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.

The Journey Begins

This journey began over ten years ago and probably even before then. It all started with a trip to the emergency room. Mom had been staying with me while my father was undergoing treatment for cancer; he was staying with my brother. This was in the middle of 2000. Everything seemed to be going okay considering the circumstances.

One evening, Mom complained of dizziness. One look at her eyes going back and forth told me something was very wrong so my son and I loaded her into my van and took her to the emergency room.(Doctors, nurse practitioners and nurses, please take note: bedside manner means everything in an emergency especially where elderly parents and children are concerned.) Mom was whisked off for testing and scans and brought back into the room after what seemed like a very long time.

"She has dementia and water on the brain." The person who told us this was abrupt, unwelcoming and had no compassion whatever. Perhaps she was having a bad day. Maybe somebody squashed her puppy that evening, I don't know. All I know is she zoomed in, dropped the info and left. She made no attempt to explain anything other than to say that nothing could be done but there was medication for the dizziness. A nurse came in with a prescription and we bundled Mom back into the car and went home.

Dementia. All I could think at the sound of that diagnosis is that my mother is not crazy. Dementia; demented; loopy; not all present...etc., etc., etc. I really had no idea what dementia was, only my childhood memories of people talking about demented so and so and how weird he or she was behaving. I thought I had been told that my mother had lost her mind. I knew that wasn't the case. I needed to find out for myself what was going on.

The first thing I did was look up the word "dementia" in the dictionary and find out exactly what it meant. The definition was unsettling, but not nearly as bad as what I had imagined. Mom had not in fact lost her mind. However, her memory was going and some of her abilities would be leaving as well. To a certain extent the diagnosis meant she was in the process - the slow, long process of losing bits of her mind. But I chose not to dwell on that. I focused on the memory loss piece and decided that we could deal with that. And so we did. And thus began our journey down the winding, ever changing road in the dementia dimension.

The intent of this blog is to help someone out there who is facing the same challenges my family and I face. It is also a vehicle for me to share some of the insights I've gained during this journey. It continues to be an interesting pilgrimage with unique stops along the way and I pray that someone who just entered the dementia dimension or maybe even someone who's been here a while will receive a little gift of knowing that they are not in it alone and that the things you feel are natural and normal. I'm not an expert, but I am my mother's child and I am doing all that I can to make sure this time of her life is as comfortable and pleasant as possible. Welcome to the Dementia Dimension!