Parents caring for the parent support thread (Part 1)

For those with parents in assisted living, apparently, technically, they cannot be prohibited from going out. I was not the only one outside with my mother. It dawned on me a few days ago that, although I complained to the ALF about families taking residents out to stores and restaurants etc.(which I hope has stopped) that that legal prohibition against controlling movements OUT (as opposed to IN) meant I could sit in the sun with my mother on the grounds (6 feet away of course).

Worth a try. This is based on their status as “tenants.”

ML, I disagree we need to leave critical decisions to the patient, when he or she only survives because of extensive support. And when there’s still a huge burden (even with 24/7) on the two daughters to jump to action.

He can just refuse to pay if he wants to be stubborn, though. Hoping it won’t come to that.

When the judgment is impaired, one can’t let the impaired person have unfettered judgment. That’s like saying your young child Can choose to walk in the middle of busy street.

It is tricky balancing the desires of SRs for autonomy while keeping them safe and having them get good, consistent care. Excellent caregivers are very tough to find.

@MaineLonghorn, if he is in charge of his own finances, he gets to call the shots. This is so scary and frustrating, I know. We dealt with this with my father. He insisted he was fine, and he didn’t meet any criteria for being mentally incapacitated, but he was making decisions that ultimately contributed to ill health and his earlier demise (at age 88, so a ripe age even if he could have lived longer.) In retrospect, if I could do it over, I think I would have argued less with him and just let him do what he wanted. The arguing was SO stressful. If he’d died 6 months earlier, it would have been on his own terms.

@calla1 thanks. At least for now he agreed to keep 24/7 care. He may have already lost complete coverage, though, because one caregiver is taking on other work. Hard to blame her.

It’s good to get your perspective. I think my sister and I are getting to that point.

Would (could?) your mom write these checks?

Thing is, sometimes, when you reach the point where there are frequent tussles to resolve, it’s draining. It helps to anticipate and be ready. But that’s draining, too.

If he truly needs help (or else it falls on your sister and maybe you,) that’s the bottom line.

My mother’s assisted living has a vomiting/diarrhea outbreak. My mother was sick for 24 hours. If this can be spread, so can COVID-19.

They are now having meals in their rooms, temporarily anyway. I think this should have been done earlier but some residents cannot tolerate being alone in their rooms.

I would bet that the packed elevator is where this was transmitted/shared. I also think they should be limiting the number of people on the elevator at a time.

I am nervous about the private nurse, who did colostomy wafer change yesterday, called me afterward and said she “hoped the bag would stay on” !!! She also said that it was easier to do it while my mother was lying down, which is in the first sentence of my instructions and absolutely essential with a hernia. She also cleaned the whole are with baby wipes, which interferes with adhesion. Ugh. I might call the supervisor because I gave them detailed instructions on paper.It’s tough because I need to have a good relationship with them too.

Hope everyone is doing okay.

My 90 yr old mom was in the process of going into assisted living right before the AL shut down with new residents because of COVID 19. She was a nurse so she’s obsessed with germs and the COVID 19 coverage. She had a caregiver that came from 8 to 4pm during the week but now is convinced her caregiver will bring Covid 19 into her house since the caregiver is at home on the weekends. The family is stuck between trying to distance ourselves since most of us have traveled recently and trying to make sure my mom is safe. My mom just announced that if her caregiver comes next week my mom will not let her in because who knows what the cg is doing on the weekends. Assisted living place just let us know last week that they’re allowing special cases to move in but now may rescind with news of residents at other AL testing positive.

The main reason we wanted her in AL is that we don’t want her cooking. She had 2 incidents where she left a pan boil dry. My brother actually turned off the gas to her range so she can’t use it. She can still use the microwave and oven. We’re taking turns bringing her food and such.

We’re torn because we want her to be safe but also don’t want her exposed at the AL place. Originally she had no problem with going to AL but now with the news of cases she may not want to go anyway. I feel my blood pressure getting higher just thinking about the situation.

Honestly I don’t blame her for being nervous about the caregiver. Can the caregiver reassure her in any way, for instance, showering and wearing clean clothes, gloves and mask, maybe something she can put over her clothes (gowns are in short supply but some other covering)?

Can she do without the visiting caregiver? Is there technology you could use to keep an eye on her? Just brainstorming because your situation sounds difficult.

Staying in her room at an AL might be safe and acceptable to the facility-?

@compmom We installed ring cameras in her kitchen and living room just to keep an eye on her especially during the weekend. No matter how much we try talking to my mom she believes her caregiver is a harbinger of germs and Covid. The siblings and I are still waiting to get some answers on a possible move in. I think she might be safer from Covid at home now that there more cases at other AL throughout the city

I like that our AL is screening aides, and they are not wearing masks. Meals are either 6 feet apart or in rooms. I would worry about an aide coming into the house as well, I think.

Honestly, anyone can harbor a trove of germs. Some recent interview suggested 80% of us could test positive, but a huge proportion are asymptomatic. So symptoms can’t be the magic definer.

And even if we test negative, (not that we’d get a test, without bad symptoms,) who knows what we could pick up since the test.

So, imo, the distinction isn’t symptoms. It’s more how much the patient needs help, from you or a carer, or needs social interaction. Same for us as any aide.

Well, my parents are a perfect example of what a caregiver can bring into the house. She has tested positive for strep. If she still has a fever on Thursday they will test her for the virus.

It’s my parents’ 59th wedding anniversary today. A month ago, I didn’t think they would be celebrating it together.

Happy anniversary to your parents @MaineLonghorn. Yeah for strep! Hopefully that’s all it is.

My heart goes out to all of you who are caring for your loved ones through this virus. It’s hard enough in normal times.

I am very grateful my older sis is having mom sleep with her and her H — she spends the day with different folks but at least sleeps in same room and bed every night. She was getting very confused with different bed every nite.

Yesterday we had her spend the day with us. She helped us looking over some of the cards folks sent/gave for funeral, helped us stuff and alphabetize the thank you notes.

She even went for a short drive with the kids from our place to my brother’s place to get their envelopes and the cards they opened.

We also walked around the block once—between rain showers. D made a yummy curry dinner for us all to enjoy.

Just got off the phone with my mother. I think residents of retirement communities and AL facilities are going to start dying of loneliness. It will say something else on the death certificates, but this isolation is toxic.

@MomofJandL it does make me wonder if prolonged life is worth the pain of isolation!

^^^ The impact of isolation is on my mind a lot. My mother lives independently in her apartment and has always kept to herself anyway. But the fact that this is necessary makes everything feel different. Our usual routine was a ten- or fifteen-minute daily phone call. I’ve bumped it up to around thirty or forty minutes. I’m trying to keep the constraint of her situation from taking a toll.

@MomofJandL I have wondered that too. A friend who is in admin at a senior community told me they put 3 residence in hospice this week. She felt sure they took a turn due to all the isolation and lack of interaction.

I also wonder about quality of life versus quantity of life (for my parents, who are in their mid 80s and have survived several major health issues already). A big part of me says “let them enjoy their time!” But I would never want to endanger the staff so there’s really no good solution.