My mom's stroke was in April 2022. She's now paralyzed on the left side with no 'return' of movement at all in the hand/arm. Little return in the leg so she can do transfers in/out of bed but that's it-all ADLs (except eating) require a 1 person assist basically. She's been in rehab 5 days a week since April - the rehab staff in the nursing home will discontinue all therapy (PT/OT) and give her the news of this in a few days as there hasn't been much improvement.
Our entire family is MIA (just a lot of dysfunction) so it is totally just she and I. She's in a nursing home right now which she is not adjusting to well at all (she lost her house weeks before the stroke).
I am desperate for tips on how to support her better as I feel I'm failing. I visit her several times a week, bring her supplies (blankets, clothes, shoes, incontinence pads and briefs, tissues, sanitizer, soap, hair products, etc etc), food/treats, take her out once a week, hire an agency to take her out once a week as well (which is getting to be 'very' expensive). The issue is this: If I ask her if she needs help with something while say for instance, we're doing a bed bath, she'll say "I guess I thought you had enough sense to be able to just KNOW". If I don't ask, and I just 'do', she'll say "I can do that!" and she'll get agitated saying I'm trying to be in control of everything. If I don't do anything, then she tells me she "knows I'm not taking any initiative to help her because I don't want to help her and I want to see her suffer and she doesn't know why I'm there since I have no intention of helping.
We didn't get along that well pre-stroke. I'm considering bringing her home to live with me once her disability check comes through. But I feel like we need counseling because we argue SO much now and it takes a toll on me seeing her in the physical and mental state she's in, then on top of all of that her speaking to me in the ways I mentioned above-although I'm the only one here/supporting I feel like I just.can't.do.anything.RIGHT.
I know part of this is mental illness which existed pre-stroke playing a role (pre-existing bi-polar/depression/anxiety/PTSD from major trauma/hoarding/OCD which has never been treated).
Tips? Is there really anything I can do better or do I simply need to adjust my expectations that my mom will practically never be able to healthily adjust to her condition (at least to the point of not being SO argumentative all of the time with me)? I just don't know I can take her in and continue working while dealing with so many of the personality/relationship issues on top of what's needed to just provided daily care for her as a stroke survivor.
I really could use any/all advice/insight.
Yeah, I've never known her brain to function logically.
The best present you can give to her and yourself would be to find a facility to move her to that will last to her dying years. Apply for Medicaid if needed. Get her set up so that she does NOT rely on you.
Then after you move her into managed care, go visit her as much as possible. Take her on outings, bring her treats, take her to doctor appointments. Listen to her complaints. If it gets overwhelming, tell her you are going to leave, and leave.
With the stroke, you never know what is going to be next. In my brother's case, having the stroke was the easy part. Life after the stroke was hard. He was not allowed to drive; he was not allowed to cook; he didn't have the stamina to walk around Costco; he couldn't drive one of the wheelchair carts either. He couldn't necessarily eat or go to the bathroom or shower by himself as his body would occasionally "lock up." As his brain started to heal itself, he went through a time when he was constantly nauseated. Yes he was grouchy. Who wouldn't be. He absolutely hated the fact that he was dependent upon someone, or anyone all the time. However, that was his future.
As a caregiver, in order to give your best care, you need to be able to walk away when frustrated or angry, and then bounceback. You cannot do that if the person is living with you without destroying yourself. In addition, if you should get sick, you will need a backup plan for care.
The best gift you can give to your Mom and yourself is to research and prepare and guide your Mom to live in managed care while you are able to make a careful, rational decision. Be warned, it takes a minimum of 2 months for anyone to get used to the new living situation.
However, it sure is better than the nagging, the constant fights, the putdowns, the accusations, and the negativity that just occurs when a person is just not feeling good.
I had gotten a quote from two facilities abroad that can place a full-time caregiver in the home. They provide backups. Doing that plus adult daycare was my plan. If she stays in a facility here, there won't be a 'visit her all the time option' because I'd eventually have to move away from this place. I was born/raised here, have my own traumas associated with having grown up here, and never thought I'd be living here again. She can stay here; I cannot. And even if I don't get to settle/retire abroad and I instead end up living in another state, no, I wouldn't move her to another state. Because I move around the US too much to be moving her around the US with me.
Medicaid and disability were applied for 8 months ago.
Excellent point regarding what happens as a backup plan if I bring her home and I get sick; it's a real concern.
I'm sorry what happened to your brother. How is he doing now?
I hate what has happened. I've been trying to be more positive lately but at the moment all of this just sucks and what I hate the most is having to have moved back to my home state. I know God probably wants me to just be patient and 'still'..focus on gratitude right now and be here for my mom, and I'm trying to do that, but I don't know how long I can last here or be 'chained' to this place which the whole being 'anchored' to a city (as a life-long single person and renter) has always been one of my biggest anxieties.
Visit her less, once a week is fine. If she calls and whines, just say goodbye and hang up, then do not answer any more calls for the day. If there is a real emergency the NH will call you.
I don't think there is a right or wrong way but it amazes me how many responses I've read in other places from non-Americans that were along the lines of "I took my parent in for 20 years, did back-breaking work for them and was yelled at every day but wouldn't change a thing because in my culture, we take care of our own and it was my 'honor' to learn how to sacrifice for someone who wasn't even that great of a parent to me because it grew and strengthened me."
The one thing that saddens me is how there 'is' no 'it takes a village mentality in our culture it seems. If I weren't so on my own and there was a strong support system it wouldn't be a walk in the park to bring my mom home, but it would be doable and likely some valuable growth and lessons would happen for all as a result of it.
Now, don't get me wrong. I believe there are situations where its likely best a person be in a facility and those situations typically (from what I am reading/seeing) involve severe physical debilitation (for example, 2 person assist for any kind of transfers) and/or severe memory loss (wandering, setting fires, etc.).
My MIL has the same mental issues your mother has and is a changeling. She can be pleasant if she wants something, but once she has it, the inner demon returns:
My husband knows this & refuses to have her in the house. Keep her at arms length and be brutally honest with her. That is the only way towards understanding.
Continue to bring what she needs, but she must be told right away that the facility will discharge her for failing to improve & she can’t come to you.
Your physical and mental health will depend on having your own space and limiting the impact she has on you. Blessings on you. It takes strength and fortitude to withstand to onslaught.
So far, the only resolution I have for bringing her home is moving abroad as that was my plan before her stroke as I wanted to retire abroad. I just thought I'd be moving alone. But I found 2 agencies that will place a live-in full time caregiver. The agency handles all of the legalities and taxes, etc. They place a backup when the live-in is sick, off, etc. Using them plus adult daycare locally was my plan. Otherwise, I can't bring her home in the US because I can only afford 4 hours of care daily and that's not enough. I need a live-in. I didn't think this was such a horrible idea. The 'bad' days with my mom are only about 15% of the time. Yeah, she's likely going to progress at some point one day and things may/will get to be so that she can't live with me anymore. Right now, while she can still eat on her own, converse with me, remember things, has the desire to go places, have hobbies, etc., I figure is the best time for me to try to be close to her and do some, say, 'bucket list' things we had on our list together. Because I don't know how much time we'll have left now to do that stuff as things could get worse at any moment. I can't even spend the night with her with being in the nursing home (they said because she's part of a charity program that pays for her bed, my mom can't leave the facility unless I pay $250 a night to 'hold her bed' and if you could see this place...I simply refuse to give them that kind of money).
Anyways, I probably made no sense here whatsoever. I'm just venting (ranting really). The point I was going to make is that if she's going to stay in a facility in this area then I might as well just move ahead with my plans to leave the country..alone. Or at least go to another state I want to live in because here is NOT it and is not going to work..I feel I'm on the edge living here already and it's only been 8 months. And no, I wouldn't move her with me to any other state because I move around the US a bit too much to be placing her based on where I live at any point time.
In short, if she has to stay in a facility locally and doesn't 'come home' to live with me (abroad since I can't afford full-time care in the US), I don't know that I can stick it out and live near her anymore.
Bringing your parent home, especially a parent with medical challenges like your mother's, is a full time job - 24/7. You will not have a day off, you will not sleep through the night, and your mother will become more demanding and more critical - it is just the way things are. And what happens if you become ill - who will take care of the two of you at the same time? What about when you need to take a small weekend get away for sanity sake, or even longer time frame?
Your mother is in a nh and if you can afford to do so, this is where she should be. If funds are limited, then start the paperwork process to qualify her for gvt assistance.
Her nursing home here in the US is over $7k a month and the last caregiver that came out to see her and taker her out told me she'd been doing caregiving for over 10 years and had 'never seen anything so horrific'..that it was the 'bottom of the barrel and I needed to get her out as soon as possible; that no one should be placed in a so-called facility this sub-par'. I already knew it was bad, but the agency workers who I pay to come out are pulling me to the side asking how soon I'm going to find a way to get my mother out of there.
We started the paperwork for disability and Medicaid 8 months ago. In the state we're in and on Medicaid, she's not going to be placed in any type of 'nice' nursing home, I think we can all agree on that.
She also lashes out at us when being cared for due to I think frustration with herself not you. Trust me when I say you do not want to bring her home with you. She is probably getting better care there than you could provide for her by yourself at home. Keep doing what your doing or maybe just be there as a daughter and let the staff take care of her adl's. Keep in mind strokes affect the brain and some people's personality change afterwards.
Whatever you decide she knows your there doing your best for her deep down and appreciates it. Maybe it's time for you to take a vacation from everything as well. It won't do any body any good if you don't take care of yourself. Guilt free.
I hope this helps somewhat.
On the good/decent days (80-90% of the time) I'm fine and I think I could bring her home with a full time live-in caregiver (plus the use of the current agency I employ for backup + adult daycare for extra backup).
On the worst days (10-20% of the time), I just want to say 'forget it all' and just move forward with my planned life of moving abroad 'alone' and not worry about anything..like my brother does.
Life seems like an emotional rollercoaster of decisions these days.
But it turned into advice on not bringing her home which I already knew everyone in this forum is against doing that.
Do you and your mom live in the US? What is her condition? Do you feel you made the right decision in having her home with you?