Problems with my cognition during a phone call with my daughter

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

Tonight, I was talking to my thirty-five-year-old daughter on the phone. I had to stop working in June 2015, due to a very bad fall that I had at my job on April 30, 2014. I have been on disability since Jan. 2016. I have daily pain due to the fall.

I was telling her that I don't think that I can afford to live in my apartment anymore because I'm using too much of my savings each month to supplement my income and the money is going to run out! As we were continuing the discussion, she said “how about going back to work?” I told her that is difficult to do because of the severe knee problems. She said that perhaps I could just get a part-time job that just required sitting, since standing or walking bothers my knee. I told her that I didn't know what I would be qualified to do. I reminded her that I had worked at school for twenty-one years as a paraprofessional but that was a full-time job. I also worked as a cashier at a retail store for about six and a half years and being a cashier requires standing. I said that she might not understand this but it is very difficult for me to learn something new and that is because of the memory impairment.

She also wanted to know why I couldn't be on disability due to the memory impairment and not the fall. She thought that maybe I could get more money. I told her that when social security made the decision to approve me for disability that it was based on medical records from my primary care doctor, orthopedic surgeon and my neurologist. I told her that disability is disability and it doesn't really matter what reason they approved it.

I also told her that recently I got information from social security and they are changing me from Medicaid to Medicare in a few months. I said that social security sent me a large booklet that means nothing to me! I told her that about eight years ago I had to stop reading books. She wanted to know why I couldn't read this booklet. I explained to my daughter that I can't remember from one page to the next and sometimes from one paragraph to the next. She said perhaps my diagnosis was incorrect because of the fact that I can no longer read anything of any length. My daughter said that it sounds more severe to her than my diagnosis of mild cognitive impairment. I told her that in 2005 when I was first diagnosed with Early Onset Alzheimer's Disease (EOAD), then a few months later my diagnosis was changed to mild cognitive impairment, for many years I wondered which diagnosis was correct. I explained that in 2014, after a 3rd neurologist sent me for about five hours of neuropsychological evaluation. It confirmed the MCI diagnosis. So right now, I am pretty confident that the MCI diagnosis is the correct one for me.

I said that I hadn't seen her in a while and that I would like to see her. She said, “mom, we talked about this the last time we talked on the phone and I told you to call me and we would meet.” I told her that I forgot the details of the last conversation that we had. I told her to let me know what day and time works for her because I'm not working. For some reason, I got quiet and she asked me what was wrong. I told her that I didn't understand what she was saying and she said “mom, just ask me and I'll help you understand.” I told her that this was one of those times that I didn't know how to explain what the problem was. She said that since she works M-F and has weekends off, the weekend would work for her. I said that Sunday would work for me. I told her to call me and let me know what would work for her. She said, “mom, how about this Sunday?” and I said " that would be fine." She said that we could meet for breakfast and I told her to pick a time and I confirmed where we should meet. I repeated the time that she gave me. I told her that I needed to write it down so that I wouldn't forget.

I continue to try to educate my children on what it is like for me to live with a memory impairment. I don't think that it is usually a “planned” conversation, but something that happens due to some problems with my cognition such as tonight's phone call. I'm not sure when or if my three children, thirty-five-year-old daughter and sons thirty and twenty-seven will ever really “get it”.