The Dementia Dance: Three Steps Forward, Two Steps Back

Each morning brings a different type of day. A good morning doesn't indicate a good day and a difficult morning does not mean a difficult day. An illness does mean some lost ground though. Sometimes it's a lot and sometimes it's a little, it just depends.

The uncertainty of it all can be exasperating and nerve wracking. I find myself wanting to find ways of communicating with Mom so that I can better understand what she is going through. She struggles so hard to get her words and for many, the patience required to wait for a complete sentence is too much to ask, especially when it comes to phone calls. I coach her though phone conversations and often must interpret for her. I don't mind it, but I know, for the person on the other end, it can be frustrating. Probably not as frustrating as it is for Mom though. She doesn't talk much because it is such a struggle to get the right words to come out.

Then there's the walking. Years ago Mom used to say she couldn't walk. At that time she would occasionally use a cane. I used to tell her that she most certainly could walk otherwise how did she make it from point A to point B? She would just smile and walk on.

Slowly though, her walking has deteriorated. Now she uses a walker and at times we must use the wheelchair. A three second jaunt from the bedroom to the kitchen now takes anywhere from ten to seventeen minutes. A while back I got the brilliant idea to time her since I had to walk with her to make sure she didn't fall. Back then, the trip took five minutes. And actually, timing her came in handy because then I could plan how much time I needed to allot for outings which invariably meant a trip to the washroom right before time to go.

Outings now are pretty much restricted to church and the annual physical. Church isn’t a weekly given anymore either. Getting in and out of the car is quite a production and heaven help us if nature calls in the middle of service.

I used to take Mom for a drive on afternoons. Saturdays were always nice because we would go for a drive and listen to “A Prairie Home Companion” on MPR and stop for a bite to eat. But that was a long time ago, or so it seems. Now, on warm, sunny days I turn her chair toward the window and we listen to it in the living room. Sometimes we munch on trail mix or slices of apple. Sometimes we are eating dinner when it comes on.

When I was a little girl, Mom taught me how to do the Cha Cha. She talked about dancing the Jitterbug and the Charleston when she was young and I remember my brother teaching Mom and Daddy how to do the Mashed Potatoes and the Jerk. Maybe it wasn’t a huge part of our growing up, but dancing was definitely a part of it. Now we do a different dance, but a dance nevertheless. Sometimes it’s three steps forward, two steps back. Sometimes, visa versa. Always to a minor key and always a slow dance. But the good news is, we are still in the dance.