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.
No, no, no!
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.
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.)
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.
Leave her in the nursing home where she belongs.
My son said there will be robots to look after me.
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.
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.
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.
So she was much sadder in the home? Where was she before? A nursing home? Did she go back to where she was originally?
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.