Misleading, Mother's Day and the Roller Coaster

My dad sent me this picture of my mom on Saturday. She looks really good--alert, smiling at the camera, good color and nice hair. Her eyes are bright. I was beginning to think maybe my concern for her and fear of her impending death were exaggerated or premature. The Memory Care Unit where she lives had a Mother's Day Tea, and my parents participated. It is hard to see her wheel chair in this picture. You have too look for it to notice it. My dad posted this picture on Facebook and many of his friends make nice comments about what great picture this is.

"She does not look imminent," Jack said. Imminent is a medical code word for about to die. Jack is an intensive care pediatrician, and he has seen numerous children and teenagers die. "It is really hard to die," Jack has told me before. He knows death can be a slow process. While I agree that my mother looks good, I fear my husband's sense of imminence might not apply to the geriatric crowd.

I asked my dad if I could Skype for Facetime with them on Mother's Day. He did, and he called me to Facetime while they were eating lunch in Ohio. I was already at the YMCA doing my morning physical therapy workout. I took a break from the weights to talk to her on my iPhone.

She didn't notice I was there. I said "Happy Mother's Day!" a few times, but I wasn't sure she heard me or understood I was there.

"She might be a bit flummoxed by the phone," my dad said. It was as if I were trying to connect with my dog Fox over Skype. Fox doesn't get it that someone is on the other side of the screen. Talking and looking at someone while on a phone or computer was not new fangled technology for my mom. We have been Skyping with her and the kids for years, before she was diagnosed with Alzheimer's. Videochats are a great way for grandparents to keep in touch with grandkid who live far away. My kids were far more talkative on Skype than when you hand them a phone and expect them to talk to their grandparents. Artwork, leg projects, new toys and Fox were often shared via video chat.

While my mother might have been flummoxed by the phone, she was surprisingly out of it. Later that afternoon, I called my dad.

"That picture you posted of Ma is great!" I said.

"That picture is misleading," he said. I imagined my dad taking a dozen or more pictures to get one where she is looking at the camera and smiling at the same time.

Later, my father talked to Jack about my mother. My father tends to be more open and direct with Jack during difficult situations. My dad tends to be slightly evasive with me when he is in stressful situations.

"I was really worried about her earlier this week," my father told Jack. "I am not ready to lose her yet." I imagined my dad talking lots of pictures of her, never knowing which one might be the last.*

A friend of mine's father-in-law died of Alzheimer's. She said he had a day or two of clarity several days before he died. I am not sure if that will happen here, but I am preparing myself for that possibility. At the same time, I remember when my grandmother was ill. The doctors released her from the ICU while she was still in bad shape. I feared they were letting her out so she could die in a more peaceful environment in the next few days. I was wrong. She ended up going home and she lived for a few more months.

This is the challenge of the roller coaster at the end stage of a disease. Anything can happen. She could have a stroke in the middle of the night and die, or she could stabilize and live for another six months. I know she will eventually die, but when and what it looks like remains the mystery.

* That was a bit maudlin. Sorry.