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It was just another phase of Alzheimer’s that I was bracing myself for and it eventually happened. A puddle in the wrong place at the wrong time.

Dorothy and I always enjoyed traveling and still did it at the time I had to face the onset of her incontinence and of course it developed while we were on a vacation. The first thing I did was buy a special pad for her seat in the car which is claimed to be impenetrable. So far, so good and it works as well in our home.

Part of my dilemma was recognizing that she couldn’t go into the ladies room unattended any longer and I had to decide whether to take her to the ladies room ( where she would feel most comfortable) or the men’s room (where I would be most comfortable). I tried the ladies room first. I was amazed at how upset some women got, even when I explained my problems. I remember one incident in which Dorothy was not being cooperative. I was trying to get her pad off and she was yanking at it trying to keep it on. The discussion became louder when I heard some shuffling in the next stall, apparently from someone who had entered after us and was not aware of the mixed company next door. I heard the rapid opening of the stall door and glanced out to become transfixed with the sight of a middle aged lady running out with one hand holding up her pants. I quickly dressed Dorothy, made a rapid departure and used the stalls in the men’s room from that day on.

The men were generally very accepting of my problems and frankly I felt much more comfortable with the choice. Dorothy had little ability to distinguish the lady’s room stall from the men’s room stall by then anyway.

I learned to travel with a shoulder bag which held extra incontinence pads, a bib for eating, a few plastic bags for disposal purposes and various other needs. I should mention that we have crossed the United States twice since Dorothy’s incontinence began. We have a 25 foot trailer and for several years I took along her sister Helen who also has Alzheimer’s Disease. Many of my friends felt it was trouble enough to take one person with Alzheimer’s Disease but to take two was masochistic. But Helen was only 14 months younger than Dorothy and they had always been very close.

The bond between them still worked in spite of their Dementia and that made the transitions that happened, as she and Dorothy moved deeper into their illness, easier for me than might be expected. They were both on the same frequency for one thing and spent time sitting with each other, which allowed me to devote some of my attention to other chores like preparing meals and getting the trailer set up. I also brought along a combination TV and VCR and played video tapes which helped keep them occupied while I took care of the tasks.

I always prepared breakfast before our morning routine started and then Helen and Dorothy would line up for their turn in the shower. They couldn’t handle the task by themselves anymore, and so I would take one and then the other in, in order to make sure they were properly ‘freshened up’. I hasten to assure you there was nothing romantic about these occasions, but all of us managed to remain in good spirits while I got the job done.

I traveled with plenty of incontinence products, I played soft background music to keep them calm and to soothe my own nerves. It just took patience, understanding, love, and lots of anti-bacterial soap.

by John Rapoza

editor's note:

I remember visiting them after their travel days were over and her sister, Helen had been placed in a nursing facility near her family in California. At the time of this visit, Dorothy’s speech was severely compromised, her language reduced to occasional words sprinkled here and there during the conversations of others. She was bowel incontinent and unable to stand or walk without assistance. She was still attending a comprehensive adult day care program several days a week so that John could continue to participate in activities that rejuvenated him. He is outspoken about the needs of the caregiver to take care of themselves. He is a member of a bicycle group, several men’s groups, a support group and part of the Alzheimer’s Association’s Speaker’s Bureau in Colorado. He is an advocate for caregivers and a role model for those who are doing home-care. I will never forget this visit as long as I live.

I was deeply touched by the tender almost poetic quality with which John related to his wife. The connection was still there between them even though her ability to communicate was severely compromised. We were sitting outside. It began as a sunny warm day, but then the clouds rolled in, and as happens in Colorado, the temperature dropped and it was necessary to move Dorothy indoors. Knowing that Dorothy was no longer able to walk without help I wondered what I could do to help, but before I could ask, John stood up, kissed his wife on the cheek and announced.. 

"Well my darling, it’s time for the Wedding March." 

And as soon as he began to hum the tune, reaching for Dorothy’s hands in order to help her stand, she broke into a wonderful smile. She began to laugh and her body movement telegraphed something that could only be described as flirtatious. For a moment, my imagination transported her back to when she was a young bride. And as John gracefully moved her out of her chair, over the threshold of their front door, and eased her into her wheelchair, it was as if she was indeed his bride.

Dorothy lived at home with John well into her last stage of Alzheimer’s. Through the use of adult-day care, some paid help, Hospice and volunteers, he managed her care. He made the decision to place her in a nursing facility when he found a ‘family home’ who would accept her as one of their four Alzheimer’s residents. Dorothy, in essence, became a part of a family who devoted themselves to giving Alzheimer’s patients the same quality of care they received in their own homes. Dorothy died after a 16 year battle with this disease. John remains active speaking out as an advocate for those with this disease and on behalf of caregivers like himself. He still attends our support group, has written numerous articles and is a living example of successful caregiving in spite of Alzheimer’s.

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