Coronavirus May 2020 - Observations, information, discussion

Parent Cafe
4041

@emilybee — just curious: have you ever been responsible for the care of a octogenarian? A stroke victim? A person with dementia? Your posts come across as being from someone who has never walked in the shoes of a caregiver.

It is profoundly challenging to care for a disabled elderly parent when you can physically be with them. It is gut-wrenchingly impossible when you can’t. All the tech in the world doesn’t change that.

My parents are in their 80’s, married 56 years. Both with advanced degrees from fancy pants universities and some of the smartest, most decent people you will ever meet. Both self-made and fiercely independent. Combined they have two desktops, three tablets and two smart phones. Plus Alexa throughout the house. They have a caregiver during the day 6 days a week.

Dad is severely disabled, probably has Parkinson’s. Mom had a stroke last year that took away her ability to do serial tasks, short term memory, word call and makes her fragile emotionally. They joke that they combined equal one functional human. When dad falls, and he does fall, mom can’t get him off the floor.

They cannot for the life of them figure out how to do a telemedicine call. Or even start a facetime call. Heaven help them if they want an Uber. And it isn’t for lack of trying. I had set up all of their bills on autopay, but mom couldn’t track them, which caused her so much stress I disabled it. She tried to order groceries online, something that a year ago she could have easily done, and it brought her to tears (the caregiver can drive her to the grocery store, but that leaves dad unattended). They can’t understand why they can’t go to church. A neighbor berated my dad when he tried to “walk” outside (with a walker, dragging a foot - because he is hell bent on getting exercise when a lesser mortal would be bedridden) for not wearing a mask.

And they are the lucky ones. They actually have great healthcare, in home care, family that loves them and technology at their fingertips. On paper they should be weathering this fine. They are not.

I have not visited them since the middle of March, when I used to be there every Sunday to cook dinner for them. My brothers haven’t either. I called them yesterday and my dad begged to see his grandkid to help him with changing some lightbulbs. My mom was practically howling in the background “we’re SO LONELY!!!” So yeah, we are going to see them tomorrow. Helps the decision that DH just tested negative.

I can’t imagine how hard this would be if they had spotty internet or no in home care. Or they didn’t have each other. So @emilybee - you’re the solutions gal. What do you suggest? I am all ears. Anyone else wanting to weigh in is welcome.

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@CateCAParent I’d do what you’re doing: I’d combine households with my parents, either logically or physically. I probably wouldn’t have the whole family visit them, but one child and their household would link up with them to be one household (perhaps living in two houses). Some call this a bubble. I’d be super-careful, because as you know they’re at great risk.

If I were you I’d be a lot more worried about my parents getting covid from their caregiver than from you.

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What does “isolate the elderly to the extent that we can” mean?

They are pretty darned isolated already. Even pre-C19.

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@CateCAParent

I am just about ready to go to bed and I doubt you really want to hear what I have to say, regarding your parents situation. But, if you sincerely want to know - pm me and I will respond tomorrow.

And, I have gone through similar with my father and both my in-laws. Fortunately, my mother, who will be 91 in a few weeks, is both mentally and physically 100%. She also is computer literate. She also drives. She misses her friends, her card games, going to dinner and the movies, getting her hair and nails done - but knows this is they way it has to be for now. She hasn’t even seen her boyfriend.

Both her kids, all her grandchildren and great grandchild live 1000’s of miles from her.

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.

Or quaranteams.

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Has anyone else been looking at those snippets on tomorrow’s New York Times front page? I skim through, imagining each person.

Helen Kifkis, 91, Chicago, known for her Greek chicken and stuffed peppers

Harley E. Acker, 79, Troupsburg, NY, discovered his true calling when he started driving a school bus

Stuart Cohen, 73, New York City, Brooklyn cabbie who found a home in Buddhism

Clark Osojknicki, 56, Stillwater, Minn, well known in the world of dog agility training

Mary Roman, 84, Norwalk, Conn, shot-put champion and fixture in local politics

RIP, Helen Kifkis, Harley Acker, Stuart Cohen, Clark Osojknicki, Mary Roman, and the other 100,000. Not just names. They were us.

4047

When my mother was suffering from mild dementia she could still read books and talk about them intelligently, but she could not deal with any of the systems for organizing taking all her pills and believe me we tried them all! She was fine with her laptop. When it died, my SIL thought it would be much easier for her to deal with an I-pad, but she could not make the transition. And of course a new lap top would come with some new version of Windows she also could no longer learn. I can’t imagine dealing with all of that and Covid19 with her.

4048

My parents had a very hard time with tech. Dad died at 95 and mom is still hanging on at 91.5. At this point, mom needs someone minding her 24/7. We have taken to having her sleep at one sister’s house and then spend the day until after dinner with different family members. We all try to be as careful as we can and our state has very low infection rate.

My mom absolutely cannot care for herself or deal with a cell phone or any tech. She has varying amounts of dementia (depends on the day) and can’t hear well and is easily confused. Her advanced degree and dad’s professional degrees didn’t make dementia any kinder to them. Our current solution is not ideal but it’s the best we could all manage and mom feels loved and cared for.

None of us take mom shopping or out in public other than driving in a car to go from our home to sister’s home. We walk outdoors around neighborhoods and every once in awhile other places outdoors where there’s lots Of social distancing.

It is very challenging but I believe it’s the best we can do for now. She would feel utterly deserted if she were in her SR living place—no visitors, including no family!

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@“Cardinal Fang” -Thank you for your thoughts. I love the bubble (Quaranteam!!) concept. I have a colleague I do that with. We split time in the office and have a wee bit of overlap to touch base. I know how strict she is and she is an awesome social distancer. She is high risk, and gets it. She is pretty much my only regular in person contact outside of my family right now.

I am by far the biggest risk of infection of my family unit. I do all of the errands and go to my ghost town of an office. DH is disabled and can’t go anywhere alone AND as of a test taken Thursday is negative. and 16 yo DS has left the house (other than for exercise or to practice driving with me) exactly twice. Both times with me and with a mask. Once was today to give blood :heart:. So I have no problem bringing them along. Kiddo will work on their tech and change some lightbulbs. DH is good at cheering my dad up. I will have mother daughter time.

At this point the mental health angle is far more concerning to my parents, my brothers and I, than the physical health risk. If we are all on that same page together than I am all for the bubble. My parents are definitely set on staying in their home to the bitter end, and have always been willing to accept the risks associated with living independently. It comes as no surprise that they extend that reasoning to C19. My brothers and I are together on supporting their definition of quality of life and calculated risk taking. My only reservation is that I don’t know if I could live with myself if I transmitted C19 to them.

I am worried about the caregiver. But at least it is the same person every day. The agency has a daily screening protocol and they limit the caregivers to one placement. It is a necessary evil.

The notion of this Isolation lasting a year plus - a good chunk of the rest of their functional lives - is cruel. It is so much worse for those with dementia in facilities. There has to be a better way.

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@emilybee - I dm’d you. Despite what you might think, I do care what you have to say.

If you sensed snark in my post, it was only because it frustrates the heck out of me when the conversations head south into a tit for tat “I’m smarter than you vibe”. Serves no purpose. I am putting my family situation out there for public consideration solely in the spirit of we are all struggling with this in one form or another. Focusing on specifics, respectfully and with sincerity, I think helps. And I don’t just mean helps me.

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@HImom - it sounds like your family is doing great with your mom in a very difficult situation.

I wish we could bring my parents here, but not only would they refuse, realistically we are not set up for my father’s many physical challenges.

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We are fortunate that there are 7 of us offspring and all pitch in as much as we can. If there were fewer of us or folks were unable/unwilling to help, it would be much harder. Mom is physically frail but can still walk and get around, which is helpful.

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I have 3 other siblings, but spread out around the states. I am the only one within driving distance of my mom. They try to help out with various things, but expect me to visit my mom and keep her company. I don’t mind it except for the fact that they expect it. Even when we go on vacations they would want me to look after my mom.

I took my mom to grocery shop yesterday. It was the first time I have been in a large grocery store in a while. They limited number of people in the store, everyone wore mask, but people still came pretty close of each other. I thought the shelves were kind of bare, but my mom said it was fuller than usual. They still didn’t hand sanitizer or wipes, whereas I was able to get them in NYC (I brought some out for her).

I do think we will have a second wave, but hopefully we will know better what to do or not to do. We’ve learned a lot from the first wave, including how to treat covid patients, hopefully we will put those lessons to good use.

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Since my dad insists on doing some dumb things, such as letting an old friend who lives in a retirement facility come for a visit (!!!), my sister has told him she will only come to his house when absolutely necessary. I know it’s hard on both of them and my mom but gee, Dad, didn’t you teach us that actions have consequences? Argh, for a brilliant man he can be so dense. At least he promised not to send me any more “information” (I.e. nonsense) about the virus.

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There WILL be a second wave because our failure to stop the virus when we had a chance. If the whole world had acted in lockstep in February, we’d have stopped it on this planet. If all the states in the US had acted in lockstep in March, we’d have stopped it here in the US. But we didn’t. As the summer season approaches in the Northern Hemisphere, coronnavirus epicenter is moving to the Southern Hemisphere (in countries such as Brazil) as expected. The virus will be back, unfortunately, as the human races fail to act collectively because of our individual self-interest. Our disunity, or at least the failure to act collectively, is the best friend of the virus.

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Pre-C19? Not in our culture. Elderly parents live alone, surrounded by family, until they cannot care for themselves. Then they move in with one of their children, often after one parent has died. A nursing care facility is only an extreme last resort, only in the most untenable of situations. I had 11 great-uncles and -aunts, each one survived into their 80s, and most into their mid-90s (3 are still alive). Only 2 ever spent any significant time in a nursing home/LTCF and both came home to die. My wife’s family has had similar experiences, same longevity but not quite the sheer number of relatives.

I read your comments on caring for your parents. I feel for you, and understand what you are going through because we face this every day ourselves. Although we are out and about every single day - and have been for the past two months - we do not take ridiculous chances, and our regimen has worked for decades to protect us from disease. Our elderly parents in Florida (early- to mid-90s) live on their own with substantial help from their children and a part time caregiver (private pay - not arranged through an agency). Early on, we made the decision that their quality of life at this point is worth far more than the quantity remaining, a judgment with which they agreed. So, within reason, we have been visiting with them throughout the “lockdown,” shopping for them, taking them on drives, cooking and eating with them at least once a week, etc. Their other children are more or less doing the same. It is still tough on them, because they are used to even more family contact, but I shudder to think what life would have been like for them had they had no contact.

There are no easy answers for a disease like this. Everyone needs to make her own assessment of the relative risks. We judge that the compound risks of our contracting C19 here in Palm Beach County, and then passing it on to our inlaws, and then their having bad outcomes, to be low enough that we are comfortable with our approach. YMMV, but as I said I do feel for what you are going through!

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Several posters here assume that it is possible to care for an elderly person by “combining households” or having elderly parents move in. Just want to say that not all of us live in houses or even apartments large enough to take in an elderly parent. Many of us daughters are older ourselves and live in small spaces.

My mother, who is locked down in a facility, calls me every night asking to live with me. It breaks my heart. I have called real estate agents but it’s just not possible right now to look at places, buy furniture, and set up another household. And if and when this is over she will be happy in the facility again.

Luckily, since she has dementia, I can tell her I am looking at places for us, and she goes to sleep happy, then forgets about it for the next day.

Also want to go back to one of my posts that @Cardinal Fang responded to way back. I did not write clearly. I am in favor of masks as very possibly a huge help in all this. The main purpose is, however, to protect others. If we want to protect ourselves in a store, for instance, in addition to protecting others, we need more protection. I have bought carbon filters for my masks. I am also considering goggles or tight-fitting sunglasses since we all forget that eyes are an entrance point for the virus. I will say that when in an environment where everyone is masked, I feel a whole lot safer and the need for self-protection is less.

I just dip into this thread. There is a lot of tension here that makes me uncomfortable. I still miss the informational @doschicos thread.

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Yes. It’s easy to say what should happen, but how many are really willing to be the ones who take the parent(s) in? Besides not having enough (or the appropriate) space, 30 - 40% of caregivers of elders with dementia die before the elders. It can be a huge stress on the caregiver. The happy family all chipping in narrative is often a myth. Often it is just one child (usually a daughter) who becomes the caregiver. The others don’t really know what it’s like, because they are pretty much out of sight out of mind in regards to the caregiving situation.

Yes, there is so much tension on this thread, and it’s usually the same few posters who are responsible for it. I’m curious as to @CCadmin_Jon 's thoughts on this.

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Yes, my dad still requires 24/7 care. It’s been over 13 months since his disastrous heart surgery. The ONLY reason he is not in a retirement facility is that he made enough money he can pay for private caregivers. He has LTC insurance that pays for part of it, but he is still paying many thousands of dollars a month just for the care. My sister works two jobs and is barely holding on herself. I live 2,500 miles away. So we will be considered horrible children when the time comes for my folks to move to a really nice retirement facility right down the road from where they currently live? Sorry, that’s insulting. People have no right to judge others in this regard.

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@OneMoreToGo2021 - I WISH my parents would let one of the kids take them in. We tried - begged - during the Cal wild fires to have them stay with us. Nope. My brother could take them full time. They are having none of it. This is driven by them choosing to live independently and “our culture” to honor their choices. They moved into a house 12 years ago that they could age into gracefully (no stairs, etc). Their plan worked fine until now.

After one of them passes (assuming the other could survive the blow), the other may be willing to move in with one of the kids. Don’t know.

There is no dispute among any of us, including my parents, that every last dime of their money is spent on them.

I would caution you about making assumptions about how much or little “our culture” cares about family compared to “your culture”. My parents happily took my grandmother in (moved her from England) when I was a teen. My father’s parents would live with us for months at a time every year (to escape east coast winters). It is “our culture” to take care of our elders, too.

We all (most of us anyway) love our parents equally and it isn’t a question of who loves their parents more. I think we are agreeing that the nursing home model already creates dangerous loneliness, especially now. There is a lot wrong with the system. But there are so so so many people who do not have viable alternatives. To suggest that it is the children’s fault their parents are suffering now because they haven’t tried hard enough is like salt in the wounds. I don’t think that is your intention, but people are very sensitive right now.

I didn’t see your response to my question about what additional isolation we should be imposing on our elders in a second wave.