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?
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.
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?
Rightttttttttttt. I know many families like that.
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)
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'.
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.
let us know how it goes.
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.
All the best for all concerned.
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.
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.