Alzheimer’s Disease is a devastating illness and one I have given attention on my show multiple times. According to www.alz.org, consider these 2015 statistics:
- It’s the only cause of death in the top 10 in America that cannot be prevented, cured or slowed.
- Almost two-thirds of Americans with Alzheimer’s disease are women.
- 1 in 3 seniors dies with Alzheimer’s or another of the more than 70 types of dementia.
- Alzheimer’s disease is the 6th leading cause of death in the United States.
- Only 45% of people with Alzheimer’s disease or their caregivers report being told of their diagnosis vs. 90% of people with the four most common types of cancer having been told of their diagnosis.
- By 2050, the costs of Alzheimer’s care could rise as high as $1.1 trillion. In 2015, Alzheimer’s and other dementias will cost the nation $226 billion.
Although the statistics are staggering, it doesn’t ‘bring home‘ the human cost of the disease.
Several weeks ago I had a gentleman, Greg O’Brien, scheduled for my show. He wrote the book, On Pluto: Inside the Mind of Alzheimer’s. As an accomplished journalist, Greg felt it was important for him to document his life experience as the disease progressed. Having read the book, and realizing how advanced Greg’s disease was, I had wondered if he would be able to do the show. There was a good chance it could be an ‘off day’ for him. However, the publicist insisted as late as the day before the show that all was well. Show time comes – no Greg. I was a bit disappointed but realized this was a perfect example of how unpredictable the disease can be.
So, before I forget, I want to share with you some of the human, personal elements Greg encountered living with this disease.
- He spoke of a ‘cognitive reserve’, a backup tank of inherited intellect. The more reserve one has to draw from, the longer one can maintain a sense of present thinking. Tip: It’s never too late to build up that reserve!
- Greg’s parents died with the same disease. As they came closer to the end of life, he had to consider ‘exit strategies’. Imagine the difficulty in planning one’s own exit strategy – and to do it when you still have the cognitive ability to do so!
- Each day Greg has to start with 5-Ws – who, what, where, when and why. For me, I have woken up on occasion with a little disorientation – Where am I? To have to do it daily has to be challenging and exhausting. In my case of disorientation I recover my focus rather quickly. Can you imagine how frightening it would be to NOT be able to answer any of the 5-Ws?
- Anger and rage, often involuntary, also occur as symptoms. I had a guest on my show, Jaqueline Marcell, whose father exhibited a lot of anger. She wrote the book Elder Rage, or Take My Father… Please!: How to Survive Caring for Aging Parents.
Her book, written from a caregiver’s perspective, shines a light on a situation that many encounter – caring for a parent with dementia. Likewise, I had another author, Diane Drummond DuPre from the Myrtle Beach Author Network on my show. She wrote the book, Mother, I Am Your Daughter: Do You Want to See My Driver’s License Again? Diane’s book takes a sometimes light-hearted look at the challenges of being a caregiver of a parent with Alzheimer’s – with the added dimension of coping with her own diagnosis of early onset Alzheimer’s. In each case you can see from the authors titles that anger is a part of this disease. But truthfully, if I had difficulty with recalling any of the 5-Ws – I’d be pretty pissed off myself!
- A common experience in dementia patients is known as ‘sun-downing’ caused as light fades to black. Greg experienced this phenomena and found physical routine helped him reduce end-of-day confusion and restlessness. This was one of many ‘tips’ that Greg provided as ways to cope with certain symptoms.
- One thing I learned reading Greg’s book was about the “Five year” look back. If a person does not own assets – a nursing home by law must enroll an individual as destitute – not encumbering the assets of family members. It is certainly something for family members to keep in mind. When Greg was signing documents relinquishing his assets it created a great sense of loss of self – first mental , now material. Loved ones should be sensitive to the feelings of loss experienced by their loved one.
There is one story that touched my heart regarding Alzheimer’s. I know a couple, Nora and Billy who came to the beach every summer for their vacation. A nice, loving couple. About 4 years ago Billy’s physical health started to deteriorate – but he was very alert and present mentally. Nora was an excellent caregiver, taking care of Billy’s needs and only occasionally complaining. A couple of years ago Nora started exhibiting symptoms of Alzheimer’s. Her disease progressed quickly and it wasn’t long until Billy had to place her in an assisted living facility. Months later, Nora’s memory had deteriorated to the point she was no longer able to recognize Billy as her husband. Even though she did not recognize him, Billy continued to visit her. The heart-breaking part to this story is that on one of his visits, Nora excitedly introduced Billy to her new ‘boyfriend’ at the facility. The love of his life no longer remembered their decades together.
Alzheimer’s disease and other forms of dementia wreak havoc with the lives and memories of those afflicted and everyone their life touches. Each of the authors, and their books, provides insight and guidance for those living with Alzheimer’s or dementia and their caregivers. Resources are available – take advantage of the information provided by those who have the courage to share their story!