Every holiday I emotionally gear up to bring Mom over to my house. As the years pass with this disease, holidays have become more and more difficult, for her and for me, and each for different reasons. Our time together has gone from 2-3 days down to 24 hours. The last overnight visit, I returned home after dropping Mom off at her apartment, curled up in her unmade bed and fell apart. Every visit I unwillingly have to let go of something more. Apparently now, it’s our overnighters because her tolerance for being away from her home expires between 4 and 6 hours.
In my last blog, Gearing Up for the Holidays, I described the symptoms Mom experiences when she is away from the safety of her little apartment. I’m sure if you read it, you will find similar symptoms with your loved one too.
Forty-five minutes into Mom’s arrival on Thanksgiving Day, she began getting anxious and restless. She decided to take a nap with the dogs. I got her settled in, closed the door and continued to fix our Thanksgiving dinner.
I put the ham in the oven, prepared the potatoes and was setting the table when the memories of our huge, fun, family celebrations came flooding back. My knees buckled. I found the closest chair at my table set for two and broke down. I allowed the grief to run its course, then wiped away the tears and got on with it.
When Mom got up from her nap, as usual, any memory prior to her sleeping was erased. The same scene and script was replayed exactly as it has so many times before. “I just don’t know what to DO with myself!!” she cried. “I feel LOST! I wake up and I don’t know where I AM. I don’t even know why I’m HERE!” She meant that metaphorically as well as truly not remembering why she was here for what holiday. “I’m MAD AT GOD!” she continued, “This just isn’t fair and it’s not fun anymore!!”
I stood in the middle of the hallway holding her while she yelled and sobbed. Then I pulled back, looked her square in the eye and gently said what I always say, “Maybe God wants you to experience being a Queen for a while, Mom. Maybe that means you not needing to know, or having to do anything anymore.” I continue, “May I remind you, Ms. Queen, you have three, not one, but three five-star hotels now; my house, your apartment and the cabin, all equipped with a maid and a fabulous cook.” I leaned in so our foreheads touched. With a straight face I said, “Would ya just take advantage of it while you can and stop being such a whiner!!”
She giggled, but it never entirely erases her pain and grief. I made us tea, and we sat and talked about this stupid disease, her dying, and how aware she is (as much as she can be) of her losses. It always surprises me when this same conversation comes to a close. She continues to play a game she hasn’t forgotten yet. “I don’t know what I’d do if I didn’t have you, Vic,” she’ll say. And my standard, theatrical response is always, “You’d be totally fu***d, Mom – totally... f****d!” We’ll look at one another then and double over laughing hysterically.
What Is True For Me: You would think less time with Mom would be easier on me, but it isn’t. I am letting go of another level of my relationship with her while watching, helplessly, this disease take more of her every day. I am grateful I still have Mom around, but the parameters of today will change as soon as tomorrow; and for Mom, today will disappear like water on a hot rock.
I am ashamed to admit I hung on too long with her ability to stay over night, or having her spend too much time away from the safety and comfort of her little apartment. I’m the one trying to re-capture and preserve the life I had with her, and my preferences are not fair to Mom.
Mom and Dad’s birthdays are next week. Dad has passed a while ago now, but to commemorate both their special days, we always celebrate with my cooking dinner, drinking champagne, then having cupcakes and tea. That isn’t going to happen this year. She will see the bouquet of flowers I always bring to her apartment with a big note and a card acknowledging their birthdays. I will leave cupcakes saying they are “leftover from our little party.”
For me, and for her, I believe this is better than letting her know the lousy truth of this disease, which is dealing with the consequences of taking her out of her familiar surroundings for a period of time to celebrate a day that she most likely will not even remember.
I know you did the best you could with your loved one Thanksgiving Day. Be patient. Be kind. Because we will most likely miss today probably as soon as tomorrow.