April 14, 2021 by Judith Allen Shone
The more I read about other caregivers’ lives, the more I realize I have had a unique caregiver experience. My Loved one has anosognosia associated with his Alzheimer’s disease, sometimes requiring different methods of caring or altered strategies as a result. It took me a couple of years to realize there were others with memory loss who were not living the same experiences as My Love, and many caregivers were telling different stories than I was.
In the beginning, I observed how some loved ones were able to speak about their memory loss, recognize it, and tell me about how it felt.
“I hate that I can’t remember so many things about my life anymore,” one friend who had been diagnosed with Alzheimer’s disease reflected, “I am sad. I am so glad I have my wife to remember for me because my mind doesn’t help me so much these days. I have dementia.”
My friend knew his life was changing. He was aware of his illness. At times he even asked me, “You know I have Alzheimer’s, don’t you?” My friend usually recognized that he should know me but didn’t recall my name. His self-awareness seemed intact.
But My Love’s behaviours seemed different. He never seemed to know anything was wrong. He never told me he was having trouble remembering because he never recognized he was not remembering. He couldn’t explain something he didn’t realize was happening.
This unawareness happens because my love has anosognosia, a condition where, because of cognitive impairment, he cannot be conscious of his illness. Anosognosia can relate to any disease. The National Alliance of Mental Health translates the Greek word anosognosia as “to not know a disease.”
At first, it was difficult for me to relate to those who understood because that was not the disease I was witnessing. My Love has shown no self-awareness of his illnesses in comparison to those who understood.
Because he never seemed to know, I wondered if he had been unaware of his forgetfulness long before the day of diagnosis. He does not know. Changing functional behaviors could have been transitional from the onset long before I knew him. These days, when he tells me he cannot recall something, he does not recognize a memory as ‘missing’ or that his memory loss is illness related. It all seems normal to him.
Initially, I did not know of anosognosia. But as his disease progressed I began to learn. I realized My Love’s understanding of his condition had not fluctuated much since diagnosis of vascular dementia, Alzheimer’s, COPD, and anxiety.
He knows nothing about symptoms of his illnesses nor that these symptoms represent a disease that needs treatment. And, of course, being unaware of ‘missing’ memories means he does not understand the social implications. My Love is not denying that he is ill nor being stubborn. He is not guarding himself against knowing. His lack of awareness is not a defense mechanism shielding him from something happening in his life. Instead, as part of his Alzheimer’s disease, he has a compromised ability to realize or understand there is anything wrong with him or his thinking.
In our day-to-day life, I do not dwell on his memory loss. My focus is on the positive, forward-looking way I respond to his behaviors, actions that can make our life better. Rather than telling My Love that he has forgotten a scheduled behavior such as a shower or meal, together, we create new routines that help me help him accomplish the tasks at hand. Even though I might direct the conversations, I make him part of the solution by including him in those related discussions. Having him part of the process, even at this stage, means keeping positive vibes in the air to prevent unwanted disagreements and stress, thus achieving the goals.
When My Love speaks, I listen. I hear his reality. I repeat what he says in different words to let him hear my understanding. There can be no judgement because I don’t live inside his world; I just go there with him and try to understand. If he tells me he sees people, I ask him to tell me more. If he tells me he already had dinner, I ask him to tell me about it. It makes no sense for me to argue or explain because he won’t understand.
I can guide conversations without disrespecting his world. My job is to make him feel understood, comfortable, unafraid, and safe. I must focus on diverting difficulties and confusion and never forget he has anosognosia. I have to remember he is not telling me made-up stories or being stubborn on issues—he is relaying his world as he lives it, sees it, feels it and believes it.
By understanding that My Love has anosognosia, I hope to avoid misguided behaviors or a poor attitude and sidestep any undesirable compromises in his daily life and future care needs.
Note: As always, for an accurate diagnosis of your loved one or yourself, contact your health care provider or your physician for guidance.
Find further insights by reading about the topic of Anosognosia:
Awareness, Anosognosia, or Denial? (c) 2021 Judith Allen Shone
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