BethElaine's space

Well ... here goes! This seems to be as good a place as any to leave my thoughts and feelings as I enter the "Maxine" stage of my life. 

As most of my friends and family know, my Mom and my best friend were for most of my life the same person. And now as Alzheimers claims much of her mind and body, I am ever-so-slowly losing both to that dark chasm that seems to draw her in a little deeper each and every day.

How fortunate my brothers and I have been to have parents who loved and cared so deeply for us and each other! Dad has taken such tender care of my Mom over the past several years as she has descended into the place she is now ... even before we really saw what was happening to her. He commented numerous times that Mom was not doing simple tasks so well ... even before her symptoms became obvious to us.

It has been nearly nine months since she became mostly bed-ridden. She would have been bed-ridden much sooner if Dad had not dressed her and taken her .. wheelchair and all .. everywhere he went. He brought her to the beauty shop every week where we transferred her from her wheelchair to my chair to cut, curl, and comb her, so that people saw the same beautiful lady with the same beautiful smile week after week. It didn't matter that she could not respond to their questions with more than a smile and a nod of her head or a simple yes or no ... she looked like the same wonderful friendly woman they had always known. The man behind the wheelchair was doing all the work, but no one realized just how much he was doing to keep herlooking so normal and happy. It has been more than FIVE years since my mother has been able to talk to me on the telephone! And for even longer than that she has done most of her communicating with her expressions and hereyes.

We have had hospice care for nearly 16 months, so you know things have been on the downhill side for a long time. She had diabetic dry gangrene in her feet and a couple really bad pressure sores on her backside when hospice began, but it was Dad who did the nursing and first aid care . He actually cut away at the dying tissue and took care of her with daily cleaning and dressing changes. He spent hours each day massaging and exercising her legs and feet to increase the circulation to promote healing ... and it worked . Doctors would have amputated, but it would have been even harder to transfer her from chair to chair. At least she was able to stand for a minute or two to allow us to help her dress and take care of personal toilet and hygiene needs.

Then the inevitable happened ... she forgot how to put one foot in front of the other. And as much as I'm sure she would like to ... her brain no longer communicates to her body what it takes to walk, stand, sit, lie down, turn over, or even to hold food to feed herself. In fact, sometimes she doesn't know what to do with the food Dad puts in her mouth. The simple task of eating has become a constant lesson of reminding her to open her mouth, chew, swallow ... and drinking is sometimes just as hard.

I cannot imagine how it must be to live inside her head ... what does she think? Where does she go when that blank look covers her face? What must it be like to try to keep your thoughts from disappearing into thin air? Sometimes I watch her struggle to stay in her thoughts without getting lost. I voiced that to her one day when she seemed to be trying especially hard to recognize her surroundings ... she seemed elated that I actually understood what she was struggling with, and she laughed and then cried when I told her it was ok to let go and let herself get lost in that place she goes to ... After all, it must be hard work to swim upstream all the time.

The most important thing I feel these days is fear ... fear of being the next one in line to get this awful disease. Maybe I never will ... but I'm already recognizing some all too familiar signs. And I know she felt it too ... a long, long time ago!!! I have recently learned of a doctor who specializes in this field ... and I am thinking of going in for an evaluation. If they can halt this thing, I think ... the sooner, the better!!!