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CJ1965 Asked September 2021

My dad is 88, dementia, memory care. It's a prison. Stays in bed all the time. I've stopped visiting because it's too depressing. Am I bad?

Riley2166 Sep 2021
When people get like this, there is nothing you can do. And if it is depressing to you and affecting you negatively, then the best thing you can do for you and your own peace and sanity is stay away. He has lived his life and you have a right to live yours in peace now. I am a Power of Attorney for someone who insists on staying in bed 24/7 except to eat a meal. Nothing works, no matter what or who or when or why. So, she has made her bed and let her lie in it. Stay away.

JoAnn29 Sep 2021
I am going to answer Cover99 here and further down CJ.

Yes, being near nurses and aides does give them some socializing. The aides dress and bathe them. A very intimate thing. I would hope while doing so, they are interacting with them. Nurses, don't deal with the patients as much. They mainly man the Nurses station but do med passes, woundcare and shots. My daughter is an RN and did woundcare. I know for a fact she interacted with the residents because of stories she has told me.

I felt my Mom was better in the AL. At my house there was not much to do. She was entering the last stages of her Dementia. TV was the only thing she had and really was not all that big on it. She rather read but lost the ability. At the AL it was one floor and she could walk the hall and always come back to the common area. They had activities and entertainment. Always a Birthday or holiday party going on.

Both in the AL and the NH aides and Nurses took time to sit with Mom and talk with her. I guess her kindness came thru even with the Dementia.

CJ, not sure what to say. The MC should be trying to get him to join in as much as possible. At Moms NH they had Geri chairs that they could bring residents out to the common area when activities were going on. Or family wanted to visit. They kind of reminded me of infant car seats for adults. The only time I sat with Mom in her room was when she was on Hospice and was actively dying. Otherwise, she was always in the Common area where it was bright and things going on. They had an area with a big Gazebo you could sit in. The residents who could, planted flowers and vegetables.

Can you see if there is a way to visit Dad outside his room? Maybe Dad needs more care than the MC can give.

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lealonnie1 Sep 2021
The question isn't whether you're 'bad', but is the quality of care at dad's Memory Care ALF 'bad'? Is dad on hospice care at the ALF? If so, and he's unable to get up from his bed, then that's the situation you're both faced with as he's approaching the end of his life.

If dad is not under hospice care, he should be gotten up out of the bed every day, helped into a wheelchair and brought out into the activity room area to socialize with the other residents, as is the rule at my mother's Memory Care. No resident is permitted to stay in bed past 9:30 am unless they are sick or under hospice care. Otherwise, they isolate and shrivel up, so to speak, w/o interaction with others. Speak to whomever is in charge of the Memory Care & demand your father be gotten up out of the bed every day if he's not under hospice care.

I agree it can be depressing to visit a loved one who's suffering from dementia, as it is for me to visit my mother. I make it a point to go there every week and to bring her photos of her great grandson and a new blouse or a special meal so there's something to talk about. If your father is alert enough to know that you are there for a visit, see if you can find a distraction to bring along with you when you go and keep the visit short. Hold his hand & tell him you love him; I used to rub my dad's forehead when he was dying and in bed all day long, just so he knew I was there and could feel my touch. I think he knew I was there, but I can't be sure. I did it more for ME than for him, really. Do what you see fit to do, and what you feel comfortable with. You're not a 'bad' person so don't put that label on yourself no matter how you choose to handle this matter.

Wishing you the best of luck with a difficult situation
Cover99 Sep 2021
Does being near the nurses, watching tv count as socialization?
LoopyLoo Sep 2021
My husband’s grandmother was in a lovely assisted living (AL) place. Very clean, always smelled fresh, nice staff. It was more home-like than a facility. It was a place I wouldn’t mind living in myself! Even so, she called it “jail” and complained.

I think some elders are just so dead set against ANY living arrangement that they don’t select. Grandma would have loved to keep living alone as usual… and she likely would have died within two months. Dementia, constant falls, barely eating and was 90 lbs. She gained a little weight and never once fell in AL.

ALVISE Sep 2021
NO

AnnReid Sep 2021
Does Dad enjoy your visits, brighten when you appear, ask you to stay longer, engage in your attempts at conversation?

A lot of what happens in MC is depressing. Not always everything though. Have you inquired about any participation in activities, whether he gets out of bed, maybe to eat or use the bathroom, when you’re not there?

Where I live, Medicaid supervision is pretty strict. It might be better than his life is now. Don’t spend you’re own money on your father’s care.

Are you taking good care of yourself? You’re in a tough situation, and you need to be sure you’re doing good things for you, as well as your dad. Ask whatever questions occur to you here, when you need to. Most of us have experienced the issues you’re experiencing in some form or another. We know you’re doing your best.

Grandma1954 Sep 2021
Make your visits during a time when he is participating in something.
Visit when he has lunch or dinner. If you can have a meal with him.
if they are going on an outing ask if you can go with them or meet them where they are going. (when my Husband was in Adult Day Care at the MC facility on Fridays they would take them for lunch I would choose the places that I thought he would like going to and on those days I would go with them so I could help out.
Or when you visit take a walk with him either around the facility or if they have an enclosed yard sit with him outside.

Final question for you...Are YOU describing MC as a "Prison" or is HE describing MC as a "Prison"?
There is a distinct difference. With dementia your world is small, your "safe space" is limited.
For YOU to be confined to a particular confined space would be like a prison.

Is HE describing it as "depressing" or are you saying it is depressing because you are thinking of your dad as a "whole healthy" person and you are confronted each time you visit with the reality that he is no longer the person he was in the past.
If this is the case try to adjust your thinking and appreciate the dad you have today because tomorrow, the next week, the next month there may be a new reality, a different dad.
That is not always a bad thing but it is a sad thing.

MJ1929 Sep 2021
Talk to the administrator and see what can be done to get Dad up and involved to give him some mental stimulation and socialization. (Of course, if he can't be gotten up, that's another thing.)

Is it Dad's fault the place is depressing? I doubt it. Try to pull yourself together and visit. Think how he feels about being abandoned.

Are you bad? No, you have legitimate feelings. Are you required to give in to those feelings? Again, no.
LoopyLoo Sep 2021
The OP did not “abandon” him. Sheesh.

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