If you’re in the universe of being an Alzheimer’s caregiver, you probably made a point of watching the recent show on PBS called “Alzheimer’s-Every Minute Counts.” As one who is knee deep in the field of caregiver training, as an author, lecturer and journalist you might think that there’s nothing for me to learn by watching this but such was not the case. When I lecture, I am aware that there’s probably a couple of folks in the audience that already have a very good understanding of my topic. With that in mind, I always remind them that I’d like them to look at the information I’m sharing as reinforcing not redundant.
One of the most powerful points they made in this program was that the world is facing an Alzheimer’s epidemic. In the United States, a new case of Alzheimer’s is diagnosed every 66 seconds. In the world, it’s every 4 seconds. I used to remind my audiences that since 2000 deaths from Alzheimer’s has increased 68%. Apparently that number is now 71%.
I watched how the caregivers and family members were dealing with their afflicted loved one with great interest. Overall, most were doing very well while others could have used some help. There was the son that became frustrated with Mom asking about where the car was, even though they repeatedly told her it was gone because the engine blew up. What the son didn’t understand is that mom will never forget the questions about her car but will never remember his answer. It’s a great example of my velcro theory. Imagine that the answer you’re giving them is attached to a piece of velcro; when that answer gets to their brain, there’s nothing for it to stick to.
I was particularly impressed with the job that a daughter named Daisy was doing for her mother. Her love and unselfish devotion was remarkable. She shared that she lost her “first mom” 5 years ago and now she is caring for her “new mom.” She went on to profoundly share how important it was for her to accept help. Her exact words were, “You need it. You say you don’t, but you do.” Good advice. Daisy sold her business to care for her mother and at the time of the filming, she was providing her mother total care. She was dressing her, bathing and grooming her, toileting her, feeding her and more. She also did a superb job of keeping track of her progress or lack of progress as she provided her mothers physician with great insight into her decline. Daisy’s mother suffered from a genetic mutation which is the cause of her Alzheimer’s. As if she didn’t have enough to deal with, Daisy took a test and learned that she to has the same genetic mutation which means she now knows exactly what’s ahead for her unless they discover a way to prevent this thief of a disease.
I’ve watched a number of programs on this illness and I always listen for the word cure to come up in conversation with Physicians and researchers. True to form, this program talked a great deal about prevention and stopping the progression of the disease but never mentioned the word cure.
I know I’m repeating myself from earlier writings but caregivers of those with Alzheimer’s and similar dementias are my heroes. I know it’s not easy to place mom in a dedicated community when your late father said he never wanted that to happen. But isn’t that what’s best for both of you? It’s hard not to cry in front of them as you lose a little of them almost daily but why add to their worry and confusion? There are wonderful resources available to you and I implore you to take advantage of them and learn more; for you and your loved one. Remember, Join the Journey.
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