Get stable, take breaks – Alzheimer care times two

Monica Walker always has a bright smile and a witty response. Her energy is infectious and she gives the impression of being the kind of person who can survive anything life throws at her and still look awesome.

And now she’s being tested. Monica, like many women, is providing care for more than one family member with dementia.

In 2010 she moved her Dad from Ajax to the Riverstone Retirement Residence in Bancroft where he lives comfortably with additional help in place to support his dementia diagnosis.

“It was all about his safety and my sanity,” Monica explains.

Monica believes the move has increased her Dad’s quality of life. She calls and visits often and there is help from the CCAC for his medication reminders.

As an only child, the complete care for her father, a widower, fell squarely on her shoulders. But then Monica started to be concerned about her husband.

“We knew something was not quite right and then that something had a name,” Monica sighs, the smile gone for a brief moment. “That’s when we started the doctor dance.”

And now much of Monica’s time is spent acting as the dry cleaning fairy for her father and making sure her husband, still living at home, has a great quality of life. This is not the retirement Monica imagined for herself.

Monica’s husband can’t drive anymore and that has been a big loss for him. As a result, Monica is always available to take the wheel and make sure everyone is where they need to be when they need to be there. She’s an organizational genius and her new car purchased at the end of October already has well over 4,000 kilometres on it – a care giving reality in our rural community.

“My life is not my own,” Monica says.

But she’s doing what she can to stay on top of the load and not get hit by caregiver burnout and part of that involves connecting with the Alzheimer Society in Bancroft.

“It’s important for me to be with people who understand the story,” Monica explains.

The story is one that features chapters that start before other chapters end. Everything becomes a management project and through all of the craziness there is loss and grief.

“I miss the partnership that I had with my husband,” Monica admits. “And I worry about who will do this for me?”

This is an urgent question that needs to be asked by everyone planning on living in this rural community as they age and as the likelihood of receiving the diagnosis or caring for a loved one with the diagnosis increases year to year. There are not enough supports in place to provide all the care people need and Monica is aware of this lack of programs and services. She is thankful for having financial resources, a pension and some savings to manage everything but the emotional toll is something that financial savings will never take care of.

With the exception of our local Alzheimer Society that is staffed by one person, once a diagnosis is made, you’re on your own. The sad reality is that North Hastings is lacking in any kind of specialized housing for those with this terminal disease. We have minimal access to Adult Day Programs and even Long Term Care beds are scarce. Community Care Access Centre provided home support is limited and unstable with scarce home care dollars being shared between a large number of people in need.

It’s a mess but Monica is determined to get through and make everything work.

“I have good friends who understand what is happening,” Monica says. “Friends and family are stepping-up so that I can get away and have a break.”

And then there is tennis. Monica plays tennis as much as she can.

“Sometimes I get depressed but then it passes and tennis helps,” Monica says. “It’s hard. I’m doing the boy jobs like starting the generator, the banking, all the things that my husband liked to do.”

Having been on this journey for a number of years now, Monica suggests the following to anyone who thinks their loved one has Alzheimer’s Disease.

“Make the call and get a diagnosis,” she says. “Then get stable, take breaks, plan for the worst and hope for the best.”

On Saturday Jan. 31, the 5th Annual North Hastings Walk for Memories will be hosted at the North Hastings High School from 9 – 1pm. The event is an opportunity to raise awareness, not only for those with the diagnosis but also for those who provide care to their loved ones. This is the biggest fundraising event for our local Alzheimer’s Society and all dollars raised stay in North Hastings.

With your support, no one in North Hastings will face Alzheimer’s Disease alone.

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