Category: Facts and Figures on Dementia

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

The Link between Dementia and Mismanaged Finances

Eureka! What I recognized anecdotally for years is now published research that concluded financial symptoms of cognitive issues are surfacing up to six years before a formal clinical diagnosis.

SIX YEARS.

You are noticing changes in your own thinking, or you are seeing changes in a loved one that is concerning, but the primary care doctor just reassures you that you are “fine.” I witnessed this all play out with my parents for years. By the time we finally had a formal diagnosis, both of my parents were diagnosed with MODERATE forms of dementia. Dad they believed to be Alzheimer’s and my mother had primarily Vascular Dementia.

If you are having more difficulty with bill pay and managing the checkbook balance, it is time to share that with a loved one and your primary care physician.

Many financial mistakes were made for many years preceding this, including the decision to stop paying for long-term care insurance. Most of my Dad’s retirement accounts were unattended and forgotten.

For more insight into this visit this Washington Post Story.

After living the journey with my parents, and now supporting individuals and families as a daily money manager, I have seen and cleaned up many of these issues. It is rewarding, but sometimes takes my breath away, when I calculate how much money was wasted or lost over the years that could have been used to help pay for their care.

The research primary looked at payment delinquency. If someone is missing bill payments, when they were prompt payers before, this change could be a sign of a cognitive issue.

If you are experiencing this, or are having trouble making your checkbook balance when that has been a lifelong habit, it’s time to share this with a loved one as well as your primary care doctor.

The earlier you identify an issue, the more options and control you can have over it’s future course. Believed.

Brush away Alzheimer’s?

I can hardly wait until they have some proven options to prevent and even cure Alzheimer’s … and maybe even all of the other forms of dementia. It’s so devastating to the individuals and their loved ones.

It was hard to witness the changes in my parent’s and it was sad to slowly lose those beloved traits and quirks their dementia’s stole away.

I do see some older adults who start to skip the health maintenance tasks they regularly followed as they age. Some make sense … like the colonoscopy. Is there an age where you might stop getting this screening?

I do know my parent’s no longer wanted to visit the dentist. I fear the day when my current dentist retires. Seeing him and everyone in his office is like visiting dear family friends. Will I some day feel the same way?

Could dental hygiene be one of the best prevention’s? If you haven’t seen the news, here is a link to a recent report on the study. Hoped.

44 Million Unpaid American Caregivers

taskoverwhelmingYup, those of us doing it are often surprised to find out our friends and colleagues are in the same situation. Most of us step in and do it quietly. We may share the critical events as they occur, but often our feeling that this is a family duty usually means we don’t share the many ways that caregiving impacts us.

I was recently interviewed about the experience and am honored to be included in the stories that appeared in the NY Post, and Moneyish.

For those of us that have lived it, we know it’s overwhelming. My wish is that more employers will start to recognize and consider programs to help those stepping in to help their loved ones. Hoped.

Cognitive Life Expectancy and Women

dealwithitIn 2010, a 65-year-old woman could expect to live 14.1 years with good cognition, 3.9 years with mild cognitive impairment and 2.3 years with dementia — according to Eileen Crimmins, AARP chair of gerontology at the University of Southern California’s Leonard David School of Gerontology. I love data, and a recent article has many key facts that should encourage us to better plan for the rest of our lives.

The generation above us is failing. I saw it with my parents who planned well conventionally, but had no idea their bodies would outlast their brains. The stats sometimes lead us to believe it is not happening at the level of frequency I see it happening to my friends families.

We all should prepare for the worst, be it our bodies outliving our brains, or our brains outliving our bodies. Most likely, we are all going to need assistance before we take a celestial departure from this earth.

The stats on what a 65 year old woman can expect, were one of many key facts in an article by Judith Graham Research find seniors seem to enjoy longer brain health than in the past.

Other notable key facts:

  • Of Americans 65 and older, about 20 to 25 percent have mild cognitive impairment while about 10 percent have dementia, according to Kenneth Langa, an expert in the demography of aging and a professor of medicine at the University of Michigan
  • Notably, college graduates can expect to spend more than 80 percent of their lifetime after age 65 with good cognition, according to a new study from researchers at the University of Southern California and the University of Texas at Austin . For people who didn’t complete high school, that drops to less than 50 percent.
  • A new study from researchers at the Rand Corp. and the National Bureau of Economic Research finds that 10.5 percent of U.S. adults age 65 and older had dementia in 2012, compared with 12 percent in 2000.
    • The percent of people affected is declining which is great news, but the bulge in those over 65 means that more people in total will have dementia.

A few facts can go a long way. I hope these facts will help you and those you love plan well for the rest of your lives. Shared. 

DealingwithDementia Named a Top Alzheimer’s Blog for 2018

I’m honored to be named a Best Alzheimer Blog for the 3rd year in a row by Healthline.

For those of you that have been reading for a while, you know I kinda have a beef with the use of Alzheimer’s. It is confusing to the millions of families who have loved ones with one of the other forms of dementia … of which Alzheimer’s is one type. I found this diagram a few years ago because I was totally confused when I was told Dad had Alzheimer’s, but Mom had Vascular Dementia.

What is Dementia
Understanding Dementia

I plan to continue writing and hoping I can help make this journey for others a little easier. Encouraged.

Caregiving Pulls Prime Age Women from the Workforce

BLSOn average, nearly one in four women aged 45 to 64 are unpaid caregivers according to the 2015-16 American Time Use Survey released by the Bureau of Labor Statistics. Nearly one in seven women 35 to 44 are serving in this role. Apparently, since early 2000 the number of prime age women began to decline after rising for half a century. This shift coincides with a rise in the elderly population.

Thanks to my sister-in-law who shared the article in The New York Times. The topic has been debated for years and the prime motivator was believed to be caring for children, but now it’s becoming clear that many women are leaving to care for an elderly relative.

I recently wrote about The Impact of Caregiving on Employment — AARP projected that 49 percent of the workforce will be providing care in the coming years — and I am hoping that employers will start to consider how to help their workforce navigate the coming reality.

My caregiving duties lead me to leave the workforce temporarily. I had no idea how to manage work, raise kids, and help my parents. I wish I had access to information on how to be a good advocate for a loved one. Now that I’m on the other side of caring to two parents, I provide educational programs to caregivers in hopes of helping other families navigate these difficult waters. We shouldn’t all have to learn “on the job”.

Now that I work in the world of caregiving, the idea that there really is no way to easily, affordably get care is an issue I see everyday. I don’t know how we can solve that, but I am glad to see that the facts are helping bring light to this growing issue. Shared. 

 

Is Driving a Battle Worth Having? YES!

The choices you are faced with when you are stepping in to help are many and varied. One adult child was telling me how she just got her dad to move into an independent living community and dad was still driving. She shared that he was diagnosed with Alzheimer’s so they wanted to get him somewhere and he seemed to be doing pretty well. I understand the hope to at least get them into a place that is more attuned to help, and that offers other levels of care when needed.

She also mentioned that she worried about him continuing to drive. However, most of us might just accept the move as a win and move on. I know, I was in that situation. For this daughter, just getting him into the community was a victory. The next issue was going to be the driving.

You would hope that the doctor that diagnosed “Alzheimer’s” would help, but in many cases, they don’t discuss how it might impact things like driving and managing the finances.

The daughter was happy that he agreed to move out of his home and into the Life Care Community. When should she bring up the issue of driving?

According to a the National Highway Traffic Safety Administration, the youngest and oldest drivers have much higher rates of highway crashes and deaths than any other age group, according to 2008 government mileage data, the latest available. Drivers ages 16 and 17 are involved in more crashes, and fatality rates rise steeply for those older than 65, with drivers older than 80 being the most vulnerable.

Consumer Reports Dangerous Drivers 10-12

I am not sure if I’m more worried about the issue of causing a fatality, or the risk of losing all of your life savings should an older adult be sued or charged with a crime. In our litigious society, I don’t think it will be long before someone will prove that an individual diagnosed with “Alzheimer’s” or even “cognitive impairment” was reckless by making the choice to drive after a medical diagnosis.

Do you wait for the accident to happen?
As I have reiterated on this blog, when their is cognitive impairment, you often find that you have to wait for a failure. It actually has a medical term. Anosognosia is when someone is unaware of their own mental health condition or that they can’t perceive their condition accurately.  Anosognosia affects up to 81% of people with Alzheimer’s and some studies show up to 77% of patients suffer anosognosia after a stroke. So can your loved one accurately assess their driving ability? How many of us without a diagnosis over-rate some of our abilities?

Some rehab centers offer assessments, but it’s not so easy to find and in reality, who wants to go pay for a test to learn they might not be safe on the road anymore?

As the adult child, my siblings and I discussed it with our parent’s before the doctor submitted the paperwork to revoke their licenses. We were seeing a lot of dents and dings on the car that were multiplying at an alarming rate before this happened. In the end, we had to hide the cars when they continued to drive after their driving privileges were suspended by the state. I had also retrieved them a few times when they got lost driving to familiar locations. To read more about how we managed through this stage, you can read my posts from back in 2012 called Operation Safety Net.

The car keys represent freedom and independence. Most people don’t want to let that go. However, it’s a battle that is worth fighting for everyone’s safety. Believed. 

Options:

  1. Check out your local community to see if you have a Village that can provide a ride.
  2. Contact your county Agency for Aging that can refer you to discounted coupon packages or other discounted local ride services.
  3. Contact a home care agency to set up permanent rides to the grocery, mall, or drugstore.
  4. Check with neighbors or church members who might be interested and available to help out.

Protecting a Parent from Elder Abuse

WEAADEvery year an estimated 5 million older Americans are victims of elder abuse, neglect, or exploitation. And that’s only part of the picture: Experts believe that for every case of elder abuse or neglect reported, as many as 23 cases go unreported. This post is to honor June 15, 2016, which is World Elder Abuse Awareness Day.

While likely under-reported, elder financial abuse costs older Americans $2.9 billion per year (National Council on Aging).  When my parents started to slow down and I noticed they were a little more forgetful, my siblings and I went on high-alert.

Thankfully, when mom signed a contract with two different firms to repair a small hole in their gutter, one for $5,200 and one $1,200 for the same repairs, she called my sister sensing she needed help and we were able to step in and cancel the contracts. It was a major warning signal that someone could take advantage of our parents.

For the 34.2 million Americans providing unpaid care to an adult age 50 or older (Caregiving in the US – AARP 2015 Report) in addition to helping with their care needs, if someone is not helping with the finances, it’s important to be vigilant because of the growing threat of elder abuse. You can download a free white paper designed for caregivers to help you understand and organize the important documents you will need.

Some elder abuse is subtle. I watched as my parents started to send checks to a wide-variety of new charities they had not previously supported. Then I started to see new magazine subscriptions to publications they would never read. These were smaller, more incremental solicitations that played on my parent’s beliefs and forgetfulness. Within a year, both parents were diagnosed with different forms of dementia.

Many adult children struggle to help mom and dad, but there are a few ways families can work together to ensure their parent’s don’t fall victim to a scam.If you are starting to see new spending habits, three things you can do:

  • Offer to help in small ways to support your parent. The fear that a child will take away car keys or put them in a “home” are very real, so make sure they know you will just be stepping in to work side-by-side until they can manage again on their own. For more on this see last weeks blog on the concept of being a “care partner”.
  • Meet with an estate or elder care attorney if you do not have a Durable Power of Attorney (DPOA) or Healthcare Directives in place. You will need these to be an effective advocate for your parents(s) and doing this now will be invaluable should a parent’s health decline.
  • Contact Adult Protective Services (APS) if you have evidence of fraud. While there is little they may be able to do, they should be able to direct you if there is evidence of financial abuse. Before you pursue this option, I hope you will check with an elder care attorney.

The two ways my parents became super subscribers and diligent donors was from phone solicitations and incoming mail. Many of us have heard about the phone scams, but you can’t discount the mail as a potential threat to your parents. Many charities and publications thoughtfully word their solicitations using language that allows the reader to believe they have already pledged money as well as been subscribers. It’s incredibly effective. Warned. 

For a checklist you can share, here is a list of scams produced by the Department of Health & Human Services.

The Ongoing Role of Advocacy for Caregivers

As a caregiver, you learn the important role you fill when you speak up for your loved one. This talk by Samuel Cohen inspired me. He reminds us that our loved ones with dementia (including Alzheimer’s) are unable to advocate for a cure for themselves. And now that they are gone, I now have the time and space to help answer his call to advocate for those who suffered from this disease.

Honestly, it’s also self-interest. I aspire to be an active grandparent for my children. Because I had them later in life, I will be in my 70s most-likely when (and if) there are grandchildren. If I want to have a relationship with them, I need to know then in their teen and young adult years.By then, I will be in my 80s. Statistically, 50% of us living in our 80s will have some form of dementia if we don’t find a cure. Undertaken.

Caregiving and Siblings: It’s Important to Make it Work

kaywithsibs
Photo credit: Guy Browning (thanks for letting me boss you around to get this photo)

Dementia has taken our parents from us incrementally and cruelly*. We faced many hard decisions through the journey.

The most notable legacy my parents left behind was adult children that could work together. We had to overcome a host of challenges as my parent’s health was declining. We are like many families, we’ve got baggage from childhood and we problem-solve differently. Our parent’s estate plans named my sister because she was eldest and a lawyer. But my sister lived on the other side of the county, so it wasn’t really the most practical solution. It was one of the first things we had to discuss and addressed. I am the only local adult child, so it only made sense for it to be me. As the youngest, it brought in some expected issues like why would anyone listen to the “baby” of the family–with my parents in the lead. It took time to develop this new relationship.

I’m crazy for process and clear-cut solutions. When we began to have disagreements, I proposed some working rules for working together and that we adopted. They were:

  1. Spouses are invited to participate, but only direct descendants vote.
  2. It’s okay to disagree, but not okay to be disagreeable.
  3. Majority rules on any vote unless it impacts any of us financially. If the outcome of the vote impacts us financially, the vote must be unanimous.

We were blessed to be raised by parents who taught us how to communicate, even when we disagreed. We weren’t always in agreement, and noticed different things at different times. But we needed to work together to help our parents, so we did.

I hear the same issues from many other adult children I have talked with over the years. Most often, I hear how the conflict tore the family apart. I’m thankful that it really brought us closer together. We used an online site for free teleconferencing called TalkShoe. Putting us all on the phone together had a positive impact. We could hear the tone of the voice and ask questions of each other. It also allowed us to listen how our siblings communicated with each other. We eliminated the “he said/she said” misunderstandings.

When my siblings realized how much time a week I was spending to help, they suggested I get compensated. It wasn’t a huge amount of money, but it was recognition that I was spending a good portion of every week visiting, advocating, and assessing mom’s needs. My husband and I actually built the idea of compensation into our trusts because we have experienced it first hand and understand the toll caregiving takes on not just the primary caregiver, but the caregiver’s family.

My siblings were engaged, supportive, and I know many other families blow up on this road. As hard as this journey has been, I recognize how many blessings it has also brought to me, my family, and my siblings. Humbled.

*I don’t know if someone else said this first. Over the last week I wrote it on a post-it note when contemplating our journey. Please let me know so I credit you for this statement which felt very apropos to this post.