Do you have experience with Alzheimers?

[Anonymous]

Are there assisted living situations for couples in which one person has Alzheimers or dementia and the other doesn't, but wants to be with the spouse?

MIL has Alzheimers or some variant of dementia. She is not completely gone mentally, but she is frail physically and very timid and cannot be left alone, ever. FIL insists on doing everything for her himself (dressing, bathing, helping her move about, cooking, etc), and it is killing him. Both are in their mid-80s. He wants to live with her, not put her in a home, but he is either unable or unwilling to pay for full-time home care, which he really needs. He has probably several hundred thousand dollars in savings, but he is from the generation that cannot stand to spend money, and he does not have long term health insurance.

Appreciate any advice from those who have been there (or who work in the field) about options for couples like this. They live on Cape Cod, and he would not be willing to leave the area. TIA

[Anonymous]

What a tough situation. Unfortunately, I do have experience with Alzheimers as my mom had it and passed away about a year ago - she lived in a memory-care-specific assisted living community in Mass. It was a very difficult situation for a number of years and I so feel for you and your family.

My mom's best friend also has it, and she is in an assisted living community in Marshfield, MA (near Cape Cod) - I think it is The Village at Proprietors Green (?). They have a Memory Care unit and her DH (who does not have dementia) lives there as well. It is certainly very possible for a couple like your ILs to live together in an assisted living community.

This sort of care is quite expensive, but if they share an apartment it may not be too bad.

I caution you against looking at Sunrise - my mom lived in one for a few years and we had constant issues. I felt we had to be vigilant (excessively so) to make sure she was well cared-for. This will be the case no matter where your ILs live, but Sunrise in particular was extremely profit-driven IMO, often at the expense of their residents.

[Anonymous]

OP, I feel for you. Cape Cod has some decent elder care resources. Start at the state level and see if you can find some local agencies to help:
http://www.mcoaonline.com/http://www.mass.gov/elders/

There are some free and low-cost resources, at least in terms of counseling, support, and assistance. Some communities have free senior buses and free senior activities and/or centers. My dad has mild dementia which has been diagnosed as related to causes that are not Alzheimers. He lives part-time on CC and part time in central Mass. Through the local elderly council, we found a wonderful person to drive and assist him when he is on the Cape, and if your inlaws are anywhere near Orleans, I can try to get the contact details.

But that is really just a short-term solution. We really wanted to find one place where my dad could go and stay no matter what happens - he is still at a point where he can live independently but only just barely. This is called continuing care retirement communities (CCRC) and surprisingly there are not too many in MA (there seemed to be more around the DC area, but some were affiliated with the Sunrise company mentioned by the PP, so I was interested to see that post!) We looked at facilities in Hingham, Norwood, and one or two others in Central Mass. There were a few others around the area that we didn't investigate too closely because they weren't close enough to my siblings who are local: I recall one in Jamaica Plain and Chelsea. Many of these have memory care units, as do many facilities that are more narrowly focused on either assisted living or skilled nursing care. I don't recall finding any of this stuff on the Cape. The nicest amongst these would be a great place for a couple with different needs, but they are PRICEY. My dad is also depression-era and he hates spending money that he hoped to leave to his kids, but luckily he has sort of come to understand that it's unavoidable.

Fwiw, I saw this as a kid as one grandmother had Alzheimers and another developed dementia late in life. Each lived with us for a year or more until it got to be too much. The emotional toll and physical demands are excruciating for all involved. Please find help for your inlaws and persuade them to utilize it. Use the resources of the elder organizations that are local to them AND those that are local to you (they may not be able to provide assistance but they can offer guidance.) Google memory care, CCRC, etc. We were lucky in the sense that we pushed for an assessment that resulted, unexpectly, in the revocation of my dad's license - we were shocked but it was a godsend in retrospect because it forced us to plan for the future. You may have to be that forcing mechanism for your inlaws. Good luck!

[Anonymous]

21:41 here again. PP gave you some great info.

RE Sunrise, to clarify, after a series of issues we moved her out of there to another facility. Maybe other Sunrise communities are different, but honestly, I doubt it based on my reading. If I could do it all over again, I would look for a not-for-profit based community.

A few things:

The book When the Time Comes by Paula Span is helpful and an easy read.

The New Old Age Blog at the NYTimes website is terrific.

If your FIL served in the armed forces during wartime, he and your MIL may be eligible to receive Veterans' Aid. Some sources for info (this is just from a quick search, you'll want to do your own research):

http://www.veteransaidbenefit.org/aid_and_attendance_pay_assisted_living.htm

http://www.veteranaid.org/

I hope this helps.

[Anonymous]

Thanks to everyone who responded. I will pass the Massachusetts resource suggestions along to family members who are local there but not very proactive.

[Anonymous]

PP here again: we mostly suggested where/how to move, but if your family members are really set on staying in their home, it can be done safely, if they're willing to pay for some in-home help. Any local elder council/agency will have names and numbers of social service organizations that offer caretaking services. We got this number the day that my dad lost his license, and we mainly hire drivers, but they will literally do anything and everything including bathing etc. Of their own volition, the drivers have sometimes helped my dad sort thru things like how to renew his CVS member card, or emptying expired food from the fridge. You might also consider paying for a consult with an elder care consultant - it seems to be the next big thing. We did this, and in the end didn't use her services too much. But she was very helpful in appreciating the whole range of issues to start thinking about, including safety in the home etc. At this point of physical and mental issues, you really need to approach the safety issues much as you would a young child. Falls in the elderly can be catastrophic, and tragic if the other partner is too incapacitated to call for help.

[Anonymous]

My MIL just passed away in September. She was at a Sunrise facility in the DC area and she and we were very happy with it. She did not have memory issues, but there were at least two couples there where one spouse had memory issues and the other did not. They lived together on the memory care floors and the non-affected spouse was free to leave the floor and do what all the rest of the non-memory care residents did. We haven't been there since September, so I don't know how things are working out, but it seemed to work at the time.

[Anonymous]

PP here. We moved my MIL here from NJ in 2010. We used an elder care consultant in Bethesda and she was very helpful in figuring out how to get started.

Good luck. this is so hard.