My dad had vascular dementia which began at age 90. It was a gentle decline until he had a significant stroke at 94. He needed skilled nursing for 8 months before dying at home. That was probably more important for my mom than for him. I FIRE'd 3 years before he died when my mom increasingly needed help. I hated my job and decided I had enough of a cushion to FIRE. I live 10 minutes away from my parents' house.
Unfortunately, my mom's dementia began just 5 months after my dad's death. The first 18 months were hellish for me because mom would have "sundowning". Every single evening for 18 months, mom would call me as many as 5 times because she couldn't find my dad. Sometimes her next-door neighbor would call or text me because she would see my mom outside in the dark looking for my dad. That period ended when I found my mom on the floor one morning. She had fallen and broken her pelvis and a wrist. (She told me she had only been on the floor for an hour.) When she came home from successful rehab and was walking again, she accepted that she needed help to remain at home.
Mom had 24/7 caregivers at home for the next 6 1/2 years until her death at 101 in her home this year. She got wonderful care from a group of 4 women whom my dad's main nurse had worked with and recommended. (My dad's nurses came from an agency, but my mom's caregivers did not.) The 4 women made their own schedules with one another which permitted them to take time off whenever they needed to, and that also simplified my life. I tried to treat them well. My mom was not a difficult patient and her kind personality did not change as her dementia worsened.
All of this cost a fortune. However my parents had accumulated significant savings in retirement thanks to my dad's generous COLA'd pension with partial survivor benefits, plus Social Security. They received dad's full pension for nearly 40 years, and mom got a survivor pension for 8 1/2 more years. My parents' savings were definitely dropping, however. I just wanted to make sure that they didn't go below a certain level so that my mom would still be accepted by a decent nursing home if that became necessary. It worked out and I was able to avoid having to get a reverse mortgage on their home.
My only sibling and his wife also live just 10 minutes away, but they are both self-absorbed takers who refused to help in any way. We do not speak anymore. In fact, when mom died they were out of the country (or so they claim) and decided not to come back for the funeral.
When my dad's dementia worsened, my mom amended her revocable trust to make me the successor trustee instead of dad. So at least I now control that part of the process. However, I am now having to empty the house my parents lived in for 66 years. I intend to pay myself for this work out of the estate for every penny that state law permits. I don't care if I have to pay income tax on it.
Fortunately my parents weren't hoarders, but there is still a lot of stuff you accumulate in 66 years. There was little that either my brother or I wanted, so there have been no fights about that. I took my mom's recipes books (10 loose-leaf binders full of recipes she had cut out or written down). She was a fantastic cook. However, as her dementia worsened, she had no recollection of ever knowing how to cook.
Most of the original houses in my parents' neighborhood are teardowns when they're sold, so I only did enough work in recent years to keep the house liveable. I contacted all of the builders who buy houses in the area and I signed a contract on the house last week. No real estate agent or commission.
I still have many weeks to finish cleaning out the house, and the contract doesn't require me to completely empty it out. I told the caregivers they could take whatever they wanted from the house, and 2 of them jointly hired a U-Haul and took about 25% of the furniture and many of the kitchen items.
I've been handling my parents' finances for over 13 years. I've done their tax returns and I file required tax documents for the caregivers. I've been buying all of my mom's food and home necessities for 8 years, and have prepared her dinners and put them in her freezer since she started having caregivers. I either repaired or got someone to repair things in the house. In the early years of dementia when she still walked well, I would take her out to dinner once a month. I would take her to see doctors and to get her hair cut. I'd also occasionally take her to see her few remaining friends. They eventually died before she did.
She broke her hip at age 99 and didn't leave the house after that. She required a wheelchair and hospital bed from that point on. About 6 weeks after breaking her hip, her condition worsened and I called home hospice. When a nurse came to evaluate my mom to determine if she was eligible for home hospice care, the nurse said to me after seeing the setup in mom's bedroom, "You've been running a nursing home for the past 5 years." My mom improved and was discharged from home hospice care twice over 2 1/2 years. She started on home hospice care a 3rd time the day before she died.
I would have liked to have done a lot more traveling in the past 11 years. I wasn't totally stuck at home because the caregivers were excellent and were trustworthy. (I had fired one early on who wasn't trustworthy, and another who was lazy and caused problems for the others.) Covid diminished some frustration I felt about travel because I wouldn't have done much traveling in the first 2 years of Covid anyway. BTW, it was a minor miracle than none of the caregivers nor myself ever exposed my mom to Covid.
I had wonderful parents. It has been a lot of work, especially over the last 8 years, but I don't regret it. But after the house is sold next month, I will have the freedom to do whatever I want.