My parents both with different types of dementia/Alzheimer’s have been living with me and husband the past 3 years. It’s challenging but together we manage and provide the best care for them. Suddenly my mom woke up unable to walk?? Ends up in hospital then therapy care rehab. But because she has no short term memory she keeps getting out of wheelchair and bed and falling. So they moved her to memory care ward. More eyes and aides. Still a fall out of bed at night but overall a much more active environment. After almost 2 weeks between hospital and now MC they call me and say that she’s very anxious and ask me to talk to her. We had just had a very pleasant visit but now she is asking me to please go and pick her up. First time since this all started. I’m so sad now because she seemed fine when I left. Meanwhile my dad has been suffering with her gone. Ugh. Help me get all this registered please.
If it is a respite/break you need for yourself there are options. If it is a more effective way to manage your time with your parents every day so you are less stressed & it is not so traumatic for you, then let's deal with the real issues here. I can see by the way you titled your question you totally burn out and understandably so- I've learned the hard way delaying the inevitable truth of bringing them home will only add problems and it sounds like you are not getting any stress relief with her there anyhow.
The best thing to do is to prepare the supports you need to bring her home. It also sounds like you are not getting any agency support at all with both your parents when there are many resources free and available to all family caregivers if you know where to look. I found this the hard way too.
I know some have commented on placing your parents together outside the home for care but I suspect if that was an option you would have tried placement elsewhere by now (just a guess). I too care for my parents, both with a form of dementia and it is getting more manageable after implementing some routines, individual activities for them that can free up time for me during the day, found several awesome supports that had been there the whole time which of course no one tells us about etc.
So are they ready for discharge home for her? And second what is the most difficult time of day for you related to care for your parents i.e. meals, communication in general, hygiene, medical appts or what?
Keep hope, you can work with this.....
* Unhelpful Answer (1)
The bigger question is what happens to people when there is family, but the person is beyond their capability to care for them AND there are no funds, including no house to sell, to pay for a facility? There are far too many who don't have the means to pay for care, family or not.
I had posted a thread suggesting as many as possible on this forum contact their Reps and Senators, asking them to support the elder/disability care being proposed. If they don't know help is needed, they aren't going to support it!
In that thread, I list ways to determine your reps and sens. Many on the forum are already overwhelmed, but it doesn't have to be a novel written to them, just short sweet and to the point - the people NEED this bill passed!
If you want to find your federal reps/sens, the links are in here:
https://www.agingcare.com/discussions/suggestion-to-become-active-in-promoting-caregiver-help-not-a-question-463299.htm
Is your Mom in the MC unit of the rehab facility because of the falls and is she still participating in rehab? Do you think she will progress to the point where she is safe to return home? If you have any doubts at all, I suggest requesting a care conference with the nursing staff, social workers and a rep from rehab to discuss your Mom's prognosis so that you can make plans.
Wishing you peace on this journey.
We keep her at home with my dad, where they both desperately want to be. We have home health care workers, who come in on a scheduled basis during the day ( 10 am - 3pm and 5 pm - 9 pm), to help when family can not be there. My mom uses an electric wheelchair. We assist her to transfer from the bed to the potty each morning, and then bathe and dress her and assist her from the potty to the wheelchair. She is fine throughout the day - eats meals prepared for her, watches tv a little, goes outside for "walks". We did have to install fences and gates to prevent her from wandering in her wheelchair. Before that, we couldn't let her out of our sight for even a minute or she took off! Several times, we were chasing around looking for her. We get her cleaned and changed after dinner and help her transfer back to bed. She stays in bed all night.
Her anxiety does kick in when we bathe/clean her and change her underpants - she feels violated, but will not do it herself. Those 2 times a day are our only tough parts of the day.
My father is happy to have her at home with him and she is happy to be in a place she is familiar with - although she does say she wants to "go home" frequently. Other than that, it works for us. My dad does not want to be without her, and he does not want to move into a facility. They do not have long term insurance or qualify for monetary aid, so he would have to pay for care either way.
Dones that matter where they move her to, she will always try to get out if her chair and leave because it isn't where she's use to being and all places are understaffed.
All that will happen is they'll drug her up Iike a zombie to try to keep her from getting up and the drugs will cause other problems and she'll die sooner.
Bring her home today.
Sign up for Home Health Care.
The Therapist will come to your house.
The Aide will come to your house to bathe her.
They will send a Nurse to the house to check on her.
If your Dad was in the Military, check with the VA and they will give up to 30 hrs a week for Caregiving in the home.
Prayers
Nothing is your fault so don’t feel guilty. It is just life and it happens to all of us.
Things to consider:
If your mom remains unable to walk, do you want to care for her at home?
If so, talk first to her physical therapists and then her doctor(s) about assistive devices she will need to help move her from bed to wheelchair to toilet... You can also request some sessions with physical therapy to learn how to safely move your mom and use all assistive devices. Insurance should cover most of these costs.
What living care arrangements do you want for your mom and dad if mom can not live in your home?
Most patients with dementia progress to a point that it is extremely difficult to care for them at home. Either they become immobile and family can't handle the work, or they get days and nights mixed up and upset everybody's sleep routines, or they become easily agitated and may hurt others.... The usual is that the person requires more care than the caregiver can give, In these cases it may be best to move the person with dementia into a memory care unit. I know of facilities that allow husbands and wives to share the same rooms - which may be of great comfort to both your parents. Sometimes, the person(s) with dementia experience a lot of anxiety as they adjust to a new environment and new routines. In these cases a mild anti-anxiety medication may help ease the transition.
People in MC are going to have a huge range of emotions and things won’t make sense. Perhaps it’s time to look for a facility where your dad can be closer to your mom. Look at the Medicare website where they rate facilities. There might be a better one around and where your dad can be close to her.
I am sure they miss each other.
It would give mom a person she is familiar with and she knows is safe.
Your dad would feel better with her.
I bet there would be fewer calls from mom with dad there.
By the way I think my Husband had Vascular dementia with Alzheimer's and there were times when overnight he would not be able to do something he was able to do the day before. Walking was one of them.
Generally (but of course you'd have to check with the facility) it doesn't cost twice as much if a couple is in MC together - certainly more than one, but not double.
If you try this and they seem to be okay there, then make the move permanent? You can still visit, maybe take them out on occasion (perhaps wait until they seem more settled), and they might do better if together.
Where my mother was, a man was moved in and his wife, who'd been in AL elsewhere for physical disabilities, moved in with him. It didn't appear that she had dementia, but it kept them together now that he needed oversight.
How's your mother's mobility now? Are they still working on it?
Was your Dad able to go with you to visit?
Give Mom a hug & say you miss her but The Doctor says it's best to have a few more days there. She'll be just fine -encouraging smile 🙂.
Keep your tears for on your own if you can. This is hard!! But you've got this (((hugs))).
It isn't you, and you've done nothing wrong. Try to roll with the daily punches and don't overthink things. Is she going to come home, or is MC where she'll be permanently? She'll settle in there eventually, or if she comes home, know that she may still be kind of scrambled for a while even there. They have a tougher and tougher time bouncing back after each crisis, I'm afraid.
Hang in there -- you're doing a good job.