In denial
My LO was recently diagnosed with Alzheimer's. The family was not surprised. She is however in denial and continually states she doesn't have Alzheimer's. I understand this is quite common; however, I am wondering at what point, or will she ever recognize that she does have Alzheimer's. Since the diagnosis it hasn't been easy and I know it will get harder. Seems to all of us she is deteriorating quickly.
Comments
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Welcome, I’m so glad you found our group. If she doesn’t recognize it now, she probably never will. This is not denial, it anosognosia and is very common with dementia. It’s not just that she won’t accept the diagnosis, it’s that her brain is not capable of recognizing the symptoms she is having. This often leaves the person with dementia feeling like doctors and family are gaslighting them. It’s generally best to avoid any discussion of their symptoms or of dementia. We have a saying here, never try to reason with a person with dementia. No amount of logic or physical proof will prove your point and they will turn the whole discussion into an argument. Anosognosia any seem like a very minor problem, but don’t underestimate the very serious problems it can cause. My mom believed she was perfectly fine to go up and down steep stairs ( she had fallen 4 time in the last few weeks), she didn’t understand why she couldn’t bake banana bread while she was in the home alone, she bought a 5 gal bucket of paint to paint a 2 story garage herself, she thought that since she can push her walker there is no reason she can’t push the lawnmower (I could go on and on). This refusal to recognize her limitations meant we were forced to move her to a facility much sooner than might have otherwise been necessary. I will attach a few links that might be helpful since you are new to this. I know this is not a part of your question, but seeing a lawyer as soon as possible is very important (someone should be appointed durable power of attorney). I am so grateful mom’s neurologist recommended it when she was diagnosed.
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Thank you so, so much for this information. I have never heard of anosognosia, and the knowledge is so valuable. Fortunately, I am her durable POA.
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Great information above. Anosognosia is one of the most difficult aspects of dementia. I know first hand and lived the nightmare with my loving DW for a long time. It never changes because their brain will not improve to understand it. If rejected to start, that is where it will remain. Wish I could say it gets better but only when your loved one progresses to a later stage and is less aware of anything. Don't argue, don't try to convince, don't use or allow anyone else to use the trigger words around your LO. Be prepared for your LO to believe everyone else is attacking them and thinks they are "crazy" (my DW's words, not mine) and then they become the enemy also. Wish I could offer good news about anosognosia but my experience was the hardest years of the entire journey. Explain it to any close family or friends who might visit or be around. Educate them on how to act and/or respond. Make sure they understand what is going on before they interact with your LO, for the sake of your LO and yourself. You are the one left in the aftermath when others have gone home so protect yourself also from them triggering a reaction.
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Thank you for your advice it means a lot. I have already been left alone at home after a triggered interaction. I know that this is only going to get harder, I hope the knowing helps me manage this for my sake and my LO.
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Knowledge is power, not to control in our case, but to survive and provide loving care for our LO. Ask questions about anything at the first sign. People will help you. This is one the most pure places I have ever experienced where the age old statement of " there are no dumb questions" is so highly valued with respect. I was late to learning what I needed to know because no one told me about this site way back at the start. So, I experienced the worst of anosognosia with my DW, a person who would never have said, done or reacted as she did before her illness. We survived but at the loss of too much time. Anosognosia stole that from us while the disease stole her from me. Don't ever wonder, ask fast and often. Things change so fast.
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my DH also thinks nothing is wrong with him. I saw a post awhile back on here about getting business cards that say “The person I am with has memory problems. please be patient” or something of that sort. I think those are good to have when going out somewhere.
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I've let people we are in contact know but carrying cards is a really good idea. Thanks for posting!
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unfortunately the answer is never….
Please carefully read the DPOA to verify exactly what your job description is…
I suggest you read alz.org from start to finish. It is a good intro to what you will need to know
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In the end it's not important that she understands she has the disease. She can't retain the information because the disease has progressed enough to block her brain from holding on to new information. Her knowing won't affect the decisions and structure you'll put in place to make up for her losses. It's a terrifying diagnosis anyway, so no need to force her face it. Focus shifts to helping ease her through her day by discreetly taking more and more off her plate. The disease makes it hard for a person to hang on to more than one thought at a time, so simple multi-step tasks around the house become complicated.
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As far as carrying cards, I just took some business card (a doctor's) and I wrote in large capital letters on the blank back "DEMENTIA". I would stand behind her and hold this up behind her back when we went to an appointment or other such cases. Receptionists and clerks could quickly glance at it and always immediately acted appropriately. Occasionally my DW would notice that the person was looking behind her and wonder what I was up to, but I was always able to deflect her.
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My DH knows he has ALZ but thinks that he is just fine to handle some financial things. I overheard him talking to his brother about how they might want to "take a piece of the action" in regard to a possible financial opportunity. (Yes, all the POA and such are in place) but all I was thinking to myself, " guess again."
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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