When you begin your journey as a care partner, there is so much to learn. This is especially true if your loved one is suffering from Alzheimer's or another form of dementia. You are full of questions.
"What will happen? How fast?"
"What can I expect?"
"How do I handle________?"
"What does it mean when____?"
Because it is all new and you are thirsty for information, you may look to all kinds of sources, including some that aren't credible. (But how do you know?) You also want to talk to others who are coping with the disease, and although this is valuable, their experience isn't your experience, and anecdotal truth isn't necessarily true.
Five Myths About Alzheimer's Disease
5. When someone is diagnosed with Alzheimer's disease, you lose a little of them every day, until there is nothing left. Their body is there, but the mind, spirit and emotions are gone and you are left with an empty shell.
I find this myth particularly disturbing, because it is so prevalent and because it is so wrong. There will be losses, there is no denying it. The person will change. But isn't that what we do as humans? We grow and change. I am not the same person (inside or outside!) that I was at 20. And I have had losses. There are things I can't do any more. Things I will never do again. But I am not defined by what I can or can't do, or remember. I am more than that.
Daily, I see people in the last stages of Alzheimer's laughing, telling jokes, dancing, singing, playing the piano, visiting with friends...the list goes on. What are they doing? They are living. People with Alzheimer's have purpose and value.
4. People with Alzheimer's can't learn anything new.
I used to believe this, but I've seen it disproved over and over again. When people move to our care sections from living independently in an apartment, it is a tremendous upheaval for them. I can take up to six weeks to fully adjust. In the first few weeks, they may end up back at the door of their apartment, wondering how to get in, or looking for their room in an entirely different section of the building. But they adjust. Eventually, they learn that it's a right turn down the hall to the dining room, and that this room contains all their treasures, is indeed theirs. It usually takes heaping portions of patience on the part of care partners, but it is possible.
3. People with Alzheimer's lose their personality.
Again, not true. Aspects of personality may change, and you may see behaviours you haven't seen before. Some may loose the social mask that kept them from saying whatever they were thinking, leading to funny, or sometimes insulting comments. Others may become angry when they never were before (or didn't show it.) But the essence of who they are remains. You might see the sarcastic edge, or the emotional side, anger or anxiety, but the person is still there. They may be changed and there may be times when you have to search for the best way to connect, but it a search worth taking.
2. People with Alzheimer's aren't aware of what is happening around them.
The opposite of this is true. It seems that, as the faculties of speech, memory and other abilities fade, the sense of people's emotions is heightened. It is difficult, if you are upset when coming in to work, to hide it. Residents with dementia sense it without a word being spoken. It's incredibly touching to me that, when they sense there is a problem, they try to solve it. A word, a smile, a touch, a hug. People with dementia are the most loving and caring, and being among them is therapy.
1. Being a care partner is all about giving 24/7.
You will have times of exhaustion, and the demands can be great. But you will receive. You will laugh, you will be hugged, and you will have times of incredible fulfilment.
Seventeen years ago, when I started in elder care, I worked exclusively with people with dementia. I was as green as they came, and stumbled around (figuratively) trying to find my way and make a difference. A woman called Florence had Alzheimer's and an anxiety disorder. She always looked as if she was going to burst into tears, and I searched for ways to help her. One day, as she rested on her bed in the afternoon, I sat with her for a few minutes, holding her hand. She opened those faded blue eyes, looked at me and smiled. "I feel safe with you," she said. All these years later, I remember her, and how she gave back to me that day.
If you are a care partner of someone who has been diagnosed with Alzheimer's disease, I urge you to contact the Alzheimer's society in your area for hundreds of valuable, credible resources.