Long Distance Caregiving – A visit home

A little bit of your heart breaks when you witness yet another milestone in your parent’s decline with Alzheimer’s disease. Such was the loss for me when I traveled to visit my mom in January earlier this year. Mom had a mild stroke in early January and spent a week in the hospital. The neurologist said she would breeze through this one as she had no lasting visible affects. It was time for me to visit though, knowing ay 89 her next stroke may rob her of much more or that the progression of the disease would move more quickly. Spending time with her and giving my sister as her primary caregiver a bit of a break was important and more pressing now even though I don’t like Buffalo in the winter. 

I arrived late at night so didn’t see Mom until morning. Her routine is to get dressed before she goes downstairs as the stairs are a challenge so once a day is enough. She constantly asked, “What am I supposed to be doing?” Her disorientation of purpose was obvious. She’s always been a “doer” and never wasted a minute. She always had a needle and thread or was crocheting or reading a good book. Now the sewing machine sits idle when there was barely a day she didn’t use it when my seven siblings and I were growing up. It was easy to give her something to do though, help me fold the laundry, or peel the apples for a pie (I made 6 while I was there), or let’s play solitaire. She could help pin a pattern for some doll clothes to be cut out for the great grandchildren and even cut a few out all the while just listening to me chatter to engage her in the conversation. She no longer does the puzzles in the daily paper, too difficult she says. So instead I did them but asked her for help with answers I knew she could provide.

I treasured the week I spent with her. My sister was able to run errands and visit with her grandchildren. I was able to install a new handrail to help mom steady herself on the stairs, hang new drapery hardware to replace the broken rod, and any other task my sister needed help with. We were able to get to Mass, Mom’s first since the stroke. I was so happy she could sit with the choir and sing with them. I could hear her voice among the others and it brought me such comfort. She used to sing to us as she rocked us to sleep and then with the grandchildren. Her voice will always be in my head. 

The milestone of decline that weighed heavy on my heart was that in the 7 days I was there Mom could not call me by name. She knew I was a daughter, one of six, she knew I belonged, yet there was this…absence. I longed for the sound of my name yet never heard it. Although not hearing was an obvious omission to me what really mattered was we spent 7 wonderful days together. I helped her get dressed, I played her favorite music, and I showed her pictures of a recent trip to Ireland. We laughed an reminisced looking at over 1200 old pictures I had converted from slides to digital photos. Pictures she hadn’t seen in over 26 years. Pictures of her holding her babies, all 8 of us, and it was there she knew all the names of the children. It was a time I will always treasure.


-Barbara Auten, Executive Director