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?
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.
There were simply no nursing homes where I would place my wife with dementia. I undertook the task of caring for her at home with caregivers whom I supervised and worked with. We became like a family and provided 24/7 care for her for 2 years. It was expensive, yes! But, she was happy, clean and knew that she was loved.
Anything less is simply neglect.
If the aides are avoiding you, that’s huge red flag.
I did not like a placement she had (years ago) so I called her doctor, told him I wanted her to move to an assisted living with private room and bathroom.
He sent the order to the supervisor, I gathered her belongings and wheeled her to my car, with her oxygen tank, and she was much better off.
Long term care insurance enabled her to have more options.
Long before that circumstance, my cousin was an absent POA. She never visited places, she decided from afar which was inadequate.
During a visit, I found her scratching her shingles, hands all bloody, soiled herself, the whole hallway stunk, so I called the state omnibus.
He was there within an hour.
They had tons of violations and understaffing. Closed for a few months to address it all.
No regrets making that call.
Your instincts are talking to you.
Listen to them.
In my situation, my mother in law was in hospice, and and we disagreed with their care (they were making it easy for them to handle her). So we fired the hospice and got another one. It was a horrible experience as the hospice was totally unprofessional and violated the law while we were going through this. That told me I was doing the right thing in moving her to a different hospice service, and I fought them until we got her transferred without ANY cooperation from them. My gosh. My only regret is that we didn't do it sooner.
There is the stress of moving your mom vs continuing as it is. I wouldn't expect things to get better there. What you see when you are there is probably even better than when you are not. I don't see a reference to your mom's age. Wondering if she can express her wishes and feelings even with her aphasia.
I would talk to an outside neurologist if she has one asking considering where she is now, what would be the best way to go. Maybe even talk to her primary as she/he may know your mom well.
There are places that prioritize walking with the patients, moving them and assisting with their independence but it's not easy to know which ones actually do these activities from outside reviews. Maybe talk to some people who know first - hand the experience with another facility.
Hoping you will take care of yourself as well.
I had a similar situation with my Dad and we made the call to move him.
Don’t forget, they get money for each client.
If I were you, I would get her out fast. Once done, put in a formal comply with the state.
Been there & Done that.
Good Luck & Hugs
Nanakw
My sense is your mom needs a higher level of care than this memory care facility can provide. They do not have the medical resources a nursing home has. My mom recently went from ALF to hospital after delirium we thought was triggered by a uti. It wasn’t. She was dehydrated. Anyway, after a terrifying few days when we thought she was mentally gone, (hospital security called; sedating her with Haldol), she spent 2 1/2 weeks in rehab and returned to herself. She is now back at the ALF. I say all this bc during that time I was looking into memory care and learned they don’t have the medical team like a rehab or nursing home does to deal with the delirium (should it return).
I do not think the ALF is enough for my mom and in looking for her next placement, I will be looking at nursing homes, not memory care, bc I don’t think they are equipped to handle my mother’s needs. It sounds like your mom’s needs aren’t able to be reliably met where she is. I would visit some nursing homes, check their medicare ratings and talk to the staff and residents there.
Wishing you some good support in caring for your mom.
Oh! And if it’s less than 30 days since she left rehab, you can ask for her to be returned bc she was prematurely discharged—which is what it sounds like with her not walking.
My own mother’s ability to communicate is very limited. (96 years old with late stage Alzheimer’s), can’t’ walk and is in a wheelchair. What helped me and may be helpful to you is to ask for evaluations by OT and/or PT to assess your Mom’s abilities and come up with a plan. The social worker on her floor may be very helpful too. You can ask for a Care Plan meeting to make sure your mother is getting correct level of care and decide if her facility is able to meet those needs.
If they can't comply to the care you expect....you need to find somewhere else.
As a caregiver this is my #1 petpeve.
FIRST . . . . YOU ABSOLUTELY need to take care of YOURSELF. Do not go at your every free moment - as you WILL burnout and not be available for you or her, or your family.
* If you can, research other locations for placement. Observe, talk to other patients or families of other patients.
* Will the long. term health care pay for caregiver in the facility?
(or is that doubling up?)
* Certainly, with dementia - each day or some days, care needs could be different. It is not a steady or even decline. Medical needs are up and down.
---- And, abilities to move /walk/function change based on medications given. Absolutely check on what meds are given and ask for a print out of the meds and what each med is for - this happened to my client. She is stabilized now although it took awhile. And, the process of figuring out what meds are needed presents different behavior due to how it affects the brain / body. Ask the physician there.
* And, do talk to the MD in charge, not just the administrator.
- I would recommend you cease focusing your frustration on the caregivers / aides as they 'may' react accordingly with your mom. You want to encourage them to do what is in your mom's best interest by either talking calmly (if you can) and if you can't - talk to their supervisor. In essence, you want the best care for your mom and the aides will provide their best when they feel good about you/your mother. Of course, they should respond to each patient the same no matter what the family says ... This is reality.
* If you could / can, apologize to the caregivers - and say you are concerned and upset and that you don't mean to take it out on them. You don't want them on the defensive, which certainly is very easy to do in this situation. (Don't blame yourself, just adjust your thinking and behavior towards them. This is a learning process for you, too).
* Yes, it is a lot for aides in any setting to manage handle / with case load and emotionally managing dementia communications/acting out.
- Some are outstanding - amazing. Others want a paycheck. And income is low and generally so it their education level. This is very hard work. (I manage care for elders and offer direct service).
* Did you check on this particular facility to see if any reporting has been done - due to wrongful / inadequate care? Call an Ombudsman and check and/or ask them to assist you / advise you.
Gena / Touch Matters
Have you met with the social worker on campus? Maybe its time for mom to be accessed and speak with the physician there. Can mom start PT and OT there? Something more stimulating for her day.
Not sure how old your brother is but to help could you find someone to spend a couple of evenings with your brother?
At the pace you are going exhaustion is around the corner. Get as much help as you can for yourself.
It may be time to find another memory care.
Prayers and best wished
Some facilities just suck, and I would suggest moving her in the long run. I know it is stressful, but consider the long term stress on you & her by staying there.