@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.

@grimalkina @Nicovel0 Wrapped up in this is the older generation’s natural deference to people in authority. I saw it with my own late mum, and her sisters. They were terrified of questioning anything a doctor would say, or not say.

@grimalkina
This surprises me. I am reasonably certain that at least 45% of the people I see on my Mastodon feed our female, whether natural born or trans.

@grimalkina it's far from being an age thing as well, UK NHS doctor was unwilling to do anything about the constant fatigue my < 30 yo girlfriend was reporting until the fourth visit in which I accompanied her. Devils advocate will say it's her persistence, but actually, the doctor point blank asked me if **I** have noticed her fatigue before finally giving her a referral...

@grimalkina @MostlyTato 99% male audience? That’s not been my experience

@grimalkina

i've been dealing with my mom's medical and financial stuff for a few years now. it's insane. the US medical industry and financial institutions really do seem to want the elderly to just die but give them all their money first.

my sister and i tag team being on the phone when she's at the doctor's and we both review all visit reports and talk to the doctors and insurance as necessary.

i truly pity elderly folks that don't have someone to assist them with all this, someone fully in their corner.

@grimalkina
Have a list of your elder's questions. And carry a clipboard to write all the answers down!

@grimalkina I was 27 when this problem abruptly went away... I wish I'd been better positioned to help her more but as it is, I was already her primary caretaker and doing my best.

@grimalkina and don’t put that caregiving burden only on the women in the family. Often only one woman. Caregiving often kills the caregiver first.

@grimalkina My mother is 79 years old and a retired RN. She is the type of person that refuses to share any information with her children, especially medical and financial information, and she gets very defensive if you ask.

@grimalkina

💯

@grimalkina

Thanks for offering thoughtful observations and kind advice on this important topic.

This is relevant to aging spouses as well as mothers. It's all too easy, and common, to assume that, if we aren't hearing requests for help, none is needed.

Our moms are suffering because no one cares and they aren't telling anyone. They're getting diagnoses 15 years late, they're being bullied about medications, they're silent about what they're going through.

The difference between the younger women and the older women in the patient groups I'm in is horrific. I have listened to many, many people's moms describe years of suffering that could've been prevented. I am not trying to lay on any guilt. I'm just saying a little bit could go a long way.