I wonder if I’m dreaming the whole thing.
Is this really my mother? She’s walking around in circles, yelling and cursing about people “breaking into her house.” This exhausted disheveled woman with fear in her eyes and venom in her voice is a nightmare vision, a grotesquely distorted version of my mom.
I force myself to stay calm and I remind myself that it’s the disease, not her. I speak in a quiet gentle voice, repeating the same simple phrases – “I love you”, “I just want to help you out”, “Let’s not fight.” She mutters some broken sentences and slowly calms. I crack a joke and give her a pat on the back. Her eyes glaze over and she collapses on my shoulder, letting out a sob.
This is life with an Alzheimer’s victim.
If you’re the child of two parents with dementia (Alzheimer’s being the worst form), you’re in my shaky boat. It’s a sinking vessel with holes in it that takes all of your energy to keep afloat.
I’m also part of the “sandwich generation”, the middle aged Gen Xers who are raising children while caring for aging parents who are living longer. Dealing with declining parents numbs you to the core, then a little beautiful human thaws your soul and keeps you raw.
It’s a daily roller coaster ride.
I’m a very private person and public disclosure of personal matters has always made me uneasy. The rise of social media catharsis is alien to me. I’m forever the child of wartime generation parents who value stoicism and keeping one’s cards close. However, I feel compelled to speak out on this issue, to share empathy with those in the same struggle, and to raise awareness and encourage people to arm themselves with knowledge.
“Alzheimer’s is a common form of dementia, believed to be caused by changes in the brain, usually beginning in late middle age, characterized by memory lapses, confusion, emotional instability, and progressive loss of mental ability.” – dictionary.com
“Seventy-one million baby boomers are heading for the risk age. It will be the biggest epidemic in medical history,” according to Dr. Rudolph Tanzi, the vice-chair of Neurology and director of the Genetics and Aging Research Unit at Massachusetts General Hospital
According to the World Alzheimer Report 2015, everyday 27,000 new families (one every 3.2 seconds) discover they are now part of a world epidemic, that not too many people discuss outside of the dementia community.
What’s not often talked about is the toll that this takes on the families and caregivers of people with dementia. The burdens of management are staggering on every level.
If you hold a power of attorney, it is an incredibly flawed legal position. There is no government issued card or universal proof of identity. You have to start a new vetting process with every single institution your loved one is attached to. It’s like running a small business at the most trying time of your life. My country Canada and countries around the world need to create a streamlined system for families of Alzheimer’s and dementia victims to assist their loved ones more easily via their power of attorney. This will be a necessity as this health crisis looms.
While taking over financial matters, you may find that your loved one is being targeted by scam artists who prey on the elderly. On the legitimate side of the law, sadly, charities push the elderly to donate, selling contact lists back and forth, with a snowballing effect. My parents’ mailbox still fills every few days. Thinking back on the last few years, my dad’s vague comments about people calling all the time and “wanting money” make sense. I’ve spent endless hours contacting organizations telling them to cease contact.
Getting out ahead of these issues in early stages is critical, before they compound. I wish I had been quicker to respond, but acting on the reality in front of you often comes after a period of paralysis and denial.
I’m fortunate to be self employed and I have an amazing and supportive partner who helps me navigate this ever changing maze while we oversee 24 hour caregivers. I couldn’t do this without her.
Other people in my position often have to quit their jobs to become full time caregivers. The financial cost of care is enormous, draining most families of their savings. This is not a doddery old fart in assisted living – an Alzheimer’s sufferer is a wildly unpredictable person with a degenerative mental disease who needs round the clock monitoring.
The worst cruelty of the disease is that the victim doesn’t recognize they have a problem. Dementia can rob a person of their short term memory and critical thinking, as in my father’s case. Alzheimer’s, my mom’s affliction, often results in extreme paranoia, mood swings, confusion and refusal to bathe, eat, or accept assistance. Death eventually ends the cycle, but the timeline can be long and unknown. The path there is littered with absurd dramas – a progression from simple forgetfulness to more shocking and confounding behavior, driven by a dying set of neural pathways in the brain.
Watching your parent lose mental competency is a terrible journey. You go through an extended grieving process with no closure in sight. It’s like a series of ongoing funerals, saying goodbye to the person you knew in stages. It can test your sanity. An Alzheimer’s victim can behave like a bad drunk, with their character flaws bubbling and exploding unpredictably, a fun house mirror of their lucid self. If you’re the person spearheading the necessary changes in their life, you can become the target of their agitation and abuse. Hired caregivers or placement in a facility can trigger confusion and ferocious tantrums. Staying centered is a daily exercise.
For all that, there are some beautiful moments within the journey. The presence of her grandson will pull my mom out of a spin and fill her face with joy. Like a flipped switch, her mood transforms and she scoops him up into her arms. In clearer moments, she’ll hug me tight and tell me she loves me, that she’s proud of me. She’s more purely affectionate than she ever was before the disease, as if her social constraints have dropped away and her core self is unleashed in all its vibrancy.
There is another strange mercy to having Alzheimer’s. Past traumas seem to recede from daily view. My brother passed away in a car accident many years ago and the ceaseless grief seems to have released its hold on her. I’m not sure she remembers him.
I wait for the day she’ll no longer remember me.
There currently are no cures for Alzheimer’s, no conclusive links to causes as far as I know. Besides funding research, there is nothing to be done but care for the victims and support the caregivers. Be kind to people around you, you never know what enormous burden they might be carrying.
When it comes to this disease, there is only one salve that’s worth anything.