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!
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.
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.
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.
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.
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
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.
I click on 'view data' and look for the nursing home.
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.
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.
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.
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.
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?
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.
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.
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.