September 27, 2011
I believe one of the more frustrating and downhearted things that caregivers endure while caring for Alzheimer’s sufferers comes from the ever present attitude of denial. Not only does this emanate from loved ones diagnosed with the disease, but also from family members and close friends. “I just talked with dad on the telephone this morning and he sounded perfectly fine to me.” Or “I just saw Aunt Sara at the grocery store last week and she didn’t look like she had Alzheimer’s.” This is as bad as someone saying, “You don’t look like you’re deaf.”
Throughout the almost 10 years of caring for my dad with Alzheimer’s, I can’t tell you how many times that I had family members and my father’s friends tell other people that, in their opinion, I was over-reacting to the whole situation. But little did they know that within seconds after their leaving, my dad would quizzically stare at me and ask, “Who the heck were those people?”
This uninformed and insensitive diagnosis, especially when it comes from your own kinfolk, leaves you with a similar feeling as if you’ve been sucker punched in the stomach and had the wind knocked out of you.
This is only one of the significant reasons why public awareness about Alzheimer’s is so essential. There are still too many people believing that mild cognitive impairment is an absolutely normal part of life. Nothing could be further from the truth. Any signs of cognitive disorder should be checked out by a physician.
If possible, a family meeting should be held right after the initial diagnosis is obtained. The sooner everyone realizes that their loved ones will no longer be able to care for themselves in the near future, the less denial will be brought forward. Even if this gathering becomes a one-time event (which it shouldn’t), it’s vital that family members become aware of how extreme the situation truly is. Hopefully they will recognize how unfair it is to drop everything into only one person’s lap.
Collect as much literature on the subject as you can find before hand. Try to have an information package put together for everyone to bring home with them. You should be able to come by much of this at your local Alzheimer’s organization. Granted, half of it may end up in the trash unread or might not be even looked at for weeks, but it’s worth a try.
Also ask if any of them are willing to attend a support group with you. Sometimes the message is heard in louder volume when it’s told by outsiders.
Unfortunately, the denial seems to be even stronger when someone is diagnosed with Early Onset Alzheimer’s Disease (EOAD). People have a harder time understanding how a person could have Alzheimer’s and still only be in their fifties or maybe even younger. Spreading the message that this devastating disease isn’t just an old-timer’s illness anymore is of great importance. Take a look at University of Tennessee’s women’s basketball coach Pat Summitt. Recently she was diagnosed with EOAD at the age of 59. Here’s a woman who has stayed physically and mentally active all her life and yet the disease still broadsided her.
Early onset is becoming more and more common. So if you have a loved one or friend showing early signs of dementia, don’t brush it off. This is nothing to mess around with. Alzheimer’s is now the fifth leading cause of death in United States for those over the age of 65. It’s a fatal disease; there’s no denial in that.