I'm an only child in my early thirties living with my partner a 2 hour drive from my mother. My mother had a stroke summer 2021 and was in hospital for a few months to recover - I visited her every week to support her getting better and ensure she was getting adequate care. She has made improvements, but still has limited mobility (use of 1 hand and needs a walker since her left side was affected badly by the stroke).
Her medical team wanted her to go into a rehab facility and continue physio as she did not meet their standards to go home, but she refused. They even mentioned LTC but because of the way my mother is, would not even attempt to discuss it with her (she is strongly opinionated/stubborn and can be offensive, or ends up crying). She wanted to go home and has been home for 8 months now - she only got 2 in-home physio sessions and was getting 2 sessions a week. They also told her she needs a wheelchair, but she insisted a walker was sufficient. She refuses any kind of group support, didn't read the stroke book/resources and basically puts her head in the sand hoping things will get better. She also thinks knee replacements will solve all her problems and blames her arthritis for her mobility issues.
She relies on government funded PSWs to feed and care for her (she is retired and on government support), but tbh they are providing sub-level care and are not competent to care for someone (they leave the door unlocked, leave old/rotting food in the fridge, cross-contaminate everything, complain when asked to take out the garbage, do not clean up after her, and even plugged her toilet and left it). We have complained to the agency and the care coordinator and we are met with some apologies and are told "this is the way the system is". We've discussed minimal private care just to help offset, but she doesn't want to spend her money.
She lives alone and is renting an old, crumbling, not accessible home. We've installed grab bars, bed rail, etc., but she has to take sponge baths and she cannot get outside due to stair access. She refuses to leave unless the “right” thing becomes available because rent is cheap and she will "get better". She also has a cat who provides company, but who needs to be fed/litterbox scooped by someone else (PSWs won’t do the scooping), so her neighbour does it. He also helped with snow in the winter (we paid him) and helps with urgent requests. Bless him. My cousin is close who does periodic grocery runs and small requests, but is not always reliable and no shows. He has scolded me for not coming every week (I go every 3-4 weeks with groceries/supplies) and I can tell the situation is wearing on both of them.
She is not interested in considering future housing alternatives or planning - I asked her to look into it and she said she will when she is “ready”. I've added her to housing lists near me after asking her if she would consider moving closer so I can help - it’s a 1-3 year wait here and 7-10 year wait where she is. She is in denial that this is her life now and constantly dismisses my suggestions about housing options or support facilities and doesn't want to consider them because they are government supplemented (but that's all she can afford).
She refuses to seek medical help when she knows she should – she badly burned herself, refused to go to the hospital and lied to me about calling her doctor/talking to a nurse. 6 weeks later and she is still healing with bad scars and scabs and it was infected as well – good thing family could go to the pharmacy for her for antibiotics.
She is getting by doing the minimum and complains about how hard it is living like this. When I am there, she just sits slouched on her phone while I clean. She tells me she does her physio exercises, but I doubt as often as she should because I see bruises/heat rashes, but she dismisses them. I love her but I’m struggling to keep going since she barely wants to help herself. Open to help/suggestions please.
Before getting to suggestions, can I just write about stroke?
I have read a lot about stroke, from pamphlets skimming topics in a light way to heavier medically focused brain plasticity stats. Getting involved with stroke survivors, by website & in person gave me the opportunity to hear people's lived experiences.
There are physical presentations of stroke we may have seen before - weak one side, speech & swallowing issues - but the variation of injury is wide.
It is harder for others to 'see' the other injuries. Things like;
* Mental fatigue
* Lack of initiation
* Lack of motivation
May show as Apathy &/or Depression
Injury to the brain areas responsible for;
* Working memory
* Processing information
* Planning
* Judgement
May show as impulsive behaviour or risk-taking behaviour.
Changes in emotion regulation - called emotional lability;
* Mood swings
* Unable to change mood easily
* Crying fits
Doctors told me it is hard for many stroke survivors to see/understand the changes to their brain. Eg if you break your ankle, you can see it & feel it. If a part of your brain is damaged, the brain might not see or feel it. Does that make sense? This is medically called *Anosognosia*. In layman terms: 'lack of insight'.
What I can also say is..
Each person is different.
Each stroke is different.
Each recovery is different.
The new way to think of *Recovery* is no longer *back to the old self, back to normal* but *a pathway of New Normal*.
This is a big concept for many types of recovery (not just stroke). It will involve GRIEF to let go of some ideas & acceptance.
So before adding what you can do to improve or fix things - I'd take some time to grieve what has been lost. Your Mother's full independence. Her full insight.
(((Huggs))) 🤗
Not *when*, but *if*.
It's not just Mother that has to accept the new normal. It's you too.
My Mother is still waiting for the stroke to 'go away' 😔
I think your Mom is still not old, I am glad you respect her independence, no POA, understand she would not want to go to support facilities, if she is independent she will have to share room with at least one person, so she is fighting for her independence, but not doing enough hard work.
TChamp, I don't know your background or source for your comments, but I respectfully disagree. I had a right sided stroke 10 days after a certain individual was inaugurated in 2017, spent a day, night and another day in the hospital but wasn't even admitted.
The long term consequences are peculiar, but not devastating: somewhat larger hand, fingers, knee bones on the stroke side, but better and clearer skin, and still the same level of strength and mobility I had before.
Obviously every person is different, and that's why I commented on your response.
These situations are difficult since usually a decision will be made for your mother due to an emergency--a fall, etc.
Besides your doing this commuting, out-of-state so you have to rely on the neighbors, etc. to find out the "real" story.
The good news is you can go online and check out places in the neighborhood and even in your State should you get a call, usually at 2:00 in the morning.
Basically, you can make plan and file it away. Put everything in a folder, speak with your mother's PCP (but speak with a nurse practitioner--they seem to be better informed). When they get up their in age their comes a times they cannot make clear decision by themselves.
Make sure you are allowed to discuss your mother's medical, dental, etc. Get all paperwork lined up. The portal is the best way to contact doctors. Gone are the days when you sat by the phone and waited for them to call you. You can ask a ? 8PM and by the time you get up in the morning you go on the portal and there is an answer as in my mother's situation.
Let's face it no one wants to go to an institution. They did a study and polled Board Members who sit on Assisted Living and Nursing Home facilities and asked them, "Would you like to live here?" No one raised their hand.
You can do a virtual of places on line. I am firm believer in one morning a week respite program. You can also have p/t and o/t, speech through the respite but you go through your medical. That way it's once a week and you get it over with and there are meals, sometimes a f/t RN and supervision.
Perhaps your mother can't see things clearly. She needs you to make the plan for her, hold her hand and assure her you will make sure she is in good hands but right now doesn't sound like this situation is going to get any better.
Contact a Social Worker from the hospital, your Mom's PCP (nurse case manager) and an Elder Attorney. Tell the PCP bring on the troops.
When your old you want to be left alone w/o all the blood draws but this situation, your not on the premises 24-7 so your mother if she wants to remain in her home tell her she has to have services--end of story.
I will pray for you. Theses things are hard because now you are the parent and she is the child.
You're smart to reach out like this. You are doing the right thing.
Amen.
I am hesitant to do some of the planning because I once helped her find a ne apartment, unfortunately the place she got had a flooding/mold issue and she had to go to small claims court. She always blamed me for finding that apartment and helping her move there... So even when I try to help, if things go wrong, it's always my fault...
Time to start planning a nice vacation.......go do some research and make sure your deposit is NOT refundable.
Anything good and retaining independent living, for example, apartment to buy for people over 55 will be around $500- $600,000 ( those are the one that provide many services for seniors) starting at $160 per day for some care and Memory Care starting at $8000 per month. That is over $12000 per month excluding initial investment, plus you food, utilities, condo fees etc., medications are covered mostly at max payment of $25. This is reality for many seniors, staying at home and hiring private care is usually $40 per hour. Home Care agency which is free provides some respite and help with shower, maybe meals.
I suspect from her post, her Mom is trying to retain her independence as she knows realistically what is ahead.
The poster mentioned her Mom is trying to get apartment near her, she is right waiting list is 3 or more years.
I feel if her Mom is not too old and not ready, her only option now will be to go to rehab centre and work extra hard to get better.
Re: rehab, we were told by the hospital she was in that if she refuses rehab, it is incredibly difficult to get back in - you have to go through emergency care and be rea-assessed, and the chances of them flagging you for rehab are low if you have been already living at home. She just has to do what exercises she can on her own at this point.
Unfortunately it is a wait until some catastrophic event happens that forces "something"
That something could be a cut, a fall, another stroke or...?
Once in the hospital (I hate to say it if she survives) you need to make it very clear that she can not be discharged to her home.
Her home is not safe.
The provided caregivers are not giving adequate care and are putting her health in jeopardy.
Her option at that point would be Long Term Care / Skilled Nursing
You could report the current situation to The local Inspection department if this is a rental unit it does not sound as it would meet code for safety.
You could report the situation as elder or Self neglect. (I suspect the caregivers would be written up as well for providing sub standard care.)
IF she were to be declared incompetent you or other family member that wanted to could become her Guardian or it would be left as a Court Appointed Guardian.
But if she has not been declared incompetent you can not "force" her to accept care.
If her unit gets into a bad enough state I will, but I will not be the one that forces her from her home. I cannot do that unless there was a very serious risk in her house. She knows enough not to try things on her own and does take things "slow" around the house and would not attempt stairs.
She is definitely not at the point of "incompetence", so for now, I just try to respect her wishes (and choices - this one is hard) and make suggestions to her. It's just wearing on me...
So when in rehab & LTC is discussed as an option or advised, the staff do not bow to patient's wants & demands, certainly not because of strong willed opposition. They may allow a patient home to abide the law. To respect patient's autonomy & rights.
"strongly opinionated/stubborn and can be offensive, or ends up crying". Rehab staff have seen it all before. They also are not related - not emotionally triggered by it.
A patient going home is best if possible. It can be done as a 'trial' (Plan A). If it becomes unsafe or unworkable, a Plan B is required.
Many guardianship applications are sought, a person stating they can live at home independently - a relative disagreeing. I have read some of these: Elders, dementia, frailty, mental illness, aquired brain injuries, intellectual disabilities. Home may be trialled first. If not able to succeed safely, with or without supports - if danger to self/others is found, home support services are insisted on. If these are refused (or agree but then not let in, or face danger), guardianship may be granted (despite strongly opinionated protests) & the person moved into care.
I would consider letting Mother to home to be that 'trial'.
Yes, we did a 3 day "trial" - she had 72 hours to change her mind to decide if she wanted to go back to the hospital and be transitioned to a rehab. We're now 8 months in, so long past that. She has 2x daily PSW visits, primarily to feed her and give her a sponge bath/wash her hair (supposed to be 1 hour, she said usually 15min and they zip in and out and don't ask her if there's anything more that she needs) - basic needs are about all they are willing to do, even though during my mom's assessment "light housekeeping" was also identified as needed. In Ontario, there is a shortage of PSWs, so they are allowing nearly anyone in to provide support - and some who should not, but there's not much that can be done as "this is the norm" per my mom's care coordinator... it's sad.
SoloSheGoes, I agree, it is sad 😥
Thanks for explaining the discharge & rehab part. I think it is very similar here.
I'm trying hard to think what else you can do... Besides joining the 'Club'. The 'Awaiting a Crisis Club'.
That's what my Dr said. Awaiting a crises, a bad fall, burn, illness, then get EMS to ER & then a Social Worker involved. Sometimes mobility or cognition declines a little & rehab gets forced - as straight home is not an option.
With hemiplegic arm, any injury to her good arm will prevent her from independent walking, transfers, toileting. Even with aides visiting 3 x day for meals & meds, this would not be safe.
So Mother is in quite a precarious situation. (Whether she has insight to this I don't know).
She is also holding onto her independence as best she can. Which is admirable.
You have the PSWs. I HOPE they can report to their superior immediately if any problems? Or EMS if needed?
Adding private pay PSWs (ie more eyes) sounds a great idea. I wonder whether a 'therapeudic fib' could be used to start a trial? I bet Mom gets used to the new staff (hopefully friendly, regular & less rushed).
My LO has! Similar tale. Rehab then home despite advise for LTC. Falls +++ PSWs accepted - took strong arm ultimation & Dr's advice. More aide hours/visits & falls alarm again took MUCH time & 'tough love' to accept. Now accepting of aides, but not of wheelchair or other items that could assist. So I am certainly in the 'Club'.
Not sure what you mean by a "therapeutic fib"? To the new private PSW? We did actually have one visit and speak with us, and my mom liked her (though it would not necessarily be here each time), but again, does not want to spend her $ on extra help...
Yes, sounds like you have a similar situation - it is such a struggle to watch!
Maybe by rephrasing the question to her: "You want to live here. OK, I support that decision. However, if one day you couldn't - would living closer to me be the next best option?"
I don't usually ever advise moving an elder or a dependant/about to be dependant family member into your own home - but if a crises did loom.. would you?
Could that be a stepping stone to an assisted living near you?
You would need to be VERY prepared, needs assessment ready to roll, have Medical POA, the legal authority to sign etc.
I can't/won't do that due to lack of space, stairs & many other reasons but I've heard it can work.
Heard a few times when aging, only just coping folks came to stay.. fell, #hip, ER, rehab, home to daughter's while paperwork done & care home selected, then into care.
Also sad. But sometimes necessary.
I have a general POA document, but have not enforced. But I would ever force her to move into a home if she is still of sound mind.
I think physician or other professional will approve for Mom to go to rehab again, Mom can try it again. Difficult yes but not impossible.
A nice name for a lie basically. But a lie told to enable a therapeutic benefit.
Examples I've read: meet my friend 'Jenny'. She is out of work & is looking for house cleaning in the area. Bingo. Light housecleaner + bathing aide + supervision! Jenny has a few friends too..
The council have introduced a new service (no/low cost)& have sent someone over to clean.
Meal delivery service has been provided by rehab for 6 weeks. Or recommended by the Doctor from this very low cost company.
Often used for home care services to get that first foot in the door. Also to get the unwilling to the Doctor's for an 'annual checkup' or flu shot - & while we are here I may mention a concern with X.
'White lie' is another term used. Or I liken it to working 'behind the scenes'. The person on stage doesn't always need to know exactly all the smaller details that go on to support the show 😄