By Susan Seabrook
My sister-in-law called yesterday and asked a simple relevant question…what are our Thanksgiving plans? Totally normal conversation to have with a family member, being that it’s November, and it’s time to order the pies. And I completely LOST it.
I have never felt the changing of the seasons as deeply as I do this year. I took a picture while doing my mother’s tube feeding the other morning. She was resting and seemed comfortable at the moment. Behind her, through the window all I could see was the reflection of sunlight and leaves. The picture below doesn’t do it justice. The yellows, oranges, reds and greens were all apparent. I watch the leaves changing color and I want them to stay as they are. Hold onto that beauty just a bit longer. Don’t fall, not yet. If I can steal a little more time; a kind of time that is not on my side. I know my mother is dying. I feel it, I see it, it’s coming, and it makes this time of year that much harder.
In October, I bought an extra blow-up for the front yard, perhaps hoping it would fill me with a little bit more of that Halloween spirit. A season of dressing up – that I usually find so enjoyable. I made my mother a costume, for a picture I know I will need. So, this week as I take down Halloween, and put out a few turkeys around the house (I stopped myself from buying the big turkey blow up…yes, I thought about it), I make sure to pause and take it all in. Certainly not the medicine bottles, and breathing machines, and plethora of medical supplies strewn about the room, but the spirit that fills that room. My mother is quiet, and weak and frail, but her spirit still dominates.
It’s a feeling similar to that of your child’s milestones, as you try and remember not just the “firsts”, but all of the “lasts”. Last time wearing diapers, last time losing a tooth, last time mispronouncing a word. All those little things that you’ll forever treasure. I’m finding it harder and harder to remember the lasts, as they seem to pass so quickly. I haven’t heard my mother’s voice in some time. In a sense I’ve already mourned that part of her. I can’t ask her for advice. So, we find different ways to spend time together. I tell her stories of my day, funny things the kids said or did. She likes to just sit and watch a good show together and Netflix has been our savior.
Tomorrow is my father’s birthday. It’s a huge one. The big 70! I recently went to the card store to pick out a card she could give him and again completely broke down. The “Let’s grow old together” cards don’t work. The “Let’s make today special” cards don’t work. Hallmark nails most situations, but for this one, there really aren’t words. Tomorrow my father will wake up, actually he’ll be up all night with my mother. Adjusting her so she’s comfortable. Helping her get to an itch, suctioning her, administering medicine. And tomorrow, on his big day, he’ll give everything of himself, like he does every day. He’ll do exactly what makes him so special. So, I bought the blandest of cards and I’ll sign it from her because I have to. But we all know there isn’t a card in the world that can tell him how special he is. And in typical dad fashion, he’ll read her card and kiss her on the head and say, “Thanks Grammy Girl.”
So, it’s November, and its National Family Caregivers Month, and my thoughts are sort of all over the place, but it’s our truth. I’ve spent eighteen months starting to mourn someone who is still alive. I’ve tried to make as many memories as I can and swallow up all the information I can from her.
In essence, I can’t will the leaves to hold on to the tree for much longer, I know that. Soon, we will all have to let go. But for now, in the month of Thanksgiving, we just hang on. We continue to thank God for the gift of time and each other. But when the day comes and her spirit no longer fills that room, I surely will never be the same.
November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being. Download this infographic about caregiving and share on your social platforms to support a caregiver you know.
Special thanks to Susan Seabrook for sharing her very personal journey as her mother’s caregiver. To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog at als.org/blog.