Where's the best place to end up if you're old with dementia?

Miscellaneous and Personal Stuff I Must Share
61

First, stop with the guilt. They made that decision to move away from you. You do not own this guilt, okay? Get comfortable with that. It’s hard as an adult child to do so but understand that they chose something other than making you responsible for them.

I’m just saying be ready for fall out. Her kids should be very ready for the emotions of what she is going through now and will go through later, once he passes. She might need some therapy, or they might need some, if she then turns her need to be a carer on them.

62

That sounds like a Continuing Care Retirement community. If so, I believe they charge a large entry fee.

63

Depends on what you’d call “large.” My mother went into one and the initial fee was $60K (USD), part of which was refundable if you left the community (or died) before 5 years.

64

That’s the lowest entry fee I’ve ever heard of. In the link below, it says “A CCRC — also known as a “life plan community” — generally requires an entrance fee of between $100,000 and $1 million. The average fee is about $300,000.”

[Cost of Continuing Care Retirement Communities (CCRCs) - What To Know]communities-what-you-should-know)

65

Where’s the best place to end up if you’re old with dementia?

I was on my way there a moment ago, had it all figured out. Just around the corner.

And then I ended up in the kitchen and forgot why I was there.

66

When come back, bring pie. From kitchen that is. Just a friendly reminder of why you were there. :wink:

67

We put my mom in a CCRC for the last 9 months of her life–zero entrance fee. It was a decent place. We got lucky in many ways, for a really shitty situation. I have a long-term care policy that is pretty generous–it was a one-time $100,000 premium when I was 45.

68

Did you pay $100,000, or did it provide $100,000 in coverage?

69

It was a one-time $100,000 payment. The monthly payout increases the longer you don’t use it–I think it’s up to $12,000/month or so, plus it has a $50,000 life insurance payout. Seemed like a good hedge to me–my wife has MS, so such insurance is impossible for her.

70

So, more detail if you’re interested–death benefit is actually $125,000. LTC benefit for the base policy is $5000/month for 25 months. Premium benefit (“continuation of benefits”) is up to $5463 for unlimited months. This is through OneAmerica. Continuation of benefits increases at 7%/year.

71

Let me see if I understand - the benefit for the base policy is $5000 per month for 25 months. Is that for nursing home, assisted living or home care or any combination of the three ? And how do you get the "continuation of benefits? - I assume it’s an additional premium but roughly how much?

72

It is for any of the 3. The continuation of benefits premium was part of the $100k, and my understanding is that this is one of the few remaining policies that don’t have a fixed amount of time that they will pay the benefit. So, if I needed LTC today, I would get $10463 for 25 months, then $5463 until I croak, at which point my wife gets $125,000. Of course the actuaries have crunched the numbers–average tenancy in LTC is way shorter than 25 months. On the other hand, my godmother was in LTC with dementia for 10 years.

73

I think a lot of it is because it creeps up rather slowly, and you may not realize what’s going on with you until it’s too late. Part of this is because apparently when you’ve got early-mid stage dementia, your brain fills in the gaps for you in an attempt to make sense of things, and you don’t really realize that what you’re perceiving as reality is actually incorrect.

An example might be that a person with dementia may misplace their wallet, and then because they remember that they always put their wallet in the top dresser drawer, and that since it’s not there, then the housekeeper must have stolen it. In reality, they just put it somewhere they didn’t remember and had no recollection whatsoever of the whole event.

My mother has dementia, and that sort of thing I describe above is unfortunately pretty common. She didn’t even realize she was having gaps in her memory for a long time, because her brain filled in the gaps. Now she’s realizing that she doesn’t remember things, and is getting sad/frustrated that more and more basic activities are getting away from her grasp- things like being aware of the passage of time, and so forth.

The problem is that when she had the capacity to make any sort of decision, she didn’t really realize she had it (and would argue that she didn’t), and now that she’s somewhat more aware, she really doesn’t have the capacity to make any decisions.

As far as the best place to land if you have dementia; I’d say somewhere that’s compassionate, familiar, and aware of how to care for someone with dementia. Home might sound good, but for the people handling the demented person’s affairs, that might be a LOT more work- they’ll have to do all the maintenance and upkeep, as well as dealing with whatever healthcare personnel involved, as well as possibly having to replace them regularly if the demented person is prone to accusing them of thievery because they forget where they put their stuff. A facility is a lot easier for the non-demented people, even if it’s marginally more familiar for the demented person.

Another thing to consider is that demented people often express a desire to be somewhere else, even when where they want to be is somewhere they were desperately unhappy. This is because they often want to actually be some other time, not a different geographical location. My mom often wants to go back to her house and live there, even though she was desperately lonely and unhappy living alone, and has many friends and a better quality of life in her retirement community. What she remembers about her house is that it was some sort of paradise with wonderful neighbors, which was absolutely not true- she’s remembering 20+ years of good neighbor events distilled into “it was great”, without any acknowledgement of the time frame that all those good memories occurred within.

74

Where’s the best place to end up if you’re old with dementia?
Wauwatosa, Wisconsin.

I visit friends’ parents there, and they’ve got a sunny café, where they serve excellent breakfasts, and they’ll make almost anything to order.

When my dad was in a home (with dementia), he’d refer to his “cabin”. It was either his regular room or the hospital room he had to go to for a bit. No, not a northwoods cabin, because sometimes he’d say “Isn’t this a wonderful cruise? And I have a private cabin with a view.”

75

If home care works out, that can be great for the person and emotionally rewarding for the family, but it is a lot of work and the family members will need to make a lot of sacrifices. If agreements are made between family members about who will make the sacrifices and promises about how they will be compensated, get the details in writing. For example, if one person goes from working full-time to part-time so that they can provide in-home care with the promise that they will get a greater share of the inheritance, get that in writing. Even if it’s just an email, make sure there’s a record of the agreement. Families will often have to make huge sacrifices of time, money, and effort to provide elder care at home. The grand promises made by family members to the people providing care are often “forgotten” when it’s time to settle the estate.

76

My father has been very aware for many years that he can’t remember things. What he does not acknowledge, and can be quite hostile about, is that the things he does remember mostly never happened. I try hard to just let it go, but he can be quite shitty with people over things they never did.

I was able to get him placed in an Assisted Living center a couple of years ago, but not yet in their memory care wing. He regularly complains about it, but, to your point, he’s completely forgotten how lonely, unhappy, and unsafe he was in his miserable and disintegrating condo.

77

You did him a huge favor, placing him there. I have a friend in Assisted Living, who moved in really to be able to spend days with his wife in the memory care unit. She passed on a couple of years ago, but he decided to stay. He doesn’t have to cook meals, or care for his home or lawn and he enjoys the other residents. He has lost some mobility since he moved in and is finding their treadmills and walking paths to be helpful. They love that he has stories galore, and always takes time to visit memory care residents who don’t have others stopping by. It comforts him, and them.

78

That sounds like my mom. She’d call me up in tears about how lonely she was, and how much she didn’t like living alone, and then once we moved her into the retirement community, it nearly instantly started with the “I want to go home” stuff, with lurid tales of how awesome her neighbors were, etc…

Which was all BS, of course. Her neighbors were awesome, if you condense all the good moments of 20+ years of living there into what she imagines it’s like NOW, which isn’t actually reality. That’s not to say her neighbors are bad, but they’re just not as super amazing as she makes them out to be.

That’s just it; she forgets all the bad stuff, and the grass is always greener elsewhere. I’m starting to think that she really just wants to be somewhen else that she remembers as less confusing and frustrating, not necessarily somewhere else geographically. And it’s heartbreaking, in that there’s not much to do to help her with that.

79

A friend’s mother reluctantly agreed she shouldn’t live alone after her husband died, so she moved into an excellent independent-living style retirement center where two of her friends already lived. Within two months, she was calling my friend crying, saying she should never have sold her house, she hated living there. My friend and her husband went to a great deal of trouble and expense to remodel their house to make a bedroom and full bath on the ground floor of their house, and she moved in with them. And after two weeks, she was miserable, missed her friends, was lonely all day, etc. The home graciously reactivated her contract and moved her back into the same unit. After close to eight months, she was unhappy again, and my friend moved her again (this was in early 2020, so in retrospect she was very happy not to have her mom in a retirement home during the pandemic lockdown). And a little less than a year later, she missed being with her friends and she found out that a man she didn’t get along with at the home had moved out. She got back in again, although she did have to go on a waiting list and move into a different apartment, and she’s been there mostly happily ever since. My friend is relieved, because once she and her husband had to go back to the office, she really didn’t feel like it was safe for her mom to be alone in the house anymore.

80

My late MIL lived her final 5 years in a nice independent living facility. At the time she moved in her mind was fine, but she had mobility problems, bad arthritis in her hands, and loneliness.

Her primary complaint when she moved in at age 91 was all the other residents were old, unlike her. Pretty quickly that morphed into all the residents were senile, unlike her. So no friends; they were almost all too mentally infirm to be friends. Familiar acquaintances and meal-time companions, yes. Friends, no.

There was no memory care facility there, and substantially none of these folks had early-stage Alzheimer’s. They were already too old for that.

But they were all increasingly deaf, slow-thinking in addition to slow-moving, and disengaged from the world. Senile dementia (dementia of old age) was a problem with everyone including Mom. Most of them seemed to lack real insight into the degree of their own deficit. But boy could they dish the dirt on how stupid Frank or Ethel had become! Just wrinkly gossipy 8yos the lot of them :wink:

To the end, Mom was watching the TV news & engaged with the world. She mostly couldn’t keep the news straight from day to day and blended bits of different events together at random but she thought she knew what was going on.

I can’t say she greatly enjoyed her time at the facility, but she said she was content enough and she recognized it was better than the available alternatives of a) being alone in her prior apartment struggling to feed & care for herself, or b) being dead.

For darn sure them feeding her balanced meals up to 3x/day perked her up a lot and took a couple years off her apparent age promptly after she moved in.