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?
If you are getting different answers you may want to climb higher up in the food chain and take your concerns there; include the social worker as well. If you are not satisfied then look for a different facility that fits your mother's needs better.
I've had kids I grew up with that were downs or otherwise mentally challenged. Two of them went to live in group homes and from there went to their jobs. If there a possibility of your brother fitting into a situation such as this. One boy I grew went back to live with his parents when they got older - I believe he assisted them in some areas.
You have a lot on your plate and you need to find the time to care for yourself. Once you get your mother settled either where she currently is or in another facility, please take some time off for yourself - pamper yourself and take a deep breath.
I pray you and your family is blessed with peace, grace and love.
Yes, this daughter must find time for herself.
As a former cna- it wasn't up to us to just leave someone in bed all day. There must be a reason, maybe she is resistant? Also with dementia, she may happily pop out of bed one day, and be fighting (for lack of a better term) w staff the next.
You, as family can request a meeting at any time. Or speak with the nurse manager. You will not be "hated" for wanting the best care! We respected families who spoke their piece, more so than ones who never came. If you want her out of bed daily, say so! Most likely tho, skilled is probably in the cards. And that's ok. Same activities etc. Not very different from AL.
I'd go further and say that even when a family member (perhaps because of stress or bad experiences) is being unfair, unreasonable and unpleasant, it only increases our sympathy for the care recipient - the poor client actually has to live with this person!
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?
Love & light, Kelly
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.
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.
The only other thing I'll say in gentle reminder (please, nobody lash out), is to take with a grain of salt that sometimes places may be short staffed due to all the issues with COVID. In Maryland at least, if a staff just tests positive, they have to quarantine for like 10 days. So picture that happening with several staff at your facility, and they're still trying to meet everyone's needs. My dad, before he passed, was very heavy and also weak, so that had to use a mechanical device to get him out of bed. And it took two staff. So we understood if somedays that just wasn't possible.
I wish you the best in whatever you decide to do.
The only thing I can suggest to help you feel more comfortable while you address the matter and or research other places (because I know how busy your days are and how limited your time is) is that you call an agency and hire your mom a private care person to be in there over the coming weeks - (this person can be an advocate for getting your mom up and keeping her engaged) so she doesn’t decline and may be able to give you feedback on what she is seeing and what is lacking here while giving you time to look at other places or address all issues with management. That may help you and bring you peace of mind and buy you time to look at other places?
I know you said your mom had UTIs - did they retest her after the treatment? My moms UTI took over 4 months and several antibiotics to finally clear it. She then did a 180 once the infection finally cleared after 4 months and her behavioral/cognitive changes reversed and she was able to get back all her strength and begin rehabilitation therapies again.
I would have sworn my mom was slipping into severe dementia and I was losing her but in fact a UTI on a stroke brain can mimic severe cognitive decline. I’m just sharing what I learned that one dose doesn’t always clear infection and my moms NP waits a good 10 days to retest after UTI. I think many places and even drs make their conclusion and write of behavior or cognitive slowing as dementia when many times changes are strictly from infections or imbalances. By NO a means am I saying your mom is the reason she isn’t out of bed as this is their job - I just know how much I had to be on top of infections as places like this put you in a little box and often don’t see the bigger picture isn’t “always” dementia.
Im so sorry what you are going through - I know how exhausting it is when nobody hears you. But we all agree your mom deserves better than what this place is providing.
I know how hard is it to think you have to start all over again so for this moment I think hiring a private aide to be there when you cannot will allow you to breathe a little and give you time to find and research a better place.🙏🏼
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.
I do not envy your position.
How much is it possible to gather from your mother about what she wants included in her routine?
What does it say in her care plan (or support plan, or whatever it's called in this facility)?
The 3 explanations were given on the same day all of them within 15 minutes. One was the nurse told me to only keep her up for one hour a day, another was she had a covid test she has to isolate. (everyone on her unit was given the same covid test and non of them were isolated they were all in the common room. And the last one she told her director was mom was in pain she needed to lay down.
She was fine when I say her and when I asked her if she wanted to get out of bed she said one of her few words "Yes" But she was already in bed so no one went and got her up. She stayed in bed all day yesterday as well. :-( it makes me so sad.
I will have to find out more about her care plan at my meeting next week. I didn't know I needed to ask until the last few days because everything was going ok. I am learning more and more everyday.
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.
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 🙏🏼🌷