How to tell mom she has to go to long term care?

Hi. We are going through something similar with my father who is 96 years old. A 24/7 caregiver has been living with him for over 4 years now. She is very good and my father is devoted to her. Unfortunately, we have now exhausted all of his financial resources to pay for her (it costs over $10,000 a month) and my siblings and I are now sharing the cost, however, we cannot continue to do so. None of us are wealthy. We have no idea how to tell our father that he will have to go to a nursing home. He is unable to live independently and would not even be a candidate for assisted living. He has had a number of strokes and as a result he can no longer read or write. His verbal skills and minimal, he has Parkinson's Disease and is therefore not steady on his feet. He also has macular degeneration and therefore his eyesight is very poor. He requires assistance with bathing, preparing his meals, bathroom issues, etc. We feel that once we put him in a nursing home we are basically sentencing him to death because we do not believe he will be able to live.

Have you made any decisions about your mom and how did you talk to her about it? Any help is appreciated.

Diane

Honesty, gently said and then a stiff backbone on all the players.

My MIL went into care the last week of her life. The kids were exhausted--beyond exhausted--and the day they moved her in to the ALF, they all commented "We should have done this 5 years ago".

As it was, they simply sat her down and told her that her care was killing THEM and was simply unsustainable. She cried and carried on and promised to 'do better' but even with 3 adults and numerous CG's coming in, she was requiring 24/7 care and she wanted her kids to do it.

Once the decision was made to move her, it only took 10 days to get her in the facility. In her case, which I am now finding is not really unusual, she gave up trying to stay alive and died (with 24/7 care IN the ALF from her kids) 8 days after being moved.

There is no regret about moving her--I am surprised. It's making for a lot more work to now empty out the ALF AND her home, but it's getting done.

It took a lot of courage to tell her that they had to break that 'we'll never put you in a home' promise they had all made.


Even though it ended up with her never acclimating to the facility, it did put in motion all the things that needed to take place when she died.

MIL had severe dementia by the time they moved her. And they were preparing to have to move her to either a locked down MC facility or psych ward at a hospital as she got so bad and was screaming, kicking & biting people.

My DH says he doesn't think the 'talk' even resonated with her at all. Your mom will be who she is--we can't tell how she'll react. MIL was totally caught off guard and so she reacted badly.

Prepare for any outcome, but be strong. It takes a LOT of courage to do this.

The better Medicaid homes have wait lists. LTCs generally are private pay and have a few beds for Medicaid. There are also families who placed their LOs in private pay a few months before running out of funds so that they jump ahead of that wait list. This is what you may be encountering.
You also mention that you are applying for MassHeath. Is she in MA and you are in IL? It is a small state. She might get faster placement by letting her in to the next available bed.

Why does she have to be placed? It sounds to me like she can be cared for at home with the right help.

If she's lucid, not combative and cooperates with her caregivers, why does she have to be put in a nursing home? I was a homecare worker for 25 years and have seen many people deprived of their liberty and put into a nursing home when they could have been adequately cared for in their own homes by hired help. With most of these kinds of cases, the family insists on placement smiply because they don't want the person in the home anymore.

It's your mother's home. If she and your father can afford to get a couple of live-ins for a while so she can remain at home and your father will not have the burden of her care, then this should be explored.

You tell her HONESTLY.
You tell her GENTLY.
You tell her FIRMLY.
You allow her grief. Is this not worth grieving?
You didn't cause this and can't cure it. You have done the best you can.

You simply say, ‘Mom, dad is exhausted. Your care is exceeding his limitations and he will no longer be able to provide care for you.’

She will most certainly need time to process this information but she will in time. Then, your dad can get the rest that he so deserves.

Reassure her that you will visit her just like you do now. Tell her that she will be well cared for by a professional staff. Let her know that you will oversee her care.

Wishing you and your family all the best.

My mother went to a nursing home because her caregiving needs far exceeded what was doable in a home setting. She understood this, she didn’t like it, but she understood it. Your mother’s needs also cannot be sustained in a home setting. That’s all you have to tell her. I’d recommend not giving her this information until the plan to move her in fully in place, no use having her ballistic for very long at home. Make sure to reassure your father that this is best for them both and of your concern for him in this. Please know my mother went from private pay to Medicaid all in the same place, same bed, and received the same good care throughout. I wish you peace in this, it’s never easy

My dad was like this. In 2021, he refused to let my sister take my mom out for 36 hours.

Is mother perfectly fine watching her husband die caring for her? If she's not riddled with dementia, she should be able to SEE what this level of care is doing to the poor soul! She's under hospice care so she already knows she's not long for this Earth. But why be willing to drag your father down with her? She needs to be made to understand what's going on here. If she goes ballistic, she goes ballistic. Things don't always work out perfectly in life, unfortunately. She can read the paper and watch TV in the SNF, and get help from a team of caregivers with her other needs, vs from 1 tired and sickly old man.

There's no easy way at such a time in life, I'm afraid. But nobody has the right to drag anybody else down due to tending to their needs all day. I wish you good luck and Godspeed as you try to navigate this difficult time in everyone's life.

Sure she will be livid, but she has to shoulder most of the blame. She should have participated in PT. Sure it is hard and painful, but it can be fun and rewarding as well; especially after seeing progress.

It appears it is too late for her to experience that, now.

The only way to tell Mom is to be honest with her . That she needs more care than can be provided at home . It is too much for your father and it’s too expensive to have hired help come in for enough hours .
I’m sorry .