Hello,
I’m hoping you can please help with a question about the capabilities of memory care versus nursing home settings. I’m taking care of my mother with Lewy Body dementia. I’ve lived with her for about 2.5 years and have had the help of caregivers from an agency during a lot of the daytime during the weekdays and weekends. I take the night shifts from 6PM-8:30 AM and have a caregiver during most of the rest of the daytime while I’m working, aside from a couple afternoons and helping out as needed.
I’m trying to be proactive about not getting in a situation where I don’t have the ability to effectively provide care at home and I’m also getting tired (I’m luckier than most given the substantial help I’ve had, I know). I’ve been looking into memory care centers and my first experience hasn’t been positive. After a home visit assessment, she was rejected from a memory care center I’d left a deposit with. The reasoning is that her Parkinson’s type symptoms indicated to them that she would probably need a higher level of care and that they wouldn’t want her to be there for several months and then have to transition to a higher level of care which they couldn’t provide.
Here's a summary of her circumstances regarding ADLs at this point:
Eating: She eats on her own, although it is a slow process. This has improved to some extent with the addition of Sinamet for the moment. Occasionally, we’ll help her with eating because she can get distracted easily. Sometimes before the morning Sinamet kicks-in, it can be a bit difficult. No dysphagia issues yet. I would say 95% of the time she eats effectively on her own.
Showering: She can get in and out of the shower with assistance, although it is a struggle. She can stand in the shower. All hair washing and scrubbing is done by caregivers. She doesn’t enjoy it and I think it is a bit scary for her, but she doesn’t resist it.
Dressing: This is totally done by caregivers.
Transfers: She needs help getting in and out of chairs and bed, but we can do it without any sort of lift.
Mobility: She can walk. We stick close to her due to poor balance related to the disease and often I keep my hands on her to steady her due to balance issues. She can’t really get out of a chair on her own though, so it’s not like she would do that in the absence of someone helping her.
Toileting: My mother has urinary incontinence, especially at night and occasional bowel incontinence. We help her on and off the toilet and change Depends.
She doesn’t have any behavioral issues that would be of concern as far as I would know.
I’m not a small guy – 5’11”, 250 lbs, but I have wonderful caregivers who are much older and smaller than me who successfully work with my mother on their own. I’m surprised that a memory care center couldn’t handle this?
Sorry, I know that was a little long-winded by wanted to give some context to my question. I’m basically curious of whether this should put a stop to my efforts around memory care and only consider skilled nursing facilities? Do I just have a wrong understanding of the purpose of memory care and their capabilities? If that’s the case, that’s fine. I’d just like to draw on your knowledge and experience.
If it’s the latter, I may just try to hang on longer providing care at home. I know people in SNFs are dedicated and competent, but I’ve had some bad experiences with my late father’s care (he had Parkinson’s, ugh).
Thanks for reading. Any thoughts are appreciated.
Memory Care can not use "equipment" so if it is unsafe for ANY reason for staff to transfer her then she would have to go to Skilled Nursing.
There may be other reasons that she would go to SNF but you would have to discuss that with the administration and what their requirements are.
SOME MC will keep a resident if they entered the facility walking and now need equipment to transfer (that may have changed since my friend's husband was in that situation)
In the case of "tubes" most MC will not accept a resident with tubes as people with dementia tend to pull them out so Skilled Nursing where the staff is trained to handle them and usually the ratio is different. ("tubes" would be feeding tubes, any "ostomy" and IV's)
In most cases it is not a matter for the facility to determine it may have more to due with State regulations.
Have you thought about getting a "Sit-to-Stand or a Hoyer Lift to make it easier for caregivers and yourself. A Sit-To-Stand if she can support herself a bit while standing., Once she can no longer support herself then a Hoyer Lift would be what you would need.
And because it is me....
If you contact a Hospice and she is eligible you would get all the equipment you need delivered as well as a CNA 2 times a week to help with a bath or shower and they would order supplies for you. (all covered and delivered)
The part about leaving a deposit with one who refused to admit her. Did you get that money back? If not then contact your state's Ombudsman's Office (not the Ombudsman respresentative at the said facility) and tell them what happened. They'll get your money.
I will be honest with you. I don't think the way you've hired her caregiver is the best way. You and your mother need more coverage.
There should be two or even three caregivers who split up the week and the hours. This way your mother has 24-hour care.
Or one caregiver who stays at your house during the week, and one who does weekends.
Never let a caregiver make your home their legal residence.
Take what you can get covered from insurance, but hire privately if you have to. You can negotiate the wages when it's private too.
I’m sorry the one you had chosen didn’t work out. Did they give you any type of assessment in writing? That might be helpful as you visit other locations.
For now, while you are looking, could you add extra help to cover your shift? Even a few hours might give you a bit more rest. In caring for my DH aunt, I reached a point early on where I realized I would not do hands on caregiving but would manage her care. She went from home bedfast and then to an ALF and then to a SNF. She has been there two years now and is 97. She is on hospice which adds another layer of help and ways for me to check on her care besides the SNF. If she leaves this SNF, her hospice will go with her.
Your mom might qualify for hospice as well. Aunt had home health, then transitioned to their hospice services. We have worked with her hospice agency for years so when we went into the SNF, they went with us. With her on hospice, she could avoid having to be taken to the hospital for minor issues.
I am glad you have found Aging Care. Take care of yourself. Wishing you good luck in finding the right place for your mom.
That is theft and fraud.
I understand how you feel. It’s hard to know what to do when you aren’t sure what the future holds and the best way to handle it.
I was the primary caregiver for my mother who had Parkinson’s disease.
I wish that I would have researched early on how Parkinson’s disease affects a person more thoroughly before diving headfirst into caregiving.
Before I knew it, I was in over my head. I often I felt as if I was drowning. Is that how you feel about your situation?
Mom lived in our home for many years. She died at age 95 in an end of life hospice care home. She received excellent care from the staff.
All I can tell you is not to push yourself past your limit. If you are filled with anxiety, then you won’t be the best caregiver even though you want to be.
Reach out to her doctor and explain your situation. Ask for guidance. Don’t carry this burden alone. Discuss your concerns with the doctor.
Tour potential facilities. Then you will be prepared to place your mother in a place where she will receive the best care possible.
Please don’t get caught up in the guilt trap like so many of us have.
There shouldn’t be any guilt associated with not being able to be your mother’s primary caregiver if she needs more support than you can provide.
It’s absolutely normal to feel sad about your mom’s condition but realize that you didn’t cause any of the problems that she is experiencing which stems from the aging process.
Believing that you can handle things on your own better than others isn’t necessarily true. Very often, being an advocate for someone who is placed in a facility is the best option for them and for you.
Wishing you peace as you navigate through this difficult and challenging period in your life.