When even your family doesn’t understand what it is like to live with MCI

(Chapter 12 Navigating Relationships While Living with a Memory Impairment in my book)

In 2005 when I was diagnosed with MCI, my three children were fifteen, nineteen, and twenty-three. I know that at the time of my diagnosis my three children and my husband were very aware of my memory problems. Each day when my children came home from school, I would ask them about their day and if they had any homework. Unfortunately, a short time later I would ask them the same questions, not remembering that I had already asked them. They would say that they had already told me. Unfortunately, I had no recollection of the conversations. I think that after I got my first diagnosis of EOAD - Early Onset Alzheimer's disease, my husband and I sat down with our children and explained my diagnosis. I think the reaction from my children as well as my husband was that they really didn't believe this diagnosis. A few months later, a second neurologist changed it to MCI. I don't remember if we had another conversation with our children, but I do know that they know that the diagnosis has been changed. I was only forty-seven years old at the time of my diagnosis. I think that my two children who live close to me and who I do spend time with, don't really understand what it is like for me living with a memory impairment.

In thinking about this, I wonder if in some way I am to blame for this. My reason for saying this is I have never wanted to be a burden to my children and I never want to overwhelm them with too many details about the problems that I experience with MCI. I have never shared my blog, youtube channel or the poems that I have written with any of them. My daughter knows that I write about my experience of living with MCI and that I would like to publish a book.

I can't choose what I remember. I forget a lot of things and I can't prevent that from happening. All I can do is my best and people need to try their best to understand.

My children and I don't really talk about my memory impairment. I guess that it could be referred to as the “purple elephant” in the room.

I know that there have been times when my daughter has reminded me that I already told her something. I wish that I could tell her how that makes me feel and how I just wanted to cry! I don't know that I'm repeating something so it serves no purpose to remind me because a lot of times it will upset me! It would be easier for me if someone would just listen and pretend, they have never heard it before. I think that is being more respectful to me and what I'm dealing with. It is not like I can prevent this from happening because if I could I would do so. When someone reminds me of this, it makes me feel bad and I feel like I have done something wrong. This is not my fault so I shouldn't feel this way! Living with MCI is not easy and your self-esteem can really be knocked around because of it.

Sometimes I wonder why I haven't told my daughter how I feel when she does this. Because I have memory issues, I am not able to remember how many times she has done this. All I know is that it has happened at least once. I am the type of person who doesn't like conflict and I would rather have peace in my life rather than cause conflicts.