November is National Family Caregivers month. I love that the honorific falls within a month that is associated with so much thanks.
When I look back on the time I was Millie’s caregiver I am filled with gratitude. I am so thankful I was able to have the time to be with and love her. I am thankful I learned how care for another person in the unique and special way caregivers do. I am thankful to have had such a special and wonderful bond with my grandmother. I am thankful for all of the life lessons caregiving taught me.
Seven years ago I wrote a little bit about what it was like to prepare for Thanksgiving when you have the added pressure of being an Alzheimer’s family. We were gearing up to have a “very Alzheimer’s Thanksgiving” and I was so relieved to be joining neighbors who were also caregivers.
In addition to talking to my neighbors about who would be making what dish we also had our “just so you know” prep talk. Caregivers have such talks down to an art form and, looking back, I marvel over how many situations I navigated by starting with a quiet, “just so you know…”
In discussing our Thanksgiving it was, “Just so you know Millie might refuse to eat.” or “Just so you know Millie might ignore your Father.” or “Just so you know Millie might refuse ever to come.” or “Just so you know Millie might not say a word to you.”
Usually I would unload my “just so you knows” and that would be that, but for this Thanksgiving it was refreshing to then receive in turn another family’s list of quirks that might or might not happen. I didn’t bat an eye; it was now in the scope of OUR normal behavior.
I was so excited about going to another house for the holiday, even if it was simply down the street.
I was also not exactly surprised when something happened and we had to cancel our plans. You see that’s also part of having an Alzheimer’s Thanksgiving or Alzheimer’s holiday. You can make plans, you can prep and prepare, but at the end of the day you should be prepared for nothing to be as you expected or normal.
A few days before the much anticipated Thanksgiving my grandmother had a mental break. Suddenly her already very fragile sense of reality lost its footing and nothing made sense to her. Nothing. It was terrifying for all of us and not anything we had experienced with her before.
Usually I was able to calm Millie down if she became upset, but this was different and I was out of my depth. My grandmother had no idea who she was, who I was, what the world was… and nothing I said was comforting her. I grabbed my phone and called my mom at work. Being a caregiver is never a solo performance. Never. I needed help, my grandmother needed help.
My mom didn’t need to hear anything beyond, “come home” and she was on her way. When mom arrived she sweetly guided her mother into her room and sat down with her. Over the monitor I heard my grandmother say she didn’t know who she was and then I heard my mom begin at the beginning. The very beginning.
It must have been hours, but it was one of the most beautiful moments to have witnessed: my mom told my grandmother her entire life story and with her familiar and comforting narrative she pulled my grandmother back to us. This is one of the many reasons why it is so important to know the history of your loved ones. To know the story of their birth, the stories from school and university, how they met their husband and what the wedding ceremony was like. All of this knowledge is a crucial part of caregiving.
As far as the week, it needed to stop being a holiday for my grandmother. It needed just to be a day, a day with no surprises.
Sometimes an Alzheimer’s Thanksgiving is simply a Thursday and maybe you have some turkey.
In a “normal” family you might be embarrassed to cancel the day before Thanksgiving. Somehow social norms don’t carry the same heavy weight within an Alzheimer’s family. While it was sad to make the call that we would not be able to make it, we knew the necessity was understood. Thanksgiving day my neighbors called to let me know they had dropped something off. These kind and empathetic friends had sent over an entire feast for mother and me to enjoy once we had Millie settled.
That kind of looking out for each other? That’s the stuff that makes caregivers weep.
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