Mario

HERE ARE MY TIPS TO HELP YOU UNDERSTAND:

1. Focus on my abilities.

2. Dementia can be a long journey. Please be patient with me.

3. We can live positively after a diagnosis.

4. People with dementia have a voice.

5. Become informed. It is the best way to reduce stigma.

I was 57 years old when I retired from a telecommunications company as a Data Analyst in 2007. A year later I was diagnosed with vascular dementia and possibly Alzheimer’s.

I was already aware of what Alzheimer’s disease was, but when my neurologist told me that I had the illness, I felt like he had suddenly hit me in the forehead with a rubber stamp with a “Best Before Date” marked on it. He told me that Alzheimer’s is a progressive disease and that there is no cure for it. And that I needed to make plans for the future.

When people tell me that I do not look like I have Alzheimer’s disease I do not know how to respond because they do not see my struggles. They do not see that the simple act of preparing a meal can be life-threatening because if I forget that I am cooking I could burn my house down. They do not see that I often eat spoiled food from the fridge because I do not know how long it has been there. They do not see that I need constant reminders because my short-term memory loss causes me to forget what I started or where I will be in the next few minutes. They tell me to make a list, but they do not understand that I forget that I have a list.

I want you to imagine something. Picture a father caring after a five-year-old child. He wakes him up, helps him brush his teeth, gives him his bath. He puts on his shoes and ties the shoelaces and buttons his shirt and combs his hair.

Years pass and the child grows up and has a family of his own. The father is diagnosed with dementia: Now the role of parent/child is reversed. The father acts like the five-year-old child; the former child now an adult gives his father a bath. He helps him brush his teeth, ties his shoelaces and buttons his shirt and combs his hair. This is the cruelty of dementia.

I am one of the fortunate ones who decided to seek a diagnosis as soon I felt the need. There are now thousands of people who are in care homes with advanced Alzheimer’s and the cost to the family and to the government is staggering. The number of people who will be diagnosed with Alzheimer’s increases exponentially, double or triple in the coming years.

You might think that it does not affect you. Chances are that several members of your family are part of the Baby Boomer Generation. They were born between 1946 – 1963. You might have grandparents or parents who are part of this group. There is a very good chance that if one of your relatives is stricken it will drastically change your financial and social situation.

And because of the stigma associated with Alzheimer’s, you quickly discover who your true friends are.

I think of my brain cells like the twinkling stars. They are beautiful and bright. And as my dementia progresses, there will be less and less of them. But I will still be here, doing my best, contributing to my community, playing an active role with my family, and best of all, enjoying myself.

HERE ARE MY TIPS TO HELP YOU UNDERSTAND:

1. Focus on my abilities.

2. Dementia can be a long journey. Please be patient with me.

3. We can live positively after a diagnosis.

4. People with dementia have a voice.

5. Become informed. It is the best way to reduce stigma.

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Comments

Thank you very much for this information. I found it to be helpful in understanding how other people are dealing with dementia. In my case, I have a very supportive family and we deal with life one day at a time. I look forward to any further information you may supply as we deal with this disease.

– Roger


Media

March 11, 2018: Brain Health Week 2018: Mario’s three keys to living well (Alzheimer Society Blog)

January 11, 2018: Fighting the stigma – what it means to live with Alzheimer’s (video via Global News)

January 10, 2018: New campaign to destigmatize dementia (video via Global News)

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