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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.

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Update; today Friday Nov 18:
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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My private pay Aide that I had in house with my mother came to facility today. She helped feed mom went with her to therapy & just stayed by her side till I came. Outside pants soaked again today, Monday Nov 14 ..showed floor Nurse Supervisor ..says she gonna discuss at meeting!?! They just need to take diaper changing lessons!!! What they need a meeting for? Just put fkn diaper on right. She very rarely leaked at home. We know how to put on diaper. I’m more exhausted & aggravated since she’s in facility rather than being home
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I took pictures of her tush sore & though it’s nickel size, it looks more than just grade 1. Nurse came in to do wound care …In addition, her outside pants soaked again with urine..these fkn a-holes don’t know how to put diaper on or using wrong size. At least seat cushion cover didn’t get wet because I made them put chuck, but hoyer sling got wet again. I already was washing seat cushion cover & drying on doorknob about 3 nights this week.
Thank you 🙏🏼 so much to my fellow caregivers ! I truly appreciate everyone here.
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againx100 Nov 2022
Sorry that she's getting wet all the time. Sometimes they are just SO incontinent that nothing helps. Hope you can get this straightened out! Such a hassle, all of it.

Good luck.
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What would I do? After reading your question and follow up I would be looking for another NH pronto. There’s no guarantee another home will be to your standards, but there has to be something better than what you’ve described. I sure hope so anyway. If you can visit often and have your aide help her that would be great. You are the same age as me and caring for her 24/7 just wouldn’t be sustainable for me. I hope you find the solution you need.
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Care, please ask administrator early this week to call a meeting to form a careplan and to discuss all this. It is getting out of hand. At some point they may say they cannot care for your Mom. You want to avoid that. Ask for a meeting to work out disagreements and current issues before this escalates, I am thinking (hoping?).
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CaregiverL Nov 2022
Hi Alva,
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.
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CaregiverL,

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.
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Yesterday Nurse starts screaming 😱 at me that she’s the one who has a license & she follows Dr orders to crush pill. & it also says “do not crush “ in directions. I was simply sharing my knowledge & advice that she don’t have to crush tiny small pill. She acts like I know nothing..& I’ve been giving my mother meds all this time..like forever. So I don’t appreciate being yelled at ..it seems like all staff here short tempered. She yelling at me like I’m patient in psych ward. I guess hanging with them all day & you get same way. The other night, a different nurse start up with me when I questioned about something. Threatening me that I’m making accusations. I’m going to take a picture of my mother’s pressure tush sore when they put her into bed later. I’ll bet they try to stop me. I’ll keep all you guys posted….Thanks again in advance!
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againx100 Nov 2022
Wow, there is a really bad morale problem there. The bosses are not setting the right tone and are allowing, causing, and/or condoning this shoddy treatment of their patients and their family. I'm not sure who you should complain to but I would talk to someone a few levels higher than these angry caregivers.

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.
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Heartbreaking - go to the senior center and ask what NH is a good Place . the lawyers Lied and Placed My brother in a Place like that - they Over drugged him and he almost died and spent 3 weeks in the Hospital . After he had chemo they dumped him in another SH.. Hole - I went with his clothes and had him discharged he was Lying in a diaper filled with Diarrhea . He stayed with me 6 months and had to go to ICU and they said " He needed 24 / 7 care " I went On YELP and Looked at NH 's and read Propublica where people report neglect to medicare . I found him a Great NH that was Carribean with Nice Nurses and social worker . He Lived his Last 4 months there in a room by the forest and Had a peaceful death .
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CaregiverL Nov 2022
KNance, where is this place? Thank you for taking time to answer. I’m so sorry for your loss. 🙏🏼🙏🏼🙏🏼 Hugs 🤗
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Is it possible to hire a personal aid for a few hours a day?

my Mom is in a facility, AL. The aids are great but just don't have time to do more than is necessary. My Mom is also bedridden so I am very fortunate that they are very aggressive in trying to avoid pressure sores.

I visit her most days of the week and have a companion go in for two hours twice a week and that helps.

I wish I had an answer for you. I do think your Mom does need the extra care a facility offers but there is no perfect place to place someone.

I am fortunate to have place my parents 1/2 mile from me. Dad passed but Mom is still here. I hope you can find a solution. Just wanted to let you know I care
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CaregiverL Nov 2022
Thank you, Grandmaofeight for your sound advice! I’m sending my private pay aide to facility tomorrow & rest of week. She keep same hours she had in house except it’s in facility. So she’ll help my mother with eating, drinking, for breakfast & lunch. Then I’ll come. Hugs 🤗
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Follow your gut. Your heart/mind/gut, will know what’s the best way forward.

“I'm exhausted doing at home caregiving and frustrated at this facility lack of care.”

Very difficult. Still, I would say: follow your gut.
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CaregiverL Nov 2022
Hi Venting,
good advice 👍 makes a lot of sense. Thanks so much for taking the time..Hugs 🤗
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I like babs advice to you below. BUT, I must say that I think you already know, if you have been here a while, or involved in the devoted care of your Mom you have been giving, the realities of care in nursing homes and other facilities.
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.
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CaregiverL Nov 2022
Alva, thank you 🙏🏼 so much for taking the time for your well thought out & honest answer. So much appreciated! Hugs 🤗
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Google care advisors. Find someone local who can help you search for a new place. I used care patrol, a franchise in my area. A care advisor knows what is available, cost amenities, your needs., which facilitates take Medicaid. These people are a Godsend. They are paid by the facility when placement happens. Good Luck… move her if you can.
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CaregiverL Nov 2022
Thank you, Babs! I appreciate your advice! Hugs 🤗
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