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Hello again, my Mother is in last stage dementia at a SNF and now unable to eat, talk or walk on her own. I don't think she can sit up in a wheelchair even. She has declined fast after a couple strokes but now has stabilized.


My Father visits her everyday and desperately wants to bring her home. He is in his 80s and in good shape but I don't think he can handle all that comes with having her home. I live too far to be much help but I'm worried I will get dragged into all the problems of having her home. He seems to think that if he brings her home, she will be better taken care of but I'm highly skeptical. Also, once we get her home, even if things are going badly, he won't allow her to go back to the SNF. He won't listen to anyone and thinks everyone is an idiot and he knows best. It's actually such a struggle because he cares so much about her and can't accept that her end of life may be near.


I feel guilty for "giving up" on her when he thinks she will go back to normal with some changes.


Any advice on how to make the best decision without alienating him? I feel like I'm in an impossible situation.


Thanks!

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I can relate to your Dad. I am a healthy 82 year old, and I have been trying to take care of my wife at home for a long time. I finally had to get some help to come in, but the constant caregiver was really wearing me down. About three weeks ago I had to call an ambulance for her, and at the ER they found her with UTI and sepsis. After some emergency procedures they got her stabilized. After 8 days in the hospital they discharged her to a skilled nursing facility, where she is now. I have decided when she gets discharged from the skilled nursing facility she has to go to an assisted living facility. I made this decision not so much for me (although I know it will be best for me), but because I realize I can no longer take care of her. It turns out that she almost died because I did not recognize how sick she was. I do not want to risk her life by keeping her at home. She will get much better care at a facility than I can give her at home. I’m doing it for her, not for me. Tell your Dad is is putting your Mom at risk by trying to do it himself.
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sp19690 Feb 2022
Assisted living is for people that only need minimal help. Depending on what your wife needs assisted living may not be an option.
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I am sure he sees mom in bed, quiet and clean, dressed and peaceful.
What he does not see is the staff come in before he gets there and strips off the clothes, the bedding, removes her soiled brief, cleans her ( bed bath or if it is a shower day maybe get a Hoyer Lift to bring her to the shower room) then bring her back to the bed and dress her, and maybe run a comb through her hair.
I am sure when she needs to be changed they ask him to leave the room.
He does not see all that they do to care for her.
One other important thing...
He is grieving. He has lost what is probably the love of his life, his partner. A part of him has been lost as well.
Some facilities have support groups you can ask if the SNF has one.
If mom is on Hospice you can ask dad to talk to the Social Worker. Then later they have a Bereavement Support group that he can take part in.
(If mom is not on Hospice you can ask about that, it will be another set of eyes on her and since the Hospice will have fewer residents to care for I think she will get more attention and care. )
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Tell him to have a test run at the SNF for 2-3 weeks:
bathe her every day and wash her hair a couple times every week,
change every wet and soiled diaper,
change the bed every day and after it gets soiled or wet,
feed her every meal and make sure he eats 3 meals a day,
help her into and out of wheelchair, commode, shower chair... every time,
roll her from side to side in her bed every 2 hours to keep her from getting bedsores,
make sure to only sleep for 2 hours at a time every night (since he needs to change her position every 2 hours),

In addition, he needs to cook every meal for himself, clean the house a couple of times every week, do laundry every day (laundry will pile up if she comes home), do yardwork, do shopping while using a wheelchair....

He will get a better idea of how much work this will be. His longing for her will continue but he will probably see that the current arrangement is the best one.
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lealonnie1 Feb 2022
That's a great idea!
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A Nursing home cannot release anyone "unsafely". Your Dad would need to show that he can provide the 24/7 care that she would need. The home is handicapped accessible. So, you may want to talk to the DON at the facility to make sure they are aware of what he thinks he can do. Maybe a SW can talk to him about how him taking Mom home is not feasible.

I too think there maybe some cognitive decline going on with Dad. Sounds like it may be time for Hospice to be brought in.
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againx100 Feb 2022
Excellent idea to let DON know that you do not think Dad can possibly manage her care at home.

Agree that he may be having his own decline.

If not on hospice, could be helpful.

Good luck!
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To be awfully blunt, do you think Dad wants her at home when she passes away? With him by her side?

Sometimes asking tough questions can gain very good insight.

Ask the SNH what end stage options looks like. Can Dad stay if he wished? All day, all night too?

He may not be able to get her home, but he may still be able to be with her 💙 (((hugs)))
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I too am concerned your father is suffering from some level of cognitive impairment himself if he is unable to understand the scope of care his wife requires if she were to come home! He's thinking with his heart & not his head, which is also understandable b/c he's watching his wife deteriorate before his very eyes. I'm watching my mother do that very thing & it's horrible, truthfully. I do realize, however, that I could never perform the duties that an entire team of caregivers and hospice nurses perform for her on a DAILY basis, which is why she's in Memory Care Assisted Living the past nearly 3 years. Just the fact your mom is bedbound would make changing her briefs a big job for your dad!

I really like Taarna's idea about arranging a trial run for dad at the SNF, if they are agreeable to working with you on it.

Also, get hospice involved and see what they think. The chaplain is a good one to speak to dad, along with the nurse, about what all is involved with the care of an end-stage dementia patient at home. Reality vs. fantasy is a big wake up call!

I'm so sorry you're going thru such a thing with your folks, and that dad is in such a position to begin with. He wants to be the savior for mom and that's not likely possible, I'm afraid. So sad and so tragic what dementia does to the entire family, I know. Sending you a hug and a prayer that this all works out, somehow.
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Can you arrange for a doctor he trusts to have a blunt conversation with him about the realities of the situation? It may go better coming from someone else, someone dad sees as a “professional” I watched my dad visit my mom twice a day everyday without exception in a NH for four years. It became his life and he never stopped missing the wife he had, even in the years after she was gone. I really grew to respect how deep the bond between them was. But dad had no illusions that he could handle her care in home. Hopefully someone can convince your dad that his wife would likely do worse in home, even a bedsore could hasten her death. Hospice services can also help, even with some counseling for him. They’re very good at doing that without it being formal counseling. I wish you all peace
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atl1977 Feb 2022
Thank you. Great idea about counseling. I don't know that I can find anyone he actually trusts unfortunately but maybe a counselor can help get through to him.
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Your father's ability to make decision is obscured by his emotions and love feelings towards his wife. He is using denial and wish-thinking. Not at all realistic. You're more objective, therefore your decision should prevail. Alzheimer's is progressive and there is no way your mother will improve by coming back home.
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RedVanAnnie Feb 2022
There are types of Dementia that are not Alzheimer,'s. Most are also progressive.
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Providing the best care doesn't mean that care is at home and certainly not by an unqualified, overwhelmed 80-year-old spouse. By leaving Mom in the SNF, your dad is freed up to do what he does best, which is loving her.
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atl1977: Imho, perhaps your father suffers from some cognitive impairment if "he thinks she will go back to normal with some changes." Unfortunately, that will not happen since you state that your mother has last stage dementia.
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