Each Monday (and now Tuesday and Thursday) morning when I first walk in to the house, I wonder what is ahead for us today. Mom’s mood changes so often, there’s no way to know what challenges or victories lie ahead. I pray each day for it to be a good one for Mom and Dad. I am grateful to all the people in Mom’s village – all who care for Mom – and pray that each of us will stay healthy and strong so we can continue to care for her.
On September 21, 2015, I started writing these articles for NowHabersham.com at the encouragement of Joy Purcell. Joy and I have known each other since middle school and, although we haven’t kept in touch through all the years, our paths are similar and intersect in different ways. Like so many of us, Joy knows the struggles of caring for a loved one with dementia. I had long joked about writing a book called “Mondays with Mom,” a spin on the title of Mitch Album’s Tuesday with Morrie. Joy insisted the time to write was now while I still had Mom here. I am so glad she did.
Mom has changed so much in the last year. When raising a child, a parent considers the many milestones a child achieves: first smile, first giggle, first word, first step, etc. With dementia, the milestones are in reverse. It’s hard to realize that this may be the last day, and it’s very often only in retrospect we know that was the last. I look at the picture that’s at the heading of this article and long for the last day we walked down the driveway together because we can’t do that now. I am hopeful we might get that chance again once her arm heals, but in the meantime, she is not walking without the gait belt supporting her every step. In addition, Mom’s moods swing wide every day, and she’s every bit a toddler in her mindset. Once she’s made up her mind, there’s no changing it. When she gets mad, she stays mad. On the other hand, she can be a sheer joy, too.
A few weeks ago, we had the opportunity to sign up for hospice. I had the misconception that it was available for only the last days of one’s life. While that is an important part of their organization, it is not all they do. Mom met the qualifications for enrollment and now have a wonderful team assisting us in her care.
Today Michelle came to give Mom a sponge bath. What a blessing to have her responsible for it. She’ll come twice a week to take care of that important job. She’s delightful, always thanking Mom for coming to her “beauty shop.” With me, Mom can be difficult to maneuver during her bath. For Michelle, Mom is a delight.
Matthew is Mom’s primary nurse. He’s a young man with dark hair and beard. Mom is smitten and he’s crazy about her, too. It’s funny to watch. I was going to introduce him the first time he came. As soon as he rounded the corner, Mom lit up! “I’ve been waiting for you all day,” she said. He later said that was the best introduction he’d ever had.
The hospice chaplain assigned to us is Tommy. He is so patient and kind to Mom. He visits and chats with her like they have been friends forever. Even though he has a huge territory and a number of people to visit, he relaxes and talks as if he has all day to spend with us. The best part was when he kneels next to Mom, takes her hand, reads her Scripture, and prays with her and for her.
Parents often hear “it takes a village to raise a child.” It’s true for parents and for caregivers. One simply cannot do either job alone. I am grateful for the village that is surrounding us. For our friends and family and caregivers and hospice workers and doctors, please accept my thanks.
