Thursday, March 17, 2016

She is here, but she is not

            Last week Nancy Reagan died and we were all reminded of many things from a better time, including class and style and a great love affair that went between two beings. We were also reminded of a dreaded disease and a love a devoted partner, a caregiver who stayed with him through what was described as “the long, long goodbye.”

            The Reagans left a place in my heart through my life for many reasons. I won’t go into a lot of detail here, other than to say that they came along at the right time with the right personality for our country. The President had an incredible ability to communicate with the American people, to break things down on a simple scale and to pull people together, both the public and a divided Congress to get things done. We have not seen a communicator since.

            He still resonates with me today and now Nancy, because of my own mother. Mom, as my sister and I noticed over a period of years, was “losing it”, was just not the same. She would talk to herself an extreme amount, forget things at too early an age, lose things, and become an unpredictable driver.

            Both of my sisters live in Florida and my parents live in Missouri, so my wife and I would be the ones who tended to see them the most. Over the years, my sisters and I would talk, but the nasty word, ‘Alzheimer’s’ would never come up.

            Time passed and our retired Air Force Lt. Col father started paying for cruises for all of us as a way to have family vacations. As I look back now, I think he knew something was wrong with mom and feared mortality for both. He also raised us very strict and I wonder now if those cruises were some sort of payback.

            By December of 2012, mom had slipped severely. We all gathered in Tampa, Florida, at the home of Patti, the oldest of my sisters, and a nurse, with a Masters in Nursing and an MBA. Pam, my youngest sister and her family came over from Orlando. At the time she was a store manager for Old Navy, running one of the highest volume stores in town. We all boarded a ship out of Tampa for a 5-day cruise.

            My father had been in denial that mom had probable Alzheimer’s. It was always that she was just not remembering as well and it was temporary. It was so much worse. She had forgotten my name as well as my sisters from time to time. She recognized me, but could not say my name. Her food selection became very picky, going to very sweet things only. She was always very pleasant, but she would repeat things over and over because she would forget she had just told you something only minutes before.

            And then there was, as I was reminded last week by an article my sister posted on Facebook back in Nancy Reagan’s time, the eyes. Way back, 60 Minutes did an interview with Patty Davis, their daughter, and she talked about the President’s eyes. “In the early stages of Alzheimer’s, the eyes had a weariness, a veil of fear. I used to see my father’s eyes simultaneously plead and hold firm. Slowly, sometimes over months, sometimes over years, the eyes stop pleading…A resignation, an acceptance of distance, strangeness, a life far from home. You know the look when you see it. And the only mercy is that the fear seems to have subsided.”

            Those words are so true. We saw it, I saw it in my mother’s eyes. First fear of what was happening to her, then as the disease progressed, resolution as a nothingness swept through her. On that cruise in December of 2012, my father took her to a restroom on the top deck. The rest of us were in the process of gathering there. When we reached the tables, my father was sitting there and my mother was not. “Where’s Mom?”

            “I took her to the restroom over there.”

            Everyone looked at each other with fear in their eyes. Patti took off for the restroom, with my sister Pam quickly behind her. A minute later they were back. “She’s not there.” My father was dumbfounded.

            Long story short, we had him stay in case she made her way back there and the rest of us, including grandchildren, all got on elevators and took specific decks and went looking for her, agreeing to meet no matter what in 20 minutes. I was the one who found her on deck five, within twenty feet of the elevators, in a mass of people. She was just standing there, looking around, but it was the look on her face I will never forget. Her eyes. Pure fear and panic. I walked up and hugged her and then took her arm and led her back up to everyone.

            That was the night I lost my mother. That was the night I grieved for my mother. It is how I am coping with the horrible disease. It may sound terrible to some of you, but it is how I deal with it. I lost her that night and it takes her more and more each and every day, but for me, I can’t lose any more of her than I did that night.

            She is now 82 and my dad is 83. He takes care of her. He gets help to come in to their home, but too much still comes down on him. Apparently a long time ago they both made a pact about not going in a nursing home and he is holding firm on it, no matter what his kids say.

            I have not heard my name said from her lips in almost three years. There are times now when I think she knows me and when I don’t think she does. It has now gotten to where she has called my dad by someone else’s name for the first time. He still thinks she will get better. There is a test now see if I can get this horrible thing. Should I get tested? Would you? It can be passed down to me or my sisters.

            She can go on for a long time like this. She is not dead, but I lost her in December of 2012 on a ship. I see her often, but she is not there. She looks at me, but sees through me. The eyes are there, but they are empty. She is there, but she is not.  

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