I'm glad to find this community!
I've had a lot of turmoil in my life over the past year related to caregiving. Back in 1998, my mother and both brothers were diagnosed with a rare, life-threatening type of anemia called sideroblastic anemia. My brother Paul was pretty acutely affected, and my brother Dave and my Mom were more stable. Both my brothers were blood transfusion dependent. I did some long-distance caregiving, especially for Paul. Because the disease is rare, it took a lot of work for us to figure out what was going on and the best treatments for it.
In the past few years, my Mom's health has gone down hill, not from the anemia, but after heart surgery (she is 76 years old). She has a bunch of chronic illnesses: she has heart problems, is diabetic, has occluded carotid arteries and hardening of the arteries, and assorted colon problems, as well as the rare anemia. In the past few years, managing her house has clearly gotten to be too much for her, and she told me that she wanted to move into a retirement community.
Between March and June of last year she was hospitalized 4 times-- once with major surgery on her carotid. Each time she got sick, she became incoherent. We had her do a stint in a nursing home short-term rehab to build her up. When she got out of the nursing home, she decided to take an apartment in a retirement community. She is, of course, terribly anxious that her house has not sold and worried about the economy, but there isn't much any of us can do about that.
In July, my brother Paul because acutely ill with complications of the sideroblastic anemia and died. I was lucky to have my sister-in-law include me in the medical decision-making and I was there when he died. In fact, I spent a few months out of work last year taking care of my family-- none of whom live in state.
My Mom has pretty much been a mess since then-- she is reasonably active when I'm in town, but otherwise retreats into bed with migraines, stomach ailments, or both. It's clear to me (and also to a social worker who has worked with her) that she has major depression, which seems to me a reasonable way to react to the events of the past year. However, she doesn't really do much, socialize, isn't physically active, doesn't take care of herself or her apartment well. I am looking to get her into specialty care (particularly with a geriatrician).
It has become clear to me that Mom will need caregiving from me as her primary caregiver to a greater or lesser extent probably until the end of her life. This is a big change for us. I am trying to plan for how to care for her, provide support for my brother Dave who is grappling with his own illness and also get him appropriately involved in Mom's care, get help from the family that is local to where Mom lives (an aunt and cousins), and also maintain my own career, marriage, and life at the same time.
I don't really have anything specific to ask you at the moment, but if anyone has resources they've found useful, wise advice, or cautionary tales, I'd love to hear them. As you can imagine, my family is reeling with the change and losses of the past year and these are tough times.