Ten years ago on August 16, 2009, Ida Arnette died from Alzheimer’s disease. Hard to believe it was a decade ago. As I try to do each year on this anniversary, I climb Mt. Ida at 12889′ in Colorado’s Rocky Mountain National Park, a perfect peak to honor Ida.
The Long Goodbye
With an average life expectancy after diagnosis of eight to 10 years, Alzheimer’s disease has been called “the long goodbye.” Unlike other terminal diseases, when a person with Alzheimer’s dies all of their personalities traits, tendencies and abilities have disappeared.
It was in 2003 when Ida began to show the earliest signs that something was wrong. It was December when as a family, we went to the Peabody Hotel in Memphis, where my parents lived and I was raised, for their famous holiday brunch. As usual, we all got up to visit the buffet and indulge until we could no more. I noticed Ida walking around aimlessly. She was lost, not knowing where she was or who we were. As I went over to her, she seemed startled at my approach. “What do you want to eat?” I asked her gently. “Oh, you know, the usual.” was her noncommittal answer.
Over the next three years, she became more confused, more lost and less independent. It was in 2006 that our worse fears came true. As we sat in Jim’s, my Dad, hospital room, Ida didn’t recognize her husband of 58 years. She had no idea that he was dying. They had been a powerful team raising my brother, Ken, and I. In their sunset years, they had cared for each other and Jim had hidden many of his wife’s symptoms.
By 2009, her disease had progressed to the final stage where her basic daily functions were no longer under her control. She needed assistance with all aspects of life. She went on a hospice service to make her final time as comfortable as possible and to go on her own time. She died on August 16, 2009.
I said hello to her on July 27, 1956, and goodbye on … well, I guess I still haven’t.
Over 5.8 million have AD just in the US alone, and an estimated 44 million worldwide. It is the sixth leading cause of all deaths in the United States, and the fifth leading cause of death in Americans aged 65 and older. Whereas other major causes of death have been on the decrease, deaths attributable to AD have been rising dramatically.
Between 2000 and 2017, the number of deaths from Alzheimer’s disease as recorded on death certificates has more than doubled, increasing 145 percent, while the number of deaths from the number one cause of death (heart disease) decreased 9 percent. Every 65 seconds, someone in America develops AD1
Climbing the World to End Alzheimer’s
As I went through the journey with Ida, I made a vow that Ida Arnette would not become another number on an invisible list of people who had been killed by Alzheimer’s disease. I vowed to use whatever voice I could muster through my website, speaking and climbing to help educate the world on what this disease does to individuals, their families, and their caregivers. That Alzheimer’s disease is the only disease in the top 10 causes of death in the US that cannot be prevented, slowed, or cured. That money was needed to fund scientific research.
To be clear, while climbing is my passion, doing my part to find a cure is now my life’s purpose.
Climbing for Research
Since Ida’s death, researchers have learned a lot about AD. For example, the hallmark beta-amyloid plaques begin to form years, if not decades, before someone begins to shows signs of extreme forgetfulness. They have excluded many of the myths about the causes of AD, for example, that Alzheimer’s is caused by aluminum, flu shots, silver fillings, or aspartame.2 And that coconut oil is not a cure.10
Climbing for Education
However even with all this information out there, nearly 60 percent of people worldwide incorrectly believe that Alzheimer’s Disease is a typical part of aging4 – it’s not – it is a disease just like Cancer or Heart Disease. In that same study, 40% believed AD was not fatal.
So when I talk about education and awareness, these are the scary figures that push me up a mountain.
What can be done to prevent getting Alzheimer’s? They have found a link between a possible role of lifestyle factors. For example, a healthy diet, especially the Mediterranean Diet and the so-called MIND diet can reduce the risks.8 Also exercise, being social, and doing things that challenge your mind might lower your risk.3
Again, at now age 63, I’m trying to model the very lifestyle I advocate.
For all the bad news, there is a lot of good news around funding. In 2009, funding for Alzheimer’s research thru the National Institutes of Health in the US, was about $500M annually, for 2019 it is close to $2 Billion5. Most experts believe this is the level it will take to make significant progress.
Organizations like the Alzheimer’s Association and UsAgainstAlzheimer’s have done yeoman’s work to lobby Congress. Individuals have made countless phone calls, personal visits and even walks in Washington to shine a light on this epidemic.
A slew of not-for-profit organizations has made amazing progress in understanding the root causes of Alzheimer’s. The Cure Alzheimer’s Fund was able to create “Alzheimer’s in a Dish” so that researchers could cut years off the trial and error research approach by testing drugs in the lab and not on humans. The CAF is privately funded and one I highly support thru my efforts.
Yet for this progress, the lack of human volunteers throttles the pace of progress. It is estimated that 80% of all all trials fail due to lack of enrollees. The Banner Alzheimer’s Institute has a simple and effective program for anyone who wants support enroll in a study – many are simple non-invasive mind tests not involving drugs.
And there are many creative approaches to raising awareness and research funds. Help Stamp Out Alzheimer’s drove the US Post Office to issue an Alzheimer’s Disease Research Semipostal Stamp. Thus far, 7.1 million stamps (500 million stamps were printed) have been sold thus raising $953,000 for NIH funded research. If not extended, the stamp will be discontinued. Legislation has been introduced in the House (H.R. 3113) and the Senate (S. 1728) to require the USPS to extend sales of the stamp beyond November 2019. To date, there are 85 co-sponsors in the House and 20 in the Senate. Please contact your representative to show your support – I have. By the way, a similar stamp for Breast Cancer Research has raised over $77.6 million for breast cancer research.
I often call caregivers the silent victims. Individuals quit their jobs, go bankrupt and more to stay at home with a mom or dad. Turnover in nursing homes is 100% due to low pay and stress.
The Alzheimer’s Association cites that 83% of the help provided to older adults in the United States comes from family members, friends or other unpaid caregivers. Nearly half of all caregivers who provide help to older adults do so for someone living with Alzheimer’s or another dementia.
That about one in three caregivers (34%) is aged 65 or older, approximately two-thirds of caregivers are women; more specifically, over one-third of dementia caregivers are daughters and that most caregivers (66%) live with the person with dementia in the community.
One little known fact is that approximately one-quarter of dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent but also for children under age 18.
Of course, Alzheimer’s is a human disease that strikes worldwide – almost 44 million people. In almost every modern country, there are organization that provides support for caregivers and leads research in their country. Alzheimer’s Disease International leads the way for many smaller countries.
The Alzheimer’s Society in the UK is a great organization where finding a cure for Alzheimer’s has been made a national priority in that country. In Canada it is the Alzheimer’s Society and in Australia, the Alzheimer’s Australia. Google Alzheimer’s and your country to find who your local organization.
Alzheimer’s Killed my Mother
I don’t know how else to say this. There is so much gloom and doom out there. Many non-profits use scare tactics to raise money. But this is a simple fact; Alzheimer’s kills and there is absolutely nothing we can do about it – today.
In spite of all of this, I remain optimistic that a cure will be found, a way to slow AD will be found and hopefully, caregivers will receive more support from tax relief to higher quality and affordable institutional care to in-home alternatives.
But nothing will happen without our collective energy.
Deep, Deep Appreciation
My loyal readers and followers have been so kind and generous with your support over the past 10 years. Thank you. Every time I ask for donations, you respond. In 2014, we raised over $70,000 while I was on K2. Over $40,000 was donated during the Island Peak climb in October 2018 and last month while I was climbing in Bolivia, you honored my 63rd birthday by donating $
6,000. $7,613 to the Cure Alzheimer’s Fund. The donation site is still open.
As usual, I link to this page on my website where I have a list of organizations deserving of your support.
Memories Are Everything
My mom died not knowing she had two children, a loving husband, and eight brothers and sisters. She died not knowing where she was born or that she was sick. She died not knowing it was her son who held her hand, hugged her tightly and gently kissed her on her cheek. She died too early and for the wrong reason.
As I hike to the summit of Mt. Ida, my thoughts drift back in time …
It was about 5:00 pm on a Sunday when my brother called me to say “She’s gone” …
I took a moment and immediately went into Manager Mode. “OK, her burial policy is … I will be there on … We need to call … ” I failed to let the moment sink in as I had been preparing for this day since I escorted Ida out of her home of 50 years in September 2006.
My Best Friend
Ida and I were close as I grew up. She was always willing to answer my endless questions like “Mom, what is the stock market? Is cancer contagious, Why do Baptist preachers shout so loud?” and on and on. I have wonderful memories of sitting on the kitchen counter talking and talking while she made dinner.
When I started my career and moved away, we talked weekly on the phone. Now she had endless questions about the business world and if HP was being run properly! I often say that if she had been a man in the 1950s, she would have been a CEO of some company.
I miss my friend and those questions today.
I made this video a few years ago while climbing Mt. Ida. It’s just as timely and meaningful today.
Memories are Everything