Walker Wars

Mom has always been of a rather stubborn mindset. Her dementia hasn't changed anything as far as that goes. It shows up most often on the jaunt to and from the washroom.Sometimes I lead her where she needs to go which also helps speed her up a little, but she really does not care for that kind of help...unless she get "stuck" somewhere.

There are times when I see Mom making a direct beeline for the sofa or the wall and I'll try to gently move her walker in the correct direction. This often meets with a look of disapproval and sometimes an exasperated sigh as well as the accompanied response of a tug on her part to continue in the wrong direction.

Then there is the phenomena we call "the crab walk." Occasionally Mom will choose to walk a little sideways with her walker which of course leads to some instability and increases the chances of a fall. I tell her she needs to walk straight, and sometimes I need to call her name to make sure she hears me and is paying attention. She will then say, "Okay." and continue with the crab walk.

Turning the corner to enter the bathroom is the main challenge. Mom often looks like she's an undercover agent sneaking up on the perpetrator as she moves sideways into the room at a painfully slow pace. This was a battle I used to fight regularly. I wanted her to walk straight forward, she insisted on the crab walk. I would guide her walker in the "proper" direction and she would resist. One night she stopped, looked at me and said, "I'm trying to use my walker but there's something that's always pulling it in another direction!"

"That's me Mom, trying to get you to walk forward instead of sideways."

"Oh, okay," and the crab walk resumed! That was when I decided to just keep an eye on her and let her do it her way. She leans against the wall and the doorjamb for support so it's not like she is really going to fall backwards and I'm there to catch her regardless. Eventually she straightens out - mostly.

It's easy to get frustrated with the situation. On the other hand, she is still mobile and that's a good thing. The lesson here, out of the many lessons, is one that seems to permeate the entire experience and that is: Embrace patience. Take a deep breath, see the blessings in slowing down and be okay with things just the way they are.

I remind myself often that the reason I am here right now is to help take care of Mom. This is my calling, my duty, my privilege, my choice.  I don't have to step away from my life to help with Mom. I have the option to take up "normal living" whenever I choose. However, my choice is to be here for her. That means I get to slow down to her pace and live in her world and learn the lessons that are available for the gleaning.

It's certainly not easy to watch a parent slowly slip away little bit by little bit, but somehow there is some solace in knowing that she isn't traveling this road alone in an unfamiliar place with unfamiliar faces. We are blessed to have the ability to care for her at home. Not everyone is so fortunate. So, even though the journey may be a little difficult at times, still I am glad I have the opportunity to hold her hand and travel this road with her.

What feelings have you had to deal with while journeying with a loved one in the dementia dimension?
 
 

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.