Thoughts From A Care-Giver

The corridor to my mother's room is wide, but the wheelchair traffic jam requires some dexterity and speed to avoid the grasping hands and the unanswerable questions. Guilt assails me, but I know she waits, alone.

Light from the picture window highlights her features as she sits in her wheelchair, facing the door. She has an impassive expression, her cheeks shallow, her skin blotched. When she moves, her mannerisms and posture reflect resignation and a begrudging acceptance that the time she has left may no longer be countable in years. Her grey hair has become sparse in places, her appearance not as meticulous as in times past.

My visits are taken, not with enthusiasm, but with acceptance. Even if I stay for only a few minutes, I witness no disappointment when I leave. Her only response to my being there is usually an automatic "thank you for coming," as though the saying of it is a social necessity rather than a sincere expression.

I try to recall the vibrant, social butterfly I grew up with, the mother who cheerfully drove me to a friend's house and who actually looked forward to attending boring school functions. But the differences between how she was then and how she is now are too great. I'm looking at a different person.

Perhaps the blame is mine for the listless way she lives her remaining years. For six years I encouraged her to live on her own in an independent-living apartment of a local care facility, hoping that the regime of taking care of herself would keep her mentally alert and would make her feel self-sufficient. I didn't count on the physical deterioration which made it necessary to place her in dependent care.

She is legally blind, handicapped with a condition called macular degeneration. This eye disease blocks out the center of her vision but allows her to dimly perceive her world around the edges. She can pick out a speck of lint on the carpet but is unable to read her mail. If she had her vision, she could have at least continued to do the crossword puzzles she so loved. Perhaps the mental exercise would have postponed her memory loss.

Her independent-living apartment was the furthest down the hall. When she first moved in, she used a cane to find her way to the dining room and the other areas where Bingo was played or physical fitness was encouraged in an exercise class. A few years later, I noticed that she tended to wobble a bit with the standard cane. Fearing that a fall was likely, I arranged for her to use a cane with four feet, giving her more stability.

Next came the walker, equipped with a bag over the front to hold her tissues and billfold and a braking system which used to make me smile. It was ludicrous to think that she could roar down the hall in that contraption and leave skid marks with the back legs if an obstacle was encountered. I considered getting her a horn, one of those where you squeeze the rubber ball to make it honk. She could warn people to move so that braking wouldn't be necessary.

After two falls in her apartment, always at night and always on the way to the bathroom, I knew her independence was at an end. She could no longer physically handle the demands of keeping up.

Her short-term memory was also beginning to fade. I would listen with sinking heart as she would ask me the same question over and over in the space of thirty minutes. Had I not done all I could to keep her mind exercised? Was there something else I could have done?

By emptying out her apartment, I gave up my responsibility, relinquishing it to the nursing section where she now resides. I felt as if I had betrayed her. To give her hope, I told her that she needed to build up her strength, because there was always a chance she could be independent again. It was a lie, but it was also a goal to give her something to work towards.

Now she sits in a wheelchair, no goals obtainable. Perhaps she blames me for her situation, or perhaps she really believes that a person can live too long, something that she has repeated to me on several occasions.

Have I let her down? Could I have done something that would have allowed her to continue life with some dignity? Those thoughts will always haunt me. I have cared for her, even taken her into my home when she was too ill to care for herself, only to find that the task was too great and that I was too unskilled. I gladly drove her to the hospital so my burden could be eased. Yet, I think of the number of times when I was ill, times when she cared for me cheerfully, not looking for a way out.

My wife and I visit her at least three times a week. Each time I leave the house, I sigh, not wanting to visit, because with the visitation comes the gnawing thought that in twenty or thirty years my wife or I may take her place. Chances are that I will die before I reach that state of becoming an adult child. There aren't too many men in the nursing section.

I would rather die than age to the point of becoming a burden to my sons. I wouldn't want to think that they thought a visit to me was a necessity and not something they wanted to do.

There's something wrong in a society where the elderly are shuffled off to holding areas, waiting for the moment when their body clock ticks off the final second. But what is the choice? She's trapped within the limitations her body has given her.

I think within that worn-out shell, in her lucid moments, is a young girl, wanting to be free once more, reliving those moments of happiness when life was worth the living, when she and my father shared the adventures and the challenges. There are no more challenges for her. Everything she needs is being provided by the nursing staff. I supply what little family interaction I can, but it isn't enough.

And so she sits, waiting to be wheeled down to meals, waiting for assistance to go into the bathroom, waiting to die. Sometimes when we're sitting together in the lounge, I'll catch a knowing look in her eyes, an understanding that she realizes not much can be done. She's waiting and knows that I'm waiting, too.

It must be difficult to age to the point of seeing your life-long companions die one by one, leaving you with nothing but their memories while you grasp at the reason for your continuing. Perhaps for the elderly, death holds no fear for the unbeliever. Perhaps death is looked upon as peace and freedom--freedom from pain, freedom from feeling like a burden.

My father died with dignity. My mother waits, her privacy shattered, her dignity in shambles. Sometimes a person can live too long.