I'll make my story and questions as short as possible. In February my mom had a stroke, hospital for a week, then went to rehab for 10 days and then she was home with me caring for her and my brother (Down Syndrome). I am lucky in many ways my mom has long term health insurance so getting caregivers to come in and care for her while I went back to work was covered but after about 3 weeks at home something changed. (Now I know it was Sundowner's & a UTI) Mom began to fight the caregivers. It didn't matter who it was. When we finally got an appointment with a neurologist she attacked her and was placed in Geri Psych hospital (worst experience). Now she is in Memory Care unit at a assisted living facility about 5 mins from me. I go to visit her everyday if not twice a day. I go in the morning before work and on my lunch break. My brother goes to a day program so evenings are spent with him. Yes I know I am crazy but my mom's stroke took her ability to speak, she had no psychical limits she was walking just fine until she entered the facility and now she can no longer walk. She is in a wheelchair or in bed. Well this week I have noticed that they are having difficulty transferring her to the toilet and bed so now they just seem to be putting her in the bed. Only a few girls have said they have problems with her transferring , the others say she does just fine. So I took a day off and hung out there all day. Well mom did just fine while I was there. The very next day when I went to visit mom was back in bed.
What do I do? I asked the caregivers about it and they got very defensive and then I was given two different excuses. Went to the director and was given another excuse that the girl I had questioned gave her..... So I am getting 3 different stories.
My thought is if you are unable or do not want to care for my mom then please tell me and I'll find another facility. I don't want to move her, she has been there since May and I feel has just gotten settled in.
Do I back off and let them keep her in the bed all the time? I feel like if I say anything my mom will be the one to suffer. And my mom is practically non verbal so if they do anything she wouldn't be able to tell me.
And now I feel like the CNAs are mad at me cause I questioned them. One is avoiding me and she use to be so friendly. What do I do? I don't feel like I should apologize for questioning why they are always putting her in the bed. Or should I Just to smooth things over?
Because your mom cannot speak for herself, you now must be her mouth. My husband had a massive stroke at the age of 48 which left him unable to speak but a few words and a few short sentences, and any time he would end up in the hospital or rehab, which was often, I made sure that I was there from early morning until about 8:00 in the evening, so that I could be his mouth.
And no you do not want them to keep her bed all day if she is able to sit in her chair or even a wheelchair, so she can go down to the dining area, or even outside. If they keep her in bed all day she will decline all the more rapidly. You are now moms advocate, so don't be afraid to stand up for what is right for her and her care. I wish you the very best.
As far as 'short staffed' goes, yeah, all of these places are short staffed, what else is new? The answer to that little problem is Agency help. Any and all MCs should be using agency's when and if the regular help are sick or call in sick for the day. It's unacceptable for the excuse 'we're short staffed' to ever be used. My mother's MC also uses a big white board for the caregivers where they post notes and updates on each resident's care notes. "Today make sure JoAnn gets a snack at 11 am with her meds" and things of that nature. So everyone, including agency help, are all on the same page regarding care needs and communication.
If you are going to move your mother, look for a NON FRANCHISED MEMORY CARE facility, that is my suggestion. The franchises are all after the $$$$$ as their bottom line goal. Privately owned MCs are after quality of care for their residents as their bottom line goal. I've had my folks in both types of ALFs and had to get them OUT of the franchise (Brookdale) when things went downhill in a hurry once the buy out happened. It went from a lovely place to a nightmare in a New York minute, where the only thing I saw were increases on the monthly bill and a turnover in management where none of them would take responsibility for the sinking ship!
Last but not least, make sure the new MC can handle your mother's needs; not all of them are capable and she may actually need a SNF. Don't ever be afraid to speak your mind to the staff at any of the facilities you are involved with. If you can't do that, something is wrong. You need to have an open line of communication with ALL the staff from the CNAs and QMAPS all the way up to the Exec Director and the nurses.
Wishing you the best of luck finding the best possible living arrangement for your mom. I know how hard it all is, honestly.
That is true about many nursing homes, probably most of them, charging a month's fee for moving a resident somewhere else or for cleaning services.
The nursing home my father was originally in certainly tried to shake me down for that money. They never got it though. Sure, I had to put up with threatening phone calls, voicemails, and very intimidating pieces of correspondence for a while. Didn't bother me one bit. I was an in-home caregiver to elderly people for many years. In that time I've developed the ability to completely ignore something. My father will be gone going on five years. That nursing home never got a penny of that money they tried to collect upon when he was moved out.
Sometimes the occasional piece of mail from them shows up. I don't open it and just write 'Return To Sender' on the envelope and put it back in the mailbox.
While I can understand the wheelchair part -- it's often what is resorted to in order to avoid falls -- the bed is not OK. My mother was only bedridden the last 2 1/2 weeks of her life, and that was at my request because her skin had become so fragile, the sling for the hoist was tearing it.
Memory care is all about stimulation, and if Mom is in bed, she's not in the common area getting that stimulation. She's isolated, and she's going to decline rapidly.
That place should be ashamed to call itself a memory care facility -- they aren't doing the most basic thing a memory care should do.
Unless you can be there all the time or have other people checking in on her all the time, complaining could make it harder on your mother being in her facility.
Find a better quality place and then have her moved. You do not have to give the facility she's in any warning or even tell them until the day she gets moved.
This is what I did at the NH my father was in. They weren't providing adequate care to him and weren't even decent. He had to be hospitalized and when they discharged him he went to a different facility. Just do it like that. Don't complain and do not tell them anything.
Again thank you to all who gave their advise and wisdom to a newbie who is just trying to navigate a path that is so difficult to go down.
If you cannot find a resolve with the management of a better routine (other than leaving mom in bed) then I would suggest that you may have to move her - but where she is comfortable and likes it there maybe you can come to find a better way for her.
It is so hard the not knowing and not being there - I do know some states will let you put in a camera? I have seen people post about it here - maybe that would be an idea to look into.
Utis can change their personality so severe it’s awful to watch them go through that (I too had to learn about the signs which are usually behavioral) but staff should know what to look for and be on top of that as well - they are trained to do so.
I would again attempt to request a care team meeting - and even speak with the doctors and ask to have a team of staff at the meeting. Ask specifics and lay out what you want for your mom for daily activity and ask them to describe her daily routine. Another thing I have seen here is people report if their parent was asked if they wanted to get up and refused that the staff can not make them - so maybe ask that if mom does decline early in the morning if a few more attempts and encouragement are made in effort to get her up and involved in activities?
I feel for you as I have a very difficult time trusting those with my mom now after witnessing things as you have. At the start of my moms care it was for rehab after a stroke - she too was non-verbal and at that time wasn’t able to tell me what was happening - it is such a hard time when I realized and began to witness these things.
maybe even speaking with other families in there to see if they have any issues and maybe even looking into a private care a few hours a week to stop by when you cannot and make sure mom is up if you can afford to do so.
My best wishes and hope you find a resolution for her 🙏🏼🌷
Love & light, Kelly
Your Mother's UTI would have scrambled her thinking & behaviour. This may have started a negative snowball effect. Grumpy with staff, staff less joyful, refusing to get out of bed, staff insist etc. Without ability to clearly say no, or express my wishes, physically resisting being moved out of bed is how I would probably communicate too. A professional CNA would know this & look to re-establish trust & connection.
There is a world of difference between someone marching into your bedroom, pulling open the curtains, booming "Time to get up now", covers pulled off, being turned to sit & expected to participate... and being allowed to wake gently to the sunlight, being alert enough to smile hello, being asked to sit in a chair & agreeing to that plan.
IMHO you either got it or you don't! Common sense & a caring manner. Many CNAs do it because they love to care, but others just need a job, it's temporary, pays the bills etc. The culture of a place will trickle down from management. Maybe meet with the Nurse in Charge/DON (whatever title) for a meeting, with aim to improving the resident-staff relationships?
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