My Journey with Dementia - A Personal Story

By Mary McKinlay

 

In 2006, I went to our family doctor after not remembering how to put my dentures back in my mouth.  I told him about the confusion I had been experiencing for several years, and that it was getting worse.  After a CAT scan and testing, I was informed I had Alzheimer’s.  I was started immediately on Aricept, and several months later the drug Memantine was added.  The combination of these two drugs is letting me live an almost normal life.

My husband Jim and I spent hours researching on our computers to learn all we could about the disease.  We found a chat room online where I was able to chat to others on this same journey.  I found out that indeed I probably had many good years ahead of me.

I started keeping an online journal so I could share with my family and friends on how I was doing.  My website, located at www.jim-mary.com, is now full of lots of helpful information as well as my journal.  I have between three and five thousand visitors to my website each week.  Hopefully they are getting some help there.

MAREP has been instrumental in creating a day of sharing for people with dementia and their care partners for the last few years.  I have been very fortunate to have been able to attend five of these Changing Melody forums so far and have actually been a keynote speaker at four of them.

Over the past six years, Jim and I have discovered lots of neat tricks to make our life work with my changing brain.  We now use headphones when watching TV, so when I've had enough input to my brain I can take my headphones off and enjoy the quiet.

I have earplugs I can use when we find ourselves in a noisy environment.  And when we're with a group of family or friends, we know that sometimes we need to find a quiet spot for me for a brain break.

I can still do most of the meal preparation, however usually use the slow cooker or microwave, and things don't get forgotten on the stove.  The use of a small food chopper solved my problem of getting my fingers in the way of the knife.  I seem to now have a one track brain, so I would concentrate on what I was cutting, and not where my fingers were.

Sometimes I struggle with having to make decisions, and in the mornings trying to decide what to wear uses up a whole bunch of brain power.  I've discovered if I hang my slacks and blouses on hangers in sets, I am saved having to make a decision.  I just grab any hanger and I'm ready to go.

While chatting with folks in the chat room, many times caregivers expressed their concerns because when they tried to continue on with their usual activities, their loved one ended up getting very anxious and upset, and the only way they could do these things was to use anxiety drugs to keep them calm.  We're finding that we have had to make major changes in what we do, and can't continue doing everything we used to enjoy doing together.  I think people will get more enjoyment out of life if they realize they have to adjust their thinking and their lives.

So my advice to you is.....KEEP IT SIMPLE.  Make changes as needed as the brain changes.  ENJOY EACH DAY AS BEST YOU CAN!!!

 

 

For more information about Mary, please check out her online journal www.jim-mary.com  or you can see a video of Mary sharing her personal journey on the Alzheimer Society of Ontario's website at http://www.alzheimer.ca/en/on/We-can-help/Resources/Video-Library/Benefits-of-early-diagnosis/Mary-McKinley