For twenty years, my Mom told me she never wanted to live with her children. They bought into a Continuing Care Retirement Community (CCRC) also referred to as “Life Care” Communities so they would “never be a burden” to their children. For those of you that have seen the first few years of my blog … helping my parents was a very complicated affair. I won’t say it was a burden, but we could have done it way better had we not tried to directly follow my Mom’s wishes.

I’m going to first share the cost of their care using the CCRC.

Non-refundable deposit to get into the CCRC $500,000 (1999)
This was in 1999 when that was how it worked.

Annual “rent” for their Independent Living apartment $ 38,400
This was the average cost from 2000 to 2012 for a total of $499,200.

At the end of 2012, the community required they move from Independent Living into the Assisted Living community. These were their “discounted” rates for their community since they paid the half of million to move in.

Annual cost for Assisted Living (for two) $117,600 (2013)
Dad passed away in 2013.

Annual cost for Assisted Living (for one) $ 94,800 (2014)
Annual cost for the required personal care
assistant for my Mom $ 98,208
Assisted Living was not the right place for my Mom with dementia. The residents didn’t want to eat with my Mom would couldn’t learn their names and my Mom stopped going to the dining room for meals. As you may know, there is no kitchen in Assisted Living and my Mom was unable to prepare her own meals. She became very agitated and so they required we hire a personal care assistant for 12 hours. The memory care community in the CCRC was only for end-stage individuals with dementia so neither the Assisted Living or the Memory Care were the right fit. We made the choice to move her to a Memory Care community outside of their “Life Care” community. So much for the HALF A MILLION they paid to move into this community.

Annual cost of Memory Care community $ 81,600 (2015)
Annual cost for the necessary personal care
assistant for my Mom $111,600
My Mom was unsteady on her feet after a medication put her in a state of delirium in 2015. She kept falling and ending up in the Emergency Room (ER). We hired someone who could help her use her walker and assist her and keep her out of the ER.

So at the end of this journey, my parents spent over $1.5 million. They saved and invested well so they had the money to pay for their care. But knowing what I know now, we could have used that money better to manage the last fifteen years of their lives.

As I sit here today with many of my clients in communities cut off from family and at a higher risk of getting covid, I realize I need to start having a discussion with my children. When we or one of us needs help, I hope my children will be able to make the best decision for us at the time they need to make it. No preset conditions because our world and how we will care for older adults is also changing.

For $1.5 million, I would have preferred to have a home where my parents could have lived with us, but still had the freedom to be independent. When they needed care, we could have arranged to bring it in. Thankfully, our community has gobs of ways to stay engaged and active and we could have used that money to pay for the personal care assistants to help them lead their lives when they needed it.

From 2012 through 2015, I was spending more than 20 hours a week helping them in one form or another. The last three years of my Mom’s life cost over $500,000. Had she been living with us, I could have spent more time being a daughter instead of a family caregiver, bill payer, medical support and care manager. I now know how to bring in the support to help fills these roles and that would have been much less expensive and I believe more joyful for me and my Mom.

This is the first time I sat down to add it all up. What I do know is that the current care solutions, whether in their own home or in a community, are not ideal for most of my clients right now. They are all very isolated and we don’t see this ending any time soon.

The reality is that things change and what is important today, may not be important tomorrow. So leave some space for adaptability.

Might it be time for us to move back to multigenerational homes and return to a personal model of caring for our loved ones? Advocated.

To learn more about my journey and the tool I created to help families manage and coordinate the personal information to be a great advocate, get a copy of MemoryBanc: Your Workbook for Organizing Life