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

How much money is needed to care for a loved one with dementia?

DMMHouseI wish I could tell you there was an easy answer to this question. But there isn’t. Just like every dementia is different, every support network is different as is every metropolitan area in terms of costs and options.

The Alzheimer’s Association just posted a campaign stating it is the most expensive disease in the United States. They do state that 1 hour of Alzheimer’s costs taxpayers $21 million, but most of the costs are in terms of Medicare and Medicaid expenses. How might your family look at the cost and impact to your family?

Some things to consider include:

  • How much time are you spending each week providing unpaid care? From rides to the doctor to meal preparation and financial management?
  • Is the time you are spending helping a loved one impacting your job in terms of lost wages? Diminished opportunity for promotions?
  • What will be needed to spend in terms of personal care assistance? Is it all out of pocket or is there long-term care insurance that can cover some of the expense?
  • How much does a memory care or assisted living community cost?

The numbers add up quickly. For an example, the year after my dad died, we spent around $40,000 (of her money) in personal care assistance for my mom. She was living in a life-care community, wasn’t progressed enough to live in the Memory Care neighborhood, but needed more assistance navigating her day. Her community costs were $96,000. So in 2014, we spent around $136,000 on her community and care costs. Had she just moved in with us, having a personal care assistant around the clock would have been around $120,000. Had that been an option, we could have probably decreased that costs when we knew we would be at home to help with her care.

The last year of Mom’s life, after we moved her into a community designed for an active woman with dementia, the cost was close to $200,000. While her community cost was a little less expensive then the life care community they chose a decade earlier, her personal care costs were $96,000. After she fell and wasn’t steady on her feet, we needed to pay for a personal care assistant to be with her 12 hours a day so she wouldn’t try to get up and walk on her own.

Frightening numbers! Thankfully, my parents had saved and had the money to cover their expenses.

One thing to consider is that allowing an individual to maintain their independence and purpose as long as they can is something they will treasure. It can also minimize expenses, but shouldn’t be at the risk of other factors. If they are living alone, find a good solution to detect falls since that is the greatest risk for most older adults.

Dementia stinks. It robs us emotionally, and financially. As a Daily Money Manager, I help families develop plans to assess the costs and consider the options. To learn more about how I help families, visit here. I’m always happy to help families navigate these issues. Offered.