iOS app Android app More

Featuring fresh takes and real-time analysis from HuffPost's signature lineup of contributors
Marie Marley

GET UPDATES FROM Marie Marley
 

Confessions Of A Worn-Out Alzheimer's Caregiver

Posted: 02/10/2013 8:11 am

As Leeza Gibbons wrote in her book, "Take Your Oxygen First," "If you're caring for someone with Alzheimer's and you've never lost your temper with the person -- just wait. You will." To that I add: If you don't, then either you're a saint or you're incredibly out of touch with your feelings.

I was a caregiver for seven long years for Dr. Edward Theodoru, my beloved Romanian soul mate of 30 years. In the early and mid-stages of his dementia I did many things I was later not proud of. At all.

Ed had a short temper and as his Alzheimer's progressed he began losing his temper even more often. He got angry and yelled at me frequently. At that time I wasn't aware that yelling back was not a good solution. I later learned that quickly changing the subject would lead to a better outcome.

But in the meantime what I did was yell back, which only escalated his anger. I yelled back at him on so many occasions I can't remember them all. The two greatest arguments were when I was trying to persuade him to stop driving and when I was doing my best to get him to move into a long-term care facility. Both of these topics caused arguments that lasted for months.

Another behavior I was later sorry for was that I corrected him when he said things that were either not true or total nonsense. A geriatric social worker friend who saw this advised me to just agree with whatever he said unless there was some compelling reason not to -- and, she added, there was rarely any reason not to.

One example was when he told me he had talked to his father the preceding evening. Since Ed was 93 at the time, this was obviously not true. Instead of just agreeing and changing the subject, I felt compelled to correct him.

I said, "No, Ed, that's not possible. Your father is dead." He got very upset. I was sorry to see him suffer and after several seconds I realized that wasn't the best way to handle the situation. I said, "Oh, I'm sorry. I was mixed up. I'm sure you talked to him." He relaxed and his hurt expression faded away.

Another example of total insensitivity was when he told me he was working at a bank three days a week and they hadn't paid him a penny. I promptly answered, "No, you aren't working anywhere." Again, he seemed hurt and confused. After some thought I came up with a better response. I realized he was concerned about his finances, so I said, "Don't worry at all, Ed. I'm taking care of all your bills." He thanked me profusely and told me that made him feel much better.

A final example of what I later realized was total thoughtlessness was that I frequently asked him if he remembered some event or person. When I arrived to visit, the first thing I usually asked was, "Do you remember what you had for lunch today?" Most of the time he responded by saying he hadn't had lunch that day. Since I knew he'd had lunch, I tried to prompt him to remember.

After months of trying to spark his memory of many events, I realized this was a stupid mistake. First, I believe it reminded him of his diminished capacity. Second, of course he couldn't remember. If he could remember he wouldn't have been in an Alzheimer's facility in the first place.

So I finally stopped asking him if he remembered anything -- such as the names of people who visited him, the visit from his son the previous evening, my mother (whom he had met many times) or anything else he most likely didn't remember at all.

I was proud of myself when I finally learned to stop all three of these ridiculous behaviors and interact with him on his level -- not mine. It made me feel closer to him and it clearly made him more relaxed and contented. Although it was difficult for me to master the new approaches, when I finally did our relationship blossomed again and life with him was much more peaceful and emotionally rewarding.

For more about my relationship with Ed, read my book, "Come Back Early Today: A Memoir of Love, Alzheimer's and Joy," and visit my website, which contains a wealth of information about Alzheimer's caregiving.

 
FOLLOW FIFTY