So last week, I talked about the first time I ever doubted my decision to become a nurse. The second time was when I became a caregiver at an assisted living that was built specifically for Alzheimer’s/Dementia. I wasn’t quite sure what I was getting into. I knew that I wanted to work in Geriatrics, but I hadn’t really decided anything beyond that.
When I started, I quickly realized that all of the clichés – the confusion, the behaviors, everything else… was all true. But that didn’t mean that it was miserable or that they were difficult to work with. In fact, it was just the opposite. I LOVED my job. I loved working with my residents. They made my day so much happier. Most of the days, I couldn’t wait to get to work.
I think the one thing that I loved about it was that it was almost as though their disease – as devastating as it is – stripped away all of the false shows that we as humans tend to show. They were completely honest, even if at times they said something offensive, I knew that everything they said was true in their reality. I loved the job so much that I began to wonder why I’d even gone into nursing school. Because in the Assisted Living, I never saw the nurse. She didn’t work the floor, she didn’t see our residents on a daily basis.
The whole reason that I’d become a nurse was because I wanted to help others, I wanted to take care of them. Suddenly, I started to wonder if I really wanted to become a CNA and not a nurse. I started to really doubt my career path.
And then I met Joe. Of course, his name wasn’t really Joe. According to HIPPA, I’m not allowed to tell his real name, but it feels funny not to give him a name at all, especially since he influenced my life so much. He was a chipper, happy, bubbly man who arrived in the facility around the same time that I did. He was always quick to make everyone feel better, and he always made me smile.
Over the course of several weeks, I began to notice a definite change in Joe. He started to become depressed, he stopped eating. By the time I left the facility, he refused to leave his bed. His family threatened to take him out and put him somewhere else because they thought we were neglecting him or abusing him.
But I knew exactly what happened. His family, because they didn’t understand his disease process, felt it was important to bring him back to reality. They reminded him of things he forgot. Which wouldn’t be so bad, if the reminder he constantly received was that his wife had died the year before.
One of the things that many people do not realize about Alzheimer’s is that it affects different areas of the brain, which includes the memory and reality perception. Their reality does not always become ours. Very often, a person with Alzheimer’s begins to ‘regress,’ which means that they slowly move backwards in time. They talk more and more about their deceased husband/wife, their mother, brothers and sisters. They may remember their kids, but they remember them as small children, not as grownups with children of their own.
The absolute worst thing to do is to tell someone with Alzheimer’s that their reality is wrong. How would you feel if you experienced that? Someone came up to you and told you, ‘No, the president isn’t Obama, it’s President Tanner, and the year is 2045. Not only would you be confused, but you’d be upset because you’d think they were trying to pull one over on you.
Joe’s family didn’t understand that. All they knew was that he was confused, and they wanted to fix it. They hung signs in his room, by the phone, on the bathroom door, everywhere, that said, “Dad, remember that your wife, Debora is dead.”
Joe didn’t remember his wife was dead. That wasn’t in his reality. So every time he read a sign, every time his family reminded him, he went through the grieving process all over again. Though he didn’t always remember exactly why he was sad, the feelings remained with him. He became depressed. And wouldn’t you? If you experienced your significant other’s death for the first time nine or ten times a day, it would be devastating or exhausting.
As a CNA, I couldn’t do anything for him. I couldn’t talk to the family. I couldn’t make a difference. That’s when I realized why it was so important for me to become a nurse. I wanted to be his advocate. He couldn’t express his feelings, and he needed someone to do it for him.
That’s why I became a nurse. And that’s why I focus so much on Alzheimer’s and Dementia. Did you know that they’re the only disease who can’t speak for themselves? If someone has breast cancer, they can tell their family and friends, they can join help groups or donate to the cause. Most of those with Alzheimer’s don’t even realize what’s happening to them.
And that’s why I think that awareness needs to be raised. Alzheimer’s isn’t a period of forgetfulness, and it isn’t romantic like the movies show. It’s a devastating disease that affects every aspect of life. And unfortunately, right now, the only cure is death.
I know this was a long post, but it’s an important one. Please spread the word. If you want to learn more about the disease, there’s a book called the 36 Hour Day which is just fantastic. Read it if you get a chance.
Anyone here with personal experience with family or friends with Alzheimer’s? I would love to hear your story!