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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.

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So this may not be what any of us want to hear stuck in the thankless and everchanging world of being a family caregiver, but do not keep her hospitalized if indeed there is no more rehab they can do for your mother. If they are ready to discharge her do not delay it and bring her home, trust me it is better for all of you to start the transition process home when she can no longer benefit from a facility's care.

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.....
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IF they have the funds, can they both be put into MC that way, like you say, more eyes/aides to help out. Of course she is going to ask to go home, but that doesn't mean she should go back home. And if they both can go in together, some places will put husband and wife in same room. that way they are together. I wish you luck.
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The "words of wisdom" can only be found in the Bible.
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disgustedtoo Jul 2021
Gee, funny that I entered "words of wisdom" into Google Search and was presented with TEN pages of responses... So far most have nothing to do with the bible. There are plenty of words of wisdom that one can find when living an enriched life. You can stick to your source, but there are plenty of other sources of WISDOM.

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Imho, the ability to walk may be lost with dementia. Perhaps once you had the "pleasant visit" with her, that could have triggered a longing 'to go home,' but of course she is there for a reason.
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She has serious mental and physical issues and YOU are not going to be able to fix them. It will only get worse and my advice is to place her where she is cared for. As to your father, if this is affecting him, and it well might be doing that, there is not much you can do. Would you consider placing both of them together for safety and companionship. I think it is time for you to consider that. I feel this is going to be too much for you and then what? Will you join them?
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They insist that even partial bed rails are restraints now, but if you can convince them that she needs the partial bed rail in order to turn over, they will allow it (that’s the way around the rule)). Also insist that her bed be lowered to the ground at night.
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So, what happens to people when there is no way to care for them? Not everyone has family. Do they become homeless?
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disgustedtoo Jul 2021
If there's no family and the person/people cannot care for themselves, the state steps in and finds a place (NH typically) for them.

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
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Yes, it is possible that they can forget how to walk overnight with some forms of dementia. Watched one of my favorite residents (a former professional dancer) dance her way down the hallway to an activity one afternoon. Went to bed fine and woke up the next morning unable to walk..... had forgotten how. She did rehab us for a few weeks but didn't dance down our hallways again.

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.
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Ok I just went through this.get bed rails so she can't get out of bed on her own.my Mother-in-law went from wheel chair to bed after surgery.get a rail toillet Seat for the toilet so she can go from chair to toilet if she's able.
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The same thing happened to my mom, who has Alzheimers, 6 years ago. She did fall in the bathroom and from that point has not walked again. We tried rehab for 3 months, and had physical therapy at their home, but in her mind she can not walk.

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.
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Riley2166 Jul 2021
In cases like this, they may not have choices and will need to be placed. Please check out all the options for Medicaid. There is help but you have to find it. I don't think people like this should remain at home.
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Things that may help. Anxiety medication, bed and chair pressure alarms and an electric recliner which when reclined is difficult to climb out
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If your mother can still read and understand what she reads, perhaps a note can be put somewhere where she'll see it while sitting in wheelchair, that warns "DO NOT TRY TO GET UP--CALL [or WAIT] FOR HELP!" or a similar message.
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It's so sad when these downward changes occur. Inevitably, eventually things cannot go back to the comfortable "normal" It sounds like Mom needs to be in a suitable facility It also sounds that, if possible, mom and dad should be together. If they cannot be in the same room or unit, perhaps they an be in the same building or complex and can visit. Decline and the necessary adjustments are hard on everyone.
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Proyally not what you want to hear but the absolute best place for mom is back at your house with hubby, where she has been and where she feels loved and safe.
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
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Riley2166 Jul 2021
And if you have her at home, prepare to give up YOUR life. It is your turn to live now - she has lived her life.
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Life is not a journey, but an ordeal. Medical science keeps people alive longer and longer so Alzheimer's disease has its chance to culminate to its fullest with no cure in sight. Life itself is a terminal illness with only one outcome--death. It is the price of being born, and there will be a time we all must die. The price of love is grief. Go to an eldercare attorney and do estate planning, DPOA (if not already done), prepaid funeral/cremation arrangements, and share bank accounts so you can pay their bills with their money, while you can, and will.
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Elders also go thru something called “hospital delirium” which is acute anxiety, a worsening of their cognitive functions, inability to sleep, no desire to eat, when they have big changes like hospital stays or are moved to an institutional setting. The constant lights, sounds, interruptions to routine and all that was familiar, really does a number on their already broken brains. Some recover abs some do not. Some seen permanent and marked decline.
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FarFarAway Jul 2021
yes! that is what I thought when I read she suddenly couldn't walk. Exact same thing happened to my dad and the hospital stated he would never walk again. My mum ignored them and brought him home, now we wish he would sit down for 5 minutes. No miracle happened, it was delerium.
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Your mother needs to be itied down in her bed and wheelchair for she won’t fall out.
Nothing is your fault so don’t feel guilty. It is just life and it happens to all of us.
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Lostinva Jul 2021
Illegal to tie them in bed or w/c. They now put alarms on the w/c or bed. My mother kept getting out of bed & falling. They put a special mattress on her bed that has higher sides so that she is down in the center & she hasn’t gotten out since. Also, bed is always in lowest position.
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Try to see this from your parents' perspective. Things have changes dramatically and their usual environment and routines have been upset. They both want a return of their usual routine and environment. Those routines create a feeling of safety in a world they do not always understand. With all the changes, they feel anxious. The anxiety leads to agitation and sometimes to acting out.

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.
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Lostinva Jul 2021
Would the home be able to accompany both of them & put in same room? They’d be together & less anxiety on everyone. There’s always that adjustment period but my mother now calls her room her apt. Fill their room with memories, things they enjoy & lots of pictures!!!
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Not sure what advice you are asking for here, but my mom kept falling at her facility. After discussing the problem with the staff they changed her evening routine to what she had always done. Wash face, brush teeth and hair, etc. And they would crank her bed down as low as it would go since she couldn’t stand without help.
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Thank you all for the kind thoughts and responses. I’ve thought about both of them being there together; it is definitely something I will inquire about. Mom is still unable to walk and it seems that MC may be permanent. So hanging them there together might be in the near future if deemed possible!
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It’s so easy to get caught up in the world of caregiving with its crisis management, unexpected and unpleasant behavior, logistics and on and on. But beneath that there’s also grief, the depth of which depends on your relationship with your person. This is a part of caregiving but often the last aspect ever considered or addressed.

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.
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I don’t have words of wisdom on this but I’ll pray for you and ask God to give you the wisdom and strength you need! God Bless you and family!
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Since dad also has dementia what is the possibility that he could move in with 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.
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The administrator asked you to pick her up or your mother asked? If it’s your mother, just ignore that request. If it’s administrative, you need more notice & reason they want her evicted. Hugs 🤗
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I'm so sorry for what you're going through. It sounds like the best place for your mom is the MC facility. If it's possible move your father there too.
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If the prognosis is that mom needs to stay in MC (sounds that way), why not move dad in with her? It might help her to "settle in" if her husband is there too, and it will help his missing her.

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.
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Crumbs.

How's your mother's mobility now? Are they still working on it?

Was your Dad able to go with you to visit?
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Is Dad mobile? Can he visit Mom? (Make them short & sweet) Bring her flowers, like a date 😍

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))).
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Mom's been in not one, but multiple new surroundings in just a short time, and those changes are always extremely hard on dementia patients. Any time they have new surroundings they tend to get panicky.

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.
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