"When I look back, I recall countless hours spent perusing catalogs and stores trying to find the right gift for my mother. I also recall, as the disease progressed, watching her happily unwrapping her gifts but not understanding they were for her or what they were. What she did understand were the moments we spent together on the couch, holding hands, talking and giggling. She understood when my dad put on music and danced with her. And even if she didn't understand a joke, she understood the laughter and love that filled her home. She understood, probably better than I, that it wasn't about the stuff ~ it was about the people." – Patti Kerr, author
Recently, my friend Trevania Henderson of CaringWise posted this epigram on the CaringWise Facebook wall. It's a powerful reminder of the divergence that can occur between what we, as caregivers, value versus what our carees value as they progress through dementia or Alzheimer's disease.
As I read Patti's meditation, I was struck not only by the profundity of it but by its truthfulness, and I was inspired to tell my own story about the power of presence over presents.
My mother-in-law didn't suffer from dementia, but she did have heart disease and, ultimately, cancer. As she aged and became less able to take care of herself, I frequently assisted her. I loved my mother-in-law very much, and as her health declined I found myself, like Patti, perusing catalogs and haunting department stores looking for gifts: extravagant gifts for a woman who'd never indulged herself much. Things like luxurious bathrobes and expensive colognes. Things she would never have bought for herself. She accepted these things graciously, and I believed they made her happy.
After she died, as I was helping sort through her personal effects, I found what looked like individual diary pages scattered in various locations. Apparently, my mother-in-law jotted down journal entries on scraps of notebook paper whenever the mood struck and stuffed them in the backs of drawers around the house. While I no longer have any of these, I recall being struck by the simplicity of one I discovered that said something like, "Beth came by today and cooked buttered noodles for me. It was nice to have the company."
Really? Buttered noodles and company? Nothing about the warm velour bathrobe from Dillard's that cost a small fortune?
I learned a huge lesson that day – a lesson I put into action when I took care of Dad: It's all about the presence, not the presents.
As Dad's dementia ran with rampant abandon toward its end line in 2010, I made every effort to spend time with him, doing whatever he felt like doing. While Dad dozed in the chair next to me, I'd watch hours of baseball games I didn't care about, just so I'd be there when he awoke. Lee made Dad a large wooden step to help him get out the backdoor with his walker, and we spent afternoons together in the backyard, doing nothing more important than chatting and chopping up dead hollyhock stems for the compost pile.
Although he never expressed it, I know Dad enjoyed this time together far more than any store-bought gift I could have given him.
So, this holiday season, remember: It's not the presents, it's your presence, that makes a difference in the life of your loved one with dementia. Cherish the moments because all too soon, they'll be gone forever.
My Aunt died from complcations of Alzhemers.She was asweet lady of 96. i willalways remember the lemon cake that she made from scratch.One day i visited her and she could not remember my name and called me her friend.She was so dear to my heart.
thank you for all your ideas! Buttered noodles and ice cream and music----what simple pleasures. I look forward to more idea.
What wonderful ideas. I need to think up more ways to do make special times like these. . . the buttered noodles. . . who would have thought. And yet, what would i want from my own adult kids, even now, without having an illness? Thank you all for sharing!
Thanks for posting this. It's so true that especially at this time of the year when the stress level is high for everyone, remember to slow down. It's about spending the time together and not spending the money. That being said, the Visiting Nurse Service of New York has a sweet article about preserving the memories that we make especially during the holidays. Great read at http://bit.ly/sakRxK
Beautiful, thanks for sharing. Especially at holiday time when the stress levels are high, it's important for everyone to remember that the best part of the holidays is spending time together and making memories, not buying the stuff.
What a wonderful story, Patty! Thanks for sharing. My dad also loved ice cream. What a coincidence! In my case, I had to make sure we always had hot fudge topping stocked. In fact, when cleaning out the pantry a few months ago, I found a jar of it tucked away in the back. Even though Dad's been gone for 18 months, his presence lives on.
As I read this story I was brought back to the memories we made with my dad. He suffered from Parkinsons/Dementia for the last several years but the last few months he went downhill very fast. My Dad loved ice cream and was always asking if we had plenty. After stopping at the store one night and purchasing about 25 different varieties and flavors we unloaded them all onto his lap while he sat in the wheelchair. You can imagine the surprise and smile he had and yes we have pictures!!! We did a lot of role playing and pretending to get him through whatever brain disconnection he was going through at that time. At the end of each day he and I would do the hokey pokey, even when he was confined to his bed and the night before he passed away. We also have pictures and movies of that along with the laughing of the family in the background. My Dad loved music so when he would get angry or agitated my sister would come over and play the piano so he could sing. Soon he was just booming those songs, mostly hymns and patriotic and more memories were made. Thank you for the confirmation that our solution to an unfortunate situation was good. We would not change anything we did and would encourage others in this kind of situation to make lemonade when given lemons.