Long-term nursing facility in USA

[miriamkf]

I am posting on behalf of my dear friend with extremely severe ME/CFS -- I'll refer to her as Lisa. I have done some care-giving for her while she was hospitalized, and mainly serve as her advocate and support her family. Lisa is 32 years old. She is bed-ridden and sits up once a day for 15 minutes. She wears a diaper, has a g-j tube for feeding, and struggles with extremely severe sensitivity to all light, sound, touch, and smell. She communicates only by writing, around once a day. Lisa describes her condition as similar to Whitney Dafoe's when he was most severe.

After 3 years of round-the-clock care, no one in Lisa's family is able to care for her any longer. Lisa has requested placement in an adequate nursing home facility in Massachusetts. I am working with Lisa's family to find such a place, if it exists. Do you know of any Massachusetts-based facilities that have cared for pwME?

We are in a crisis, and do not know how to keep Lisa safe.

 

[Cloudyskies]

Very sorry to hear this. You may already know of this organization: https://massmecfs.org/

I wonder if they have any info.

I’ll ask my friend who is more familiar with nursing homes here in MA.

 

[Strawberry]

@miriamkf So sorry to hear about Lisa! I’m currently working with A Place For Mom. They are able to offer lots of helpful advice, and hopefully can assist with finding a nursing home or rehab center.

Best of luck, and keep us posted. All of us will need the information at some point in our lives.

EDIT. Just thought I’d add that A Place For Mom isn’t just for moms. Or elderly. They hopefully can assist you in finding a facility near family. Just research facilities yourself too via google or such.

 

[miriamkf]

@miriamkf So sorry to hear about Lisa! I’m currently working with A Place For Mom. They are able to offer lots of helpful advice, and hopefully can assist with finding a nursing home or rehab center.

Best of luck, and keep us posted. All of us will need the information at some point in our lives.

EDIT. Just thought I’d add that A Place For Mom isn’t just for moms. Or elderly. They hopefully can assist you in finding a facility near family. Just research facilities yourself too via google or such.

Thanks for this. Are you working with A Place for Mom to find a facility for someone with ME, or for an unrelated reason?

 

[Strawberry]

For myself.

 

[miriamkf]

For myself.

Thanks for clarifying. I will reach out. Best of luck with them <3

 

[Strawberry]

Have you made any headway?

 

[Mary]

@miriamkf - it might be helpful if you put "Massachusetts" in the title of your thread instead of "USA" - it might catch someone's eye who is from the area. Let me know if you'd like me to do this for you as members can only edit their own posts and threads for 7 days from the date of posting.

Also, tagging @Rebeccare who I think is knowledgeable about services in Massachusetts -

 

[Rebeccare]

Also, tagging @Rebeccare who I think is knowledgeable about services in Massachusetts -

While I'm in Massachusetts, I am unfortunately not knowledgeable about this kind of services. I second @Cloudyskies suggestion to reach out to the folks at MassME and see if their patient care team has any guidance (they're really nice, I promise!): https://massmecfs.org/contact-us-form

The only place I can think of off the top of my head is Hebrew Senior Life, but I'm not sure if that will be the right fit: https://www.hebrewseniorlife.org/services/health-care/long-term-chronic-care

This might also be helpful information: https://www.massgeneralbrigham.org/...ation/rehabilitation-skilled-nursing-facility

I wish I had more knowledge to share with you! Please PM me if you think I can be helpful in any way--at the very least I'm another local who can try to add my brainpower to this!