintain/repair/improve a house, but in present circumstances I would have to hire a handyman for groundskeeping & maintenance.

I've looked around a lot for affordable, large houses. The ones nearest me are in western Mass, or up in the NH/VT/ME area. The farther one gets from the big cities, the less expensive the real estate, but for people who need medical care, distance from big cities can be a problem, so obviously there's a tradeoff to be made.

For those of you who mentioned having a separate page for housing issues, let me contact Cort and see if he would do so for this site, so we can try to get some more focus on the housing issue.

Please keep the comments, questions, and ideas coming!

Jesse

 

[CJB]

I'm in a situation where I'm looking at different housing arrangements and I've thought a lot about this. Sharing housing and a vehicle would be great. I'm not sure about a 100% sick people arrangement, though. My thinking was more of a blend of maybe younger students who would be happy to trade labor for rent/meals or seniors who are still active and healthy, and sick people.

I also remember a thread started about this a couple of years ago. It's a good idea.

 

[jester]

CJB, that's a good idea about including at least one younger person (e.g. student) who could help out with caretaking, house chores, etc.

 

[CJB]

Lawn mowing!

 

[maddietod]

What happens with prices in a city in a smaller state? Like Brattelboro VT?

 

[Tammy]

Gosh..............there are so many variables involved. Some people may want to share a house..........others might want their own space but live near each other......like a community..........and then there's the question of low-income housing or Section 8 or HUD (this is what it is called in my area) Some apt complexes offer this..........other's don't...........many many things to consider......but just starting a thread on this is a start.

 

[jester]

Madie, areas like southern VT and NH are definitely less expensive than major metro areas like Boston. I wouldn't mind living up there, but others might find it too remote for their tastes.

 

[Hope123]

This is an interesting idea.

It was a different situation sponsored by a university but I used to live in a building that used to be an old convent with about 50 simple furnished rooms for each person. The convent had a large living room, storage areas, indoor exercise room, a large enclosed porch, outside grassy fields, and an industrial kitchen for all to share. It was the perfect balance of having your own space and yet being able to hang out anytime since there was always someone around. We had some amazing parties, BBQs, and hikes. I lived there for a few years with a bunch of grad/ professional students and visiting scholars.

I agree with the prior idea of perhaps having other types of people in the house as long as they are respectful of CFS and of others. AARP recently had an article about indepedent seniors who did not want to live alone or with only older people looking for such situations. Students, creative types, single parents with part-time custody of their kids, people with other chronic illnesses, healthy single people who don't want ot live alone could also be intersted. Google Co-op housing for some ideas.

This type of project could potentially be funded creatively via something like Kickstarter (crowd funding on the web).

 

[jester]

Hope, Kickstarter is an interesting idea. I'll look into that. I've read about Kickstarter technology projects, where people contributed to development of a new product, and usually got something back like a product prototype. But I know there are also artistic and other types of Kickstarter campaigns, and I'd have to read up on how those work.

That convent sounds like a perfect setup. It reminds me of another organization I've read about called Unity Acres, a Catholic home for formerly homeless men in upstate NY, on the grounds of what used to be a sanitarium.