The last year of life is the most expensive

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 I wish knew then what I learned over the course of her care.

The Costs of the CCRC Path:

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 someone would couldn’t learn their names. She no longer wanted to eat in the community dining hall. As you may know, there is no kitchen in Assisted Living and my Mom was unable to prepare her own meals.

After my Dad passed away, my mom became agitated and they required we hire a personal care assistant for 12 hours each day. The memory care community in the CCRC was only for end-stage care, 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.

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.

Me with my Mom on our way to the Grocery Store.

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.

After watching many clients in communities cut off from family during COVID, several had a marked decline. They didn’t have many people to talk with because they were locked in their rooms and their physical stamina decreased from little movement.

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 many programs to stay engaged and active. We could have used that money to maybe deliver a higher quality of life to their final years. Would it have been better? I will never know.

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. Imagined.

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

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

3 thoughts on “The last year of life is the most expensive

  1. The cost of facilities is exorbitant, but as a daughter who cared for her mother in her home for ten years and a wife who has been caring for a husband with Early Alzheimers for six years (with an overlap of a year), I would warn not to underestimate the strain of home care on the caregiver. It is not twenty hours a week but over a hundred hours a week. It was the choice I made for my mother and am making for the time being for my husband, but it is not the right choice for everyone and may not stay the right choice for me at some point.

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