Do we have any other caregiving option for my mom outside of a nursing care facility?

3 answers | Last updated: Sep 26, 2016
A fellow caregiver asked...

Hoping you can help or direct me to someone that can. Brief Hx: Mom suffered a major stoke 17 year ago, partial left sided paralysis, vision effected etc. over the years her condition has worsened, as one would expect. Mom has been in a few asissted living care facilities, over the past few year her level of care has risen. We just moved her less than a year ago, as the prior faciity dropped her on several occassions, barely spoke english, very expensive, very unresponsive when paged, to take mom to use toilet. The new facility required Mom to spend a few days there during day care program, Once that was done, a few other stipulations were required: 1)We have pt for Mom thru the asissted living facility to help strenghten her legs, we did this, it took several months before they began her sessions, and the sessions have already reduced in time and effort on the therapist part. Also we were required to have someone at Kaiser come out twice to teach Mom on using the slideboard, as this is what the caregivers use, to transfer patients to commode, or wheelchairs etc. My mother participated and completed this requirment also. Although the caregivers have never used this method of transferring my mother. My mom used to be very nice and patient person. She obsesseses on every little negative thing now, and paging a caregiver and it taking various times for a response, her anger builds and she can be quite "flippant" and am sure she has made some very unpleasant remark to the caregivers, We have just been notified that we need to fing my mother another facility, for reason, she needs much more care then they can provide. (my mother does take up to one hour of assistance from a caregiver in the am and in the evening. Can they do this even though we satisfied there every request, and trial so that they knew exactly what it was my mother would need in the way of care. Do we have any other option outside of a nursing care facility? other than the physical restrictions, my mother has retained her mind and other than some age related deterioration, she remains fairly sharp, although wonder if this is working againt her at times. part 2 of my question is, my mothers "outbursts" while to me the reaons seem somewhat justified, although very minor, her means of expresion are totally unacceptable. once she has made her nasty comment or yelled at the caregiver, she is done, and though usually she remembers getting upset she doesnt view it as a big ordeal. (her and i used to have problems in this area, I followed my sisters way of handling it andmy mom and i are fine now) but i do understand their side of it as well. Could thi be signs of some underlying problem, ie medications, chemical imbalance, or early stages of dementia? or just plain crothity old age syndrome? If these questions cannot be answered by you, could you please point me in a direction where i might find some anwers or assistance. (btw my mother is in northern california area. thank you

Expert Answers

James Castle, M.D. is a neurologist at NorthShore University HealthSystem (affiliated with The University of Chicago) and an expert on strokes.

Very sorry to hear about this.

It sounds like the relationship you have with her current living facility has broken down, and you need to consider moving her to a different location. I would check with her therapists about what level of care they would recommend (24 hour assistance at home, full nursing home coverage, assisted living, etc.) and take that information to the social worker either at her current living facility or at the hospital associated with her primary medical physician. Then, you should look for a better place for her to live. Sometimes this means having her move in with you (or another family member) with 24 hour nursing help, and sometimes it means upgrading to a nicer facility.

Second, it sounds like she should be screened by a Neurologist for dementia and/or depression. I would take her to a Neurologist and ask that she have both a "Mini-Mental Status Exam" and a "Geriatric Depression Scale" performed. This would help diagnose her problem, and tailor therapy. If she has dementia, a cognitive enhancing medication such as donepezil or Namenda would be helpful. If she is depressed, an anti-depressant such as sertraline or fluoxetine would be great. If her mood is chronically unstable, a mood stabilizer such as lamotrigine or valproic acid would also be a consideration.

I hope that helps.

Community Answers

A fellow caregiver answered...

No I would say you don't have any other option other than a nursing care facility. First this stroke paralized part of your mother. This happens alot. It sounds like her speech has also, been effected. This has changed her alot. If you think about it she is sort of trapped in her body. Sort of a dead body with an active mind. My mother had this same problem. I could understand what mom was saying but, people at the care facility could not and that caused lots of problems. They would sometimes have to call me to see what she was asking for. This would upset mom and then mom would get mad and act up. I feel this is some of the problems you are having with your mom. The words are in her head but, they won't come to her mouth the way she wants them to. Therefore, miss comuncation causes problems with nursing staff and others.

As time passes this builds and your mom just gives up or gets worse. It seems your mom chose to get worse. Now it is to the point that you may have to move her to another care facility and start over. Depression sets in and sometimes to the point that they will fight you or try to take their own life. My mom tried to take her own life by hiding pills they thought she was taking.

Everything she use to do she can no longer do. She cannot walk, and if one entire side is paralized that means even her hands do not work correctly anymore. This is a hugh problem for anyone. It gets in their minds that their lives are over. Why live! Now she will either make your life miserable as possible just to get you to spend more time with her (which in reality causes you to not be around her) but, remember she is not thinking like she normally would. She is just trying to survive. Trying to find out if there is a life for her somewhere. This is a good thing really because, if she ever gets it into her head that she has no life left she will try to kill herself.

The meds they told you about above are good idea. Other things you might try is to get her out and about more. That seemed to help my mom alot. Once we saw her try to take her life we decided to get her out of that place more. That helps her attitude alot and she began to act better around the people at the care facility. Just something simple as a car ride, or a picnic at the park. Anything to get her away from the care facility once every two weeks. Her mood changed alot. She had something to look forward too. Bought her an electric wheelchair so, it gave her independance. That helped alot. Her anger stopped and she could laugh again.

She no longer felt trapped. She had a freedom even when I was not there. I think the wheelchair was the best idea of all. She would race the other people at the care facility outside and really enjoy herself. For the first time since her stroke. No one like to feel trapped. Mom lived for 6 years after her stroke. The first 2 years were terrible. The last 4 she enjoyed with these changes. New meds, electric wheelchair picnic in the park or going to the mall.

I hope this helps you as it did for me and my mom. God bless you.

A fellow caregiver answered...

I feel for you and your situation. I was primary caregiver of my grandmother until she broke her first hip. After surgery, she was put in a "rehab/nursing home" for several months which was horrible. I would go there and it seems all the patients ate were cold hot dogs. They were so short handed that if the food was put in front of the patient or the patient could not eat it without help or fast enough, the tray was removed and the patient went without food. I started bringing my grandmother fried chicken and giving some to her roommate.

The 2nd nursing home she went to seemed lovely at first until the aides let her fall in the shower room one morning. My grandmother told me her let hurt. I didn't believe her and thought it was her dementia and when I asked her attendant and the head nurse what was going on, they told me she was probably coming down with the flu.

Luckily, I had always befriended the staff. I know their jobs are dirty, boring and underpaid but a lot of them are very religious and tell me we'll be old some day and we'll want someone to take care of us.

The cleaning lady saw me upset about my grandmother and I told her something sounded funny about the nurses' story. The cleaning lady looked around and whispered to me to get the ambulance to take my grandmother to the E.R., ASAP. I did and surgery was immediately scheduled for her broken hip from the fall in the shower which was hidden from me. I guess they knew my grandmother would not be able to articulate that she had fallen in the shower and there would be no autopsy if she died. Just another old person dying from the flu!

The cleaning lady was my angel. My grandmother was in the hospital for a month and got a stapph infection in the operating room but she lived and walked again. I took her to another nursing home where she stayed until she ran out of money and then put her in a clean but not fancy nursing home with sitters around the clock, paid for by the settlement from the nursing home where she fell.

I would check with the State where you live and see which Assisted Living or Nursing Home has the best record. I would go there daily if possible . The attendants have told me that more attention is given to the patients of families who come. I'd come different times of day and I'd bring food, pizza, anything. Slip someone a little money if they're allowed to take it and thank, thank, thank them for everything. (We're from the South and calling the attendants "Sweetie" or "Honey" and asking them about their families goes a long way too!)