Battling the Denial of Alzheimer’s...

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Posted on by Gary Joseph LeBlanc

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.

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9 Responses to Battling the Denial of Alzheimer’s

  1. Gary, you are a true inspiration for all those that have parents with dementia.

  2. Scott says:

    Gary,

    My mom passed away in February, 2010 after a long battle with Alzheimer’s. I think we all were in denial in the early stages. Who wants to accept an Alzheimer’s diagnosis?

    Dad cared for mom at hom for all, but the last few months. He was in denial for much of her disease. He did not want to accept what was happening, so he would argue with her a lot about remembering things.

    He let her drive for much longer than he should have, but he finally accepted what was happening, sold her car and hid the keys.

    Interestingly, many out-of-town family members thought we were overreacting and would not accept how sick she was. She too would carry on a good conversation and then ask who they were after they left.

    One of her brothers would not even accept that she was near death, resulting in him not getting to see her before she passed.

    I think caregiving is such a lonely road because people not involved in the care have no idea how difficult it is. Many times the extended family stays away because they do not want to know how hard it is.

    I have the greatest respect for caregivers.

    Scott

  3. Lorrie says:

    My mom has EOAD. She was diagnosed in her mid-50′s, officially. But she was symptomatic for many years prior to the official diagnosis. Her dad and grandmother both had the disease, but were not diagnosed until they were elderly. My mom has been the youngest victim in our family. Why, we do not know. We can only speculate that since she has a different biological mother than her siblings, that perhaps she inherited bad genes from both side of her gene pool. She also had Fibromyalgia, Chronic Fatigue Syndrome, Depression, and emotional stress that cannot be imagined. We think that maybe all of these factors, which can give many of the same symptoms of Alzheimer’s (brain fog), along with nutritional deficiencies may have led to her early diagnosis. The genetics we will never know since her biological mother died at the age of 33. To say we didn’t live in denial is an understatement. “It’s the Chronic Fatigue, that’s all.” “She’s just tired and not getting adequate sleep and rest and that is affecting her concentration and memory.” We ran the spectrum of excuses until we could no longer deny what was happening to her.

    At age 67 she is now approaching the advanced stages of the disease and lives full-time in a memory care center. My step-dad was unable to handle the stress of caregiving any longer and I live in another state and other family members were not in a position to take on full-time caregiving. Gladly, the place in which she now lives takes good care of her and they love her.

    Her speech has been affected by the disease and it has been some years since any of us has had a real conversation with her. Boy, do we miss our talks. She loved to talk. She is skinny as a rail, even though she eats well. She can’t sit still when awake and is always up wandering around smiling at people and visiting. You see, she loves people and has a very sweet spirit. That spirit is still there, trapped inside of a brain and body that has betrayed her. She still recognizes the faces of those closest to her, but we know the day is coming soon when she won’t.

    I too, have the greatest respect for caregivers. I have had my turn at taking care of her from time to time, for days and nights on end. I know the strain is great. I recently watched my mother-in-law care for her Alzheimer’s stricken elderly husband for over 5 years. She kept him home until the very end, with hospice helping her out. What a toll it took on her. She did have help from various family members from time to time, but most didn’t realize just how bad off he truly was. She was the one in the trenches day and night, dealing with the madness of the disease; dealing with a husband who remained confused during his waking hours, who just wanted to go home, wherever this elusive home was that he wanted to go. She dealt with the sleep disruptions, often going days without adequate sleep, herself. I’ve read that this type of caregiving can take 7-8 years off of a caregiver’s life. And some die from heart attack or stroke, just from the strain of it all.

    So, my hat is off to all caregivers everywhere; to those taking care of a loved one with Alzheimer’s or any long-term disease. Educating family and friends is the best thing you can try to do.

  4. stephanie says:

    People would always say to me, “At least your mom is healthy.” so what? She can then live longer with memory loss? AD kills anyway, doesn’t care if your physically healthy.

  5. I care for my husband who was diagnosed with Alzheimers 4 years ago. He cannot look after himself at all now. Im still in denial about him and think if i could only work a bit harder looking after him he might get better, i know its crazy thinking but i cant help myself.Im waiting for the bolt from the blue to hit me. You cant have a conversation with him now as his speech is badly affected, he can hardly walk and also has to be helped to feed himself at times. There are times when i feel i cant go on but i love him so much and i know if the roles were reversed him would walk over coals for me and never complain. Im willing to put my life on hold to care for him for as long as it takes, if only i could accept it.

  6. I will forever be in denial. I don’t believe it can’t be at least TREATED, if not cured. It is going to kill me… or they are going to find a cure. One or the other.

  7. Matt says:

    Great post. The screening tests have improved dramatically over the last 2 years (for example the bcat). If only more primary care docs would screen more often!

  8. Mo says:

    My husband just turned 71. He has had Alzheimer’s for about 5 years and is now in the moderate to severe stage and in a AL facility. His siblings, who are older, refuse to believe he is stricken. Even though he inherited an Alzheimer’s gene from both parents, somehow, in their minds, it is my fault. Denial is terrible. People use denial to shirk responsibility. They make you, the person dealing with it all, the bad guy. It is just so wrong and so terrible.

  9. Gary says:

    I am currently, with the help of my sister,respite care a few hours a week at her home, and adult day care, caring for my mother.

    Mom has been diagnosed as possibly having Lewy Body dementia. Of course we are being told that the only true diagnosis for this is after death. All they can say is that from past records of people that have died with Lewy body is that she exhibits those symptoms.

    My sister is finally coming around to accepting the disease, but it is truly a tough pill to swallow. Accepting the disease is one thing, having patience is another. Both of us have our moments with mom, good and bad, it’s hard not to let guilt get to you when your patience runs out.

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