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My mother has moderate staged dementia and refuses in-home care and help making sure she takes her medications correctly. She claims nothing is wrong with her and that she has sense enough to read the medicine labels and take them accordingly. Before and especially since we hired 24-hour in-home care, she has verbally and a few times physically abused my father for not making “those people” go away. Because she did not take her medications properly, she developed large clots in her legs and had a vascular procedure. To move her to an assisted living facility, we told her she needed “rehab” post surgery. She has no memory of the vascular procedure, claims she has seen no doctors since she has been in “rehab”, and claims that she can take care of herself. Daily, she cries and begs to go home. When my father visits, they both end up crying the entire visit and calling me begging to let her go home. When I visit, I find her stretched across her be, crying and fretting in fear that she has been abandoned to die. She has no memory of any of our visits. Sometimes, I wonder if I should let her return home as long as she has 24-hour care and directed medication. It didn’t work before, though. Sometimes i wonder if she would be better if my dad moved in with her. There is room for him with her. BUT, even though my dad has dementia at the moderate stage, too, he is not as far along as she is, and he is NOT able-bodied (many, many falls and can hardly walk), he vows he will never move. I thought this arrangement would provide a bit of a reprieve, but it has only increased my own stress. I get calls at work and at all hours of the night regarding her behavior (running the halls and screaming that she must go home), and sometimes, the facility says they want me to talk to her to try to get her calmed down. I don’t know what to do.

Your parents both now have dementia, and it is clear, whether due to her recent surgery/hospitalization or not, that your mother has progressed well beyond the moderate stage. Your father is in danger if he is alone.

Your mother first of all, does see you and father, when you visit, as her "means of escape" and as her "saviors". When it becomes clear you are not she cries and mourns and to be honest, she has a right to, and this is WORTH mourning. IF this is continuing when you are not present she needs MD assessment and medication. If not, the allow her to mourn as she adjusts, keep the visits short, visit a bit less so that she CAN adjust to what is now her new world.

Things WILL come to a head with your Dad. He will fall. He will survive it or he will not. He will require placement. You can act now pre-emptively, or you can wait. There is no perfection in end of life decisions and that's where you are.

I am so sorry. You are dealing with BOTH of them and with the approval, the assessments, the financial aspects. I cannot even begin to imagine all you are going through. Again, I hope you will find an answer, but they now need to be in care.

THIS IS NOT A HAPPY TIME.
YOU are not RESPONSIBLE for their happiness and cannot create it.
This is a very SAD time in life and will have to embrace that and walk this walk within it. I am so very sorry.
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Reply to AlvaDeer
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Mdellis Dec 22, 2024
My dad has the same 24-7 caregiver that my mom rejected, so at least he has help at home. He will have to move soon, though. Thank you for your thoughtful response.
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I think it would be a very good idea to move your father in with her at the AL. Especially if he has dementia and needs care himself as well.

I worked in a nice AL some years ago. I saw personally myself residents who did very well in our facility. They had active social lives, took part in our activities and entertainments, ate well, and were living their best lives. The second a family member called or showed up, the 'performance' started. The crying, begging to go home, the miserable complaining, and often the lies about such things as them being starved, abused, and imprisoned. The show was usually over as fast as it began when the family phone call or visit ends.

Talk to some of the aide staff at the AL. They are the ones who interact with the residents the most. Ask them how your mother is when you or your father aren't around. You might be surprised.

Don't bring your mother home because even with live-in care, she has serious dementia and your father has mobility issues and dementia himself. Homecare would not be the best option or them. I worked in homecare for 25 years and have an agency now. I would not recommend you move your mother back home. Move your father to the AL. Ask your mother's doctor to prescribe her medication for anxiety and depression. Some may come in liquid form that can be put into her food and drinks without her even knowing and it will help.
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Reply to BurntCaregiver
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Nothing. You should do nothing. There is nothing you can do. NOTHING will help. Period. Period. Period. Do not even try. You'll only frustrate yourself and be frustrated with her that nothing is helping. Shorten your visits so you're not emotionally draining yourself. You still have a responsibility to take care of YOU. Your responsibility to take care of ANYONE starts with YOU, FIRST and always.
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Reply to mommabeans
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Shouldn't your Mom get medication for her agitation and screaming?
She is suffering and needs calming meds.

The facility shouldn't be calling you at all hours about her "behavior." They are being paid to handle it. This is very unprofessional of them to try to make YOU handle so much stress.

How does Dad manage to visit her? He obviously finds a way. Both of them are very stubborn and you can't reason with people with dementia. Why does Dad need to be "able-bodied" to live there?

I'd make it clear to the facility you think Mom needs calming meds, she is suffering and it is cruel not to keep her calm.
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Bulldog54321 Dec 31, 2024
Exactly. What exactly do they want OP to do about her demented mother’s dementia behaviors?
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I hope your mother is in Memory Care Assisted Living and not regular AL? She belongs there, and she needs meds to calm her down as well. Antidepressants and anti anxiety meds like Ativan helped my mother stay calmer in Memory Care, thankfully. She needs to know she's there under doctors orders and needs to stay there.

Anosogonosia is a condition where an elder with dementia cannot understand or recognize their own disorder. They will never acknowledge their dementia or admit their deficits. My mother was "perfectly fine" until the day she died at 95. There was no telling her otherwise. So it was the doctor (who was a "dirty liar") who ordered her care in Memory Care Assisted Living.

Taking her home is a mistake because the same issues she had before she will have again, only worse, as the dementia progresses. It's not a bad idea to have dad move in with her, imo. It's just a matter of time before he requires more care himself.

I'd stop taking calls at work and after dinner. One call a day is sufficient from mom.

Best of luck to you.
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Mdellis Dec 22, 2024
Thank you so much for your thoughtful, supportive response. Do you have suggestions for how to get my dad to move in with my mom? The land where he had the home built for our family in 1965 has been in his family since 1787, and he has deep ties to it. Convincing him to leave it will be extremely difficult.

We finally convinced the assisted living facility to give my mother lazorapam every 8 hours (instead of after episodes of frantic anxiety had begun) to get in front of her anxiety, but now she sleeps through most days.

Yes, she belongs in memory care, but this facility only had o e assisted living suite when we inquired.

The ultimate goal is to have both parents there, and I thought that my dad would decide to move in with her on e he began to miss her. He says he cries himself to sleep every night, but that is not changing his determination to stay at home until he dies. He also, on some level, may be enjoying the distance from my mon’s cruel ire.
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Just a thought. You might have some remodeling done to father’s house. That would give an excuse to move him out “temporarily “. I’m just beginning my journey with my wife’s dementia. Keeping her home as long as possible. I am so Thankful I found this forum! May God bless you all!
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Reply to Samjam
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I wonder if you could arrange for F to rent out his ‘special’ house, just for a while so that he can move in with M? Say to F that you certainly don’t want him to sell it, it needs to stay in the family, but the most important need right now if for M to get settled. Say that her moving back home is just not possible – he can’t care for her, neither can you, and surely he doesn’t want strangers living in the house with him around the clock? She really needs him with her, plus all the care she can get.

If that works, it will give you a break to sort out the future. Worth a try?
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Mdellis Dec 22, 2024
Thank you for this creative and helpful idea! I will try this.
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She is anxious, agitated, and upset. She needs help relaxing in a world that is clearly difficult to understand - from her perspective. She is in a place that can provide consistency in routine and environment. Those are things she needs with her dementia. What they can not provide is whatever she remembers that makes sense to her - from her memories.

You and the rest of the family can provide photos - probably best in photo albums with simple captions. You may also be able to provide her things that you know she loved throughout her life. Continue telling her that she needs rehab as a way of helping her remain in her new home.

Ask her doctor for medications that can help her to relax. With anti-anxiety medications, she will be easier for the staff to handle. She will also be more relaxed during visits.
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Reply to Taarna
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The Assisted Living Facility wants you to talk to her and calm her down?

Perhaps she is not in the right place. Do they specialize in memory care? There is no talking and reasoning with a dementia patient to calm them down.

Of course she's depressed and stressed. I would be too. She doesn't understand her condition, doesn't remember, and she likely is there to die, unless you think this is a short term placement and have another plan for her.

I think it would be good for her husband to move in with her. And bring some comforting items from home, so that this feels more like her home.

Unfortunately for your mother (and your father), it is no longer their decision.
You, or someone with POA will have to make the choices for them. You can only try and make the best choices you can. It's ok to make mistakes along the way, and to change course as you navigate this difficult time in their life.

Talk to her doctor about your concerns.
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Reply to CaringWifeAZ
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So, so hard and heartbreaking. Folks here are offering such grounded, kind and experienced support. I can only add that I know how hard and powerless this feels. Hang in there. You are a good daughter or son. You are keeping her safe. Her anguish is not your fault.
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