Midnight Rambler

Taking care of Mother in her own home has always meant two things: taking care of Mother and taking care of her home. The central challenge where these two goals converge is Mother's Alzheimers' caused incontinence, which makes her a hazard to her own home. Without intervention, incontinence renders any environment unlivable. This is one of the main reasons people get moved to nursing homes.

Here at the Fremont Street Center For Healthy Aging, we are interested in delivering reality based care. We want to see Mother's Alzheimers for what it is (an illness), and what it is not (the end of life as we know it). We don't want to exaggerate it or underestimate it. We want to respond, with individualized attention, to the impact of Alzheimer's on this particular, unique human being.

Incontinence has provided one marker for the progress of the Alzheimer's caused dementia which has disabled Mother for at least six years. In the spring of 2006, when Dennis and I arrived in Portland, Mother had stopped being able to do housework, but she still was putting herself to bed, and getting up in the morning without help. She made her bed every morning. She slept in her clothes. Occasionally she experienced incontinence while she slept - I only knew this because we would find her standing in the living room wrapped in a blanket. She knew how to take off her wet pants, but had lost the ability to dress herself.

About a year ago, she moved to wearing paper diapers around the clock. This turned out to deliver immediate huge psychological benefits. She was relieved not to have constant daytime worry and embarrassment about minor incontinence. Paper diapers were a godsend which returned her dignity to her. She was visibly more relaxed. Around this time, she lost the ability to put herself to bed. I mandated a bedtime for her caregivers to observe. In a rare moment of lucidity, she thanked me for doing this.

She lost the habit of making her bed every day around the same time as she lost the ability to dress herself and to put herself to bed. She never lost the ability to use the toilet.

She still has not. However, her dementia has progressed so that in addition to using the toilet correctly, which she does 98% of the time, without supervision, she will also mistake/appropriate other objects to serve as a toilet. Because there is always someone here with her, this has not been a problem. She can be redirected to the bathroom, and she has no objection to that.

In the middle of the night, however, there is no one there to redirect her. She has trouble finding the bathroom very rarely, but when it does happen, we come down and discover a wet spot on her bedroom rug. We also, for the first time since the arrival of the new caregivers in February, have begun finding wet spots in her bed. Her only problem was finding the toilet to urinate. She never has trouble finding it for bowel movements.

We were temporarily stumped as to how best to address the wet bed dilemma. All the best support in the world delivered during the day couldn't help her during the night, when everyone was asleep. Then, in a searing flash of insight, we realized that we could change Mother's diapers midway through her night.

I have begun doing this. I gather it is a standard practice in nursing homes. I thought Mother would dislike it. She doesn't mind. William used to change her diapers in the middle of the night. So she had a memory of the experience, and it wasn't new to her. She is so fit that she can help, even lying on her back.

The true obstacle to this, most practical solution to an Alzheimer's caused problem, was Dennis' and my own emotional reaction. Changing your Mother's diapers is one thing when she is standing there, clothed, during the day. When she is lying in bed in her pajamas, the role reversal you are experiencing is so complete it has to be confronted, and the emotions processed. Dennis, who has been able to do everything else with Mother, found this job impossible. There was nothing in him which found the practice of waking up a woman and pulling off her pants acceptable. But after a few tries, I have found that changing Mother into clean diapers while she is in bed is not that hard.

The reason I am spelling this all out in such detail for my fellow aging specialists across the country is that this particular job - that of addressing incontinence- is what sends most elders to nursing homes. This is what it comes down to. I am not minimizing the size of the problem. Eventually for us too this may become the problem that sends Mother to a nursing home. But if we had thrown up our hands and said "Impossible!" before trying the simple step of changing Mother's diapers while she was in bed, we would have been essentially outsourcing one extremely simple intervention to the staff of a nursing home, and asking Mother to move out of her house in order to make that happen.

We would be changing her whole life so that professionals could change her pants.

This problem solving update is the latest new development in our daily routine here at the Fremont Street Center for Healthy Aging. Mother remains physically healthy, active, and emotionally connected to the people around her.