Mother’s Day this year was as unpredictable as any other day and quite different from the scenario at Easter. Mom’s moods vary with this disease from day-to-day. Therefore, what works for me to navigate around one day, or even one minute, doesn’t work another, not even a variation of the same situation. Because of this, I usually end up punting because I never seem to quite make 10 yards without fumbling.
Easter Sunday, she was compromised. Anxious. Fortunately, Mom was in a better place mentally on Mother’s Day. Even though we discussed Mother’s Day plans all week, she still woke-up unaware what day it was. When I called to let her know I was on my way to pick her up, I caught her just as she was heading down for breakfast. She already had forgotten that our plan was to have breakfast together at my house.
When I got her to my home, she settled in quickly enough. I immediately handed her a cup of coffee and the newspaper, always our regular routine as soon as she gets to my home or the cabin. She sat by the fire with the dogs and started working on her crossword puzzle. As always, I asked her to call out questions, so we could do the puzzle together while I fixed our breakfast.
Sadly, I noticed a new decline. She labored over the same three questions multiple times, even after we had answered them. I tried to re-direct her. “What is 10 down?”, or “What is 36 across?” but she kept returning to the same three questions.
I put breakfast on the table soon thereafter and noticed another decline, this one in her ability to converse. It is normal for her to repeat the same things over and over, but this time it felt much more stilted and clumsy. She would still comment, or answer, my questions, but efforts to keep a flowing conversation going was much more difficult. Consequently, there was a lot of silence during our meal. However, it didn’t seem to bother Mom, so I didn’t let it bother me.
After she napped, unlike Easter, she woke-up knowing where she was and wasn’t anxious or confused. We sat out on the backyard deck in the peaceful quiet. At one point, she piped up and said, “It is absolutely gorgeous here. So peaceful. We. Are. So. Damn. LUCKY!” It was a lovely moment and a memory I will never forget.
📷By now I know Mom’s limit when I take her outside her comfort zone; i.e. her regular routine and surroundings. Rather than give her a choice, I simply told her I had work to do and needed to take her back home. She was perfectly fine with doing just that.
When I drove up the long driveway to her residence, she said, “I don’t recognize this at all. It’s very pretty, but I have absolutely no idea where we are or what we are doing!” She wasn’t upset, it was just a statement of fact. Other times she has said the same thing, but she would be extremely agitated, almost to the point of tears, because nothing looked familiar to her.
As I approached the front door this time, however, her recognition clicked in. She carried the balloons I had given her for Mother’s Day as I walked her to her apartment. I made sure I placed them in a strategic place, so she could see them every day. I wrote all over one of the balloons, “Love you Grandma, thank you for a great day! Frank, Chrissy and Marco.” “Happy Mother’s Day!” drawing hearts and paw prints too. She walked me back out to my car, and we hugged goodbye. “I am so lucky to have you,” she said. “Love you bunches!” “I love you too, Mom, and I’m just as lucky,” I replied, and I meant it with every beat of my heart!
As I pulled away, she remained at the front door and waved. I watched as she pushed the automatic door button with her cane and walked inside.
I was blessed with a Mother’s Day where she was in good spirits, and I believe because of that, the balloons in her room will represent good feelings for her in the days to come, even though I’m confident all is forgotten.
What Is True for Me: It is kind of ridiculous to label my celebratory times with Mom as good or bad. “Good or bad” doesn’t exist at this point, our time is what it is. It is our new norm.
It doesn’t mean I don’t fall apart on the drive home. I do. It doesn’t mean I don’t crawl into bed and sleep off the grief. I do. And it doesn’t mean the grief doesn’t linger for a week or so. It does. All of it is emotionally hard. My wishing or hoping for less pain, less grief, a different set of circumstances, or for Mom to be in a better, more compliant mood, is not how life works, much less how caregiving works.
One of my favorite lines is from the movie Tombstone (Kurt Russell, Charlton Heston, Billy Bob Thornton, Sam Elliot, Val Kilmer and Bill Paxton). The scene is between Wyatt Earp and Doc Holliday. Wyatt’s belief is he will lose an upcoming pistol duel with Johnny Ringo.
“I can’t beat him can I Doc. The damnable thing is, I know what I want and who I want to spend it with. I just want a normal life.”
“There is no normal life, Wyatt, …there’s just life.”
Well said, Doc.
I recall this wisdom when I’m aware I’m anxious about an upcoming holiday, or celebration, that goes beyond my usual daily visits or phone calls. These times require a bit of planning and implementation, not that my efforts will be rewarded, but the gearing up and the aftermath are more difficult to handle than a drop-by visit. There is a lot to think about to maintain Mom staying calm, safe and happy, and much of it depends on her mood that day.
But when I remember there is no “normal life,” there’s just life, pieces fall into place and I’m centered better. It doesn’t take away the problematic logistics, or the grief, or the angst, but it does settle it into a place of acceptance.