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My 78 year old dad lives with severe COPD halfway across the country from me. I always try and see him twice a year, but because of Covid lockdown and travel restrictions, I hadn't seen him for nearly two years. As soon as we were both vaccinated I came for a visit in the summer and to my dismay found him severely malnourished, frail, and barely hanging on. While I planned to be here a couple of weeks, I've stayed for 2 months so far essentially providing round-the-clock care while my partner holds down the fort at home. He's doing a little better; others have commented that he's getting some colour back in his face and has a bit of his old spark back. I can't even quantify how many things I've done since being here to try and help him live more comfortably. Lots of Dr's appointments, a house overhaul, day and nighttime care, searching for and applying to support services, etc. He doesn't qualify for home oxygen at this point and manages his symptoms with a combination of puffers and rest.


He copes okay during the day, but night time he's extremely weak. He has these incidents of breathlessness from getting up to go to the bathroom that I find totally traumatic. (Of course it's worse for him as the one experiencing it.) When they happen I get really clear in my mind that it's time for him to go into long-term care, but at this point that isn't what he wants.


Our most recent plan has been to hire home care to come in in the evenings to cook him dinner, tidy up, and help him get ready for bed. But it's become clear to me that that's not enough and he needs more care. Unfortunately, the local nursing home is in the middle of a Covid outbreak because of an unvaccinated worker (don't even get me started on that), and 5 residents have died. I can't send him there. But my mental health is starting to deteriorate being his 24-hr caregiver, and while he's open to hiring someone, we live in a rural area where there just doesn't seem to be many options so I haven't found an in-home solution yet. Not to mention I have a life and family at home. They are super supportive, but it's hard to be apart. Oh, and I work too. Or at least try to! But it hasn't been happening much lately.


I guess what I'd love to hear about is your experiences with making the decision to move a loved one into long-term care, especially during the pandemic. (He's connected to all kinds of services related to his disease so I don't really need advice on that.) Thank you in advance!

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Having been a nurse and a patient in nursing homes and even hospitals, the COVID lockdowns make it impossible to visit most places & my niece who works in a hospital says that once someone is admitted, they die alone with no one allowed to see their loved ones. The nighttime problems sound like my dad who has COPD, Congestive Heart Failure, Type 2 diabetes & stage 3 kidney disease. On top of that, he's 91 & has advanced ALZ. Starting around 3pm to dalight, he is "sundowning". Angry, confused, helpless, paranoid, hallucinations... he wakes me every cpl hrs for some insane reason. Once I found him naked except a diaper saying someone broke into his room, stole his clothes & are waiting for him to come back so they can kill him. Others is he has to go to work or teach someone to fly (he used to in the 70's) or call me at 4AM to say he took the car somewhere but doesn't know where he is & I need to come find him... FROM THE LIVING ROOM CHAIR!!! Always original. What may help you is to find an elderly, healthy "friend" or student, possibilities are endless (maybe through a church or someone who's trustworthy, not always a church!) whom, for whatever reason, has lost their home and would be happy to care for him in exchange for room/board, a car to drive(?), a small salary. A livein "roommate"and new best friend who treats him well & has the patience to handle the sundowning, which I call, boy who cried wolf, caz of a daytime ability for most self care, except meal prep or need of laundry, shopping, etc but turns 100% helpless between 3pm and sunup. I have a live in for my dad for room/board & he pays for car insurance but not car & she pays for groceries too. He gives her $300/wk & thinks he is extremely generous!!! I do expect that when he's gone, that she has EARNED the house and THEN SOME!!! She needed a place to live, is a born caregiver and AWESOME to him. He says he couldn't get by. Without her and he's right. They need each other for different reasons and it has been beautiful for almost 6 yrs. She has grown to care for him and love him like a devoted daughter & while I expect her to be able to take over hse pymnts, (not pd for) IF SHE WANTS TO, my brothers and I will be happy to let her stay there AND it relieves my 4 brothers and I of the responsibility of a property we don't need or want. Hope you find your dad's new best friend...
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Your feedback helps me a lot, A very meaningful event, I hope everything will go well
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You write that doesn’t want long term care and you are concerned about a Covid outbreak in a facility anyway.

At the same time, you have done a great job getting your dad stabilized at home.

Why not let him choose for now and see how things go? Isn’t that what you would want in his position?

You can move to a higher level of care later, but if you make this change now, it is nearly impossible to switch back if he is extremely unhappy.
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First, it is admirable that you have stepped in and are taking care of the situation. I know how hard it must be; heck, my mother lived only 25 minutes away but during covid total lock down, I could only see her every 2 weeks for about 2 hours total - and even in that short amount of time, she and her living environment changed whereby I would have to get busy!

I, personally, wouldn't recommend relocating your entire family. The situation with your dad can linger on for months, and even years. How long would you be in the 'relocate' environment, and would it be fair to the rest of the family? Your dad needs help. Given the remote location, finding home health aides/care can be challenging...heck, it is challenging enough to find good home health help living in a major metropolitan city! Unless you can find someone who will actually live there, but then that opens other cans of concerns and issues.

You say the nearest facility is in lockdown. You may have to temporarily reconsider a facility a little further away from his immediate home location. Just to 'get started'. He may not want to go, but if you have POA, it might be a uncomfortable decision you may have to make for him. I spent the last 10 years of my mother's life (she passed away in June at age 95) being a total role reversal. And prior to her passing, I had to make the decisions whether she would/could stay in her home (the answer was no and her home wasn't set up for a full time live in (they require their own bedroom and bathrooms - and mother only had 1 bedroom 1 bath condo). Whether your dad needs nursing home or an adult family home needs to be decided...don't know if he could do the assisted living given his medical needs?

I don't know how rural you are, but you don't have to go it alone, and you could seek the services of a senior placement - i.e., like CarePatrol (I used them and prefer them over other services). They can help you with your searches and also consider the financial situation. They helped me place my mother - they did the intake, narrowed down the choices based on needs/finances. But you may have to start out with a facility that isn't totally 'ideal' for whatever reason but it is a start, and would give you the opportunity to step away and take a breather which, based on what you have been doing most recently, you definitively need - everyone does when it comes to caregiving.
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My mom is in Memory Care. She initially moved into regular Assisted Living two weeks before the big lockdown in March 2020. So our entire experience has been during covid. They are not locked down anymore and have slowly added back more activities, with some modifications.

But that doesn't mean I'm not involved. I do visit regularly, of course. But there are other things that are involved. Falls happen, and you'll be contacted. Mom had to go to the hospital, I needed to be there, as with her dementia she couldn't be alone. There are care meetings, I bring supplies, and some special snacks for her. It would be very difficult emotionally and logistically to deal with this across the country.

That being said, the staff and residents are all vaccinated. There have been a few mini lockdowns for a week when there has been a staff member (no residents!) with a case. But even in those cases, I have been able to visit her masked in an outside area.

My mom has qualified for hospice, which gets her a visit from a nurse weekly, a social worker and Chaplin monthly, and a aide who comes daily to help with dressing and bathing. A doctor also visits monthly. So far that's been great, and it gets extra eyes on her. The nurse always calls me when she visits.

Assuming you have jobs and enjoy where you live don't uproot your family. No one knows the future, and your Dad is not young and has some difficult health problems. You could move there, and if he passes away, then what? Uproot your family and move again? Get online and research some facilities near your current home. Maybe have your husband visit some and report.

Convince your dad to move into your best choice for a month,, as a respite for you, as you've been away from home so long. A lot of places do respite care and can also do needs assessment I think, that while it won't be home, you'll find he will be OK, and continue to thrive with the full time care, and you can be a supportive daughter, and be with your family too. Hopefully you can convince him to stay and then you can begin the process shutting down/ selling his home. Of course all this depends on finances, but round the clock home care is usually more costly than an Assisted Living or Nursing home. I would not move him into your home permanently, but you might need to do it for a week or so, while you get final arrangements made. If so get caregivers to help.
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kichenwitch: We really had planned for my late mother to go to the LTC unit of the Nursing Home she was in. However, they deemed her "too well to stay there in their rehab unit." They were actually incorrect as my mother suffered an ischemic stroke less than 48 hours later. My mother resided alone seven states from mine until I had to move in with her. I do NOT advocate this.
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My mother lives in a Memory Care Assisted Living community where everyone is vaccinated, staff and residents alike. Covid "cases" still occur every other week, at least, thanks to constant testing which shows positive results. It doesn't matter if a person is showing symptoms or not, a positive test is considered a "case" and 2 or more positive tests is considered an "outbreak". Again, every human in the ALF is "fully vaccinated" and not one person has died from the virus to date, since this debacle began in March of 2020. Vaccines weren't given out until February or March of 2021 and no resident died during the time they were unvaccinated, either. When a resident has tested positive, he or she is isolated to their room for 10 days. If an employee tests positive, they are to stay home for 10 days. So you see, with testing going on 2x per week, positive "cases" will come up no matter what, vaccinated or not. Being vaccinated is not insurance against getting the virus, my cousin is proof of that statement. I have quite a few friends in the same boat, contracting the virus after being vaccinated. Nobody is immune, in reality. None of these folks live in LTC homes either. In fact, my cousin has been hunkered down at home the past 18 months and thinks she got sick at church. It can happen anywhere at any time, truthfully.

My mother is almost 95 and alive to this day precisely because of the good care she's gotten in her Memory Care Assisted Living community. In her case, it's been a Godsend for her and for me because I'm not capable or qualified to care for her in my home with her myriad of issues. Nor would I choose to if I could, I have enough health issues of my own and my husband to deal with as it is.

Make a decision that's based on what's best for you and for your father both, offering him the best quality of care and lifestyle available. There are no guarantees that any one of us is going to stay virus free for the long haul anyway, given the facts that the vaccines are only slightly effective.
Wishing you good luck, whatever you decide to do.
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The way assisted living operated during onset of covid. It would be out of the question for me now to reside their for the reasons listed below.

Memory Care - experiences /advice?
Until nursing home assisted living make their facilities safety has or will change I would not recommend seniors to go there. For the reason listed below.
COVID-19 tore through long-term care facilities across the country, accounting for a third of coronavirus deaths during the first year of the pandemic. Tragic tales of deaths due to problems with testing, personal protective equipment and infection control emerged at state veterans’ homes in Massachusetts, New Jersey, and Texas.
The inspector general’s report on the VA Illiana Health Care System in Danville is the first to publicly detail extensive breakdowns at a facility operated by the U.S. Department of Veterans Affairs. The agency runs a system of 134 nursing homes that serve roughly 9,000 veterans a day across 46 states, the District of Columbia and Puerto Rico.
An examination by the Government Accountability Office in June found there were 3,944 cases and 327 deaths among residents of VA nursing homes from March 2020 through mid-February. The cumulative case rate among residents was 17% and the death rate was 1%.
Those numbers are miniscule compared to nursing homes nationwide, where researchers estimate there were 592,629 cases and 118,335 deaths last year. The death rate among long-term care residents as of March was 8%, according to the COVID Tracking Project. see less
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When it is obvious physical and mental issues are quite obvious and reliable caretakers don't show or can't be found, that is warning #1. Second, if their needs and behaviors have a great negative impact on the remaining family members who are responsible for them, and they are finding it difficult or impossible and their own lives are slowly being taken away or destroyed, then there is NO choice whatsoever. They must be immediately placed somewhere to be cared for. No families and others should have their lives destroyed by what these people need or do - no one. YOU KNOW WHAT YOU HAVE TO DO. And if they are very difficult and do not want to cooperate, and everything you try to fix things fail, then either walk away because you can't help them - they made their bed so let them lie in it - or you take appropriate action. But you don't let them get away with things that should not be.
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Riley2166 Oct 2021
And god help you if you bring them into your home - do not do it.
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Please bring him home with you - temporarily. Work to find an assisted living residence near you so you can pop in to visit more easily. I know that it would be quite the process to get him new doctors and prescriptions and services transferred over, but he will probably do much better if he is closer so you can monitor his health frequently.
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Are there more options closer to you? In the long run, if you will be his responsible person, being close will be so much easier. Rural vs. suburban area realities is why I moved my mom from a very rural area closer to me. Started off as a vacation, but I had her just look at an assisted living near me, and she agreed to move. Best decision ever. She has gone from independent living to assisted to LTC while here. I have been able to advocate for her, insure that she has good care, and drop in without major travel ordeals.
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Find a live in caregiver
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Having my father in law in LTC during the pandemic has been challenging. There have been Covid cases among caregivers but none in the vaccinated patients. Now that the vaccine mandate at the LTC has gone into effect and the residents have received booster shots, I feel they are as protected as possible. I would look for a facility close to you, review the vax policies, make sure your dad is up to date on his vax, and make the move. As you are aware, the nature of COPD is chronic and progressive, so he will require more help in the future. The breathless episodes are scary for everyone. Keep asking questions on this forum. There is so much experience and support here. ♥️
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People are not getting covid from the unvaccinated. Most that are getting it are fully vaccinated. The shots do not stop or prevent covid.
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cwillie Oct 2021
People can choose to risk their own personal safety but those who work up close and personal for prolonged periods of time with vulnerable people need to be held to a higher standard than the general public. And sadly in my experience those who refuse vaccination are often also not taking any precautions in the rest of their lives either. Vaccines don't stop all covid infections but they do stop many, and they do stop most severe infections and deaths. But it's also true that even those fully vaccinated need to continue to be on their guard to prevent spreading disease needlessly.
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Don't move your family to your dad's area. Unless you really really want to live there and plan on staying there for the long term. If you like where you live, stay there.

I would move dad to a facility close enough to you to visit. While the place nearest you is having a covid outbreak, it will be over soon. It happens and covid is here for the long haul, just like the flu, etc. So, I would ask them the process for admitting your dad. And advice on moving him there. It won't be easy but I'm sure it can be done.

If he stays where he is, you need to get lots of help in his house. Or you can put him in a facility in his area. I guess in a way it doesn't matter how close to his house it is since you would be going back home and managing his care from afar anyways. Opens up options.

While you finish figuring this out, maybe get some help in now to ease your workload.

Good luck getting this taken care of and getting back to your husband.
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Not that it answers your question, but the CMS has the most recent data on COVID cases in nursing homes. It's kind of a long, convoluted table, but you can find the data. https://data.cms.gov/covid-19/covid-19-nursing-home-data

I click on 'view data' and look for the nursing home.
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Kitchen, as others have stated, move him to a facility closer to you.

This will make it easier for you and he will adjust.

Please do not get caught in the senior trap that so many do. You forsake your life to prop his up, so he doesn't have to make changes or do something he doesn't want too.

He needs help and he needs to make changes to get that help. Whether it is comfortable for him or not, because your family matters as much as him and he needs to see that, or not, but he needs to make sacrifices as well.

Find a facility that you are comfortable with, even if you can't see him, he will still have his needs met and have more socialization then being home with 1 caregiver.

Moving my dad into a facility was one of the hardest things I have ever had to do. However, it was the best decision for him. His health improved and he had mates to hang with and talk guy stuff. He didn't want to go but, there wasn't any other solution to meet his care requirements.
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kitchenwitch Oct 2021
Thanks so much for sharing your experience and advice, Isthisrealyreal! I appreciate it very much.
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I think in the long run choosing a facility that is close to you is better than choosing something farther away, your ability to make impromptu visits really does make a difference in what you see and hear about what is going on in a facility (not to mention a shorter commute is just easier on you!).
My experiences are all pre pandemic (thank god) but my mom spent some time in an interim facility while we waited for a bed to become available in the NH in my town - since he is still mostly able to function independently perhaps look at an independent living or assisted living facility in a safer area with an eye to moving him closer as his needs increase.
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kitchenwitch Oct 2021
Thank you, cwillie! I appreciate your input.
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Kitchen, would it be possible to move dad near you? I would advise against trying to up root you and/or you family to move near him. You have to have a life too. We can be good caregivers without going down with the ship.

I did long distance caregiving for years for both parents eventually moving dad across three states after mom died so he was near me. He was in a nice place and eventually adjusted well. He got in before the covid outbreak but they were still in lockdown when he died last year.

Sorry I can’t advise you on getting and elder in care during covid precautions but I know facilities will still accept new residents. My dads place did during the scariest period. They had very good and effective protocols.

I haven’t been active on this forum for awhile but in the past posted and discussed my situation here and got loads of good advice and support along with some nutty stuff here and there. Just ignore and move on.

Good luck to you.
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kitchenwitch Oct 2021
Thanks Windyridge. I'm very sorry for your losses. I'm so glad to hear your dad adjusted well to living in a care facility.

I appreciate your advice! I will definitely ignore and move on from now on. :)

As for moving...my home is about 2000km away from his, and I think even traveling there would be too taxing on him, so I don't think it's an option at this point (but a good idea overall). I think you're right that uprooting us, at least permanently, wouldn't be the right thing to do either. I think temporary longish stays are going to be what makes most sense once we can find either a live-in caregiver or a care facility that is safe.

Thanks so much for sharing your input.
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The unvaccinated are not causing covid outbreaks. Ask yourself how many people in that nursing home are vaccinated and how many are unvaccinated then do the math on who is really causing these outbreaks. Your father is vaccinated and has about a 2% chance of catching covid especially since he is vaccinated. He is basically dying being by himself as you witnessed when you came to visit. Better he goes into nursing home care to be taken care if then dying at home alone. Unless you want to mive in with him full time or move him into your house. These seniors are more likely to die from being isolated and alone because of the fear of covid then if we just take common sense precautions like boosting their immune systems and washing their hands. Funny i have yet to hear any of these talking heads speak about immune boosting on the TV with all their fear porn.
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kitchenwitch Oct 2021
I am zero percent interested in engaging in any discussion about the safety of unvaccinated people. This is a totally inappropriate response. I have not asked for opinions about vaccination. I am a caregiver who believes in vaccination, and in the public health system, who is trying to find the safest option for both myself and my father given the evidence-based limitations of the current situation.
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Bridger46164 I'm so glad that your uncle is in a safe place. My region does not have a vaccination mandate for care workers yet so unfortunately that isn't the reality where we live.
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Bridger46146 Oct 2021
Facility does not have vax mandate.
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Does he NEED skilled nursing, or would Assisted Living be a better fit?

You might get a "needs assessme t" from the local Area Agency on Aging to better clarify that.

What about a facility close to you? As my mother became frailer, it became clear that one of us needed to be able to get to the ER within 10 minutes (the NH will call 911 and have your parent transported, but they don't stay with them).

Look down the road and plan around the long game. Have you read Atul Gwande's On Being Mortal?
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kitchenwitch Oct 2021
No, I haven't read it. This is all brand new to me. Do you recommend it?

As I mentioned in my post, the facility close to me is in the midst of a Covid outbreak and so isn't an option right now. The next closest one is an hour or so away from my dad's home. But I also don't live here permanently. So I'm navigating questions like, do I pick up my entire life and move my family halfway across the country?

We've been referred for a needs assessment and hopefully will get one soon.
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My uncle is in a nursing home. All employees are vaccinated. Residents were vaccinated last year. Each resident can have two essential visitors/caregivers. I signed for him to get vaccination. They have not had a Covid case in over a year.
They wear masks and have hand sanitizers dispensers at every door. If working directly with a resident aides nurses wear disposable gowns and gloves.

I thought he would do terrible living there. He had always been on a large farm and always outdoors. But he has made friends with sever male residents. Reacquainted with two ladies he went to high school with. Before my accident I checked on him every day. My husband, sons and DIL's visit now. One of my sons has become very close to him. He stops in almost everyday and takes him a kids size milkshake from Dairy Queen. That's been a favorite for years.

We take him back to the family farm every couple of weeks. We've never had a problem with him not wanting to go back to the nursing home.
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kitchenwitch Oct 2021
I'm so glad that your uncle is in a safe place. My region does not have a vaccination mandate for care workers yet so unfortunately that isn't the reality where we live.

Editing to update now that I've read your longer response - thank you so much for sharing more about his experience in the home. This makes me feel hopeful that when the time comes this could be an option. Like your uncle my dad has spent a lot of his life on farms and in rural communities and loves wide open spaces and independence! I'm so glad that your uncle has a good community and feels safe and happy where he is! Thanks again for sharing.
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