10 Things Alzheimer's Patients Have Taught Me
For seven years, I was a caregiver for my beloved Romanian life partner, who had Alzheimer's. In addition, I previously volunteered to make weekly visits to four women who were residents of a memory care facility. I called them "my ladies," and I've learned so much from them. Here are the ten most important lessons I've learned from them.
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1. Simple pleasures can bring great joy to someone with Alzheimer's: People with Alzheimer's can enjoy even the most mundane activities. Ed was once engrossed in inspecting a coat of mine with numerous pockets and zippers. He worked on it for 30 minutes, smiling the entire time. Another thing I learned is that people with Alzheimer's, like the rest of us, enjoy receiving gifts, no matter how big or small. I once gave a gift to one of my ladies. I explained that it was only a token gesture. "I know, honey, but it's a gift," she explained.
2. Pets, children, music, and art may reach them on levels we cannot: I have seen numerous examples of the positive effects these can have on Alzheimer's patients. There is no doubt about it. Pets, children, music, or art can sometimes make connections with people who no longer speak or recognize their loved ones.
3. What it means when they keep telling you the same story or asking you the same question over and over: Ed and my ladies would occasionally tell me the same story or ask me the same question over and over. They had forgotten they had just told the story or asked the question. This taught me that the subjects of their repetition must be very important to them. It's best to be patient and respond as if it were the first time.
4. Just because they don't talk doesn't mean they aren't aware of what's going on around them and what people are saying to and about them: when I visited one of my ladies, she couldn't talk anymore, so I just held her hand and talked softly to her. I assumed she was unaware of my presence or her surroundings. But when I told her she had to be very proud of her daughter, she shook her head from side to side, indicating 'no.' That told me she completely understood what I was saying!
5. There's usually no reason to tell them someone is dead: It's not uncommon for people with Alzheimer's to inquire about the whereabouts of a specific person when, in fact, that person died years ago. Rather than telling them the person is dead, which will likely upset them greatly, it can be helpful to tell a little white lie and explain where the person is and that they will return soon. Then shift the subject to something more enjoyable.
6. There's usually no reason to tell them someone is deceased: it's not uncommon for people with Alzheimer's to inquire about the where about of a specific person when, in fact, that person died years ago. Rather than telling them the person is dead, which will most likely cause them great distress, it can be helpful to tell a little white lie and explain where the person is and that they will return soon. Then switch to a more pleasant topic.
7. People with Alzheimer's disease may adjust to change faster than we do, and they may quickly forget unpleasant things that happen to them: Ed provided some prominent ones of this. He once told me that at the facility where he lived, he had been beaten by six aids. (Of course, this was not true!) He was furious - as furious as he would have been if the story had been true - and I suffered deeply knowing there was nothing I could do to make him feel better. But by the next day, he had forgotten about it, whereas I was still upset for days.
8. They can still have fun: Many people believe that people with Alzheimer's can't have fun. However, several experts I interviewed agreed that, while Alzheimer's is a serious disease, people with it can and do enjoy life. It's a disease that usually affects the caregiver more than the patient.
9. According to Ed, people with Alzheimer's can remember past loves as well as experience love in the present. I once showed him an old photograph of us together. "Ah," he said. . . She loved me." He then looked me in the eyes like he had when we were lovers more than 25 years ago. He had no idea I was the woman in the picture.
10. I had heard that volunteering to visit people in a care facility could be very rewarding, but I didn't believe it. I thought it might be useful to the people being visited, but I didn't think it would benefit me. I was so wrong. I always felt better when I left, no matter how I was feeling before I went. I definitely received more than I gave!
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