Balancing Senior Living Choices / Dementia

[Anonymous]

Keep in mind that every move will make her condition much worse, necessitating more care. If it were me - keep her in her current home with caregivers that you oversee, then consider just caregiver at night and adult daycare, then when it’s obviously time - move her to a dementia unit near you. The sale of the house will help fund that unit.

[Anonymous]

Anonymous wrote:A new place isn’t necessarily going to take someone with moderate or severe dementia, especially if the person has behavioral issues, so the place you move her may be the place you are stuck with long-term. I wouldn’t count on finding a cheaper place later. A lot of places are open to taking someone in the early stages of the disease and moving them into memory care later, but will not accept directly into memory care.

This is a very important point. The earlier she moves, the easier it will be for her to adjust. We moved my FIL into an assisted living memory care floor when he had moderate dementia and he had a very hard time because he didn't understand what was going on and had lost many basic living skills.

[Anonymous]

Anonymous wrote:Keep in mind that every move will make her condition much worse, necessitating more care. If it were me - keep her in her current home with caregivers that you oversee, then consider just caregiver at night and adult daycare, then when it’s obviously time - move her to a dementia unit near you. The sale of the house will help fund that unit.

DP. This is very difficult when you are not local. There is also a shortage of caregivers right now and her mother may not receive good care without someone checking on her regularly.

[Anonymous]

Anonymous wrote:

Anonymous wrote:A new place isn’t necessarily going to take someone with moderate or severe dementia, especially if the person has behavioral issues, so the place you move her may be the place you are stuck with long-term. I wouldn’t count on finding a cheaper place later. A lot of places are open to taking someone in the early stages of the disease and moving them into memory care later, but will not accept directly into memory care.

This is a very important point. The earlier she moves, the easier it will be for her to adjust. We moved my FIL into an assisted living memory care floor when he had moderate dementia and he had a very hard time because he didn't understand what was going on and had lost many basic living skills.

THIS!! Also, family members can go into denial about level of need. My mother (much younger than Dad) would not put him in a residential setting despite the fact she could not cope with him even with him going to adult daycare and having caregivers when he is home. She was losing it and we begged her to put him in residential before it was too late. She waited too long and dumbfounded no place would take him because his needs were too great even with a personal aide. She insisted he wasn't at nursing home level when he was and got rejection after rejection. Meanwhile a friend of his went to residential early on when the family saw his spouse was struggling. He is at a lovely memory care (started in assisted living) and while pretty far gone, he still enjoys the activities there and he enjoys their visits, even though he's not sure who they are.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Keep in mind that every move will make her condition much worse, necessitating more care. If it were me - keep her in her current home with caregivers that you oversee, then consider just caregiver at night and adult daycare, then when it’s obviously time - move her to a dementia unit near you. The sale of the house will help fund that unit.

DP. This is very difficult when you are not local. There is also a shortage of caregivers right now and her mother may not receive good care without someone checking on her regularly.

Agree with PP, it is difficult to manage in home care long distance. OP you mentioned wanting more social engagement for your mother. Given your situation, I would move her closer to you in the near future. It will be easier now and she may even create some relationships that will help as the disease progresses. You will also have a chance to spend more time with her.

It depends on the level of care she needs right now, her insurance, and available finances. If the facility near you is a CCC and offers a benevolence fund, it would be an easy choice to start there. If it is a higher level of care than you need, then it may not be worth it just yet. If you are in the DC area there are some good agencies that provide in home care in 2 hour increments. Many do 2 hours in the am and two hours in the pm -- that would ensure she has care daily and reduce the burden for you, but would likely be less expensive than assisted living. Medicare may cover at least some in home care.

I suggest you spend some time really looking at her current coverage as well as other options. See what is/could be covered for her in your area before making your final decision. For a loved one we found changing from an HMO to straight medicare made it much easier to get care and more was available in home.

Bottom line, you need to consider the big picture and long term, but the next few years are likely the most important in terms of her comfort and enjoyment. After that, it's what will work for you.

Best of luck

[Anonymous]

Lots of good thoughts in this thread. I would just add that, if you can, find a good attorney who specializes in eldercare issues to talk through of the financial aspects of your mom's care. My mom did this when figuring out how to best pay for my dad's care while not ending up in abject poverty herself. Situation was a little different - married couple, shared assets, etc - but I suspect it would still be helpful to you in mapping out the future.

[Anonymous]

This the OP again. Yes, thanks all. Gives me some good starting points.

[Anonymous]

I would look for a continuing care community near you -- it doesn't need to be the most expensive and it doesn't need to be right next door, but something within a 30-60 minute drive. The thing about CCCs is that you have to get in on the ground floor, so to speak, when the senior is healthy and with it enough to function in independent living.

With respect to social circles, CCCs have built-in socializing -- it's like going to college -- everyone is primed to make friends. My mom had a great community where she lived in PA, but it wasn't sustainable for her to live there long-term in a single-family house. She loves her current CCC in McLean, says it's the best thing that's ever happened to her (and she kinda made the move difficult and treated us like we were forcing her into it, but has totally changed her tune).

Don't underestimate how difficult and time-consuming it will be even if your mom agrees to a CCC and you find one near you to apply, get accepted, sell her house, move, etc. It needs to start now while she's still capable of engaging in whatever capacity, because there's touring, identifying places she likes, applying (which includes both financial and health disclosures, a doctor's physical, etc.), and moving. It's a huge hassle even if your parent is financially solvent and well organized.

I would not go the caregiver route, especially long-distance. Caregivers are hard to hire, hard to retain, and hard to manage if there are a lot of doctor's appointments, etc.

[Anonymous]

Tons of good advice above. I'd add/reiterate: try to arrange things to make *one* move, earlier rather than later. A close friend's parent with early dementia and her husband moved first to a cohousing development, thinking he could care for her with community support, then to a senior community that did not have memory care, and then ultimately they had to place the parent with dementia in a memory care home separately. That was three moves within a few years because they didn't think far enough ahead or anticipate how rapidly the dementia would deterioriate.

[Anonymous]

A place with a regular assisted living and memory care onsite can be beneficial. If you wait too long, it may be hard to get someone with more advanced dementia behaviors into a facility. And if you do a “continuing care” community, she can stay in one place but move to different levels of care onsite - for example, I used to work in a place with independent living, assisted living, assisted living memory care, nursing home and rehab all in one community.

[Anonymous]

Anonymous wrote:She will do much better if she stays in her own home and community as long as possible, with caregivers. See if there is a senior center with transportation and daily lunch and activities for her to do.

But in this scenario, it is more difficult for the OP to assess her conditions, because she cannot visit multiple times each week.

IMO, I'd move her closer to you. To an affordable place within 30-45 mins from you. Into assisted living, if she doesn't need memory care yet. But a place that has memory care, so it will be a quick, easy transition when needed.

[Anonymous]

Anonymous wrote:This is the OP. Thanks for the replies thus far. I will do some research on caregivers costs locally for comparison.

She rejected the idea of senior living near where she lives now but said she was open to moving near me.

I'm afraid to go it alone trying to manage caregivers for her long-distance while she stays in her house. (I saw another family member really struggle managing caregivers, and they lived nearby to the person they were caring for.) The push to try to get her to move is family dynamics, to be honest. There are two family members near my mom, but both are over 80. Another family member, who is not much younger, is worried that this will end up on her -- so telling me that this is my job, this needs to pass to the next generation (which is just me, an only child), etc. I told her she needed to back off and give me some time to develop a plan. But the bottom line is that family say they want to help me but the actual offer on the table seems to be to help sooner rather than later with getting her moved to senior living somewhere and then they are out of it. Since my pool to draw on for any help whatsoever is small, I am hesitant to forgo even that.

I personally would move her NOW, while she is still open to moving near you. The transition will be much easier when she wants it.

[Anonymous]

Anonymous wrote:She will do much better if she stays in her own home and community as long as possible, with caregivers. See if there is a senior center with transportation and daily lunch and activities for her to do.

This is more expensive than senior living though.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:A new place isn’t necessarily going to take someone with moderate or severe dementia, especially if the person has behavioral issues, so the place you move her may be the place you are stuck with long-term. I wouldn’t count on finding a cheaper place later. A lot of places are open to taking someone in the early stages of the disease and moving them into memory care later, but will not accept directly into memory care.

This is a very important point. The earlier she moves, the easier it will be for her to adjust. We moved my FIL into an assisted living memory care floor when he had moderate dementia and he had a very hard time because he didn't understand what was going on and had lost many basic living skills.

THIS!! Also, family members can go into denial about level of need. My mother (much younger than Dad) would not put him in a residential setting despite the fact she could not cope with him even with him going to adult daycare and having caregivers when he is home. She was losing it and we begged her to put him in residential before it was too late. She waited too long and dumbfounded no place would take him because his needs were too great even with a personal aide. She insisted he wasn't at nursing home level when he was and got rejection after rejection. Meanwhile a friend of his went to residential early on when the family saw his spouse was struggling. He is at a lovely memory care (started in assisted living) and while pretty far gone, he still enjoys the activities there and he enjoys their visits, even though he's not sure who they are.

+1 I have hired a senior care manager (in another region or i'd recommend her) near my parents to help navigate this kind of transition. She pointed out that its best to go to a continuing care facility while the senior still has assets, that the good facilities will agree to take them. If we spend down all their assets on home care first, then they won't be as able to get into a good facility, is what she told me.

[Anonymous]

I went through this with my mom. Moved her here from NY and she lives in a nice CCC about 2 miles from my house. It did take her about 18 months to adapt. It’s nice to not have to actively manage her on a daily basis or worry about snowstorms, meals, cleaning, doctors care, etc. She started in independent living and is now technically in assisted living but didn’t have to change apartments. They have memory care in a separate part of the building and it’s well managed and clean.