Am I Done Grieving?

Kay w Chaplain
Thanks Max for the photo!

I still tear up when I think about my Dad. He died nearly two and a half years ago. As many of us who have a loved with dementia, we also recognize how much me miss them while they are still here. We buried mom a few weeks ago (Arlington National Cemetery takes around 3 months from death to burial) in what she wanted to be a life celebration. I think we did a pretty good job of following her wishes.

The weeks after her death turned me into a swirling dervish. I spent more than a week polishing nearly every piece of silver she had given me or that I purchased with her when I tagged along with her to an estate auction. I polished the corner display cases my parents gifted when they down-sized. I reorganized my work room.

About a month after my mom’s death, I had a dream of the mom that I spent the most time with. She was funny, tart, driven, and opinionated. I had a great adult relationship with her. When I woke up, I quickly recognized that I hadn’t had a dream about mom before the dementia for years. It was wonderful and sour simultaneously.

I’m moving through the stages. I’m starting to recognize how different this journey could have been for all of us had we known the ending. I spent nearly 5 years entrenched as a sandwich generation caregiver. It was so overwhelmed that I needed to roll out of my corporate job to stay sane. I found a healthy outlet in building MemoryBanc, but I also sacrificed 5 years of an executive income. According to AARP Public Policy Institute, the average female caregiver loses $324,044 in wages and benefits. My inheritance simply turned into a replacement for the compensation I would have made. I recognize how lucky I am that I even had that benefit–most caregivers don’t.

Had we known the timing, I probably would have hired more help for mom in her final year. I wish I could have just visited her as a daughter. We believed Mom’s money needed to last possibly ten more years. Most visits included follow-ups with the nursing staff on a nagging issue or concern, or a request to the community for a door-lock, painting classes, or just to get a sense of how they felt she was doing. We still have many voids in our system to care for loved ones. I hope to find a way to bring those services, and information about the options, to the families that need them. Focused. 

The high cost of dementia care

bag of moneyI have been acutely aware of the cost of caring for my Mom who has multi-infarct dementia. The average monthly cost just for her Assisted Living community is $7,500. When she was exhibiting episodes of unbecoming behavior, we were required to hire additional assistance which cost $5,000 a month. That translates to $90,000 just for the community. Some months totaled $12,500. We are in the metro-DC area.

Thankfully, my parents planned well and my Mom has money to cover these expenses — for now. However, I don’t think they expected that the funds would have to be used to pay these kinds of fees. They bought into a Continuing Care Retirement Community (CCRC) believing they were buying into discounted care fees.

When we were told a few months ago that we might need to find a new home for my Mom by her community, we started to look around. We realize there are a wide variety of community options as well as range of fees. Given what I’ve found, I am not clear on what the very large down-payment did for their finances. I do know that the community support saved up from having to pursue guardianship of my parents when they didn’t recognize the impact of their changing cognitive abilities.

There is no perfect answer, but we can validate the reality of the high cost of dementia care. We are fortunate my parents planned — I can only imagine how much more difficult it would be if my Mom didn’t have the financial resources to find the right care. Wondered. 

Related articles:

The High Costs of Caring for Someone with Dementia by CBS News