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GraceJones Asked April 2022

How to deal with close-minded family members who are unwilling to consider various options for my mother's long-term care?

My 82 year old mother recently had a stroke. Thank God, her mobility appears unaffected and she only occasionally searches for a word, with some fleeting mental lapses (e.g. a word salad for a sentence or two). She's moving into a rehab facility for a month tomorrow and I think that there's a chance that she may be able to return to independent living, with partial assistance of someone coming in to give her medicine/food. Her brother and my sister refuse to consider the idea that she won't need a 24/7 live in care, and they get mad when I share with them any assistance options, or remind them that she could still make significant progress during the rehab. Also, I live overseas and I'm arranging time from work to come visit my mother and take care of her for some weeks, and they told me not to (wtf, how would they feel if someone told them they can't come help their mother after she had a stroke). I'm going to go anyway after she comes out of rehab, but it's hurtful to be told something like this. This is stressing me out and affecting my sleep and ability to be productive at work. Advice?

Frebrowser Apr 2022
I would suggest starting your visit during her last few days in rehab so you can get a better feel for how she is doing.

I can’t help but wonder if the local family members were already at the point where they felt she needed custodial care before the stroke.

When someone is hospitalized or in post hospital rehab, there is a window of opportunity to claim that a discharge to where they were before is unsafe. This forces the bureaucracy to do the often challenging work of finding an appropriate placement that will accept her.

I am speculating that what the family members fear is the scenario where she returns to to independent living and is fine while you provide extensive support, but isn’t so fine when you aren’t there to provide that support.

If my speculation is correct, what you need to diffuse their fear/anger is both a very clear evaluation of how good a chance she has of being ok again, and reassurance that it won’t fall on them to fix everything if that chance doesn’t work out.

Is there plenty of money to hire caregivers and a care manager or other professional to handle the transition if the family passes on the opportunity to let the bureaucracy do it?

If there is a POA and/or advanced directive agent, the decision, if there is one to make, will be theirs.

I apologize if my guesses are totally wrong. I wish you and all your family well. I hope you can be kind to each other.

Jamesj Apr 2022
I can only speculate here, but maybe they feel like because you are so far away and won't be the one to step in to do the caregiving, you shouldn't be the main voice in the decision making. If she goes back to living independently, someone is going to have to routinely be involved to manage those part time caregivers coming in and out of your moms home and to make sure she is still functioning safely when the caregivers are not around. That won't be you, it will be your sister and uncle.

I have a brother who thinks everything is easy, but that is because he skirts over the top of everything and is never the one doing the work or dealing with the fallout.

You have every right to visit your mother, but are you truly the best person to make decisions about her care?

Your mom could drastically improve with rehab. Does a decision have to be made right now or can it wait to see where she lands cognitively and physically after rehab?
venting Apr 2022
"I have a brother who thinks everything is easy, but that is because he skirts over the top of everything and is never the one doing the work or dealing with the fallout."

Rightttttttttttt. I know many families like that.

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partyof1 Apr 2022
You are coming to help for a few weeks and then return home. That's a visit. When you leave, who is going to manage her care....the appointments, the driving, the overseeing of life, the caregivers who may have to come in? Is that something that you can commit to do as well from overseas if her brother (who must be close to her in age already) or your sister cannot manage.

A few months ago, I had an older cousin sashay into town to visit some of the folks in the area, including my mother. She swings in a couple times a year for a couple hours. I walk in to the conversation and cousin looks at me and says, "Ooooh she wants to stay in her hooome." (insert sing-songy voice).

Fast forward a few months, my 85 yo mother fell and broker hip, infection, multiple surgeries, etc. She is now in assisted living. I'm sure I will "hear it" from the cousin how I should do X, Y and Z. But she's not here to do anything herself and I will be the judge of my limitations for caregiving, not her.

WHen you visit, please have an open mind as to what might not have been quite as good as you thought....was she really thriving in her own home? She may need to go into assisted living and then could gradually go to an independent apartment with staff supervision. That's a lot different than living in your own stand alone residence. My mother gave an outward impression...even to me who was there on a daily basis. Once she moved out, I can assure it wasn't as good as she was letting on.

(I suppose I should really write said cousin and let her know of the happenings. I'm going to wait a little longer until mother is more settled into ASL)

Beatty Apr 2022
I'd say watch & wait. Hope, but be realistic.

Stroke affects more than mobility & speech. Mood swings, cognition, memory & much more can be effected. Initiation & motivation too all will impact ability for daily tasks.

Recoveries varies & not until closer the end of the inpatient rehab time will it be clearer whether independent living is still possible, even with aide visits. The care team (Dr, PT, maybe OT, Speech) will give professional advice on the level of care needed.

So on one one hand I'd say, don't assume straight to 24/7 care yet - but on the other hand, be realistic. The highest risk factor for stroke is already having had a stroke.

I'd warn against not getting stuck in all or nothing thinking. What I mean is: if Mom can't return to her independent living - this is not a 'failed' recovery. Recovery is not the removal of the entire problem/illness/injury.

Recovery as a *Stroke Survivor* is a journey to 'the new normal'.

christinex2ri Apr 2022
Let's be practical - if you had a business problem to resolve with your team members in different locations would you not have conference calls with q&A to research to resolve the business problem.
family matters such as this is really no different. when my mom was living in Houston and was in a coma for 8 weeks I came up with a list of Questions for the medical team and we conferenced our brother and another relative into the call so we would all be on the same page to understand her condition, her prognosis, and care from ICU to 2nd hospital to rehab facility to home with visiting nurses and rehab therapists. We understood the need for certain changes in the house before she came home and fortunately, we were able to comply with the necessary adjustments.
When a family situation like this occurs, it is necessary to compartment your feelings vs the needs of your loved one as well as the others in the family.
Be PRACTICAL -- put together your concerns to address with EVERYONE -- the medical team and family members and request a conference call before you arrive and then an in-person meeting once you are in town. Make certain you are available for ALL visiting nurse team visits at your mom's home with a family member who will be responsible when you return home.
and let the medical teams as well as family members you will be calling in for weekly updates once you have returned home.

Also, make certain that your mom's Medical Proxy and Financial POA allow YOU to be in charge of her ADVOCACY.

againx100 Apr 2022
Not sure why they think she needs 24/7 care. I think you're right to come over. I think you're right that it's premature to think that how she is today is necessarily permanent. It *might* be, but have to give rehab a chance. Does anyone have POA for her? What her brother thinks is really not of concern. Unless he has POA, he has NO say. You and your sister will have to try to come to terms. Just be careful when you come in after rehab. I assume you'll be staying with her? Since your stay is temporary, make sure to set up all the help that she needs because you will be providing zero hands on from abroad. Does your sister live locally? Is she planning on helping long term or maybe not since she thinks mom will need 24/7 help. Good luck.
BaileyP3 Apr 2022
Let's make no mistake, even if Mom is in LTC there is still a great deal of work that will be required. Purchasing of toiletries, clothing and other incidentals, taking Mom to doctor's appointments or simply taking her out for a drive all require time and effort particularly once walkers or wheelchairs are required (you have no idea the amount of time I spent making purchases in multiple colors and sizes for my parents and returning whatever wasn't suitable). Like the original poster I lived out of the country and particularly during the pandemic, attending to the needs of someone in LTC was very time-consuming (and costly).
97yroldmom Apr 2022
Just be careful that you respect the folks who I presume have been doing the heavy lifting while you are away. It’s not always bad to have a little extra help. Your mom will hopefully improve as time goes by. It will take awhile to know how much she will recover of whatever she has lost. Give yourself the chance to get home and spend some time with mom before deciding she doesn’t need help. But so good that you are coming home when she needs you. It sounds like all three of you really want the best for mom even though it’s early days to be making hard and fast decisions and hopefully moms own input is met with support.
let us know how it goes.
BaileyP3 Apr 2022
My in-laws will be 89 this year and live independently altho we visit with them every month (almost 3 hours away) FIL takes care of all the bills, MIL still does the cooking and she swears that if he goes first she 'won't inconvenience" us, that she'll be fine living alone. Fact is she won't but we'll cross that bridge IF we come to it (FIL would be fine alone at this point) Yes I know our elders want independence as long as possible but sometimes that's not realistic. Assuming she moves back to her home and lives alone who will respond to the calls when she takes a fall or needs groceries?? If it's her siblings it's important consider them as well. Also keep in mind that just because it's time to consider LTC doesn't mean suitable accommodation will be immediately available.

Four years ago I had to put my parents into a LTC. They lived 9 hours away from me (I was POA and the only kid that took an interest even tho my older brothers and their families lived in the same country as Mom and Dad and only 3 hours away) Prior to their move I called my parents daily but it wasn't until I was with them for several weeks after Dad took a fall that I saw the reality of the situation.

There will never be a good time to consider LTC but if you are not living locally the heavy lifting may in fact fall to her siblings and I'll guess if she's 82 they're retirees also. This is not an easy time for anyone involved. My brothers didn't like institutional environments and so didn't visit Dad for the last 18 months of his life, meanwhile I would drive cross the border, isolate for 2 weeks each time just for a week of sitting in the garden with him for an hour a day.

When you arrive for your visit it's time to speak to the medical professionals and see what they have to say. If they won't discuss her situation I would take that to mean that they still feel that she can make her own decisions. Wishing you best and keep us posted.
Taarna Apr 2022
Shelve the options for follow-up care for now. Allow mom to go to rehab and do her therapy. Ask for weekly conferences with the staff that allow the entire family to listen in on her progress. Ask the staff after her 3rd week for their recommendations for her long term living options. Usually, the input from the staff is the most beneficial and on target when it comes to long term options. Family members are usually more willing to listen to options coming from "professionals" - even if is the same options you are considering.

Santalynn Apr 2022
My cynical 'horns' just popped out so this is entirely 'off the cuff' but we all know our 'spidey sense' is often pretty accurate: for family to brush off the possibility of your mom's improvement and to tell you to Not Come over smacks of their almost waiting (wishing?) for her to pass away sooner than later. As harsh as that sounds it wouldn't be unusual even if it's just them throwing up their hands in helplessness. Try to ignore their attitudes/words and Do The Right Thing as you perceive it to be; it will serve everyone for the better in the long run. When you see your mother in person you will also get more understanding of her condition and clarity of how to move forward.
All the best for all concerned.

Tothill Apr 2022
Dad had a massive stroke with right side paralysis in 2015, he was 86. With rehab he made a full recovery and managed to live independently until this past winter. He was driving up until his 90th birthday.

There is no reason to believe your Mum will not make considerable advances in her recovery.

BUT, if she needs help once she is back home, who is going to provide it? I think her brother and sister are seeing that once you move back home, any support Mum needs may land on their shoulders. As seniors they are indicating that they do not have the capacity and they would rather she live in a place with 24/7 care available.

Even though Dad has managed well after his stroke, he does so living in my brother's basement suite. He has someone on site he can call if he needs help. By 2018, at 89, he realized that he was not comfortable spending the summer at the cabin on his own and asked my son to spend the summer with him.
lealonnie1 Apr 2022
BIngo. With OP living overseas and mom having minimal care in IL, guess who will be managing the chaos once she goes BACK overseas? Mom's siblings. There comes a time when AL is the best answer for an elder with health issues, especially when her daughter isn't available 24/7 and lives far far away.

OP, please respect mom's siblings opinions in this matter bc they DO count!! See how she fares in rehab, of course, but AL is the safest and best bet for all concerned. Why fight it, especially when you're so far away? She'd have care available 24/7, meals served, meds administered, activities, doctors coming in house to see her, etc. At 82 with a stroke under her belt, her needs are likely to only get greater as time goes on.
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