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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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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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.
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.
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.
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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