What might be the best next steps here?

[Anonymous]

ILs downsized 5 (maybe 7?) years ago. They chose not to look into an aging in place arrangement and went for a smaller house. For the first few years it was great as it was a new project (my MiL loves new projects) and they were finally living on one floor, so good for everyone's joints and mobility. About three years ago, FiL started to have some cognitive challenges and then it really unraveled over a 6 month period about two years ago. He now has a hard time following a conversation and really can't read a book or watch a film. While he doesn't appear to have the instinct to wander, he cannot be left alone. They now have someone who is with him 40 hours/week M-F.

My MiL is understandably starting to feel the strain of the caregiving burden along with household maintenance. They really do not go out to eat any more and chores that they may have shared before now all fall on her. She was perhaps the most candid about it with me earlier today. For the first time, she expressed regret about not doing a little more due diligence about their options when they downsized. I can tell she wishes someone else handled household maintenance and meals, even if she didn't always go to the common room for dinner.

But she is quite frank that she could not share a 1BR with a caregiver present all day and that even the 2 BR units feel tight to her - I gather that she has gone to look at a couple facilities, including one where they have friends. Believe one has small homes on the grounds. I get not wanting to be in a 1BR with her DH and another person all day 5 days/week.

Should they stick it out staying in their home (which may be the less expensive option over the long run - their funds are not endless) or look at possible openings in a few communities nearby where they live? She is sharp as a tack, slightly overweight, and gets around like there's no tomorrow. I have no hesitation about riding with her or having my kids do so. (DH and I stopped letting our kids ride with his dad years ago and is now moot.)

Love insights from anyone who has faced this decision themselves or have with their parents or other seniors in their lives.

Thanks!

[Anonymous]

I think in a 2BR she could spend time in the common spaces (or have her DH spend time in the common spaces) and that might make it feel more feasible.

[Anonymous]

Anonymous wrote:I think in a 2BR she could spend time in the common spaces (or have her DH spend time in the common spaces) and that might make it feel more feasible.

So joining a CCRC might be a good step, even if they moved relatively shortly ago?

[Anonymous]

How soon will FIL need assisted living? It would be a shame to make another big decision based on him and his aide only to have the situation change again.

If FIL was in assisted living, would MIL be able to handle her house? Or would she still need to downsize? Can they get a 1 BR next to each other so they are still close, but separate, and when FIL moves on to his next location, she can stay put?

[Anonymous]

I would look for a place with a supervised day program for FIL. That way he can be out of their apartment but she'll know that he is being supervised. Like if he went somewhere every morning 9-12, then had lunch, then came back and napped, she would have most of the day to spend as she chooses.

[Anonymous]

There are CCRCs that have both kinds of assisted living -traditional and memory care (locked unit) on site. They could each live in their own unit - your MIL in regular assisted living and your FIL in memory care - and they can go to activities, eat meals together, etc. The Village at Rockville is one such place, but there are many.

Actually, you mentioned that your MIL is very independent, so she could reside in an independent living apartment while your FIL is in AL. OR they can live in IL together with support services until your FIL requires a higher level of care. She can look around for a layout that would work for them.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think in a 2BR she could spend time in the common spaces (or have her DH spend time in the common spaces) and that might make it feel more feasible.

So joining a CCRC might be a good step, even if they moved relatively shortly ago?

That’s a sunk cost. Look at the situation as it is today. What are their assets, what is their income, and realistically what can they afford. If they can swing a CCRC financially, that may be the best option. Just a note that it can be a challenge when one partner is more independent than the other. That’s an issue we’re having with my aunt and uncle right now. They are in AL for his needs, and she is really not happy with it. But it’s a small facility, so there are few residents at her level. A larger facility might have been better.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I think in a 2BR she could spend time in the common spaces (or have her DH spend time in the common spaces) and that might make it feel more feasible.

So joining a CCRC might be a good step, even if they moved relatively shortly ago?

That’s a sunk cost. Look at the situation as it is today. What are their assets, what is their income, and realistically what can they afford. If they can swing a CCRC financially, that may be the best option. Just a note that it can be a challenge when one partner is more independent than the other. That’s an issue we’re having with my aunt and uncle right now. They are in AL for his needs, and she is really not happy with it. But it’s a small facility, so there are few residents at her level. A larger facility might have been better.

I would absolutely recommend a CCRC, and many large ones have independent living options that are spacious—e.g., 3 bedroom townhouses or apartments. And i cannot emphasize enough that if they can get into one, you could consider a day program onsite for the more impaired partner which could keep them in IL longer. You might not need 40 hrs of live-in care if he can be cared for safely nearby. And if he elopes or becomes a danger at home, that partner could move to memory or AL and still be relatively close by.

[Anonymous]

Yes, they need to move to a CCRC. Sometimes they can even live separately and visit if the need difference becomes vast.

I have to admit the words "sharp as a tack" are like nails on chalkboard to me. People called my dad that when it was clear as day he had Azheimers, but was still sharp in areas of knowledge obtained years ago. Also things can decline quickly after a fall or surgery so "sharp as a tack" is not that meaningful except for telling you that right now at this moment maybe she is cognitively fine and that's great, but it doesn't mean she will decline very slowly or very quickly. It just means at the present time she appears fine to you. A 10 year old who is "sharp as a tack" had many decades of high functioning without head injuries, etc. A person past a certain age, especially with weight issues (some call Alzheimers type 3 diabetes) may not be sharp as a tack that long. And yes, I have a morbidly obese aunt who stayed sharp through her 90s, but it is rare.

[Anonymous]

Anonymous wrote:Yes, they need to move to a CCRC. Sometimes they can even live separately and visit if the need difference becomes vast.

I have to admit the words "sharp as a tack" are like nails on chalkboard to me. People called my dad that when it was clear as day he had Azheimers, but was still sharp in areas of knowledge obtained years ago. Also things can decline quickly after a fall or surgery so "sharp as a tack" is not that meaningful except for telling you that right now at this moment maybe she is cognitively fine and that's great, but it doesn't mean she will decline very slowly or very quickly. It just means at the present time she appears fine to you. A 10 year old who is "sharp as a tack" had many decades of high functioning without head injuries, etc. A person past a certain age, especially with weight issues (some call Alzheimers type 3 diabetes) may not be sharp as a tack that long. And yes, I have a morbidly obese aunt who stayed sharp through her 90s, but it is rare.

OP here, both my parents are dead as is my older sibling who had a developmental disability. I also watched - along with my mother and her five siblings - quickly comprehend after their dad died that my grandma/pa were effectively one unit. Her short term recall was failing but she was as strong as an ox (to clarify, she grew up on a farm, then ran a farm till her early 80s and still gardened a quarter acre for another five years) and my grandpa had all his wits but was dying from congestive heart failure. Her decline was steep after he passed. I am acutely aware that life can turn on a dime - all to say, this is not my first rodeo, but my fifth and sixth though now not blood relatives. Given that I have been through this, however, I may have some insights that DH and his siblings do not yet have.

While my MiL is candid with me from time to time, she has shared on more than one occasion that she knows I've "been through this before." I don't think she shared anything with me that she hasn't with her children - this last convo just may have hit me differently based on the experience with my parents and sibling. It's clearly an evolving situation for her.

Based on my MiL's family history, the adults live a long time, maybe with limited mobility due to the weight (no one is morbidly obese - but are carrying around 40-50 pounds more than is good for them with not great joints [again, I know morbidly obese and this is not it]), but very sharp till their last days. My FiL is taking more after his dad than his mother, who was sharp as a tack till her last three days. His dad lived a long time with dementia due to being in great physical condition. My FiL still goes to the Y a few times a week to work out.

IDK if they have the money to be in two separate rooms/units in a CCRC or at least for a long time, at least for more than 3-5 years. DH's grandparents lived in a 2BR with aides for his grandma. His grandpa never really noticed them due to his dementia. It's the reverse with my ILs. Even in a house, my MiL spends lot of time out of it from M-F.

One of the communities seems to have some homes on site. That may be an option. They sell their current place, move into one of them, then face the circumstances with FiL when it comes to that. MiL might be more amenable for him to move to memory care if she were within walking distance to see him 2-4X/day. She would also not have maintenance and possibly could take meals with other residents.

Are there folks who help game out these scenarios?

[Anonymous]

Anonymous wrote:Yes, they need to move to a CCRC. Sometimes they can even live separately and visit if the need difference becomes vast.

I have to admit the words "sharp as a tack" are like nails on chalkboard to me. People called my dad that when it was clear as day he had Azheimers, but was still sharp in areas of knowledge obtained years ago. Also things can decline quickly after a fall or surgery so "sharp as a tack" is not that meaningful except for telling you that right now at this moment maybe she is cognitively fine and that's great, but it doesn't mean she will decline very slowly or very quickly. It just means at the present time she appears fine to you. A 10 year old who is "sharp as a tack" had many decades of high functioning without head injuries, etc. A person past a certain age, especially with weight issues (some call Alzheimers type 3 diabetes) may not be sharp as a tack that long. And yes, I have a morbidly obese aunt who stayed sharp through her 90s, but it is rare.

OP here, both my parents are dead as is my older sibling who had a developmental disability. I also watched - along with my mother and her five siblings - quickly comprehend after their dad died that my grandma/pa were effectively one unit. Her short term recall was failing but she was as strong as an ox (to clarify, she grew up on a farm, then ran a farm till her early 80s and still gardened a quarter acre for another five years) and my grandpa had all his wits but was dying from congestive heart failure. Her decline was steep after he passed. I am acutely aware that life can turn on a dime - all to say, this is not my first rodeo, but my fifth and sixth though now not blood relatives. Given that I have been through this, however, I may have some insights that DH and his siblings do not yet have.

While my MiL is candid with me from time to time, she has shared on more than one occasion that she knows I've "been through this before." I don't think she shared anything with me that she hasn't with her children - this last convo just may have hit me differently based on the experience with my parents and sibling. It's clearly an evolving situation for her.

Based on my MiL's family history, the adults live a long time, maybe with limited mobility due to the weight (no one is morbidly obese - but are carrying around 40-50 pounds more than is good for them with not great joints [again, I know morbidly obese and this is not it]), but very sharp till their last days. My FiL is taking more after his dad than his mother, who was sharp as a tack till her last three days. His dad lived a long time with dementia due to being in great physical condition. My FiL still goes to the Y a few times a week to work out.

IDK if they have the money to be in two separate rooms/units in a CCRC or at least for a long time, at least for more than 3-5 years. DH's grandparents lived in a 2BR with aides for his grandma. His grandpa never really noticed them due to his dementia. It's the reverse with my ILs. Even in a house, my MiL spends lot of time out of it from M-F.

One of the communities seems to have some homes on site. That may be an option. They sell their current place, move into one of them, then face the circumstances with FiL when it comes to that. MiL might be more amenable for him to move to memory care if she were within walking distance to see him 2-4X/day. She would also not have maintenance and possibly could take meals with other residents.

Are there folks who help game out these scenarios?

[Anonymous]

Yes, absolutely there are people who can help. I would recommend hiring an unaffiliated (with any particular provider or setting) care navigator or care coordinator, who can give recommendations on when and where to start looking. (My fam is in NY using visiting nurses of NY otherwise I’d recommend a local one). But you can lay out all of these things.

The sooner the better, as the community dwelling spouse(s) must be able to live independently with supports. Then, depending on the type of contract, it may be possible to have people split up and pay for the additional memory care or AL costs. (There are some CCRCs that have a lifecare model, where it is all-in, and an individual pays more like $750k or 1 million at buy in and then pays a fixed monthly fee that only grows by inflation. This is a good option if you know that individuals need separate levels of care and have a fixed monthly income. Although $1m is a ton of money, you really need a financial advisor or elder care advisor to game out the costs for you—in my case it was by far the best option).

I would also look for a place that has no kick out policy if assets are exhausted, and potentially also one where the AL takes Medicaid. That would be important if there’s a chance they could run out of assets.

Finally, CCRCs right in DC and right outside are expensive, as the care and COL is high. I’ve looked outside of DC a bit (e.g., Howard county, Gaithersburg, etc) and there are very well-rated CCRCs that are significantly cheaper. But they all have different payment structures—life care, 90%, 50%, etc—so have someone help you run the numbers.

[Anonymous]

We met a woman when we toured Tribute at One Loudoun (assisted living) who had moved in with her husband who had cognitive decline about five years ago. They got a two bedroom until he had to move to memory care. So he just moved to a different floor in the building and she downsized to a studio. She still has her wits about her and will spend the rest of her life there. She seems to love it and was telling us about her walks to the bookstore. If they can afford it maybe something like that for your in-laws?

[Anonymous]

Anonymous wrote:Yes, absolutely there are people who can help. I would recommend hiring an unaffiliated (with any particular provider or setting) care navigator or care coordinator, who can give recommendations on when and where to start looking. (My fam is in NY using visiting nurses of NY otherwise I’d recommend a local one). But you can lay out all of these things.

The sooner the better, as the community dwelling spouse(s) must be able to live independently with supports. Then, depending on the type of contract, it may be possible to have people split up and pay for the additional memory care or AL costs. (There are some CCRCs that have a lifecare model, where it is all-in, and an individual pays more like $750k or 1 million at buy in and then pays a fixed monthly fee that only grows by inflation. This is a good option if you know that individuals need separate levels of care and have a fixed monthly income. Although $1m is a ton of money, you really need a financial advisor or elder care advisor to game out the costs for you—in my case it was by far the best option).

I would also look for a place that has no kick out policy if assets are exhausted, and potentially also one where the AL takes Medicaid. That would be important if there’s a chance they could run out of assets.

Finally, CCRCs right in DC and right outside are expensive, as the care and COL is high. I’ve looked outside of DC a bit (e.g., Howard county, Gaithersburg, etc) and there are very well-rated CCRCs that are significantly cheaper. But they all have different payment structures—life care, 90%, 50%, etc—so have someone help you run the numbers.

TY for your thoughtful, detailed response - this is very helpful. While they are in the Midwest, this is a good guide to understand the possible variables.

While MiL loves their new home, she also enjoys company and that may be why she raised the topic with me earlier in the week. They are no longer able to go out to dinner as they used to 2-3X/week and I think she would like to "go out," even if to the common DR, especially as FiL is less social.

Thanks again.

[Anonymous]

Anonymous wrote:We met a woman when we toured Tribute at One Loudoun (assisted living) who had moved in with her husband who had cognitive decline about five years ago. They got a two bedroom until he had to move to memory care. So he just moved to a different floor in the building and she downsized to a studio. She still has her wits about her and will spend the rest of her life there. She seems to love it and was telling us about her walks to the bookstore. If they can afford it maybe something like that for your in-laws?

That's very helpful - TY for sharing. They are out of the region, but good to learn about different options.