Alzheimer’s

[Markola]

I just finished helping my 81 yo DM move to independent living within a progressive care community. My DM’s long time partner with Alzheimer’s rejected to move, however. After nearly a week of histrionics and childish behaviors, the partner’s family took them to their home 5 hours away. My DM’s high blood pressure immediately dropped to normal and she got a good night’s sleep.

We family had little idea of my DM’s daily existence in their prior condo, isolated as they were during Covid and as they lost the ability to drive. DM confided in me that her life had deteriorated to watching a little TV, reading the newspaper, and dealing with her partner’s endless needs. She felt she had no future there.

She’s in a wonderful new community now and sees a future for herself among all of these kind new residents introducing themselves as her new neighbors. She is going to the community happy hour tonight! This place is like oxygen for her.

It’s so easy for caregivers’ quality of life to go down the tubes with the patient’s decline. After giving too much of herself, my DM has found a way out for herself. I am sharing this in hope others can. Peace.

 

[tmm99]

Thank you for sharing your story, Markola. I'm sure it was not an easy decision for her to make, but I'm glad that she assessed the situation and made the best decision for her partner and herself. I am very happy for your mom.

 

[ExFlyBoy5]

Thank you for sharing, it's a personal story and I think is very useful for others to read about. Very often, care takers are merely an afterthought which is very unfortunate.

 

[braumeister]

She’s in a wonderful new community now and sees a future for herself among all of these kind new residents introducing themselves as her new neighbors. She is going to the community happy hour tonight! This place is like oxygen for her.

It was similar for my mom. I moved her into an independent living community when she was 83 and she went from "I always knew you'd put me in an institution someday." to "Why didn't you tell me about this years ago? It's wonderful here!" all in the space of about a week.

 

[pacergal]

How wonderful for your Mom.
Must give you sense of relief yourself, to see her happy and enjoying her new surroundings!

 

[audreyh1]

Wow, what a difficult situation! I’m so glad that your mother did what was best for her!

 

[Amethyst]

Wonder what the partner's family is going to do, as they are now faced with what your Mom was dealing with.

Evidently they were not married, which must have made the whole miserable business easier to deal with.

 

[Sojourner]

Thanks for sharing, OP. Just curious, how old is your DM's partner and how advanced is his Alzheimer's?

 

[Markola]

Wonder what the partner's family is going to do, as they are now faced with what your Mom was dealing with.

Evidently they were not married, which must have made the whole miserable business easier to deal with.

No, not married and that’s a blessing. Her partner’s family are capable people and will figure something out. I’m so proud of my mother for finally saying, “It is up to them from here on out. I need to take care of my health.” She’s firmly “done”.

Thanks for sharing, OP. Just curious, how old is your DM's partner and how advanced is his Alzheimer's?

Partner is 79 and we think it’s middle stage.

 

[Mr._Graybeard]

No, not married and that’s a blessing. Her partner’s family are capable people and will figure something out. I’m so proud of my mother for finally saying, “It is up to them from here on out. I need to take care of my health.” She’s firmly “done”.

Congrats to her. Dementia is a tragic thing to happen to someone you love, but you can do everything you can and it's still not enough.

 

[2HOTinPHX]

Back about 20 years ago we had a wonderful, very active older neighbor next door. He was in his 80's and still going for daily walks and enjoying gardening. He was in great physical shape for his age. He was widowed many years before we met him so he lived alone. I guess he recognized his memory wasn't quite what it used to be and he said he was getting tired of cooking for himself. He decided to sell his home and move into a retirement center near by.

We visited him a couple of times and he was very happy there. He enjoyed all the activities they offered, not having to cook for himself and dining with all the others. He made lots of friends there.They even had an outdoor patio with a slow running creek next to the hillside. A lovely tranquil place and our neighbor took us out there to show his true joy. He loved to feed the birds. All the sudden you could here ducks in the distance quacking then they all showed up for our neighbor. We were very happy he found this place.

 

[Walt34]

It was similar for my mom. I moved her into an independent living community when she was 83 and she went from "I always knew you'd put me in an institution someday." to "Why didn't you tell me about this years ago? It's wonderful here!" all in the space of about a week.

Although it was her decision from the start that was my mother's reaction as well when she moved to a CCRC. She cried when the house she'd lived in for 40+ years sold, and six weeks later said "I wish I'd done this ten years ago!"

 

[Scuba]

Although it was her decision from the start that was my mother's reaction as well when she moved to a CCRC. She cried when the house she'd lived in for 40+ years sold, and six weeks later said "I wish I'd done this ten years ago!"

Very common reaction for people who move to CCRC’s. Sadly, many less populated areas don’t have CCRC’s or even multiple care levels. My MIL, who has dementia that is not yet very advanced, would be thrilled in independent living and we would feel better that she would be safer vs living alone, but her area only offers one AL facility and one skilled nursing home. We visited the AL place and their residents are far frailer than she is. We think she would be depressed there and would likely decline quickly. There is a nice memory care place but it’s about 30 miles away from her friends and acquaintances so not a good option for her until absolutely necessary, if that day ever comes.

Her plan is to live alone as long as possible, bring care in if/when needed, and if absolutely required, move into the local SNF as a last resort. Her DH is deceased.

 

[Markola]

Congrats to her. Dementia is a tragic thing to happen to someone you love, but you can do everything you can and it's still not enough.

That’s really the long and short of it, sadly. The person you love is mostly, but not entirely, gone and it becomes a situation similar to trying to help a drowning swimmer by swimming out to them - You might very well get pulled under yourself in their frantic panic.

Residents of this progressive care facility have been sharing their own dementia caregiving stories with us this week. For all of them, there simply comes a time to get the patient into professional hands.


Thanks for all of the sympathetic comments here.

 

[Teacher Terry]

So happy for your mom! There comes a time when no one can deal at home with a dementia patient. For a older spouse it can be a death sentence with the healthier person dying while trying to care for their spouse.

 

[MarieIG]

Just read this thread.

I see the things that helped make this possible as:

A supportive son, the wherewithal to afford the progressive care community, and DM's recognition that she couldn't continue as before;

The ex-partner having a family willing to assume his care;

Their not being married allowing for a clean break.

Best wishes to Markola's DM and her former partner.

 

[Markola]

Thank you very much. Despite the disease, we have much to be thankful for, indeed.

 

[Amethyst]

I'd advise anyone to examine the terms with a fine-tooth-comb when choosing a progressive retirement place.

Recently I read about someone whose parents bought into an extremely expensive CCRC in 1999 and were in independent living. After the husband died, management became aware of the wife's encroaching dementia, after other residents complained they didn't want to sit with her at dinner any more because she couldn't follow conversations.

The couple had always assumed they could move to the dementia unit, but the family were told that no, that was for end-of-life situations.

So the family had to move poor Mom into a dedicated dementia facility, at great expense, including the cost (the exact amount wasn't stated) of breaking the original buy-in contract.

God only knows what would have happened to her if she didn't have kids looking out for her.

 

[Markola]

That stinks but I can already see how it happens.

In our case, my DM rents her space on a one year agreement, so we can get her out of there should the wonderful current conditions deteriorate. FWIW, her 800 sf+- 1 BR with all utilities, transportation, activities, fees and one meal per day is $3,450/month. If she wants to change to 2 meals/day, it’s $250 more per month. They waved all move-in fees and provided the first month free. That’s it.

We did examine the memory care community for my mother’s (former, now, sadly) partner, which is a “locked down” part of the building for their own protection. However, the partner was not a good candidate for it, because she is not as far gone as the average current class of memory care residents, and would not fit in. That was an interesting thing the staff told us - whether a person is a good candidate for a given memory care unit depends a lot on the service needs and dementia stage of rest of the residents. It’s not just money.

The former partner is also not a good candidate for the assisted living community, because she is too far gone to live by herself there without more constant help than my mother and even the staff can provide. She’s in a gray area.

Definitely, yes, research everything possible but know that there can still be service gaps, like for my mother’s former partner and the person you cited, even in pretty comprehensive progressive care facilities.

 

[Amethyst]

The horror of once again being reduced to whether one can "fit in."

One wonders what would happen if the partner had no family to step in?

Such a situation cannot be that unusual.

We did examine the memory care community for my mother’s (former, now, sadly) partner, which is a “locked down” part of the building for their own protection. However, the partner was not a good candidate for it, because she is not as far gone as the average current class of memory care residents, and would not fit in. That was an interesting thing the staff told us - whether a person is a good candidate for a given memory care unit depends a lot on the service needs and dementia stage of rest of the residents. It’s not just money.

The former partner is also not a good candidate for the assisted living community, because she is too far gone to live by herself there without more constant help than my mother and even the staff can provide. She’s in a gray area.

.

 

[Koolau]

I've seen Alzheimers from several angles. It's not a pretty sight, but it affects folks differently. Right now, we have a friend who 10 years ago was vibrant, alert, funny, and articulate. 2 years ago, we found out she was going into Alz. We could kind of see it (repeating things, for instance) but she was still "there." After our 2 years of absence (due to Covid) we saw her as a mere shell, mentally and physically. Her loving husband is taking care of her and, as Alz. goes, he's doing well. They had to move (from 2-story to 1 story - much smaller with no garden - which he loved.) I don't know where they go from here, but it will be tough even if they continue to be "lucky" with the disease.

I keep hoping that it won't happen to one (or both) of us. We don't get much choice, so we will take what comes. YMMV

 

[Bamaman]

We had to deal with a 91 year old widowed aunt with cognitive issues. She fell and couldn't get up, and it was then we realized she had been living off tuna fish and ramen noodles mostly. We moved her to an assisted living apartment in our home town where she told everyone her nephews kidnapped her and brought her to this awful place. The apartment was $2050 a month, but we had to pay another $400 monthly for medicine to be given to her as she forgot to take it.

She did well there--other than falling on her head twice picking flowers in their beautiful gardens.

After 5 years, we moved her to a huge nursing home, and she made it another 3 years there. I think it was about $7K a month, but thankfully she was fiscally sound. When visiting her at lunch, it was like a sea of blue haired women--all in wheelchairs. Few nursing home patents there walked. But she was very well taken care of and made it 3 months short of 100 years old.

 

[Koolau]

Besides runaway inflation, two-of-us-in-a-$10K/month-facility is the extent of our black swan fears. That would chew up savings very quickly. I don't include our home in our NW (invested NW, anyway) but I do view it as a back up in case we need specialized care. But, realistically, our home might get the two of us two and a half years in a "facility." Alz. care is expensive and it never gets cheaper. YMMV

 

[nwsteve]

I'd advise anyone to examine the terms with a fine-tooth-comb when choosing a progressive retirement place.

Recently I read about someone whose parents bought into an extremely expensive CCRC in 1999 and were in independent living. After the husband died, management became aware of the wife's encroaching dementia, after other residents complained they didn't want to sit with her at dinner any more because she couldn't follow conversations.

The couple had always assumed they could move to the dementia unit, but the family were told that no, that was for end-of-life situations.

So the family had to move poor Mom into a dedicated dementia facility, at great expense, including the cost (the exact amount wasn't stated) of breaking the original buy-in contract.

God only knows what would have happened to her if she didn't have kids looking out for her.

+1 Please remember if you want to avoid this scenario, the CCRC under consideration must be a Type A Life Care property. You should see in the residency agreement that language and specific proviso for no/little cost transfer to higher levels of care,
Don't let the sales folks tell you they have it unless you see it in writing.