Assisted living help with Parkinson's
June 22, 2011 4:12 PM   Subscribe

I have an aunt who is caring for her husband who is suffering from Parkinson's and dementia. She need to lock him in at night and he is basically incorherant. She get home care from 7am - 3pm, but after that is on her own. She is running out of money and options and lives in Massachusetts. What agency can I contact to better understand her options in terms of insurance and assisted living?
posted by rryan to Health & Fitness (9 answers total) 3 users marked this as a favorite
So sorry to hear this, I know how exhausting it can be to care for someone who needs that level of assistance. Your aunt can start by contacting her local Area Agency on Aging - they should be able to point her in the right direction. I know dementia does not always mean Alzheimer's but since many of your aunt's caregiving needs will be similar, she may also want to contact her local chapter of the Alzheimer's Association.

Without knowing more details about the family situation (are they eligible for Medicare? Medicaid? etc.), it's hard to predict what solution will be the most appropriate for your aunt, but those 2 resources should be a good starting point if she hasn't explored what the options and next steps can be.

Lastly, I just want to mention that my father recently passed away due to complications of dementia, and he was being cared for my mother at home until very recently, so I hope what I'm about to say doesn't come as an accusation, but as a warning. You mentioned in your post that your aunt has to "lock him in at night", and that set off some red flags for me - if he's at all a danger to himself or others, she needs to be very clear about that with his doctors and all medical staff - they'll be able to adjust his treatment accordingly. For example, my father was put on some anti-psychotics when he became a danger to my mother. It's tough to talk about since there is such a stigma around mental illness, but if she is at all worried about her husband's or her own safety, she needs to be sharing that with his medical team. Good luck and she's lucky to have such a caring relative to post here for further advice!
posted by pants at 4:19 PM on June 22, 2011 [4 favorites]

You might have some luck on, which provides information about all kinds of assistance for housing, healthcare, food, and much more. Here's the link for the resources for seniors in Massachusetts.
posted by summit at 7:01 PM on June 22, 2011

You should definitely, definitely follow the links others have provided, but I also want to say- don't assume that you don't qualify for something. Contact EVERY SINGLE AGENCY you can find and ask them for an intake appointment. Bring every piece of financial and insurance information that you have, and let the professionals figure out whether you qualify or not, meet the income restrictions, etc. There are often more resources than you might be aware of, with more generous requirements than you might think.
posted by Snarl Furillo at 7:40 PM on June 22, 2011

Hospice. It's not just for people with a terminal illness; my boss found them invaluable when she was trying to find a permanent home (something like three in three months) for her mother with dementia. I don't know how much it would cost in your area, but they could at least give you some leads on free or lower cost ideas for learning more about your options, including pamphlets and/or workshops to attend.
posted by Madamina at 8:43 PM on June 22, 2011

Response by poster: Thanks all for the great feedback and sites. While I'm willing and able to do the leg work, I'm in Illinois and getting this information gives me a start. It's frustrating as her kids are not stepping up to the plate. Maybe they are overwhelmed or something. I just need to start contacting people so I can at least give her some options as right now she's backed into a corner. It seems that right now her only choice is to spend down her money until she is destitute..

This was an immense help. Thank you!
posted by rryan at 1:02 AM on June 23, 2011

I don't know where your aunt and uncle are located, but I found Elder Services of the Merrimack Valley ( to be more help than imaginable when we were caring for my grandmother with dementia in our home. They are separate from the local chapters/councils on aging. I have referred others in my situation to ESMV and they've had good success with them. They are good for both providing resources to all sorts of home-care situations and in the very least, I'll bet they could point you in the direction of something local to your aunt and uncle. They are a resource for information and contacts, and they also will come into your home, do an assessment of the situation by talking to you and sitting down with you and your loved one so they can provide appropriate services as well. They will set you up with companions for your loved one if they just need someone to sit and read books/mail/converse, and they will go as far as respite care for time for the caregiver to get out of the house for a while. I know your aunt already has a respite caregiver in this case, but we found ESMV worked with our situation to provide additional services like daycare and placement in a long term care facility when it needed to happen. They were our best resource, provided a case manager, social worker, and a lot of good counsel through a very long five years of our life. Call them and see if there's at least a good place to start in terms of insurance and placement in a facility and I would think they could point you in some sort of firm direction.
posted by takoukla at 4:44 AM on June 23, 2011

If your uncle was a veteran, your aunt should also check with the VA Administration. My uncle had Parkinsons's and because he was a vet he was able to get into the local VA Soldier's Home in Holyoke, MA. where he received excellent care. Good luck!
posted by Hanuman1960 at 5:54 AM on June 23, 2011

It seems that right now her only choice is to spend down her money until she is destitute.


Please excuse my shouting, but I cannot say this clearly enough. Don't assume that is the only option. Don't assume that you know understand how the spend-down to become Medicaid eligible has to happen, if it does have to happen. Get your aunt in touch with her local Agency on Aging and get an actual caseworker to help her with her application and help her plan a spend-down if she does in fact need to do that.

There are professionals whose job is to help your aunt navigate this system. Let THEM make the determination. DON'T ASSUME ANYTHING.

And, um, on the "not assuming" side of things, my apologies if your aunt has already applied for Medicaid and been advised to undertake a spend-down and that there are no other resources available to her. I very much hope that is not the case.
posted by Snarl Furillo at 5:28 PM on June 23, 2011

Response by poster: @Snarl Furillo- no apologies needed. Your suggestion on not assuming are right on. I'm actually involved because it's my belief that other relatives have assumed certain things. I think that is a mistake many make without exploring all options. Thanks!

@everyone else- thanks again for the resources. I'm compiling them and starting to contact them all. I'm hoping that my aunt does not have to spend down resources in the end. She is lower-middle class now, and needs to at least hang on to what little she has left.

posted by rryan at 3:33 AM on June 24, 2011

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