@grimalkina @mttaggart first, I disagree that 99% of the folks on mastodon are male. And many of the comments mirror my experience as a caregiver. Please allow me to share a little of my experience. It was 8 years with Pops, 3 part time while working, and the next 5 years full-time, just to keep my FIL in our home, where he eventually died. And several years prior discovering and dealing with the early dementia. I learned a lot in that time about caregiving, medical systems, and myself. I always went with him to all medical appointments. And I must’ve aged 20 years in that time, even with help from my spouse and his elderly wife. So I can most certainly relate. We regularly experienced Ageism (just let him go to a facility to die), to the doctors and social workers who tried to take him away from us on multiple occasions and then force us to pay $100k+ for dementia care, to being told conflicting treatments and having to correct those issues, which was very time consuming. We were interviewed for hours by multiple hospital social workers who kept Pops for days while we proved our capacity to provide the level of care that they required. I learned that most of the doctors had very little experience with dementia patients, and tried to communicate with Pops as a fully cognizant person. It was “a very long and winding road” to say the least. Thankfully, we received excellent support from the Veterans Administration and the assigned representative was an angel. (Pops was retired military). And early on I was able to take advantage of an adult day care that provided me with several hours during the daytime to care for myself. Now, years later, it’s time for Mom’s care. Her doctors all have similar recommendations, she’s old and gonna die anyway, so why make things difficult for yourself. And the current medical system has evolved to a more “team and training based” system. We don’t know who the doctor, nurses assistant, or intern will be treating Mom at the next appointment. One helpful thing I setup after caring for Pops was an extensive automation system using Home Assistant. I’ve installed sensors everywhere to monitor the doors and windows, running water and leaks, gas sensors, presence sensors, and a host of automations to help monitor and alert to mom’s activities in and around our home. It is surprising the poor decisions that a person with dementia can make that can be very damaging and outright dangerous to themselves and other occupants in a home. So, I didn’t write all of this for pity, but to let anyone who decides to take on responsibility of caregiving that it is a significant commitment: financially, physically, and emotionally. Seek help, there’s so much to learn, and understand your limits. There’s the saying that it takes a village, so go find the village or create one to be your support group, because you’re going to need one. And get very involved in their medical care, as was recommended by the OP. You will need to establish a health care proxy, so research advanced care planning now, before it’s too late. It will become extremely difficult to get that healthcare proxy established if your loved one becomes mentally impaired. Heck, do this for yourself and spouse as well. It’s time for me to seek out caregiver groups on mastodon. And remember to take care of yourself.
