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I am looking for advice about my mom. She had a stroke April 2022 and has left sided paralysis. She is currently in a nursing home. She has had 0% return of movement in her left arm/hand which concerns me a lot. She has a little return of movement in her left leg but she can only stand with support for a few minutes at a time. She can't really transfer to the toilet yet. She does transfer into the bed alone but I admit it’s not quite safe to yet (she had a fall recently) - she takes 5-10 mins to transfer from the wheelchair into her bed. She is indigent (no house or assets or income or job or pension/retirement) - she has literally nothing, including no insurance. We filed for Medicaid and SSDI so that's pending. She's currently part of a (we'll call it) charity program that's given her a bed free in her current nursing home for one year. At least, that's what I was told months ago. Currently, they are telling me they actually 'don't know/can't confirm' how long the program will pay for her bed. It's kind of a MESS.


I'm hiring a social worker to help with some of this. In the meantime, I really want to get her out of the nursing home. However, I do understand the importance of the rehab she's getting in the SNF - she currently gets it 5 days a week (PT/OT). The SNF said once Medicaid gets approved, the rehab will stop. So now that I know the rehab will stop, I don't see the point of keeping her in the SNF after that. She has some mental issues (hoarding, depression, anxiety, OCD, 'likely' PTSD as she has suffered a major traumatic event).


Considering all of the above, I'm trying to understand what living situation would be best for her? ALF? Board and care? Home care? I want her to stay in the current SNF for a little while longer to continue getting the free rehab. I thought about moving her closer to me to another/different SNF (she's currently 30 minutes away from me). The reason for that would be the current SNF is not good (think: roaches in the bed, missing administering meds, consistently not bathing her, etc.). I'd be willing to move her into an SNF closer to me (if it's possible) for until I figure what's best next.


She wants to live with me. I've been reading a lot on what it’s like to be a caretaker and I know it would be a lot. I'm not sure I'd find a reliable person. I've recently hired an agency to send someone out to her SNF once a week to take her out and even that agency has yet to find an aid to help, it’s been two weeks. I read there are a lot of issues with getting consistent, trustworthy caretakers. However, I do lean towards her being home. She is having frequent 'breakdowns' in the SNF. She refuses meds for depression but I don't feel that's the biggest of her issues honestly. We don't get along all that great and I fear it would be worse with her living with me.


I'm her daughter and I'm 43 with (fortunately) no husband or kids. I moved to her state basically the day after I found out she had the stroke. Also, to make a very long story short let's just say we're both estranged from family - no one will help (not even a text) so I'm 'very' alone in all of this fyi.


So. Considering all of the above, I'd really just like some honest opinions - considering her current condition (and let's assume it doesn't improve much more than this), is she 'safe' enough to bring home? Would you bring her home? Would an ALF be suitable for her? Or, do you think she is 'forever nursing home material'? My mom is only 63; she has little cognitive issues and wants to 'go back to school/take a course', go back to regular bible study/church services, etc. In other words, be active. I feel she still has some good years ahead of her and although I'm scared at the prospect of bringing her home I know how hard she supported my sibling and I growing up as a single mother and I'm willing to be 'challenged' to help her. Thanks in advance for your thoughts.

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“We don't get along all that great and I fear it would be worse with her living with me.”

No, no, no!
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Honestly? At this point, no way on earth should you bring her home to your house at this time? She needs to be able to do a LOT more before even considering it. The appropriate placement for her now is a nursing home. It's great she's getting PT/OT 5 days a week and that she is trying to get better. For example she needs to be MUCH more independent like being able to safely do all her transfers and take care of all her bathroom needs.

You can tell her that once she can do X, Y and Z, and the doctor says it's OK, you'll look into ALFs for her. Since you don't get along well, you should never consider moving her in with you. Just say no. Remain her daughter, not her caregiver.

Good luck.
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I just moved my mom into our apt this summer (hubby and I) and two things are true. I love my mother deeply, there is no disagreement between each other that we could not overcome. The second thing is I am deathly exhausted. My drs/specilists are looking at me like I ama manisc f==wwq

I am going to leave that typo there. That's how freaking tired I am trying to answer this. This is a couple of "free time" hours I get a day spent reading here or staring/listening blankly to Youtube :D Be prepared for every instant having 5 things at onc that need doing leaving you endlessly trying to prioritize.

I regret nothing in my situaion but that's now and that's me. Others mileage would vary. But seriously unless mom is going to be loving kind and cognitive enough to be super gratefulmight just have to trust the judgemnt (like my mom has cried at least a couple time and asked my hubby for a hug with her tearfully thanking him and eloquently explaining that she is painfully aware of how hard it must be on the household to have her here in the state she is in.)
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Making threats of suicide is a big red flag here.

If she is serious, all the more reason to be in the snf.

If she is not and this is manipulation, then expect her to start her senior brat hysteria at your home.
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Your mother, and all of us, have three possible paths: die young before losing independence, live in a facility, or ruin our children’s lives by moving in with them.

Leave her in the nursing home where she belongs.
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Beatty Nov 2022
I'd like my facility to be a cruise ship, thanks.
My son said there will be robots to look after me.
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The big red flags I see are mom's non-compliance with meds BEFORE the stroke, her refusal of anti-depressants now and her hoarding. All signs of someone who is and has been mentally unwell.

Your mom needs more care than can be given at home by one person; aides are terribly difficult to find right now.

Work with the SW to find a better facility and the right level of care for mom, or you will be, as CM says, looking to gnaw your leg off. She's been down your path.
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PsalmsTestimony Nov 2022
I admit they are all indeed red flags. I try to imagine what our days would be like living together and I can't really. I just don't even know what to expect. I figure spending more time together might help me get an idea of it..so I do occasionally bring her home on the weekends. But it's just not a real taste of what it would be like, I know.

The SW in the facility is no help at all. Every time I've asked her a question the last 5 months she's told me to Google the response basically. I've hired an external social worker I really really hope can help me out.
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Laugh, then try to get a Case Manager.
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Another 2c from me.

My Mother wanted to come home..
HOME.
Where she used to feel normal.

When she got home, she was so very sad the stroke came home too.
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PsalmsTestimony Nov 2022
Ugh..that is SO sad to hear.

So she was much sadder in the home? Where was she before? A nursing home? Did she go back to where she was originally?
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Psalms, is mom working hard to get better?

I ask because a nursing home has requirements for someone being there. You can't just stay or go into a nursing home. I think that is a big deal, she needs 24/7 skilled nursing or she would not be there.

If you guys don't get along, that isn't going to change. She is going to have needs and wants and she may or not be reasonable about her expectations of how you are doing those for her.

A stroke causes brain damage. She could remain the same or not. Are you prepared to deal with her being bed bound? Would she quit trying to improve if she gets her wish of going home?

Caregiving is challenging when the relationship has been wonderful. I don't know if you could survive losing your independence and dreams because her choices landed her in this situation.

Please think this out very carefully because getting her out will be way harder then bringing her home.
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PsalmsTestimony Nov 2022
She is indeed trying very hard. The OT and PT tell me she is trying to 'overdo' it in rehab and they have to tell her 'that's all for the day'. It's clear she just wants to get...out.

Yeah..I definitely can't have expectations we will get along any better living together. I do indeed believe that will get worse. Sigh. I don't think I'm prepared for if she were to decline more after coming home. I also have 'no clue' if she would stop trying to improve if she came home.

I've been posting on forums for a few months now trying to get different opinions/insight on this situation as I am indeed weighing the pros and cons in my head along with the seriousness of this decision every.single.day at this point.
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Do a trial run first. Take your weekend plus three days’ vacation to go to moms snf. Observe and train on every task, especially bathing and toileting.
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PsalmsTestimony Nov 2022
I am currently bringing her home a couple of times a month on the weekend. But we are just sitting watching tv. The hardest part about the house I'm currently renting is no stand in shower (we haven't attempted to bathe yet). I bought a ramp for the front door so getting inside is fine. Everything in the kitchen is too high for her to reach (bathroom as well).

I do already toilet her inside the facility. I 'spot' her when transferring into her bed in the facility, although she did that alone last time I spotted her (I just watched). I think she needs more work transferring into the bed though; although she's doing it, it looks super dangerous, I don't think she's supposed to be doing it alone yet, and she fell recently one night doing it alone fyi. She can't toilet alone yet at all.
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What does the physical therapist say about the likelihood of her recovering use of her arm and leg? It seems that she'll need to go on medicaid once the physical therapy is no longer helping. Can you go in to check on things often in this not so good facility until she get better? Your home would have to be handicap outfitted if you decide to take her in on hospice. As far as I know Hospice won't pay for the room in assisted living, only their services. The services they provide are few: a nurse about once a week or so, an aide to bathe her maybe once or twice a week, her medications, a bed, a lift, and a doctor consult maybe once a month. I think hospice with medicaid will pay for nursing home completely, but you should check on all that. I never had to deal with medicaid, so others know more about it. I would suggest moving her eventually to the better nursing home near you in the particular circumstances she is in. She can take on-line classes there. Church services are usually provided, plus activities for those capable, which she seems to be.
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cwillie Nov 2022
I'm not sure why you've brought hospice into the conversation, the OP's mother is only 63 and although a stroke has left her physically challenged there is no mention of any kind of terminal diagnosis.
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I think the possibility of her being able to live outside of a facility depends on her being able to walk and transfer, at least to a degree. I knew a man who had a crippling stroke at a relatively young age that left one arm useless and his speech difficult to understand, but with therapy he was able to walk (mostly dragging his leg), get around town using a scooter, and attend to all of his ADLs independently. If your mother can't reach that level of independence then I think some type of care home is probably the best place for her, especially since she doesn't seem to have the financial resources to pay for any satisfactory alternative.
And a nursing home is not a prison, there is no reason she could not go out to
"'go back to school/take a course', go back to regular bible study/church services, etc..in other words..be active"
if she is physically able to do so.
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PsalmsTestimony Nov 2022
Thanks for your point about the nursing home not being a prison. She says thats exactly how she feels it is. When I take her out on the weekends (1-3 days out of Friday-Sunday), she does 'much' much better. So I'm trying to do it consistently now. The last weekend I didn't actually take her out, when I went to visit she was having a crying meltdown saying she wanted to commit suicide like her brother did. She is very emotional (I must get it from her) and I admit I probably would be too..this is all still quite a bit new.

You also make good points regarding her maybe coming home being dependent upon her level of mobility. That is really hard for me to gauge - understanding how well she'll be able to get around in the home. I tend to think on the more positive side about that, but maybe I'm exhibiting thinking that's more along the 'wishful thinking' side more than anything..IDK.

I'm currently trying to get an agency to take her out once a week while I take her out once on the weekend which I'd think could potentially help her out mentally a lot.
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Wake up when Mom wakes.
Help Mom stand & tfr to commode. Help Mom wash, dress. Clean up commode. Make breakfast for Mom. (Ensure fluids are thickened if needed & food is softened). Dispense Mom's meds.
Check what appointments Mom has coming up, doctor/physio/podiatrist /other specialists etc.
Set up an activity for Mom inside, or take outside in wheelchair. Do home physio exercise program.
Prepare lunch. More toileting. Try to convince Mom to take an afternoon nap.
Set up an afternoon activity if not going out. Be ready for late afternoon time when she may be restless, bored, tired.
Prepare dinner. Ensure food she likes, can chew. Medications if due.
Help Mom stand (now more fatigued) to transfer to commode. Clean up. Change Mom into night clothes (including any night incontinence pads if needed). Ensure bed has mattress protection in place. Help Mom stand to transfer to bed.
Depending on day she may settle quickly, or not. Be in pain or emotional fatigued. There may be exhausted crying spells.
Mom may need your help to reposition in bed every few hours.

There may be little moments of true joy in your day, when you connect, share a fond memory or she thanks you with love. Or not. These special moments may be far spaced for some, or sadly non-existent.

I don't tell you all this to depress you. But to be realistic.

Come back & tell us the REAL reason WHY you want Mom out of the Nursing Home.

It is because you want to BE the nursing home instead?

What are your Whys?
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PsalmsTestimony Nov 2022
Mom's not on a soft diet.

But I get your point - I haven't thought about doing anything with her during the day. Just meal prepping during the weekend so she had stuff to eat during the week. And then the toileting. I need support with the toileting during working hours along with transportation to appointments or 'getting out' during working hours.

I really really don't want to be the nursing home.

What a good question you asked. I will answer it by saying: guilt of her being in a nursing home and fear of what appears to be her breaking down while there because she hates being there and is not adjusting.
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She'll be safe enough if you take her to your home.

But you won't.

Once she's in your home, there will be little to no support from public services to find her anywhere else to live - because you will have made her your problem and not theirs. I hope she does have many good years ahead of her and I hope she (with your help) will find the right place with the right support to enjoy them, and to find peace and fulfilment. But if you take her into your home you will be wanting to gnaw your own leg off inside 12 months. Do not do it.
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PsalmsTestimony Nov 2022
I certainly don't like the thought of wanting to gnaw my leg off from the inside out...
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I’m guessing that you will need to work. You’re only 43, and need these years of employment to build up your own retirement.

During work hours, Medicaid will probably not cover those 8 hours for 5x/week. How will you handle helping your mom with toileting throughout the day?

It doesn’t sound like she can make her own meals, so you will at least have to be responsible for her lunch.

What about doctor’s appointments? Can you take off work to get her to those?

What about when your mom needs, well, ANYTHING during the day while you are supposed to be working?

Are you prepared to stay home with your mom, day in, and day out, since she can’t be left alone?

Are you ready to completely give up your life to be a caregiver?

I’m so sorry that you’re both in this situation, and that you are facing decisions such as these.
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PsalmsTestimony Nov 2022
I work from home. I've been a remote employee for 5 years. I admit - who knows if/when that could change (which would be a big problem). But even working from home..yes, I admit I'd have to participate in the meal serving and toileting. I was hoping she'd make enough progress to be able to toilet on her own, however, I have no clue where we'll be with that in another, say...6 months.

My 'current' plan is to 'try' to get her closer to me (like within 2 miles close) so I can visit more frequently/longer. I do currently take her out on the weekends which I admit is exhausting because of the driving out to the SNF, then having to bathe and dress her first b/c the facility does not do it. Plus the 'lugging around' of the wheelchair, which luckily I just replaced with a super light one.

On a side note, I begged my mom when she was running 210/150 to get on bp meds for decades. I only succeeded once and even then she only took a few pills likely. Because of this I struggle with the mixed emotions of sadness/empathy but couple with a whole lot of resentment because she argued so much about not needing the meds.

Anyways, am I ready to give up my life? I don't think so. I tend to think it would just be a 'much different, harder life' that would take time adjusting to and have a lot of challenges in terms of getting 'half-good support'.

Can I take her to appointments? Depends on how frequently they are - sometimes I attend them now and just adjust my work day since I work from home.

The other piece of this is that I'd planned on retiring abroad. May not happen now, but who knows..it's too early to say. I'd been outside the country when the stroke happened..'scouting out' the other country as I was actually abroad to try to see if it was a place I could retire to, and to learn about the quality/cost of healthcare there. Since I had to return early from that trip, I have someone in said country looking up nursing facilities there. The cost is much lower there and so is home care (low enough for my mom to possibly be able to cover 12-hour a day/7-day a week care on her SSDI alone if that comes through). So although it's an unlikely scenario (and not necessarily a good one for her b/c it requires a TON of change), I haven't completely ruled it out yet fyi.
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The fact that you and mom don't get along is a really big issue.

THAT won't get better with the intense closeness of living together, more likely it will get worse, and you may find youraelf down the road absolutely hating every aspect of your life.

The hands on CG she requires--and will require for some time, cannot be done by one person. You're going to need a team.

For now--just begin checking into long term permanent places and just visiting her when you can.
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You sound like a really wonderful daughter, and your mom is lucky to have you working on solutions for her.

Don't have her move in with you. Your life will never be your own again, and since you're not super close anyway, why have two of you be miserable? If she moves in with you, it's likely she'll never move out of her own accord, given her limitations. You'd be the caregiver, and it sounds like she needs a LOT of help. Can you give it? Do you have enough money to pay for good help? There's a HUGE shortage of aides because so many of them are paid so poorly, and the amount of work they have to do is crazy.

Are you willing to let your home become overrun by her hoarding? That's a mental illness that's really hard to cure.

Right now, she's getting rehab and care. Before you do anything, see if you can find a better place for her. But for your own peace of mind and sanity, don't have her come live with you. It sounds like a disaster waiting to happen.
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Honestly let Medicaid take her over, she can live another 20+ years. Safe to bring home? IMO No Way, she needs too much care and you are not clinically trained, this will only get worse, there is no better.
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