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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?

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It's your mom and you should be involved in her care or her care plan. Talk with the rehab and get updates as to how mom is doing. More than likely, rehab will keep her as long as Medicare pays and then release her. If it's possible to be there a day or so before release and then be present to see wherever she is going to be living. That's the only way you'll know for yourself how well she is doing.

I have to question why her siblings are so determined and standing firm on their belief she WILL need 24/7 care. So asking: Have these two siblings been the people who have had to check on her, help her, etc prior to this current medical event? It's possible they are were more involved in her care that you were aware...or thought it was no big deal what they were doing for her. It could be their way of saying it's time to go to facility care so they can step out of being her caretaker.
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GraceJones Apr 2022
My uncle and my sister live in different cities and have not been seeing my mother in person any more than I have. My mother has been living independently and no one has been caretaker.
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GraceJones: Perhaps your aunt and uncle are in denial about the care that your mother will require. Seek out a counselor for yourself.
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my2cents Apr 2022
I may have been confused, but I understood the post to say mom's siblings don't think she's going to get well enough to live alone....poster (daughter) is the one thinking rehab may improve things to the point of mom living alone.

Which makes me think mom's siblings may have been doing more than others know to keep her at home and they are hoping she goes to facility care now (or assisted living facility, etc)
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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.
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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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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.
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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.
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The family is in shock, they still don't know how to handle it. The ones who have close contact with the patient think they know better than the one who lives overseas. This is logical and it makes sense. In this case, is best to sign a truce for now and wait until she leaves the rehab. facility. Only then, an update medical assessment can tell more accurately what type of follow up she will need. Actually, it's too early to predict how her case will evolve. She could even have a second stroke that would kill her, or she might develop vascular dementia that would require 24/7 live-in care. No body knows yet.
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Seek counseling for yourself if these conflicts are affecting your work and health. You need to learn to deal with these conflict/differences of opinion with your relatives in a productive way. Be realistic about what you can really do for your mother. Living overseas, you are not in a position to handle your mother's day-to-day caregiving, so maybe you have to back off a bit and trust their judgment. Who is her POA for medical matters? That is the person who is ultimately responsible to oversee her care. Be kind to your relatives who have been caring for your mother. They have been doing the heavy lifting. All the best to you and your mother and family!
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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.
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By the end of rehab, she may not meet the criteria for residential care in a SNF. (need a nurse available 24/7 due to unstable health issues, need maximum help to transfer from bed to WC, etc., unable to preserve her own safety are some of them.)
An ALF may be the better choice.
I agree with other commenters - the ones who live nearby and have to be available 24/7 when she is at home (caregivers don't show up, plumbing leak, power goes out, etc.) are the ones to help make the decision. If she does well in ALF and continues to improve, that's great. She will be in a place that is reasonably safe, provides meals and social options, outings on a van, etc.
The farthest away family member gets to have the guilt...sorry! Just be supportive of your mom, wherever she is.
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My mom also had a stroke at about that age. At first , while still hospitalized - she was extremely confused but improved and was pretty much back to normal after rehab. Does your mom have any mobility issues , before or after her stroke ? For my mom after, she was more easily fatigued but could do everything independently . I credit her going to a quality acute rehab facility as well as her determination for that, she didn’t even use a walker or cane ! She had three hours a day of therapy . Only issue was that she sometimes leaned a bit to left and occasionally brushed against things on that side - which is why I told her that driving would not be a good idea ! We took turns taking her anyplace she needed to go. Also, my brother and sister all ready lived with her and my dad who suffered dementia - although the lived there for their own reasons and not to help my parents at all. My sister did most of cooking and housework . My one complaint was that the outpatient physical therapy was not aggressive enough ..didn’t last long and I felt they had the idea that th result was “good enough” for an old person. She needed to build up more strength. My suggestion for a good place to go for PT was not considered because it was maybe ten minutes further away.
Five years later she suffered another stroke - at first mildly ..despite our taking her immediately to a “ stroke center” hospital, they did not treat her at all for stroke and diagnosed just weakness. Although they kept her for “observation” somehow it was missed that she had a full blown stroke at some point during the night. When we left she had eaten and was fully ambulatory , when sister visited in morning , she was sitting in bed ,leaning heavily to left, mouth and facial lax droop on left, and complete left side paralysis! She was trying to eat a full breakfast placed in front of her but it was dribbled all over her. Anyway, she did go back to same quality rehab, despite that hospital telling us at first it was not available (we called ourselves) , and made pretty good progress though not enough to go directly to home . Since insurance will only pay there for about a month, she then needed more rehab care . Again, my choice of place was disregarded for a closer one ..which claimed to have more rehab than actually offered. Mine would have three hours a day, but was about 25 min away compared to ten. Also the closer one had a prestigious independent and assisted living complex attached . The skilled nursing part was not as luxurious although the public rooms were very nice, the patient rooms were a bit rundown. Also she had usually only an hour a day of therapy and seldom any on a weekend. Also she contracted the flu while there , perhaps due to them not following protocol for an outbreak. Also, at one point they placed a dementia patient as her roommate -partly while she had flu - who was being put on hospice , and that lady passed away ..my mom had to suffer listening to her labored breathing and eventual death..with just a curtain between them ..as well as family visiting at off hours. AND waiting for funeral home to come pick her up. For hours ..being alone in room with her which freaked mom out!
Sorry sore subject but ..after that she did return home but with left sided weakness , no movement of her left arm at all. Had aides for morning care and bathing . Needed assistance to bathroom and used a wheelchair . But managed and was good cognitively . So it is possible .
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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?
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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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Your brother and sister may have to hear it from a doctor or health care professional about what your mom's care needs will be when she leaves rehab.
She may not need 24-hour live-in care. That will not be known until she's in rehab and they see how she's doing.
The rehab facility she's going to will have a meeting with you and your brother and sister. They will explain what your mother will need. Your brother and sister may have to hear it from them.
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Who if any one is POA for health and for finances?
The one that is POA for health should be the one that has the most input on this.
The one that has financial POA should also have input
BUT you are forgetting the most important one.
MOM
If she has not been declared incapacitated or incompetent then SHE is the one to decide what she wants to do, or the help that she wants.
Granted this may be a house of cards or a line of dominos but until something happens that makes he incapable of caring for herself then let her.
You say she is living independently I am not sure if you mean she is in her own house? If she is living in her own house would she accept a transition from rehab to a community that offers Independent Living, Assisted Living and if ever needed Memory Care?
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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)
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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.
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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'.
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Yes, do remember that these people have been there for her. They are a little negative though. Usually people are hopeful someone will bounce back. If Mom can make her own decisions ask if she will give her doctor permission to talk to you. Then you are getting the info first hand. It may take a few months for her to get back to normal. Rehab is just a beginning.

Pray all goes well. Update us.
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Is your mother cognitively incapacitated? If not, even if she has an assigned PoA the PoA is not activated, and she still gets to make her own decisions if she has most of her cognition and memory, and isn't physically incapacitated, either. She may not like having someone invading her privacy 24/7. She gets to decide. Make sure she knows this. That being said, if she currently doesn't have a PoA, she surely should get this legal protection in place for herself asap and while she's mentally and physically able, and create an Advance Healthcare Directive (with input from her physician) as well.
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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.
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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.
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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.
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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).
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