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Treecrout Asked March 2021

Mom with physical problems, her husband with dementia—how to find a solution for both?

Hello friends, I am trying to navigate a situation with my 71 yo mom and her 77 yo husband. Mom has had a string of physical issues starting with a broken ankle last Aug. She lives with her husband who has dementia and is his primary caregiver, since Nov, she has had two surgeries on the ankle and may need a third. She has also has a severe kidney infection, some falls, and a gallbladder removal last week. She now has problems swallowing in that some things are being aspirated when she eats/drinks. I live in another state and my brother lives two hours from her.


Mom’s husband cannot drive and has dementia that requires him to be supervised most of the time. He has a daughter that lives close, but she cannot be with him 24/7. This has been extremely difficult given my mom’s multitude of health problems lately.


Mom’s husband’s children feel their dad should be in a memory care facility. Mom does not want to move and feels that if she could just get up and running again, she could take care of him.


Ultimately since mom has no cognitive impairment, we can suggest things, but it is her decision. Not sure with her husband. I know he does not want to move, either, but he is impaired. I am not sure who is his POA.


All this said, how can I support my mom in this? I do not want to tell her what to do, but with every hospitalization, the stress grows. What do we do with her husband? What about support for mom when she comes home? How do we get them to their appointments?


I realize that it is not my responsibility to fix all of the problems. I am not in a position to move them into my home, and I cannot shoulder the financial responsibility of having caregivers in their home daily. My mom is already expressing concern over the cost of things, but does not want to let anyone in on their financial situation (I understand that this is common).


I am also starting to have problems in my job and with my relationship due to the stress, and I am not certain how to stop the constant worry that has come with the situation.


I know a lot of you likely have faced similar challenges and would love your advice and support. I feel like this will never end and I am really sad all of the time over it.

AnnReid Mar 2021
Start with the assumption that no one with multiple problems “wants to move”.

Since her husband needs Memory Care, you might want to start with the conversation about him, rather than her. Is she accepting the fact that his condition is, or will be soon, deteriorating?

Is she still planning to stay by herself when the inevitable happens with his condition? Does she accept the fact that if and when he is placed, his children will not be as available to support her situation as they seem to be partly doing now?

If she is truly realistic about her situation, are you able to tell her that because of you own circumstances, you can’t be there for her as much time as you are now?

Tragically, her independent spirit may be her own biggest stumbling block, and sometimes it isn’t until matters become even more difficult, or worse, before the reality actually hits.

Sometimes offering alternative solutions can provide a sense of comfort and self determination action, if she’ll consider any change at all.

Finally, have you told her how much concern you have for her, and how worried you are about what may happen if her husband does go into residential care? If you can enter that conversation, could it be helpful for her?

My LO was as stubborn as they come. I understand what your trying to figure out.

Windyridge Mar 2021
I had your exact situation. Dad with dementia and mom with major health and mobility issues and I was also out of state.

My mom didn’t have cognitive impairment at that time but her executive reasoning was terrible. Dad was beginning to wander and get in trouble and there was no way mom could supervise him. Mom was having a couple falls per week and dad could hardly help her up any longer. She had episodes of diabetic shock and dad though she was just sleeping. And on and on......It was just not sustainable to keep them home.

It finally took a crisis, bad fall, hospital etc and then right to assisted living. Got them both moved in with in a couple days of each other. It was a hot mess but now they were safe, fed, clean and supervised.

Tree, I think y’all are at this place now.

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lealonnie1 Mar 2021
Your mom having aspiration issues when she eats is HUGE. That, in and of itself, requires her food to be pureed. If she aspirates food into her lungs, that leads to aspiration pneumonia which can easily lead to death. She needs a swallow study to be done on her to see exactly where she's at with these issues. She may not even qualify for Assisted Living and may actually need Skilled Nursing, especially if she needs pureed food. I know that Morningstar Assisted Living DOES handle special diets at a 'gold star' care level, and they also have a Memory Care wing as well, so perhaps both your mom & her DH could go there, if there's one in the area.

You may need to consult an elder care attorney to get advice about where the folks can be placed. Here in Colorado, I know you can hire someone who will find a place for the folks, based on their issues. I don't know what the position is called, though, so I'm of no help with that, and I apologize. Maybe this AgingCare site can direct you accordingly since they do place elders all the time!

I don't really know how you can avoid worrying, being far away and having this situation to contend with, frankly. I had to move my parents close by to me in Colorado when dad was declining and could no longer drive. I was able to place them in an Independent Living senior apartment complex which had a mini bus to take them around. Which was laughable, really, because I was the one to take them to all of their doctor appointments, hospitalizations, and on and on, ad infinitum. I finally had to place both of them in Assisted Living after dad was released from rehab after a broken hip incident, but he was catheterized and the AL didn't handle that aspect of his care, so off to the ER I had to take him at least 1x per week, believe it or not.

At some point, SOMEONE will have to be allowed to see their financial profile and where they're at, so you'll know if Assisted Living is feasible. At least there are other 'children' to shoulder this burden and you're not alone as I am, being an only child. Speak with the others and come up with a plan of action to get the both of them placed. But again, your mother has serious health issues that AL may NOT be willing to deal with. That's the first step: get her assessed to see if she qualifies for AL. And see if you can arrange for a swallow test to see just how bad off she is with that issue. It can be life threatening!!!

Wishing you the best of luck; I know what it feels like to have the crushing stress of this on your mind. Sending you a hug and a prayer for a good resolution.

disgustedtoo Mar 2021
Can you research to see if there are any ALs in their area that can do "respite" care? Generally you sign on for the whole deal, but some may have space available for trial periods or respite, meaning just a few weeks or months - which could eventually lead to permanent, if they end up needing or liking it.

IF you can find a place that would take them while she's "healing", she might find she likes it. A place that has MC as well would be even better, as he may need that soon enough. IF they decided to stay, she could live in AL and he in MC OR they could both live in the MC unit together.

She might be more receptive if it's presented as a temporary solution. Even if it doesn't last, you might get a little respite yourself for a bit...

Grandma1954 Mar 2021
I am also going to suggest a move for both of them to AL. She can still be the caregiver for her husband but she will have help doing so. If she needs to have a break (no pun intended) he can spend some time in the Memory Care unit.
The AL will be able to help her as she recovers from surgery.
She could remain there if she wishes once he has to be moved to Memory Care, if he does.
Her choosing to do this would also take a lot of worry off your shoulders as well.

Another thought..is her husband a Veteran? If so depending on where and when he served the VA might be able to offer some help or a LOT of help. A call to the Veterans Assistance Commission might be in order and their service is free.

Omobowale Mar 2021
My father is the one whose mind is sharp but he is frail. It is my mother with mild dementia. I came back home (gave up my post-retirement dream job of working as a principal of a school in Africa) to help with care...and it has taken nearly 2 years for my dad to realize he/we can’t do this alone. I was living with them until recently. My moving out (for my own mental health) was a wake-up call. He finally realized that increased care will be needed and that one daughter...or even 2 daughters... can not provide that level of care that will be needed. They had been on a waitlist for a facility that offers memory care...as mom will eventually need that. (They had turned down the opportunity about the 1.5 years ago.). When the opportunity presented itself to him this time...I think he was finally ready to accept the reality. Emotionally it’s hard for everyone involved. But I think socially/mentally and medically this is the best decision for both of them.

It may take awhile ... but start looking at possibilities now.

cxmoody Mar 2021
Perhaps you can find an Assisted Living that has a Memory Care Wing.
Mom and her husband can be together during the day, or for meals at “his place” and can go to their separate wings at night.
I recently spoke to a woman at my mother’s faculty, who just went through the same issue with her there. He has passed away. She loves it so much in the Assisted Living, that she wants to stay! :-)

Taarna Mar 2021
Since your mom needs help right now, I would suggest she talk to her doctor. He/she can write a prescription for home health aides. Most insurance policies will cover home health care for a period of time while your mom is recovering from her surgeries. Otherwise, it sounds like it may be best for them to move to an assisted living situation that can phase to more care as needed.
Tamg59 Mar 2021
Taarna, in my state, home health aids are not usually covered by insurance.
my2cents Mar 2021
First off, talk to all siblings/half or step siblings to find out if anyone has POA and what the POA was for - financial, medical, etc. If anyone has access to bank and financial records - is there enough money to pay for some help to keep him home a little longer to satisfy mom?

Otherwise, you're going to have to have a financial and safety issue talk with your mom about how they would 'like' to live and safety issues to keep them together. How much money can they afford to pay some help? Then, go from there.

RedVanAnnie Mar 2021
Your mother imagines getting "up and running" and back to normal, but at least right now she is NOT up and running and her health issues are not likely to magically disappear.

An AL situation for them together might be the best solution.

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