New Year: New Lessons About Alzheimer’s Disease
On Thursday, I took my mom to another specialist’s appointment. She has Alzheimer’s Disease, a form of Dementia.
Dementia is the scourge of the modern era. As more and more of us live longerr, the illness is increasingly common. We, the sandwich generation, are dealing with adult children and grandchildren while also dealing with our failing parents.
What is Alzheimer’s Disease?
Most of us think we know about the illness, but as my mother’s path into this terminal illness continues, I’m learning more than I ever wanted to know.
AD begins with the gradual loss of short term memory. Mom tells the same story over and over and over again. Usually in a five minute period. We don’t have conversations. We are taken hostage by her need to share the details of her life – details she doesn’t remember sharing.
But AD is more than simple forgetfulness. (You can all wipe your brow now – this probably doesn’t apply to you.) AD begins with the normal forgetfulness of aging but morphs into a monster than takes away short term memory, eventually robbing us of our ability to recognize our loved ones. If we live long enough (and this is happening more often) we end up in a fetal position, unable to feed ourselves or control our body functions.
AD includes the loss of the ability to think and reason. It is critical to have a personal directive, which names an agent to act on your behalf, and an enduring power of attorney to manage your finances. In a perfect world these are two different people, who can keep your best interests at heart and yet have different responsibilities. (More about this in a future post.)
AD may include a change of personality. People go from sweet and kind to absolute terrors, nasty, bitchy and mean-spirited. I have participated in a discussion of the placement of a white-haired ninety year old woman who’d become increasingly violent as her disease progressed. She had become a real threat to the other residents in her long-term care facility. Unfortunately, nobody wanted this lady as a resident but she was much too far gone to live alone or with family. Eventually, we were able to find a place, but only under a bit of duress and a living arrangement with a higher number than usual lock down hours – because the lady couldn’t be allowed to wonder the halls.
AD usually includes fixation. People get an idea in their heads and that becomes their only reality. For my mother it’s diarrhoea. To hear her tell it, she can’t leave her apartment because of this problem, and yet there is no evidence of chronic, on-going bowel problems. This fixation may center on noises around them, or bad neighbors, or adult children who are rude, never visit or are stealing. The idea is irrelevant. What matters is that it becomes part of the fabric of their reality, even though the rest of us don’t see the same thing.
AD may also include depression and anxiety. Both are fairly predictable when we consider the realities of the illness. Who wouldn’t be depressed if you honestly believed no one came to visit? If you honestly believe that you are all alone, isolated and forgotten?
And of course, if you’re unable to remember how to do simple tasks (recently mom couldn’t remember how to use her washing machine) you will be subject to panic attacks. In mom’s case this has resulted in one trip, via ambulance to the emergency department because her pulse skyrocketed and she had resulting chest pain.
Aging is not for sissies. And the diagnosis of Dementia is difficult. Alzheimer’s is a huge challenge – for the individual and their family. I’m lucky. We have a big family and we all play a role in helping mom, with each of us taking different roles at different times. But it is important to remember that dealing with this illness is a long haul. (Average life expectancy can be from five to twenty years.) Pace yourself. Be gentle. Know that it is not always easy and some days are plain awful.
I will be sharing more of what I learn and experience as we travel this road. Hopefully we can all learn something. I’m hoping these posts will help me remember that my mom has an illness. Her behaviour is not her fault. I can’t expect her to change. There is no point losing my patience; nor is there a point in sliding into her dramas. Because none of this is real – it’s all about Alzheimer’s Disease and the price it demands from victim, family and friends.