Dad's Back

Finding good advice is challenging most times. When in the midst of caregiving, it is downright difficult. Everyone around you has opinions and stories, sometimes their own but often belonging to someone else, that are expected to somehow be helpful. I suspect many stories are shared as a way to mask the embarrassment of not knowing what to say. How do you respond to a friend who shares that they now change diapers on a parent now?

If you are involved in caring for an elderly loved one, the first thing you likely noticed is surprise. Surprise at assuming a new role (parenting a parent). Surprise at the reaction of others. Surprise at just finding yourself in the position in the first place.

Where to from here?

When I first started taking care of Dad, there was not a lot of resources for caregivers. Dementia had been around as a diagnosis for a long time but little attention had been paid to people who cared for these patients at home. Thankfully that has changed a lot these days.

My first thought was to pull out the phone book (remember those?) and see what government agencies might offer. I had once worked for Social Services, so I knew there were services for the aging. I found the local county office and stopped in. I had the great good fortune to sit with the head of the local agency, a wonderful and intelligent woman who expressed her frustration with the lack of resources for folks like me.

This wonderful woman then offered to sell me a copy of a small book that she thought might help. Though skeptical I made the purchase and that book changed my whole caregiving experience.

The book is “The 36 Hour Day”, by Nancy L. Mace, M.A. and Peter V. Rabins, M.D. If ever there was a handbook for being a caregiver, this is it. Aptly titled, the book clues you in to what is going on with both you and your loved one.

The biggest takeaway I gained from this reading, besides the obvious practical knowledge of caring for a relative with dementia, was that I truly was not alone. What I was feeling and experiencing was real and the thoughts I had were valid. I wasn’t being soothed by dubious stories from well intentioned friends. I was corroborated in what I was doing.

It doesn’t get much better than this as a caregiver.

If you don’t have any fellow caregivers in your circle of friends, though you will eventually, this book can help you in your journey. (And yes, this is just my personal account about this publication. I have no connection with the authors or Johns Hopkins.) I sincerely hope this and any other resource ideas I share are found to be helpful to you in your journey. We truly are in this together.

You may not remember the time you let me go first.
Or the time you dropped back to tell me it wasn’t that far to go.
Or the time you waited at the crossroads for me to catch up.
You may not remember any of those, but I do and this is what I have to say to you:
Today, no matter what it takes,
we ride home together.
― Brian Andreas