Saturday, May 16, 2015

The Beginning

It began about six years ago. My mother would call me on the phone and say "What time are we supposed to come over tomorrow?" I'd say "3:00." We would hang up the phone and a half hour later she would call me back and say "What time are we supposed to come over tomorrow?"

I started talking to her about getting checked out by a doctor. She'd say, "What for?" I tried to to gently explain to her that she was starting to forget things. It's a difficult thing to tell your parent that their memory is failing. I wonder if it would have been easier to tell her she had a physical disease. She would tell me that she was no worse than her husband and if she really wanted to remember something all she had to do was write it down.

She said "Why do I care if I have a disease that makes me forget? If I do, I won't remember, so I won't know it, and it won't matter anyway." And she laughed it off like it wouldn't matter. I think this was her way of protecting herself and not letting me know that she really was afraid. How could she not be afraid of forgetting where she lives, and who she is, and who her family is? She had no idea when she joked about it of the pain and stress it could cause her in her near future. None of us did.

She went in for cognitive testing and we were told she had "Mild Cognitive Impairment." That didn't sound too bad. Sounded like a part of normal aging. No one told us this could be the first sign of Alzheimer's Disease.

I remember being in the doctor's office with her one day, and he handed me an Alzheimer's pamphlet and told me to make sure I was spending at least 40 minutes a day walking because it was an important step in fighting Alzheimer's Disease that it tends to run in families.

What?? I thought she had Mild Cognitive Impairment. She has Alzheimer's Disease?

She began all the normal Alzheimer's drug treatments and she was allergic to all of them except Namenda, which she is still taking, plus a couple  of other meds to stabilize her mood and calm her down. Medication is such a huge issue because everyone reacts differently and she seems to react opposite of what the Non-Alzheimer's patient does to medication. Meds that should calm her down rev her up. I read somewhere "if you have seen one Alzheimer's patient, you've seen one Alzheimer's patient." They are all different.

I decided to start a blog about my mom and our journey together in hopes that someone in the group of 15 million unpaid caregivers of Alzheimer's patients in in the US could relate to the struggles my mom and I are going through.

In wondering where to begin, I thought to tell our story from "the beginning" would be a good start.

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