Posted on September 27, 2011 by

Battling the Denial of Alzheimer’s

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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  • Dianne said:

    "My situation is somewhat different. My mother has been diagnosed and SHE refuses to accept the diagnosis. My father,myself, the grandchildren and my mother's siblings all accept it and recognize the signs. Mother is fighting the diagnosis and says the doctor and I are trying to "commit" her. I am the one she gets angry and hostile with during her bad times. It is very difficult listening to the horrible things she says and pushing them out of your mind.".

  • V V said:

    "Talk about denial. My Dad earlier was EOD & on patch & driving. Then he apparently missed a car ins pmt which led to uninsured driver report by ins comp to state which led to suspended driver's license. All along he refused help & asserted he'd "get to it himself. " That led to his license 's revocation.. Since then Dad had to hav surgery & dozens of medical support, nurses, med tech specialists & physicians & his surgeon are well aware his Alzheimer 's describes as moderate & definitely advancing. Thus it is difficult to hold his attention; & truly even if u believe u hav his attention while covering a topic of interest, he'll butterfly off & no matter how friendly, crucial, or useful to smoothing the planning & execution of daily, short range & long range events/evolutions, once his interests flits off... that's it. As urged on websites & blogs, created small memory book with pictures but it's so small he misplaced it. Yet he V had HUG FITNESS at idea of full sized picture album/scrapbook. Am hoping organic & wholesome food & nutrition supplements slow & regress condition as advertised; however, he prefers junk foods & lots of ice cream & cookies & persists in insisting he's lived this long eating the way he does & made it to 86. My mother passed away decades ago. He nearly got his 2nd wife killed when she became very ill & she had to call 911 herself because he failed to do so. Beyond that he doesn't place much value on "Women's Work" & so life for him mostly same since he moved cross country & in with me. Problem is that he was mentally/emotionally abusive to Mom & inappropriate speech & sporadically worse 2me. When Mom passed away I advised him to get & keep up long term care insurance. He didn't. My work takes/took me out of state month at a time. When we were about to go out for Thanksgiving dinner last year, he suddenly dropped pants to show he had an "OUCH". That led to FMLA & processing for assistance to pay for: Attendant Care by agency or me or nursing home. Since Dad has over past couple of years on multiple occasions threatened to break out of Nursing home & find & beat me up &/or kill me, well... let's just say I sleep with my door locked. This V particularly since sporadically he claims to have gun. After his misperceptions, he says he's kidding when threatens me. Oddly enough, I've never checked on nor confronted him about going into nursing homes. I'm well aware Grandma went into nursing home & broke hip & died in hospital & he was one who had her committed & made no room in his home or life for her & barely saw her once a month or two & it was Mom who checked in on her regularly. Comment I read above about stress causing heart attack & stroke & taking 7 -8 years off caretakers life hit home. My medical needs were ignored when he was still driving. When he left his 2nd wife he lived with longstanding friend from church for free then began complaining about gent when guy was cooking. Personally I was planning on moving apx 3 years ago & suddenly he came here cross country. I was closing apartment to save for deductible for surgery, because my other cousin back home was/is open to my moving home for starters via her address & reestablishing residency for college & senior housing if I need that. Shucks, Dad's home town buddy was to help Dad reestablish his residency & his short attention & cognitive failures had me completely freaking out when he drove himself back forth cross country. .. not once, but 2 maybe 3 times. Say 3x because Both Dad & relative out here slipped & it came out that he was actually here year before after terminal diagnosis of sister. So she believed he did pretty Ok, but as other folks remarked, as soon as they/he/she departed, Dad asks, "Who was that?" for the umpteenth time about now deceased ' s husband & children & stepchildren. Last year couple days after Thanksgiving I turned around from stove in kitchen to find him agitatedly standing apx foot behind me & tad off to side with serrated steak knife in hand, arm bent at elbow & tucked into his side & point of knife aimed at my back. I've since learned from research that yes/no questions that require short term memory processing aren't recommended, etc. He hasn't done anything that extreme since then. He knows who I am; so, that's a good thing, but sometimes he tells me I've said stuff i didnt say or that such & such just occurred or was seen by him & it usually happens shortly after he arises in morning & before he has taken Vitamins/memorySupplents. His Alzheimer 's med instructs it be taken at night however he "doesn't like pills" & so sporadically skips it & takes with vitamins in morning. Ok I never had children & divorced twice & definitely wasn't 3 squares meat potato type. Fortunately, I am descent cook, baker & tad gourmet /organic. Main problem is that my slow metabolism& high risk cancer genetics from Mom's side of family means preferable to hav greens, spinach/salads every meal & Dad doesn't nowadays appear to like dinner vegetables but will eat or drink small salad. Recently dried some super greens for homemade crisps/crackers made with added protein he hopefully prefers over junk white flour cookies he manages to sneak into shopping cart. Now understand full time Homemaker complaints that they're deprived of intelligent conversation & am only going at 4 months at this. And Dad persists in misoginistically directing everything as always even when he never cooked or cleaned & now safely can't drive. He repeatedly asks same question to distraction potential which when driving not preferable & becomes agitated if ask him to plz stop. He doesn't like my music or talk radio & sometimes I wonder if I'm his last resort & only child he had nothing to do with me for better part of 25 years while married to his 2nd wife who was one of those who believes "freckles mean you're part (bleeped)". Sometimes I wonder if he has had undiagnosed split personality or sociopath stuff going on because it's almost as if he Stockholm syndrome adopted his ex wife's eating preferences & insisted he couldn't stand &wouldn't eat foods my gourmet cook Mom made all time or cuisine we had when dining out. I'm trying to ensure he feels safe. Over time I've learned he was both bullied & undersized youth & likely worse & found ways to retaliate. Sometimes he wakes up from dreaming about school, church camp bully abusers. Personally, only overbearing bullying misoginistic type I had to deal with was Dad. Thank goodness he's mellowing. Still.... ? Any ideas?".

  • Gary said:

    "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.".

  • Mo said:

    "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.".

  • Matt said:

    "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!".

  • Dianne Bonfiglio said:

    "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.".

  • johan armstrong said:

    "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.".

  • stephanie said:

    "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.".

  • Lorrie said:

    "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.".

  • Scott said:

    "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".

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