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Stories about Alzheimer’s Disease from Navigating the Alzheimer’s Journey
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One morning I had a happy time sharing some springtime sensory delights with a former farmer, John Angus, and six or seven other persons with advanced dementia at a facility. I remained in the kitchen afterwards, working quickly to prepare for the next group so I could give them my full attention. I heard a knock at the door and looked up to see John Angus through the window. I rather ungraciously thought, “Now what? I just don’t have time for this now.” When I opened the door, my attitude changed entirely. I was humbled and absolutely overwhelmed when I opened the door and was greeted not only by John Angus’s beaming face but also by his outstretched arm giving me the tattered but very precious bouquet of mayflowers that his daughter had brought a few days earlier. Persons with dementia give us what they can. It may not be what we like most, wish for, or expect. However, these gifts are all the more valuable because the person has reached out through the tangle of a damaged brain, and often a battered sense of self, to give.
It had been a wild and woolly morning, but I was finally ready to take Mr. Archibald to his doctor’s appointment and out for coffee. Mr. Archibald came out of his room just as I came flying down the hall. When I saw that his shoes were on the wrong feet, it seemed to be the last straw and I inwardly grimaced as I thought of the time it would take to help him change his shoes. However, I put on my best therapeutic face, touched his arm gently, and said, “Mr. Archibald, I would like to help you change your shoes; they are on the wrong feet.” Looking puzzled but with hardly a pause, Mr. Archibald replied, “Well, now, there is na’ary a thing I can do about that. They are the onliest feets I’ve got, the ones I was born with.” Mr. Archibald’s cheerful response entirely dispelled my stress and frustration, and we both enjoyed a great chuckle together as we changed his shoes and went off for a happy afternoon together. If you can, laugh at yourself and with the person you are caring for, it can bring an amazing sense of freedom. Laughter truly is great medicine. It may be hard to find a laugh when much of what you experience, as you watch the person you know and love undergo loss after loss, is sadness. This, of course, is why humor and laughter are so important.
* * * Joe was sitting by the window very involved with his morning paper. As his caregiver walked by, she noticed that he had the paper upside down! She gently asked if he would like her to turn the paper. He replied, “No, it’s just fine. Any damn fool can read it right-side up, but this takes special talent.” People with dementia continue to have a sense of humor. You have most likely experienced this when the person with dementia skillfully uses humor to protect his or her dignity. Caregivers can use humor in this same way. Every day after supper, Bill tipped back his chair, looked at Eva, his wife of 45 years, and said, “Thanks for the lovely meal, but I’d better be getting home now.” Bill was in the same home that he and Eva had shared for 45 years, the same home that Bill had built with his own hands. As a result, this was the saddest part of Eva’s caregiving day because she was devastated all over again by the terrible losses that Alzheimer’s disease had created for her and Bill. Nonetheless, every day she patiently explained that she would take care of Bill and that she needed him to stay here with her now. Although this moment was always full of sorrow, Bill would respond to Eva’s gentle reassurance. The worry would leave his face, and they both would enjoy cuddling on the couch while listening to some of their favorite music. The sorrow would give way to a moment of contentment. People with dementia often search for home, whether they live at home, like Bill, or in a long-term care facility. Searching for home is especially distressing and puzzling in cases like Bill’s, when the person is in fact at home. What a person with dementia may be searching for is the “feeling of home,” emotional shelter from the fearful storms of living with dementia.
* * * Rosie’s husband Al had been a letter carrier. She was frustrated by the fact that Al constantly moved and reorganized the papers in her desk—important personal documents and any other bits of paper that he could find. Rosie kept reminding him to leave these things alone, but Al continued with this behavior and became agitated and distressed. Eventually, Rosie set up a mail-sorting station and a simple delivery route for Al. Every morning, Al would go to his workstation and spend many happy hours sorting and organizing his collection of junk mail and flyers, which he would then distribute around the house and to some understanding neighbors. Persons who fold and refold the same worn tissue; pat and rub a table, a tray, or clothing; repetitively clap; or pace the same worn path are expressing the need to do, the need to be occupied, in the only way they know how. Sometimes these attempts may not be viewed positively by others. Quality of life for all can be improved and challenges can be reduced when caregivers support and direct the need to do, finding meaningful replacements. . . * * * Regardless of what time it was or whether Gerry had just eaten, dozens of times per day he would ask his caregiver if it was time for supper yet. No answer ever really satisfied Gerry; he always seemed anxious that he wasn’t getting his meals. His caregiver decided to get Gerry to help set the table on a daily basis. A few days later, Gerry started to ask if it was time for supper, then stopped and answered his own question by saying, “Oh, wait now. I helped set the table, so I guess we must have eaten.” Sometimes Gerry was able to answer his own question and sometimes he needed hints from his caregiver, but he was always reassured that he ate because he remembered setting the table. In this and countless other ways, a home environment that encourages the person to be involved in meaningful daily activities helps to overcome some of the losses caused by dementia, thereby improving the quality of life for the person and his or her caregiver.
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For more information contact Health Professions Press toll free at 888-337-8808 or visit us online at www.healthpropress.com
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