@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.