Caregiver for stroke patient: Anyone experiencing burnout?

@lylii I’m a driver with Meals on Wheels and strongly suggest that you give them a call. They go on a sliding scale when figuring out costs. They are a great group of people!
Sometimes neighbors even do a meal chain. Neighbors or friends sign up to do a specific meal. Ask a friend to help set this up for you. You might just need it for 1-2 months

@gavfairlands
I'm so sorry for what happened to your wife. I understand how difficult it is to also take care of your daughter, who is atypical. I have moyamoya disease, I had many transient ischemic attacks, migraines and all the other symptoms, from the age of 3 until the revascularization at age 16, I only discovered the disease at 14. I improved a lot, but I had a stroke after surgery and my cognition worsened a lot, memory, attention and executive dysfunction along with APD. Today I am 34 years old. My daughter also has moyamoya disease. She had more than 10 strokes, starting at age 2 and the last one at age 4. Today, in September, she will be 11 years old. She was left with many sequelae, she is aphasic, dysphagic, does not walk, uses diapers and her cognition is that of a much younger child. Sorry to report this, but I thought it was important to tell you that I know it really isn't simple, much less easy. I also have many difficulties, from financial ones, being a single mother, to emotional/mental ones. If I may advise you, even though I also struggle to keep going, especially emotionally, try to ignore unnecessary things your family says, like comments about the plants. Preserve your energy, your dignity, and your integrity, because they are not helping at all, quite the opposite. If you can, for some reason, have the support of someone you trust so that you can have a day a week, or even a few hours, to take care of yourself, breathe, relax, listen some música, have a drink/coffee/tea/juice in a comfortable and calm environment, feel present and alive, that would be very good. It's important to say that as caregivers, we cannot neglect ourselves, however difficult it may be. We are also human and need comfort and well-being. Psychological support is also very important. Know that every little and big thing you provide for your beloved girls is a world of love. Feel proud of doing so much for them, and congratulations on that. Financial, logistical, mobility, and caregiving difficulties don't change simply by taking care of yourself, but they do make you react and cope in better ways, with more awareness, presence, and calmness.
I hope you can count on more people on this self-care journey.
I’m saying all this, but I’m also hope for myself, haha.
I believe that this way, you’ll have more space—both mentally and emotionally—to give them and yourself what you’d like to.
I’m a Japanese-Brazilian woman living in Brazil, and I’ve been able to rely on the SUS, which is a universal public health system—the government covers most treatments and surgeries, and that helps me a lot. It would be so fair if there were a similar system out there; I hope that one day it will be possible.

Hello everyone I have been my husband's caretaker of course just in general. I suppose really his first issues started back in 2007, he was diagnosed with Ulcerative Colitis, which eventually led to j-pouch surgery in 2009. Things seemed to be alright there for awhile, aside from double hernia surgery. His symptoms started getting worse again, then much worse. So in December 2024 he spent that month in the hospital with Sepsis. They did a couple emergency surgeries, the main one being an Ileostomy which he will always have now. Then February 2025, us hoping all well, everything is on the mend, our first Grandson was born mid Feb. The same night I was with our daughter during labor, he was having TURP Surgery. A week later we get "The" phone call. His biopsy showed he has Stage 4 Colorectal Cancer. Also he has a suprapubic catheter that's had to be placed since March '25. Okay so he has continued all of the recommended chemotherapy treatments then the holidays roll around. His mother has a stroke at an intersection, she'd apparently had 2 more in the weeks before and didn't get medical help because she is a very stubborn person. Anyway she came to live with us mid December and is still here. This is where I Need support!! She has left side neglect, memory problems etc. Home Health comes each week now, PT, OT & ST. She is a very grumpy negative person before the stroke. I am truly truly at my wits end. I dread every new day basically. She poops herself Alot! She should be doing all the kegel exercises to help, but this woman does zero of the daily tasks she's supposed to be doing to get better. I cry so much sometimes, I just stand in my closet and ball my eyes out. Then I come back out & continue with my constant chores. Also latest CT scan for my husband shows a new tumor is growing on the cuff of the j-pouch.

@warriorwife1981
GOD BLESS YOU! What a lot to deal with! I am so sorry you are enduring so much. I can’t imagine trying to sustain all this. Have you considered facility care for your mother in law? Or, if you want to continue with her in your home, can she afford in home caregiving help during the day, to elevate you from some of the daily duties? I pray you will receive helpful support soon, and for your husband’s health and peace for you all.

I was the caregiver for my mom when she developed dementia. She lived with us for a couple of years and her needs increased significantly. She eventually went through two different, senior care, facilities, the second one having a specific dementia wing. Her cause of death was dementia, which is pretty unusual. They told me. Usually dementia patients will have secondary conditions like heart, disease, lung, disease, cancers, and the dementia just exacerbates that situation. My mom was healthy as could be her only health issue was dementia and she lasted for a long time with it. Hindsight being 2020 but I would say to any full-time caregiver is that agent every month you should have three weeks on and one week off. Either another family member steps in or your loved one is placed in a care facility that will accept her for a one month stay. I found that most care facilities often have vacancies that they are willing to use for short term stays. Better that you find one in the earlier stages as they will be more likely to know her and care for her well if her condition progresses. Three weeks on, one week off, totally off.

@tullynut Thank you so much! That is an excellent suggestion. I am going to start searching around and looking into this for sure!!

Oh I, too, am at the burnout point; it’s going on 6 months post stroke for my husband; I have been ‘doing it all’ on a 100 acre farm. I do have some farm help, but everything for,this massive property must be managed. He has been home for almost 2 months and we do have an aide that comes in a few hours and drives him to PT 3x week. This is,not sustainable and I’m getting the farm ready to be sold which he does NOT want to,do. I have autoimmune issues and take biologic injections. I’d hate to,admit it—but when he was in the hospital and rehab—I could manage better and breathe. Best wishes to,you!
Jane in very hot/humid NC