What to do about healthy father?

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What to do about healthy father?

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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!

Alzheimer's & Dementia Care Decisions Family Caregiver

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Can your father afford to hire 24/7 aides at home?

I'm concerned that dad may be showing signs of cognitive impairment if he thinks she is going to "recover" from a life-limiting illness.

Does he have a pastor or doctor he trusts?

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He can afford it but thinks insurance will cover all the expenses and will likely cut corners when it's on his dime. He thinks she needs 12 hours help at most but wouldn't they need to be changing diapers at night to prevent bed sores? In addition, even if we get help, if that person quits, I worry that there won't be a replacement quickly and things will deteriorate fast from there.

Nobody left that he trusts unfortunately.

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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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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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is there an assessment that can be done in his home to show what all the problems and expenses there will be with having her home?

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The Area Agency on Aging may help, the NH likely has management staff that can help, a Medicare planner may help also. Others may have more ideas

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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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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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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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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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There are types of Dementia that are not Alzheimer,'s. Most are also progressive.

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I agree with JoAnn. SNF is a mandated reporter for unsafe conditions of vulnerable adults, so get someone there to speak with your dad about what a discharge would involve. This doesn’t have to be just on you, and he may more easily accept the reality from the social worker, case manager, or director there.

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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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His intentions aside, there is zero chance that he can care for her at the level she needs. Not only that, he may be in good shape now, but into our 80's that can change very quickly, especially if he injures himself moving her around. I've seen this before where acceptance is just not an option. But for her benefit and his, there is no chance that bringing her home is a good idea. He will most likely do the opposite of his good intentions and hasten her end. Good luck and make it clear that if he does make this bad decision that you strongly disagree. It's really all you can do except for decisions on your level of involvement if your mom returns home. I just don't believe he has a clear picture of the amount of care that she will need.

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Once in last stage of dementia she will qualify for Hospice if her doctor feels she has less then six months to live. If she has Medicare/Medicaid, it will cover the expense of having someone available (not in the home, but on call) full time. Mom can also receive Hospice care in SNF (which would be the better option). She could be released to go home for her last days if criteria is met for her to leave. But dad needs to be aware of all that this entails, and the anguish of watching her deteriorate 24/7.....since she will never "get better". It's a big step, and as always in life, be careful what you wish for. Good luck, I hope dad will understand that you are not "giving up", but only trying to make a heartbreaking situation somewhat bearable. It is a grueling task to take on the responsibility of end of life 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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That's a great idea!

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I'm sorry to hear this. Imo, your dad is in big time denial and blinded in my opinion by his emotional ties. In order to be a caregiver, you've got to step out of the emotional mode and do what is safe & best for the Patient AT.ALL. TIMES. If he thinks he can care for her 24/7 365, perhaps he should see a Dr himself, get checked out and have it explained to him what exact level of care she would need now and into the future. He might be able to do the job for 3-4 days at best before needing help. I think he's tired of going back and forth and he's lonely. Please don't let him do this. She is safe and has better care than he can provide. Don't let yourself get sucked into this vacuum. Good luck to all of you.

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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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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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So sad, she is in the best place and it would be terrible to take her home. She needs round the clock care which is something an 80 year old cannot give.

The care home will asses the situation and may not allow your father to take her home. When this stage comes professionals have a duty of care for their patients.

my mum needed a team of carers in the final stage.

your poor father is under the impression that it isn’t the illness that is making her decline but the treatment in the care home, if only that were true.

I would speak with the manager of the care home about your concerns as I don’t think your mum would be allowed to be moved.

Get a doctor to speak with your dad, some people of a certain generation respond better to men in white coats than adult children telling them what to do.

Sending hugs to you in this difficult time, it truly is a horrible disease x

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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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My parents in law moved together into a nursing home that had double rooms. FIL was in the best shape, but almost immediately he tried to do too much. He fell off his scooter that he could still drive, and died 3 weeks after the move. I’m not suggesting that his death was what you are looking for, but it gives a couple of ideas. First see if the facility would take him in too, and second make it clear that if he too tries to do too much, he is also at risk and may leave MIL on her own completely. MIL lived another 10 years!

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Any choice that does not involve bringing his wife home will alienate him. It is his wife, of course he is going to be emotional. You just have the accept that and hopefully with time your father understands.

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We don't all get what we wish for - sometimes it is just simply not possible. He has to "grow up" and start realizing this. The fact that he can't or won't tells me he is heading down the dementia route and will soon join her. Do nothing. Leave her where she is.

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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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ATL, another question/thought for you & for Dad..

"desperately wants to bring her home".

This statement is all EMOTION. Is there any real intention behind it?

Or does it actually mean something else? Eg I desperately want her to *recover/be well*.

Atl, have you taken Dad's *want* as his actual intention? Or even as instructions for you to make happen?

Meeting such an emotional statement like this with an emotional reply may help.

"Yes I want that too. But it's just not possible". (((Hugs)))

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Do NOT, no matter what, bring her home and think your father could handle her. If he insists, why not have him move into the home where she is and let him handle it all - he will soon see what is involved - and perhaps he might stay there with her. DO NOT GIVE IN.

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Why given the facts would YOU feel guilty? Your father is the guilty one for not having the brains to see the facts. Nothing will get better, only worse. Have a doctor tell him (not you), this is unacceptable - she needs care and placement. Let them handle this and you stay out of it.

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What to do about healthy father?

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