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The hardest thing about Alzheimer's? Knowing your kids will watch you slowly disappear

Kathy Ryan was diagnosed with Alzheimer’s two years ago, at the age of 53. She writes here about how her life has changed since.

Kathy Ryan

MY JOURNEY WITH Alzheimer’s began with the forgetting of words. My sons finished my sentences for me, filling in words as I mimed and gestured for simple objects: keys, hoover, car.

I found myself standing in my bathroom one day staring blankly at my toothbrush and not knowing what it was for. However, as I was only in my early 50s, and a busy, single mom of two, early onset Alzheimer’s couldn’t have been further from my mind.

I was officially diagnosed with the condition on 23 January, 2014, at the age of 53, but I had been vaguely aware of issues with my memory for years.

During a period of illness in my 40s, as a result of undiagnosed type 2 Diabetes, my memory had become hazier. I put it down to stress. I was a lone parent of two teenagers, Andrew (21) and Matthew (19); my mother had died the same year as my marriage ended after a long and arduous struggle with cancer; and finances, or lack thereof, were a daily challenge.

The undisputed hardest thing about living with Alzheimer’s is the knowledge that your children will have to watch you slowly disappear. The creeping realisation that you may not be present for their major life events – weddings, the birth of grandchildren and graduations – is particularly hard to bear.

My own dream had been to go to college as soon as the boys were finished school. I wanted to get a degree, start earning, financially provide for my future, travel and do things I had only ever dreamed about, but this was not to be.

As time went on, I could no longer ignore that I was finding things increasingly difficult. My life became revolved around repetition.

If I drove to my local town, I would always go for the same car park and hoped the same parking space was free. I was losing more and more words. I would fill the sink with water and forget about it and burn food.

Things had to be in their place or I became frustrated and sometimes overwhelmed. I would forget what I did the day before and sometimes, in the middle of a conversation, I would go completely blank.

I can still see people’s faces grow uncomfortable as I reached for the words that would not come. When my local GP gave me a memory test, I didn’t do well and so the difficult journey began.

Finally, in January 2014, I was brought into a small, stifling room with six people to talk about my diagnosis. It was only as I walked back to my car in a daze and the Alzheimer’s nurse approached me to ask if I was OK that it hit me: I had Alzheimer’s. I just burst into tears.

As I drove to pick up my son that day, all I could think about was how I had eight to 12 years before I would begin to disappear. My elder son would be out of college, in a relationship and possibly married and Matt would be 25.

Come to terms

I was not at all prepared, therefore, when I asked my doctor what the worst case scenario could be for me and he told me I might not recognise my own sons within three years, as I have some other medical issues and may have had the condition for some years already.

I couldn’t believe what I was hearing. I felt as if my life had come crashing down. All I could think about were my guys, although young men. They were still so young to deal with a mom gradually disappearing.

I was not going to go down without a fight. No professional, no doctor can tell me how many days I have left on this earth, only God knows.

My elder son took it badly. He and I had taken on the world together from day one and he was very angry. For years, I have tried to be there for them and suddenly I was, am, going to be the cause of great sadness.

Since then, we have talked through everything, even my funeral arrangements, and how I desperately don’t want them to put their lives on hold to take care of me.

My life has changed a lot. I have a choice to either sit down and feel sorry for myself and get depressed or find something else to do.

Right now that is advocacy work. I am a member of the Alzheimer Society of Ireland’s Irish Dementia Working Group and I take part in research projects to try to create awareness of this condition.

Just recently, we launched a Charter of Rights for People with Dementia, which was a momentous occasion for people like me. I have never seen such compassion, respect, dignity and support emanate from any organisation. I thought when I was diagnosed that life had given up on me, that society would discard me, because I was of no further use.

When I sit and think about my future now, it is very scary, but I have a very strong faith, and surrounded by people I love. This condition is not who I have become, it is not who I am. I know hardships are coming but each moment I have a choice and I choose to be the best I can today.

I will not let this disease dictate to me until I have no choice. I will continue to defy the verdict.

Kathy Ryan is from Cashel, Co Tipperary.

The Alzheimer Society of Ireland is inviting people to hold an Alzheimer Tea Day, supported by Medtronic, on Thursday, 5 May, to raise funds for services which support people living with dementia.

Call 1800 719 820 for an Alzheimer’s Tea Day pack, or see teaday.ie.

Read: “Before this I was a young 69, I was full of life. I’m a world away from that person now”

Read: When pain has no physical cause: The real world of imaginary illness

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Kathy Ryan

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