My 95-year-old mother with dementia was accepted into nearby facility. I was taking care of her in our house, with the help of an Aide. Aide worked about 35 hrs. a week. My mother hasn't walked in 6 years and is incontinent.
My mother was in a facility about 5 1/2 years ago for 10 months, then she fell in between 2 aides in the house and fractured her "good" leg requiring emergency surgery. She was in rehab and never regained her ability to walk. I took her home and bought a stand assist lift like they were using at this facility. So, except for a couple of weeks in Feb last year and 6 weeks over this past Summer at S/T rehab, she's been home.
Now, I want to travel to see my newborn great niece in Florida. I can't do this if my mother is in the house, since the aide won't sleep over. I thought I could relax more, but I'm running back and forth. NH changed seat cushion, at my request. She already has pressure sore on her tush after only a week of being there. It took me a long time to heal the last sore she got at previous facility for short term rehab. The other facility was nicer but had no long-term beds available and the 2 other choices declined her. So, I agreed to take her home temporarily until I found a place for her long term. I had been working with an Elder Law Atty and preparing the paperwork since the Summer of 2021! So, I'm frustrated as to the lack of care she's getting at this facility. I get there yesterday, and after they put her into bed, discover her outside pants soaked with urine as well as the seat cushion cover, and hoyer sling. Today, I get there, same story. I bring home her pants again to wash them in hot water separately. Either they're putting on wrong size diaper or not putting it on properly. In addition, they're putting drinks in front of her that don't have a cover and no straw. Mind you, she only has one working hand and could not pick up a drink like this. Also, one of the drinks had a fly in it. In addition, her right leg was off the footrest. It was like nobody was checking on her. They have her sitting in hallway. The floor looks like a psych ward. There's a male resident across hall who only ever has on a shirt and undershorts. Also, there's 2 wandering female residents always coming into my mother's room.
I'm thinking of taking her back home even though I paid Atty for a Medicaid nursing home application and found a place that would take her long term. I was looking for a HIGHER level of care...not a LOWER level of care!
I'm running there every day with something to eat from home. I never know how much she's eating. I'm assuming not too much since when I feed her, she seems so hungry and finishes everything I give her.
I hate leaving my mother in a place that looks like a psych ward. Now I wish I never starting this whole thing and just let her live out her days at home. I just can't relax with her there because I feel they're not checking up on her enough and she's not home. I've put my life on hold for her. Before she stopped walking, my mother and I used to go on vacations together. I'm 63 years old but in pretty good shape & healthy. The dementia caused her to become abusive ...and the next day she didn't remember saying mean things and asked me to forgive her.
I knew from experience that being in a facility, I'm not going to be able to micromanage everything, but I feel they are not giving the care that I would expect. I don't feel comfortable with leaving her there right now.
What would you fellow caregivers do in this situation? I feel like no matter what decision I make, it's the wrong one. I'm exhausted doing at home caregiving and frustrated at this facility lack of care.
Thanks so much in advance.
The best care is enormously expensive. Even at that, if is not anywhere NEAR the care of two people caring 24/7 for one person, and it never will be.
As a devoted RN I can assure you that family always arrives when the incontinence has just occurred, and when you are trying to feed three different patient, running room to room to room while call lights go off like a Christmas tree. I am kidding here. But at best it is none too good, and we who have been even in a hospital know this.
Nursing home staff is notoriously underpaid and short staffing. It is all about the for profit model now. Cut the staffing. We see it in tech and we see it in nursing homes--the difference in the latter is that real human being at their most vulnerable are inevitably harmed.
I do wish you the very best, and you may trip upon the very best out there accidentally, but I would not place money on that wager. I don't know that the care for your Mom will ever begin to measure up to the care in your home.
So now we come to the bottom line of what can you do about that. You are there and advocating for her, but other than that, you can't do a lot other than sacrifice the next years of your life to caring for her in the home. And the cost of that with hiring help will drain any resources you may have for your own future.
We often, on Forum come smack up against "not everything has an answer" and it doesn't. That's a fact. That your Mom is so terribly vulnerable in all of this is a tragedy and it is a national tragedy as well, because we on Forum know you are anything but alone. I am so terribly sorry.
I used to recommend hospice being called in for the added care at the end of life. I find now that it has descended into part of the for profit American Way. You get the rote 2 or 3 baths a week, one RN visit, and a call from a social worker who doesn't know much. Am experiencing this first hand right now with a good friend dying at home. And if you research you will see that Hospice has moved now from a mission to a for profit model.
I am so sorry. I know I am giving the very worst news only here, and I hate to think it could rob you of hope, but I just need you to know what you are up against. And again, I couldn't be more sorry.
Maybe talk to the doctor who supposedly gave that advice and find out why.
Maybe do something nice for the staff? I know you probably would rather give them a smack right now but how about bring them some kind of a treat with a short note?
To your original issue of what to do, I'd say to keep keeping an eye on mom and the staff (in a kind way) and see if you can find a better place for her. Maybe as you get used to the place and they get used to you, hopefully things will improve.
Even though this is not ideal, I do think it's better, in the big picture, than her being at home with you. It's just too much. Sorry you're between a rock and a hard place.
Had care plan meeting today & complained about lack of care…her sitting in urine &
sh- -…they’re more concerned about the type of shoes 👞 or sneakers she has. I told them she hasn’t walked in 6 years & is fall risk. That she fell in between 2 Aides in house 6 years ago & needed emergency surgery on her “good “ leg. Making her walk will cause her to fall.
I read the thread just far enough to find that you'd hired a private aid to come in. That's fantastic!
You can't bring mom back home, you need this time for yourself. Stay with the private hire, go on your trip, get mom on list for a better facility. You can look at hospice for her, that will bring in RN's who can facilitate reporting poor care and advocate for mom as long as she's at this place.
It sounds like everyone there is burned out and some are feeling the guilt of inadequate care, if they are caring people and not overly jaded. Do what you can to improve mom's care and document and report everything. You may want to try a meeting with the DON; if she's worth her salt as an RN, she'll tale action.
I know that I would be in complete turmoil in your shoes, but try to stick it out. The moving back and forth is hard on your mom too.
Wishing you the best in a very tough situation.
Thank you 🙏🏼 so much to my fellow caregivers ! I truly appreciate everyone here.
Good luck.
My mother’s pants remain clean after care plan meeting!…my private pay aide helps mom w eating breakfast & lunch.
On a side note, the house had fruit flies problem & had to get exterminator to spray. So in a twisted way, it was good thing she wasn’t in house..because I had to leave for a few hours & open all windows. I’d never be able to get mom out of house after spraying.
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