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You do love your mother with caregiving methods on your own. Hope you do not get stressed out or even hurt, either mentally or physically, while doing this very difficult task. Hiring help from an agency means help is available, and these professionals are covered with benefits, especially worker's comp. It is expensive, but your mother will pay for more help than you are capable of doing. No one can work 24/7. Just to be a daughter and friend to your mother. You are important and need to take a break and better care of yourself, even to have some fun. My advice is to get help for your mother, She worked for it, even it means spending her funds down to Medicaid level.
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So I've done what you're doing now for my mother after she had a stroke. Looking back now that I'm not sleep deprived and worn out after working 24/7, it's important to take breaks for yourself and to take care of yourself. You can't help someone else if you're not feeling balances and rested. I thought that my mother had to always have someone with her, and thought that I had to cater to her every need and listen to her every word patiently (it was 99.99% negative and ungrateful garbage coming out of her mouth). She took me for granted because she was assured that I'll always be there with her like a slave, and pretty much treated me like a slave. In hindsight, I should have taken more time to myself to reset my mind, and it would probably have been better for her too if she didn't have someone there all the time with her. She had been living by herself for years and it was probably freaking her out to have me there/was too tempting not to engage in toddler type of behaviors to demand attention from me/break boredom. So here, I vented some. Don't judge me either
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Davenport Oct 2022
Yes. Hopefully, most of us here don't judge; I think that's one certainty here. When I read/see/hear of judging, I call it out.
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It's a bumpy road. When I would get stressed, I'd go to another room and say what I had to say and then return to my mom. I called it 'cussin in the kitchen'. If an outsider could have seen, it would have appeared that I lost my mind talking to no one in another room. It did help to let the steam go.

If there is money available, hire some help to help YOU as you help her. Definitely pay for things she can afford now. You need the breaks and she does too.

I knew my aggravation was not her fault and I did not want to say things that would show frustration, so this worked for me. Hardest job I ever had, but in the end I wouldn't have done things any differently. She was happy being in her own house and I was able to give her 7 years of my time to keep her happy. I owed my mama that much. She would never have thrived in a facility setting and from what I saw of facility care, my heart would never allowed me to put her in a facility. I was retired and able to do it, thank the Good Lord.
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Summergirl: Imho, you may not be able to do it all on your own. Seek respite through any means possible.
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my wife has recently become disabled. And has had some medical issues. I was always on her case to stop milking the situation and do some exercise. She needed to go to the doctor about a bad rash she had. While at the doctor they tested her and tells us she has dementia. That news change my whole attitude. I am more understanding and no longer upset. The problem was not with her but me and my viewpoint with respect to what she would say. We no longer argue.
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You need breaks. You will feel much better.

Your mother will likely recover further over the six months following her stroke. (That is what I was told when my dad had his severe stroke). Sometimes it isn’t gradual, but improvement seems to happen all at once. Therapy is important. Speech, Physical, Occupational. Get her whatever insurance/Medicare will allow. In-person is more effective. Once that runs out, continue on your own or through help. If she doesn’t seem to be improving keep it up —at least through the 6 month window.

After my dad’s stroke, I attended all his therapy sessions and would repeat the lessons later. Wii sports, checkers, puzzles, conversations, walking, reading aloud… all this helped. You may not be able to attend, but reinforcing what she worked on does help her return to her best abilities and best life. Getting her as much therapy as coverage allows will possibly give you a break if you don’t have to be there. .

You have hit your limitations, so if you can afford to, outsource some of this, so you can have some downtime.

”Cherry pick” the activities you like best and outsource the others. If you hate games, hire someone to come in and play cards. If you dislike the gym, hire a personal trainer or a CNA (depending on her abilities) to spot her on a walk or a piece of equipment at home. Physical activity of any level, fresh air and different environments will all help, but bring someone in because you can’t do it all.

I took care of my parents simultaneously. Sometimes their care kept me up most the night. My dad had a debilitating stroke (and a nice recovery).. I hired a CNA to help my dad in the mornings (workout, shower and breakfast) so I could get my kids to school). They played checkers while I was working sometimes.

Don’t hire someone to help with your favorite activities or you will feel like you are missing out.

Do you have a friend in a similar situation? One of you can take your mothers out to lunch together while the other has a break. I found when my parents interacted with peers their spirits lifted. If you don’t know anyone else who is similarly situated ask around. There are people around you going through this. Your mom’s doctor may be able to help you connect.

Don’t lament about being an only child. I have 5 siblings who were mostly “no shows.” Once a sibling cared for my mom for a week while I went away with my young family for a needed break. When I returned, my Mom asked me to never make that arrangement again. My sibling was so “angry” she would barely speak to me. To this day-7 years later-, I still don’t know why she is (still) mad.

The next time I needed to go away, I hired a CNA and Mom had a great time.

I replaced my siblings with friends (a total upgrade!!)
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Reach out to a local social worker and ask for referrals and help. You are doing a lot, and there may be programs to help you, providing in-home caregivers that can do some of the work and give you breaks, referrals to counseling for you, etc. If you have a trusted counselor, reach out and tell them what you said here. Please, don't try to be a superwoman! You'll need breaks and time for youself to recharge. Also keep reminding yourself that your mother can't help it. Her mind is not what it was prior to the stroke. I saw this happen even with a younger person. It's painful to see. She might get better in time, but maybe not. People tend to decline as they age. You need to have a plan if the time comes when you are not able to do this on your own. Speak to the social worker and other senior care advisors about her and your options. All the best to you both.
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Vent here. We know what you're going through.

Schedule some extra help if you can afford it, and if not, call the Area Agency on Aging and see if they can offer some suggestions.

You're not an awful daughter AT ALL. You're grieving for and with her. If you can find even a few minutes a day to meditate, I find it helpful. I just google "10 minute meditation for relaxation" or however much time I have.

Hang in there, sweetie.
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I have one brother who does nothing to help . So don’t feel like you’re alone or missing something. Try to find an at home caregiver you feel comfortable with & that you trust. She can give you a break & especially during day you can concentrate on your paying job. Losing patience is something we all do. I’m guilty of it too. My 95 year old mother has dementia & she could ask 10 times same thing. That don’t bother me as much as having to wipe poop 💩 from her behind. She also don’t walk & needs to be transferred via lift machine to wheelchair & commode. She also gets very combative. In addition she has these nonstop talking/yelling with dead people. She can go for 24 hours nonstop & if I increase her meds , there’s no improvement!!! I have to wear earplugs & play music 🎶 to try & drown out her noises. I’ll take repeating things in a minute in exchange.
Good luck & Hugs 🤗
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You are not awful! You're working so hard, and doing it alone. Which makes it harder. I'm kinda new at this myself (mom's only been here about three months) and she had been living alone... so I am the child who got to discover she is sundowning, :/ We're all scatterbrains and have always repeated ourselves in the whole family so that sort of thing was absolutely not noticed. Now though, it is a superpower. I just repeat myself, endlessly, as many times as I want to.

I have printed out a picture of the remote control(s), and leave it on her tray. Did anyone teach you / advise you about having the tray of useful things? I remember when I first saw it and it broke my heart -- this is when I was looking for a tray for next to my mom's chair here *before* I even realised she was starting to slip a little. Now it's like "Oh. Well okay so this works for a lot of folks?"

Another important thing to point out about strokes is that its possible that all of the knowhow was erased - the knowledge, and the experience. Anything she doesn't know how to do, imagine she is learning for the absolute first time. "Reminding" might not help if that area of the brain was permanently cut off / broken. She will need to relearn from scratch. Hubby had a stroke in 2020, and it is still frustrating to him. He can't understand how sometimes he STILL puts a shirt on backwards by accident, until I remind him that this isn't just re-learning to put that shirt on right just one more time, but re-building the practice to put it on right every time.

Big hugs. You're not awful. You love her, and she is your world. You're doing all that a human can do and probably more.

Is there any home occupational therapy available? They send ppl out for my husband but he was already at such a good place post his inpatient rehab that they didn't stay long -- but he's young, which apparently helps? But her insurance may cover some in home rehab, which can give you a few more hours to yourself hopefully <3
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Start with the reality that she is who she is. She has some blank areas in her brain that don't work... so it will take time to help her re-train her brain to compensate. Sometimes that retraining will not bear fruit. Let go of whatever expectations you have of her getting back to pre-stroke function. Enjoy and deal with what is her current level of functioning now - as if this will be forever.

Get some help so you can get some free time - daily - and bigger chunks of time off weekly/monthly.
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