How long have you been a caregiver?

GothicGremlin

I keep coming back to this thread... it's something that I periodically reflect on, which I think is a good thing.

My experience is a little different than most here, mostly because there's a Part A and a Part B. My first round of caregiving started with my dad after my mom passed away in 2012. I didn't realize how much she had been propping him up, but he needed a lot of help. He didn't have cognitive issues, but he was really frail. My brother helped somewhat with care, but had/has no critical thinking skills to speak of, so he was bad with helping to make medical care decisions. My dad's doctor flat-out refused to speak at all with my brother.

My dad was a 5 hour round trip from me, and I'd end up going over there two to three times a week. We did this for close to 3 years. On the plus side, I got to spend time with my dad. He was sharp til the end, and it was fun bantering with him. The commute, the errands, taking charge of all things medical, trying to cook for him with my extreme lack of cooking skills took a toll though. When my dad passed away in 2015, I was crisped.

Unknown to me, and overlapping with my dad, my sister was developing EO AD. I'd never seen Alzheimer's before, so I didn't recognize it. Working backwards, we figure she was showing signs as far back as 2010-2011. Her cognitive problems became very apparent in 2017.

Peggy was diagnosed in Aug. 2018. I was freaking out. I was still living in San Francisco, and she had moved back to my parent's house, now our house, and I began my 5 hour round trips again. Peggy started requiring more and more care. The day that Peggy forgot how to open the refrigerator door my brother was outta there. My s.o. and I moved to be closer to her. I hired in-home help and got a therapist. In October, 2021, I placed Peggy in memory care, where she is now. She's probably mid-to later stage 6 at this point. Physically she's pretty healthy, and she's not that old (63), so I don't know how to estimate her life expectancy.

Even though Peggy's in memory care, there's still a lot of caregiving to do, but it's no longer overwhelming. Mostly it takes the form of spending time with her, staying on top of her medical care, managing the bureaucracy of her life (which is in maintenance mode now), and then making sure she has clothing, and personal care stuff.

This was not the career trajectory I thought I'd have. Although luckily, I've always been able to work from home.

PookieBlue

Thank you JDancer. It is a lonely life that we lead. We just take it a day at a time, trying to feel some sense of normalcy. My DH just got up to go at 4am, but couldn’t find the bathroom 10 feet away. I couldn’t get back to sleep so after an hour I got up, so did the dogs. Here goes another day. Beam me up Scotty!!!!

PookieBlue

Thanks for your response Ed. My DH has always been a drinker, only in the evening. He will forget he is drinking from one wine bottle and open another one. I found an unopened bottle of wine next to the toilet recently as he is not aware of what he does and of course has always been in denial. I think he is drinking about one to two bottles every evening, all within two to three hours. This is while I am cooking, taking care of dogs, and cleaning up. Many times he can barely walk to the bedroom as he is so unsteady. I have been giving him vitamin supplements for years. He never has told his primary care doctor the truth of how much he drinks. 

I haven’t taken him for a PCP appointment since before pandemic, but keep up with lab work and he sees eye specialist every five to six weeks for eye injection. His only memory test at PCP appt showed he was at tail end of mild cognitive impairment. He is probably at beginning of severe impairment now. I never thought it was necessary to get a diagnosis, since treatment success with any type of dementia is dismal. Besides, I’m pretty certain his alcoholism was the main causative factor. His 82 year old sister is in the same boat. I don’t drink and his drinking issue has always caused contention, even though I’m not being confrontational- just concerned for his health and safety. 

We did see our attorney about four years ago and took care of  POA and advanced directive legalities. Washington State is a community property state so risk of probate should be negligible. I have taken care of all the finances for 35 years so I’m comfortable with that. We have a number of vehicles that I want to sell. His passion in life (besides wine) is his sports cars. He hasn’t driven them for probably five years. He gets angry and obsessed and we are unable to have a conversation on this topic. However, I know what needs to be done and I will get it done sooner or later. We did purchase burial plots in Iowa eight or so years ago, so I do have some preparation for the future. It’s just so very sad that this is my life. Totally not something I ever considered happening. But then it did!