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JayJessW Asked April 2018

I can't take care of Mom who just had a stroke and I don't know what to do.

Mom had a stroke down in South Carolina a couple weeks ago. She is in her late 50s. I am in my later 20s and live with my grandmother who is in her early 80s. Grandma still works weekends and I work part time to help out. I have an older sister who is intellectually disabled that had been in mom's care but because of the stroke and another incident before the stroke happened, grandma and I had to drive down from Virginia to get sister. Mom was in the hospital and we could not stay. I was not able to drive back down to get her so my friend drove my grandmother and picked her up from hospital when they said she could leave. She had had a brain bleed. After three days of being with us in VA, she seemed to relapse. She wasn't eating, drinking, or taking her meds. She would fuss at us to leave her alone. Grandma had to call paramedics to take her to the local ER where they did a scan and saw she was still bleeding. They transferred her to another hospital where she was in the neuro ICU for day or two before transferring to another part of the hospital. She was there three days and just discharged on fourth day. Now, she has been home 1 night and already its apparent Grandma and I cannot care for her right now. She has a follow up doctor appointment in one month. Mom thinks she is alright and can travel to her home in SC by herself (and with sister but that cannot happen). Mom is very unsteady on her feet, cannot walk a straight line, is a serious fall risk. She also abuses her medications. Grandma has her meds and was giving her what she needed when it was time but mom has been fussing that she needs more of this or another of that. In the middle of the night Mom got into Grandma's own medication and took something. Didn't seem to affect her whatever it was, but it was a rough night. We all hardly slept. Mom is very stubborn and can't comprehend reason right now. She has tricare thanks to her deceased husband so a skilled nursing facility is covered. We just don't know how to get her into one. Apparently the nurses and doctors at the hospital even suggested that but grandma didn't feel like 'abandoning her'. But now it is evident she needs more care than we can give. What do we do? Do we call social services? Adult protective services? She is not capable of being on her own right now, especially not in another state where there is no one to look in on her.

JayJessW Apr 2018
When we get the guardianship straightened out we do plan to look into medicaid again. She has medicare but did have medicaid at one point a while back. I do plan to try and get a companion or aid that can take her on outings a few times a week to give Grammy a break while I'm at work. There is a special Olympics group in town she was once apart of we will look into again even though her ex boyfriend still attends LOL

JoAnn29 Apr 2018
So, so sorry you and your Gma are going thru this. Remember, at 80 your Gma is going to feel overwhelmed even more than you. Having a special needs person to care for is going to be a big adjustment. Some advise and the other members will agree, don't take Mom back. If she winds up in the hospital again tell them she has no place to go. That Gma is 80 taking care of a Special Needs granddaughter and you must work. Be addimate. Don't let a Social Worker say you must. You and Gma have taken on a big responsibility. Gma can't handle Mom too.

When all gets settled. See if Medicaid will pay for sister to go to Daycare. They will base the cost on her income. With Moms DC, they provided transportation. Breakfast and lunch. Activities and outings. They even showered Mom for me. Will give Gma a break.

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JayJessW Apr 2018
Yes, sister is up here with us permanently now. Either Grammy or I will get guardianship of her soon. She cannot live with mom anymore.
Grammy called the police down in Charleston and just have a heads up on mom and to check on her well being since she thinks she can drive. She explained the stroke, head injury, but not the drugs.

cwillie Apr 2018
If she's a heroin addict I imagine her life has been a train wreck for a long time, I think you need to go back to doing whatever your lives were before this new health crisis sucked the family back into her dysfunction, you are powerless to help her... (sorry if this sounds too blunt)

I just re-read your original post... where is your sister, is she safe?

Iknowthetruth Apr 2018
Jayless, i am so sorry to hear about all you have been going through. You and your Grammy have done everything you could do. You checked everywhere for help and found no support. It sounds like your Mom is addicted to drugs and is going back home so she can do that without someone trying to stop her. You and Grammy tried. It's her battle now. I pray it won't turn out horrible but you can't make her change. Drugs are powerful and destructive. Again, I am so sorry...

BarbBrooklyn Apr 2018
Jay, let your mom be. If there is no one there to support or pick her up, she'll get the help she needs.

Point out to gma that mom would have walked out of a SNF as easily as she did the hospital.

Mom clearly has mental problems that have been exacerbated by the stroke. She is someone who has needs beyond those of family's capability to tend.

Your job right now is to help your sister; mom is is no shape to care for herself, much less another vulnerable person.

Don't go and rescue mom. Repeat, leave mom be. She will have to be found incompetent before she can be forced to get help.

JayJessW Apr 2018
Update:
Well we thought we'd have a day or two of reprieve from Mom to figure out the next steps. Grammy spent yesterday on the phone talking to social worker at the hospital, adult protective services, and even the local behavior health center that has crisis counselor that could come out and evaluate mom.
Guess what?
Mom checked herself out of hospital AMA. No one stopped her. The psychiartrist didn't come to evaluate her. The nurses couldn't make her stay. Social worker, adult protective services, nor the crisis people would do anything.
So mom checked herself out while I was at work. Grammy and sister had to go get her. Apparently she came out still in the hospital gown. She was in the damn ICU with a central line after ODing on something she had taken and yet, she was allowed to leave with no evaluations from anyone.
So what could we do? Nothing. Mom booked herself a train ticket and left last night back to Charleston.
When she got to Charleston, she fell getting off the train. Got a gash in her head and thinks her wrist is broken. She's still at the ER but god knows for how long. Mom has already called saying she'd like to leave because apparently she isn't in a room but on a bed in the hallway and no one has seen her. Grammy talked to the nurse before Mom called and it seemed like they were going to have neurology come look at her but who knows. Update to this: she is leaving hospital soon. 
I'm done.
We tried everything. No one would help us. Hospital, social workers, magistrate, etc. No one. Everyone kept saying 'well, if she wants to leave'. So we let her leave.
The few friends down in SC said they'd look in on her. Mom also said she'd come back soon to see that doctor but who knows. Mom thinks Grammy is the one that has done all of this. Put her in the hospital, said sister can't live with her, etc.
Grammy is worried and is blaming herself for not listening to the nurses last week about putting mom in the skilled nursing home. Grammy remembered when her own mother decades ago had had a stroke or something and how she seemed to do better when she came home. I told Grammy its not her fault. We tried everything.
In the end, you can't help someone that doesn't want to be helped.

Thank you to everyone that has offered advice and support on here. It means a lot.
I will update again if anything else happens. Right now I'm just mentally drained from these past few weeks and need to rest.

blannie Apr 2018
Good luck and please keep us posted. Sending you all peaceful and healing vibes. I'm so glad you've got your grandmother and sister and you're all on the same page. Your mom is lucky to have you.

97yroldmom Apr 2018
Jay
Thanks for letting us know what happened. Taking GMs meds might have been a blessing in that it gave the authorities a reason to take her to the hospital. Hopefully they will help her. I know this is so hard for all of you. Glad you have good neighbors. Hugs

JayJessW Apr 2018
Update: So I went to work. Had to and plus I really needed to get out of the house for my own sanity. Before I left Mom was still ranting and raving about needing to leave and even tried taking Grammy's phone from her and knocked over a bunch of stuff in the bedroom.
While I was gone, Mom got increasingly more belligerent and aggressive. Cursing at Grammy and sister. Throwing things. Cops were called but did nothing. She even caused my sister to be knocked down. Nothing was done by cops or paramedics that came to help sister up. Sister went to neighbors across street for a few hours to get out of the house.
They finally did something when Grammy noticed mom's behavior had changed to grogginess and not being able to walk right again. She saw a pill bottle on mom's bed and mom wouldn't say where she got it. Grammy then discovered mom had found where her pills were hidden and taken them. Don't know what she took and how much. Cops and paramedics came back and this time took her to the hospital.
She's there now and will be for the night. Cops said to go to another magistrate in and try again.
I honestly think mom wants drugs. At the start of all of this, the reason she was sent to hospital in SC was originally for a heroin OD and then she was arrested and taken to jail for disorderly when they found something on her in the hospital. When she came out of jail, that's when she asked to go back to the hospital and the stroke was diagnosed.
If she's jonesing for a fix, then that is cause, I think for an involuntary commitment somewhere. She's an addict who needs help. She also has suffered from brain bleed from the stroke and needs help for that.

JayJessW Apr 2018
She took everything from the doctors we have gotten. I am going to tell Grammy to call the neuro clinic like you suggested and get in to the see the doctor about this. Mom will not put up with being here for a month until the follow up. This morning, during her ranting and raving, she kept saying she has doctors in SC to see and wouldn't listen to us telling her that she needs to see the neuro doc up here.

JoAnn29 Apr 2018
Surprised Mom was not put in a rehab after her first hospitalization. When Gma went to get temporary custody did she take something from the doctor? Have you talked to the doctor? Maybe you Need to make an appt with the doctor who said she Can't drive got have him sit down with her and look her in the eye and tell her how it is. With a brain bleed she may be showing Dementia type symptoms. This could last for a short time or longer. She is young for a stroke so this may not be her last. Have you talked to a neurologist?

JayJessW Apr 2018
Grammy just called. She's on way home. No emergency custody. Magistrate didn't find cause for it. F***. Sorry for the language.
We are back to square one. My cousin is a speech therapist who works at a SNF talked to a social worker there. They recommended mental health support services and a crisis line to get a TDO temporary detaining order. Ill let grammy know about it when she gets home. I just...I don't know why the magistrate said no. They could have at least had her evaluated.
This whole thing is just so stressful and overwhelming. I'm at my wit's end as I know Grammy is.

blannie Apr 2018
You and your grandmother are pretty awesome! Sounds like you've got things handled and will get your mom the care she needs - whether she wants to go or not. It's for her own good and she's just not competent to see that right now. Please keep us posted - we learn from each other. {{{Hugs}}}

JayJessW Apr 2018
Thank you all for your advice. Early this morning mom tried calling Amtrak to arrange to go back to her home in South Carolina. I had to take her phone. She became belligerent and fussing that she needs to leave to her home. We kept trying to calmly explain that she needs to stay here. That we need to take care of her and that she can't be on her own right. She didn't care or understand. She thinks she had been in the hospital because Grammy put her there. She thinks she did not have a stroke nor a brain bleed. She thinks she can drive down in SC. She is under doctor orders no driving. She kept yelling for a phone to leave.
Grammy called around. To the hospital again and even a mental health hospital to talk to crisis counselor. Crisis counselor suggested getting emergency custody of mom so that is where Grammy has headed out to this morning, to the magistrate office.
Mom is not competent to make any decisions for herself. She thinks Grammy is hiding her meds and not giving them to her which Grammy is (hiding and is giving them to her when it's time and the appropriate dosage) mom would take her meds like candy.
She needs help. We may get her into some type of rehab or skilled nursing facility. Or if need be, involuntary commitment in a mental hospital.

Countrymouse Apr 2018
Your grandmother sounds *amazing*. What a brilliant lady.

I should go back to the medical team that recommended the SNF and say you've changed your mind. To get round your grandmother's anxiety about "abandoning" her daughter, remind her that your mother is acutely ill and needs this care to recover. Given how young your mother is, and the nature of the stroke, it's not unreasonable to hope that there will be a good recovery: you're not lying or being euphemistic. But for that to happen your mother needs structured, planned care; and you can ethically override her own wishes on the straightforward grounds that right now her brain is injured and not working.

I hope the social workers your grandmother's in touch with are helpful - please let us know how you're getting on.

Shane1124 Apr 2018
I would encourage you to find out why mother was not admitted to rehab post stroke. This is usually the course of action to have the patient go to out patient rehab for a few weeks (usually less than 21 days if on Medicare).
Can mother swallow? Any one sided weakness? Can she ambulate?

Isthisrealyreal Apr 2018
The only thing I would think is that you, grandma, anyone else has to tell hospital that no one can take care of her and they must find a place for her to rehab. Do some google searches and show mom the statistical data on recovery in professional rehab verses just going home, this may scare her enough to go willingly.

GardenArtist Apr 2018
Jay, been there, done that, now dealing with the repercussions. I might have some more thoughts later. I do understand the challenges you're facing.

JayJessW Apr 2018
Garden Artist, thank you for replying. While Mom has tricare, she herself is not a veteran, just a spouse of one and he has passed. Tricare will cover skilled nursing facility.
The discharge papers just mentioned the follow up doc appointment in one month. No other therapies mentioned. But its clear she needs something.
Grandma is currently on the phone with the hospital social worker.
Mom will not go anywhere willingly, which is the problem. She is very stubborn, even when in a sounder mind.
We will check into the stroke recovery programs in the area, thank you.
We love mom very much, but we cannot keep going on like this with her. She needs more help than we can give her and she's too damn stubborn to go along with it.

GardenArtist Apr 2018
Sounds as if you can't get her to her own doctor, so try another avenue. How long has she now been out of the hospital? I would call the discharge planner (usually a social worker) and ask about (a) getting a prescription from the attending doctor for her last stay for in facility rehab, with Tricare financial assistance, or (b) getting a prescription for home care. It won't be satisfactory, but a nurse would do an assessment which likely would recommend in facility care.

Frankly, I'm not sure why the hospital would have discharged her directly to home w/o an intermediary SNF placement for rehab - or maybe I missed something in your post (I confess I read it quickly). Or perhaps that was the recommendation and your mother refused to follow it?

We've always gone directly from hospitalization to rehab, so I don't know if there are any time requirements for SNF care post hospital discharge. I would think though that the former attending doctor and the discharge planner could offer some suggestions that allow her to get home or facility care.

The next thing to consider is whether or not your mother might not want to participate in rehab care. You might have to be creative in convincing her that it's so she can regain her strength. This might be a real stumbling block, and you might even have to tell a therapeutic fib that she's just going to a "different" type of hospital care.

Another alternative is to research facilities with specific brain injury or stroke recovery programs. In Michigan, the Rehab Institute of Michigan, affiliated with the Detroit Medical Center, provides TBI recovery therapy. Google TBI rehab facilities in SC and VA.

You might ask the hospital discharge planner about TBI recovery programs as well as a regular SNF.

Another alternative is to

(a) contact the VA from which she gets any health care services, ask to speak with the social worker for her "team" and see what help is available (preferably immediately) through the VA. You may also get some good tips on how to navigate both the VA and nonVA hospital and care systems.

(b) Contact the VA, but go through the Caregiver Support portal. I've done that and found them to be very, very helpful and compassionate.-

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