My other posts can give some background, however we moved my mom into a nice independent living facility with activities and 3 meals and honestly it is beautiful! And, she actually said she “wasn’t miserable”. She has a friend she sees and walks with. Well enter Covid and here come restrictions which I TOTALLY understand (I’m in healthcare, I get the seriousness). But her friend is too scared to take walks and now they eat all meals in their rooms. No outside guests unless direct medical care or end of life care. Today they even said no more “6 feet apart” visits outside where there are rocking chairs. I can only come once a week and get her meds and fix them.
She is extremely depressed. Already has sundowners and it seems worse. Doesn’t have a lot to say at all which is unusual.
Of course it has crossed my mind do I need to bring her back? Will she fade away and completely go into full on dementia? She said she’s lonely. Not hungry she said. She is ESRD as well but no other issues.
I know this too will pass. But I just feel horribly guilty of the timing.
We did this as I felt she needed interaction and windows (she was in our basement ..full bath but just a 1/2 basement. And when I was in Clinicals and my husband worked and my kid in school she wouldn’t wake up and eat or do anything. She was extremely needy coming up often to ask me to get her a burger or take her somewhere..every hour on the hour..I had replaced my father and she relied on me for everything...I was exhausted and was facing the end of my schooling for NP school)
anyway...
Anybody here gone to get a loved one out of IL or AL during covid?
I haven't seen UTI mentioned in the responses (searched, didn't read them all.) So, question is did she already have sun-downing or is this new?
Combined with "Doesn’t have a lot to say at all which is unusual.", it might be a good idea to check. Inexpensive, not invasive and simple to rule it out.
When I first joined this forum and saw all the suggestions to check for UTI, I was skeptical. Then mom's first UTI at MC resulted in sun-downing maximus! She used to get UTIs when living alone, but was aware of them and sought check/treatment. With age (and dementia) the normal symptoms don't seem to apply. Mom's UTI and sundown episode happened on a Friday evening, of course, so no access to doc. She had appt Monday, so we checked - YUP. She had to take antibiotics and a very low dose anti-anxiety for the sundown during treatment only.
Since then, UTIs have presented as night-time bed-wetting. I thought the nurse had this under control (second time she thought AHA, and it was caught sooner.) Now we have a third and I had to gripe about it because it showed up as EIGHT extra loads of laundry last month (up to 15th) on this month's bill, so given 15 more days with no treatment, NEXT month will have more. 1 or 2 nights should trigger a test. I plan to gripe about that now!
So, if possible, at least start with the home test. If positive, they'll likely need to have a lab test (culture would be best, if possible.) If no UTI, would either of you consider a very mild anti-anxiety med, to take the edge off? It never doped mom up, it was just enough to calm her, once/day, worked first time, every time and no wean off period.
Feb. 1 she was rushed into hospital for emergency bowel surgery. That followed by an infection and then a sabovirus resulted in 3 different hospitalizations. 24 days of Feb required hospital stays. Then she went into transition care only to have No Visitors Rule enforced on March 12. She sleeps on a recliner in a cold activity room every night because she is restless.
I realized this week that I may NEVER have her home or huggable again. If her health fails, she will die alone. At her age she has little time left and she tells me she would much rather be home than where she is. She is exposed to so many aides and nurses day and night, and even though they are wearing masks and gloves, she gets far more exposure than if she was at home and only exposed to me and occasionally her granddaughter (who is a germaphobe). We will handle the inconvenience and stress of having her at home. It's not a life time sentence for us.
Each family is different and I have no idea what anyone else is really having to handle in their own family. But for us, bringing her home is the right move.
Trust your gut and heart in making this tough decision.
But since Covid reared it's ugly head, her facility has been on no visitors since March 12 and now is going to go until at least April 30th. She still tells me about all the things she can't do and needs me to do, like change the batteries in her remote, change batteries in her alarm clock, open packaging ( I'm with her on that, I don't understand the sadists that package things these days- I have to cuss and struggle with a lot of it myself) . I hear the decline, she calls multiple times daily for the same things over and over, all of which I am powerless to assist with. I have been a work at home employee for some years, but all these calls are putting a real dent in my productivity , fortunately my employer is understanding.
So ther other day I though, well I should just take her out of there and bring her here to my house. Brilliant! I have a not so handicapped friendly house, 3 crazy dogs and I work at home. Also a husband with COPD, vulnerable to this wicked thing so we're keeping him in a bubble the best we can. But I had to think, what if I get it? What if he gets it? I could not provide care for her then, so she is best off where she is, unhappy though she may be. She has a roof over her head, three meals a day and people who check on her frequently. Her spiritual needs are met somewhat, by closed circuit tv.
I'm not big on giving advice but it sounds like you have a lot on your plate and if you are in the process of becoming an NP, we NEED you!! So she is probably best off where she is. Take care my dear , we will all get through this somehow.
It’s not easy. Even though it doesn’t sound like your mom is in quite the same situation as my friend’s mom, you should not take her out. There are too many reasons to compel you to keep her where she is. One being how far you’ve already come in placing her and another, your well being and that of your husband and child. When this virus blows over, your mom will be able to start adjusting again. You questioned the thought of her going into full on dementia as a result of the isolation and uncertainty. I have never known of an individual with dementia getting better. It’s a progressive disease. Full on, advanced dementia, looms ahead for everyone suffering with this disease as far as I know. Could the isolation hasten it? That’s one of the strange things about dementia, we never really know what causes it to sometimes accelerate.
Leave mother alone where she is. The entire world is suffering right now as we're all in the same boat. Feeling lonely and isolated, frightened and downright anxious all the time. My mother lives in Memory Care and I have to hear on a daily basis about her wanting to die and how it 'won't be long now' and blah blah. Which irritates the living hell out of me because I am suffering TOO, not just YOU mother! Again, we're all in the same boat, some just have better coping mechanisms in place to deal with their emotions and/or some discomfort and imperfections in general.
You can't fix this, my friend, no matter WHAT you do. Only time and science can help us all through this. Once a vaccine is produced, and/or medications to treat the symptoms, THEN we can all breathe a bit easier. In the meantime, we're all doing the best we can, your mother and my mother included.
Wishing you all the best
Great podcast specifically addressing this from medical POV : https://www.washingtonpost.com/podcasts/post-reports/feeling-lonely/
if the link gets cut it’s the Washington post April 3rd post reports- and there is a transcript you can read but it’s far better to listen and hear the emotion in these people’s voices...
NYTimes is doing this 2. Some bigger locals also, like Austin American Statesman, Salt Lake Tribune. Just wonderfully amazing
My dear Mom is currently in a rehab facility / nursing home setting - when she's done with rehab, she'll have to become a long term care resident. Since her isolation due to the virus, she has gotten more and more moody and tearful. The social worker at her nursing home called me for permission to bring in a senior care service that will give an evaluation for psychological counseling. I said "go for it", because, though I don't want her exposed to the Virus unnecessarily, her emotional well-being is as important as her physical condition. They are connected after all, right?
The evaluation hasn't taken place yet, but I'm in hopes that she will be able to talk to a counselor about her feelings. It will give her another person to talk to and she will be getting more interaction with another person, other than just talking to folks on the phone.
I'm in a similar situation. Mum is 87, in assisted living. I've been her caregiver and almost sole social contact for about 8 years, as her mixed dementia has increased.
I've been concerned about the isolation pushing her into delirium; she's had that a couple of times and it's hard to shake. (Starting an antipsychotic, Respiradol, was life-changing for us 7 months ago...still working well.) So my good old mum's personality is back, but there's still a lot of strain, as you know so well, of keeping her 'afloat.'
Don't consider taking her home. Many of us have tried to know the 'best' action, but excessive self sacrifice is really not the right way. Who knows when it would be appropriate to return her to assisted living? A year? Her place will be gone by then. And you'll feel guilty at the decision. Medical oversight and infection control are probably better in her facility than your home. It sounds like you're young and working. . . you really can't manage this.
I think our elders are well supported by news-y telephone calls. (Calling my mum once or twice a day really helps her. She doesn't want to end the calls though, which go on and on in circles till I abruptly sign off after 25 or 35 minutes, by which time I usually feel scrambly-jangly-frustrated. Not sure what it is, but I know those calls are really NOT good for me!)
So I'm going to suggest something else . . . can you hire a person or two to call your mum once or twice a day? Even a student. Send her a photo of them, a little informal 'bio', and let her get to know them and look forward to their calls. So many things can entertain her and give her the contact she needs... the weather, what they've seen out the window, singing favourite music together, how they're considering learning to make face masks, whether she used to sew, what the prettiest flowers are for spring planters, mom's family stories, etc . . .
For what it's worth, I wrote myself a personal manifesto to reinforce the right balance between supporting mum, and surviving intact myself. Some of it follows. Hope it helps.
"Remember, I CAN'T solve her problem. It's insoluble. Her brain is broken. MY life must be my priority, every day. She's had hers. Mental and emotional serenity and physical health are the important priorities for me. Self-care (healthy diet, exercise, & pleasures) are the ways to get there. My family should see me enjoying life."
I admire all the caregivers and family members who provide the care for this ever increasing generation. I would love to have their courage, their disposition, a giant portion of patience and understanding and wisdom to know how to deal with situations.
Perhaps you can google creative ideas that other facilities might be doing. We are all in uncharted territory and I'm sure all of our lives will experience challenges. I'm sure the answer(s) are on the way.
My mom was only in this place for a month when this all happened. I’m sorry for all of us. Hang in there. :/