Anosognosia Is Overwhelming Me
I know my DH cannot help having Anosognosia as part of his Alzheimers but WOW is it taking a toll on me. I JUST NEED TO VENT. NO ADVICE PLEASE.
I have always been a person who is grounded in facts and science. Now I must try to shift my core personality to accommodate my DH’s lack of understanding of either of these as it relates to his limited capabilities.
He lives in a world where his memory loss is not real to him. He lives in a world that angers and confuses him when I try to mitigate his mistakes (only when necessary) or distract him from unsafe situations.
The way I live in my world is to face reality. He cannot live there with me. It is taking its toll. I am tired, anxious and depressed so much of the time. There is no real respite or escape from being constantly faced with his unawareness of how hard our lives have become.
Comments
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Hugs….with ya in our almost unsustainable hell.
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I found it especially difficult to realize that my DH would never know how hard it was on me, or be able to comfort me or appreciate what I was doing for him. It's a lonely existence. Sending you hugs and warmth.
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We understand. Big hug
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Right there with ya.
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We understand completely. 💜
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I understand and really feel the exhaustion. I also identify as a very grounded, fact-based problem solver, so adapting to a constantly shifting reality is so draining.
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it’s crap and I hate it. It’s exhausting.
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ditto to all of the above, living with the impossible!
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Vent away…we are here for you!
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((HUGS))
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That's the hardest part of this for me. He thinks he's fine, but can't be left alone for more than a few minutes.
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My dear wife suffered this "condition" early on. We received the diagnosis of MCI about eight years ago after I shared my concerns for her health and we finally visited a neurologist. From the start she rejected the diagnosis, test results from the neuropsychologist and comments from the doc. She "rationalized' the symptoms, as she had been doing prior to the diagnosis, as "I am not repeating myself, if I don't make sure I tell each child the same information, then that one gets mad at me so I just make sure I tell them all". She rejected the psychologist results because "I am not a good test taker and I tried to tell her that but she would not listen, the results are wrong". This is when I learned about "anosognosia". My wife's reaction continued to grow worse as she characterized her diagnosis as people thinking she was "crazy". We finally shared the diagnosis with close family only. She agreed at that time that we should. That began the worst almost three years of our life. She believed the family had told everyone (not true) and any innocent comment made she took as an insult about her and that the person thought she was "crazy". This got progressively worse and, obviously, no amount of talking, reasoning, etc. helped. The doctor tried to talk to her without success. It became so bad that she refused to see and family or allow they to visit her. She wanted to disown her children. Friends were talking about her, telling stories. There were times when she became so upset she wanted to leave me and go "home". She even packed the car one day with all her clothes before the anger subsided. For almost three years she would not go anywhere, see anyone, hated them all, and, in the end, finally told me she blamed me for all this. I share this to caution everyone that this phenomena is real, it can be horrible, traumatic, test every ounce of patience and possibly fracture a relationship forever. After her condition advanced, the anosognosia symptoms began to subside, eventually allowing reconciliation with family and children. We weathered through this storm thankfully and continued our path through this disease until the end about three weeks ago. Sadly, my wife missed three years of life with her family because of anosognosia, likely three years where she was still capable of talking, engaging, enjoying their company. We all lost that, never to be regained. No one told me that this was a possibility. I would have done more to learn about it, educated our children so they understood what was happening to their mother and maybe navigated those three years differently. The best thing the doctor could do for anyone facing this life, would be to refer them to this forum and help the caregiver or spouse, use it to find explanations and answers.
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Anosognosia is the worst! Mom thought if she can push her walker she can push a lawnmower, wanted to reupholster a couch, wanted a full size toaster oven so she could bake cookies in Al, insists she is perfectly fine to live alone, wants to sort through her house and things herself (doesn’t want me to touch anything, she is a hoarder). Unfortunately I have a brother that doesn’t have dementia, but has the same disconnect with reality. She is in a nursing home now and I haven’t heard her mention theses kinds of things in a while. I guess if she doesn’t see the couch she is not going to want to reupholster it. I would rather answer the same question over and over and over than to have mom think I am a horrible person for sticking her in a nursing home for no reason at all.
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I am right there with you.
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We understand…some days are ok but some days it’s so overwhelming.
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It truly is overwhelming and frustrating.
I was aware of the meaning of Anosognosia and had been frustrated that my husband doesn’t seem to accept his diagnosis but I never put the label on his behaviors. After reading these posts it’s clear that this is what’s happening with my husband. He doesn’t seem aware of his limitations, hasn’t told his sisters or friends. His son knows his father has ALZ because he called me, concerned about his father’s behavior after a recent visit.
Thank you for posting, and to others for sharing your experiences and insights.
This disease sucks.4 -
Anosognosia has been a constant for my DH who doesn't understand he is in memory care, continues to want to "help others" or "do something in the world" and move back to places where he had a job and drivers license. For a few weeks he stopped yearning for this sort of meaning, and now he enjoys some of the activities in MC, but recently at a nice lunch out with me he started crying because he didn't have a job.
For him the Anosognosia is protective because it would be intolerable for him to face that he is headed toward the same fate as those he sees further along in the journey in his MC home. I understand that Anosognosia is present in about 75 or 80 percent of PWD. He generally doesn't talk about his grief over not being relevant in the world except to me.
My grief is because he has forgotten all the wonderful things he did when he was working and all the people he helped. It seems so unfair that the wanting to be employed again is accompanied by the loss of memories of what he was who he was and what he did.
I am so glad we are able to share our grief and loneliness here. Thank you all.
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my husband called talking with the other veterans in the VA memory care facility “work”. It made him feel useful.
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If your loved one demonstrates Anosognosia and is not distressed because they think others know their diagnosis and think they are "crazy" then make the most of that time and pray they never shift into the distressed state. We lots almost three years because of this behavior.
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In my situation, I generally feel DW's anosognosia has been more of a blessing than a curse. If DW woke up every day and shared my understanding of what is wrong with her and where this is heading….. that just feels like something that would make this so much harder.
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I think I am dealing with this now too. DH has been diagnosed with Primary Progressive Aphasia semantic variant. He is 62. Still working and still driving. He does not recognize he his short comings. Every time I try to discuss the end of driving or work or that he should ask for my help with some things, he gets upset and says I am telling him he is an idiot. I have never said that or anything close to calling him an idiot. I feel like we have gotten to the point where life needs to change but he doesn’t see it. He gets so upset when I bring it up. It feels very lonely. Instead of this disease impacting us together it’s like I am doing this to him
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My DH and I have been married for 56 years. We have been the love of our lives all that time, 4 kids and 12 grandkids later. He was diagnosed with dementia 15 yrs ago and has never had a grasp of his illness or what was coming. I had researched and recognized each stage but he was clueless. Now he is stage 6 of his dementia and in a memory care facility that we cannot afford. He has aphasia so can no longer communicate or follow simple direction. It's clear that his physical self remains but it's all I have since the essence of the amazing person, loving husband and best friend, baseball/football coach, dad, papa, friend, he has always been is gone. Most painful experience of my life. I'm sorry that so many of you can relate.. God bless you all.
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my situation is almost identical to yours my dh and I are together 56 years we have 5 children ,2 grandchildren,and 5 great grand children. He is also stage 6 but still at home. I am his primary caretaker 24/7 . Luckily he lasted 7 years until his altzheimers progressed rapidly this year. His doctor has been extremely helpful in prescribing him meds to deal with these changes. Anxiety medicine, medicine to stop his anger and frustration. Medicine to help him sleep at night . It has been a lot more manageable since the meds. I know how you feel it is so heartbreaking to see him like this and not the person he was. He doesn’t remember us our life experiences our family we have to learn we are on our own now. But most important is to keep reminding ourselves it’s much worse for him. Not remembering anything.
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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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