When I Get Old ...

[Yppej]

I remember my mother always saying, "I don't want to be a burden on anyone. When I get old put me in a nice assisted living facility. I don't want to be like my mother living alone unsafely." (My grandma had ministrokes and would fall and it would be hours before her sister who lived next door would come to check on her and find her.)

Now mom acknowledges she is losing her mind "like my mother did" but says as long as she can still recognize my dad she wants to go on as is, and if she gets to the point where she doesn't know him she wants to die. No mention of any other living options. She is on Eliquis to try to prevent the strokes, but it would not surprise me if she has had some - unexplained fainting or weakness episodes etc.

I think she is already a danger to herself. She could not remember why she doesn't eat gluten so had some and it made her sick. She has had celiac disease for something like 20 years. A facility would know her allergens and control her diet.

After this episode I called my brother who lives with/off my parents. He did not answer so I left him a message about my concerns, including that she sometimes goes walking by herself and what if she can't remember how to get home. He never called me back. The situation works for him. She also goes driving sometimes by herself. She refuses to let me go for groceries or anything for her. Going shopping is recreation for her. My brother refuses to get a driver's license, so she "has to" get the food for him as well as herself and my dad, though usually dad helps her with that. I got them a freezer so they don't have to go out so often with covid but she says she "has to" in order to get fresh salad greens because my brother likes them.

She also mentioned recently which she never has before if my father dies before she does she will take out a reverse mortgage so she can afford to keep living in the house. I don't know if my brother is encouraging this idea or not. A neighbor of hers got such a mortgage.

Is this the way it is with everyone, that their younger promises to go gracefully into dependent living situations disappear when the need actually arises?

[iris lilies]

Yes, pretty much.

I have friends 80+ years old in 2 households who sold their big old houses while in their early-mid 70’s and bought condos. They are active in the community, and one couple travels out of the country at least twice a year while also taking many in-country trips. Exchanged spending money on the big house for spending money on nice travel. They are great role models for DH and me. They bought two condos Dash one largest one for the two of them, and then a smaller one for one one of them dies. It is an elevator building.

But they are a small minority. Mainly, I see decay-in-place as the norm.

In my neighborhood to be proactive there are several steps “down” : first, get rid of 3-4 story living in a 150-year-old house. The ones who do that and who want to stay in our neighborhood either do massive conversions to their Victorian house to have everything on one floor, or they build new which is not easy to do because there’s precious few lots left anymore. Or, they buy a condo, but the nice ones are all $300,000 plus those are changing hands without even going on the market since all my peers are thinking of the next stage.

Then, after independent living in a downsized place in the neighborhood, assisted-living is next but there’s nothing here that does that Although there are a couple places within the city.

[Teacher Terry]

Unfortunately unless you have a lot of money you don’t end up in a nice independent living facility but a adequate or even a shitty place that frequently smells like urine. You share a small room with a stranger. Spend some time in a place that most can afford. Even people with dementia go from being happy at home to miserable in a facility. They also go downhill fast once put into a institution. Adults have the right not to be safe. They aren’t children.

My mom chose to stay home until a week before she died. She had cancer and forgot to put her cellphone in her robe pocket. She fell and laid in her waste for 18 hours until her sister who lived across the hall checked on her. None of us lived near her. We respected her choice and she didn’t regret it. For the last 3 years of her life I took all my vacation and sick leave to stay with her when needed. My older siblings were retired and would go help. My mom cared for my dad at home for 14 years with my help. When his care became too much he was going to a nursing home. He asked on a Wednesday what day he was going and told Monday. He died on Friday despite not being terminal.

Your brother should get a driver’s license and start earning his keep by helping your parents. With dementia the day will come when there’s no choice except for your mom to go to a home. I hope your brother starts helping so your dad doesn’t kill himself from trying to take care of your mom.

[Simplemind]

They don't know what they don't know. I'm sure you have read a lot of posts from those of us that have taken care of parents with dementia. Now is the time to make a move to get your parents health and financial needs in order. I don't know if your dad is still OK but your mom is at the dangerous point. She should not be driving. Not just because she is getting lost but because her judgement is failing believe me, they also loose track of what the correct speed is and what the color of the lights mean. My mom told me she walked out of Safeway into winter and wasn't dressed properly, that it had been summer when she left the house in capris and a T-shirt. She left her purse in the cart with the groceries in the parking lot and sped home. If you and your dad don't feel comfortable taking the keys away, her doctor can get her license taken through DMV after he does an assessment on her (with you and your dad present) and hears what has been going on. In my mom's case, dad got a new car and it was to techy for her to figure out so she stopped. With my dad I had to take the car and sell it because after taking the keys and him hotwiring it anyway...... I couldn't sleep with it in his driveway. My dad also wandered and did get lost over night. We had a bracelet made for him (that he couldn't take off) that had his name and address/phone on it. You are going to need a financial and medical POA for both of them. Sounds like your brother has it made as long as somebody is taking care of him. Not certain how responsible he would be as a caregiver on site. Some hard family conversations need to be had ASAP. I'm thankful my folks got their Trust and other paperwork in place before they both got dementia because once they got it, logic and remembering conversations and agreements went right out the window.

[Yppej]

My dad is with it mentally but conflict avoidant. My mother hit a car once and didn't even realize she did. This was a couple years ago and neither the police nor my dad did anything to get her to stop driving.

It is hard to talk to my dad because my mother eavesdrops and complains, "Are you talking about me?" I can't talk in a low voice because he is so hard of hearing. I wrote him once and she opened and read his mail.

My brother says he will not get a license because he wants to be green, as if letting other people drive for you is somehow better. He does help with house repairs and yardwork.

ETA My parents looked into a trust once but did not have enough in assets to justify setting one up.

[Yppej]

I spoke to my dad this morning. He is not concerned. I offered to help again and he said they may take me up on the offer in the future but don't need assistance now. He is more concerned about my mother trying to lift heavy things than about her mental condition. He did say my brother who lives with them has considered getting a license. I guess I have done what I can do with them. Only other option would be to go to their doctor.

[iris lilies]

I think Teacher Terry’s words are important: Adults have the right to not be safe. They aren’t children.

[Teacher Terry]

It’s actually really different working in adult protective services versus children because of the rights adults have. It does sound like she shouldn’t be driving. My dad loved to drive but as his health declined in his early 50’s my mom learned to drive because she knew she would need to. At 59 he came home from the hospital after having a big stroke. He took his driver’s license and crumpled it and threw it across the room saying “I will never drive again.” That’s one reason I wanted to be downtown where I can walk everywhere. I will not be stubborn about driving. If I get unsafe I will quit. I am so glad that we now have Uber.

[SteveinMN]

Tales of two mothers:

DW's mother lived by herself for decades. Never much into moving around, eventually her physical decline got to where she felt most comfortable sleeping and spending the day in her lift chair, getting up only for bathroom breaks and to get food, occasionally clean her place, etc. We knew she was frail, but DW also subscribes to they "adults have rights too" school, so things stayed the way they were. We noticed that she did so much better when she was around others -- she was more active, she ate better, her mood improved. So we started floating the idea of getting on a waiting list for a good assisted living facility but it was never time. She knew her place, she liked being able to putter without the limits of other people being around, and it was working okay for her.

Some years after that, MiL finally tired of falling and having to use her life-alert device to summon the fire department to pick her up and she agreed to move into assisted living. She was fine there but lockdown was hard on her -- the same social aspect that attracted her to assisted living was gone, with no access to the hallway or to visitors and meals brought to her. Then MiL started falling again and eventually damaged enough to warrant hospital visits. After shuttling around through hospitals and TCU, she's now in a long-term care facility and seems happy and settled. This place has been pretty flexible about assigning essential caregiver status, so she has a few people who can visit in person and she's on the first floor so it's easy for the grandkids and great grandkids to come by and chat out the window until inside visits can be arranged. A success story, in part, we think, because MiL had the money to get to a good place first.

My mom has been caring for my brother for 20+ years now. I'm convinced taking care of him (with many hours of PCA help and occasional hours from us kids) and her dog is what gets her up and moving every morning. She's in much better physical shape than MiL despite being in her late 80s in a family not known for longevity. We can see signs of mental decline -- she'll often ask me or my sister to look at something in the mail because it looks "official" only to find it's a sales pitch. Like many people her age, things like ATMs and self-checkouts befuddle her; she's fine with them until something goes wrong and then she has no idea how to fix it.

Yesterday I had to visit the house to clear a drain clog and the place smelled enough like gas that at first I would not have switched on anything electrical. Mom's nose isn't what it used to be so she apparently (I hope?) didn't realize how strong the gas was. I asked about it and she said that one of the stove burners wouldn't light. I opened a few windows to air the place out. The others had pots cooking on them, so after a while I tried the one and the igniter was slow, but it didn't take forever to light. So I don't know. I suppose as we see events like this happen more often, we need to suggest a change in the living arrangements. She has been resolute about not accepting any kind of help from outside the family; we had to talk her out of using her "lil pup" snowblower and we have been trying for years to have her let a cleaning service into the house to clean the cobwebs from the ceiling and the dust from the ceiling fans that she admittedly can no longer reach, but she won't go for it. She's insistent that she can do things independently -- and sometimes she can -- but her batting percentage has been going down steadily iykwim.

Long story short is that we're all pretty adaptable, including the adoption of habits that we didn't think we'd ever adopt, if it lets us continue down a path that is comfortable for us. MiL didn't need the life-alert device -- until she did. My mom refused a walker for years, choosing to suffer in pain while she went shopping, and finally capitulated when she realized life was better with it than it was without it, even if it didn't fit into her mind's eye picture of herself. I think all we can do is watch and maybe be more cognizant of our behavior when we get to those crossroads.

[catherine]

I feel like that we as a society have done a pretty good job reducing incidences of fatal MI and stroke, but then we're left with the slow fade to death. I don't wish for any kind of death at this point, but at the right time I would love to make it quick--for myself and my family.