Sometimes, when reading a novel, I come across a character who develops Alzheimer’s. Or their mother does. Or they’re a witness to a murder but are discredited because of their diagnosis. Maybe it’s my sensitivity to the subject, but it blows me away how often Alzheimer’s and other dementias show up as a subplot.
What also blows me away is how often I end up arguing with the authors (In my mind…)
Don’t make them look so pathetic. There’s still a person in there! Don’t act as if their life is over! Give the person with Alzheimer’s something to say. They still have wisdom!
September is Alzheimer’s Awareness month, and to honour that, I’m going to do an Alzheimer’s question and answer all month.
My mother has just been diagnosed. What can I expect?
First, let’s back up. Who diagnosed them? Not all doctors are well versed in eldercare and 
dementia. Make sure the diagnosis was made by either a geriatrician or a physician who has experience with people with dementia. Poor diet, other diseases and medications can cause symptoms which can be mistaken for Alzheimer’s and dementia. If you aren’t confident, get a second opinion.
Secondly, my favourite quote regarding this disease is from Bill Thomas, founder of the Eden Alternative. “If you have met one person with dementia, you’ve met one person with dementia.” Although there are similarities in how the disease presents, it is as individual as the person who has it. Also, because people change at all walks of life, people with dementia change. When you have them figured out, they change. (Do you remember saying that about your toddlers? Your teenagers?) So, be careful about looking for “what to expect.”
Finally, try to avoid always looking for signs. If you have a new diagnosis, you’ve probably been wondering for months, “Is this normal, a fluke, or something I should worry about?” Now that you know, you’ll be looking for ways in which your elder needs support. Do they need help with medications? Food preparation? Someone to give them a shower a few times a week? These are all excellent questions, and you need to be aware. However…
I don’t deal with dementia, but I have mobility issues. I walk with a cane, and sometimes I need to stop for 30 seconds to rest. Many times, kind, helpful people bug the heck out of me by wanting to help. They want to do things for me that I can do for myself. Slowly, imperfectly, but I can do them. I was once out for my daily walk when someone stopped me and said she would go and get her car and drive me home. I thanked her profusely, assured her I was walking because I needed to walk, and yes, I wanted to continue walking. She was lovely and meant all kinds of well, but I left thinking, “How pathetic do I look?” I walked on a less public street after that.
People with dementia often have that tension. Will they make a mistake in public? Say the wrong word or forget a word? Forget a name? Do something wrong? While you are being aware, also be graceful. A wrong word can be laughed off. A missed word can be supplied. Start all conversations with , “Hi, Mom, it’s Nathan.” Never ask, “Do you remember who I am?”
A person who has been diagnosed with Alzheimer’s or other dementias will be dealing with fear, insecurity, vulnerability and embarrassment. As their support, their care partner, you need to be aware of all these things and sprinkle every conversation with grace. Without using the words say, “I see you, I hear you, you matter, and your contribution is important.”
Next week: What is Alzheimer’s, what is dementia, and are they the same?