Perpetual Emotion
Please note that this is a personal story submitted by an About.com reader.
Gradually, Minnie's ability to walk more than a few yards without a rest was curtailed by her growing respiratory problems. She would gasp for breath, be unable to speak, and would need to sit down many times before reaching her destination. It could take ten minutes for her to go a hundred feet.
Several nasty falls landed her in the emergency rooms of local hospitals, and rewarded her with the walker she had dreaded so much-but her attitude had changed. She actually loved her walker. She really needed it, was afraid to walk without it, and could not recall her prior revulsion at the thought of it. As I write this, it is several years later and she is now wheelchair bound. I remember her walker with nostalgia. She was slow, but at least she could get around on her own.
Also, she is totally incontinent. At first it was just her bladder. With the persuasive efforts of the social work staff, Minnie reluctantly agreed to wear protective underwear. For about a year, that did the trick. She was able to self-toilet and she could still go almost anywhere.
After a while she gave up self-toileting altogether. She would often leave damp spots on chairs when she arose, and her pants would be visibly wet. Remarkably, she seemed unaware of this, but I still felt embarrassed for her. I worried a lot about protecting her dignity. Eventually, she lost total control of her bowels too, and fully absorbent diapers had to be introduced. She no longer resisted this. By this time, her personal hygiene required frequent changes and showers each day.
Something must happen to the sense of smell and tactile sensitivity in late stage dementia. Minnie never knows when she has a diaper full until one of her personal care aides peeks and takes her to her room for clean up. You would think she'd feel uncomfortable, or notice the odor, or be embarrassed. But she seems oblivious.
How do I feel about this? How is a son supposed to feel? We're talking about the woman who lovingly toilet-trained me. When I see her like this, I feel like the contents of those dirty diapers. My feelings bounce up and down like a basketball keeping pace with Minnie's changing personality and deficiencies. They range between highs of love and respect and lows of resentment and frustration. Mostly, there is just heartbreak at witnessing this once vital and intelligent woman lose herself within her own failing body.
As you might expect, all of Minnie's breathing, walking, and toileting issues made it very difficult for me to handle her needs. Under these conditions, outside excursions had to taper off, and eventually they stopped altogether. I still mourn their loss. From Minnie's perspective, however, the absence of such jaunts never became an issue. She never once said, "How come you don't take me out anymore?" There were plenty of things to entertain her when she lived at the Residence.
Read on
03/17/2006
