Kathy Ryan speaking at the Sugar Club in Dublin on Monday night during Alz Talks
Readers may recall a video of Kathy Ryan, who has Early Onset Alzheimer’s, with her two sons, Andrew and Matt, in which they appealed for more Government support for dementia care at home.
On Monday night, at a music and spoken word event in the Sugar Club called Alz Talks – organised by The Alzheimer Society of Ireland – people living with dementia and carers spoke of their experiences of living with the condition.
Kathy said the following:
Picture this: You’re standing in your own bathroom, holding one of three toothbrushes in front of you and you have absolutely no idea what to do with it, or what it’s used for, and worse, you don’t even know what it’s called.
Time stands very still and there is just this huge, empty, gaping hole of nothingness and you’re not sure what’s happening, you’re not sure what’s missing or if things will ever be normal again.
This is Alzheimer’s.
Imagine this: You park your car in a local carpark, in your local town. You have your list of to-do’s written down and more importantly it’s in your hand and not left on the kitchen table and all is OK.
Then in the space of a few moments, you get a text message, a friend calls you and someone says hello to you, who you don’t instantly recognise and, in those few short moments, you get confused, disorientated and overwhelmed.
Now you are wondering where you are! Cashel, Clonmel, Thurles… All that should be familiar suddenly becomes alarmingly unfamiliar and you get very frightened.
This is Alzheimer’s.
Later, you do some grocery shopping and someone you know turns their back on you out of embarrassment or possibly fear, so you go home saddened, confused and wondering if it would just be easier to stay inside your front door and give up.
This is Alzheimer’s.
I first began to realise there was something very wrong when I became aware that my sons were regularly finishing my sentences, filling in words as I mimed or gestured for simple objects such as Hoover, mop or keys.
I found myself asking them the same questions over and over again – Do you have hurling today? What day is your match on? When did you say the rugby match was on?
And I was surprised to be met with frustration and confusion as they answered me for the umpteenth time. I was constantly wondering why I couldn’t seem to hold on to simple details or facts.
But at the age of 52, and a busy, single, mom-of-two, Alzheimer’s was the furthest thing from my mind.
Although I was officially diagnosed with this life-changing condition on January 23rd 2014, I had been vaguely aware of issues with my memory for years. In my early 40s I had spoken to my GP who explained the brain is a muscle and that muscle needs to be kept active.
So I did puzzles, learned Cross Stitch, and challenged my brain in new ways.
Life went on and got very busy. I studied and qualified as a Life Coach. My marriage failed, I was a lone parent of two active teenagers, my Mom had died the same year as my marriage ended, after a long and tough struggle with cancer, and finances, or lack of, were always nipping at my heels.
After my Dad was diagnosed with Vascular Dementia, I found some of his behaviours strange and confusing and wasn’t sure how to respond, so I signed up for a Family Carer’s course to learn a bit about dementia.
But as the course went on, I realised to my horror, that I could identify with some of the warning signs myself and actually, was using some of the suggested strategies on a daily basis and had been for a number of years.
I spoke to the facilitators and although they were surprised they suggested I speak to my GP. At the time I wimped out as I felt I couldn’t cope with such a diagnosis. I had enough to deal with and wasn’t sure I could handle this as well. I had to be there for the guys as they were going through some tough stuff.
But as time went on, I couldn’t ignore the fact that ordinary, everyday things other people my age took for granted were becoming a challenge for me – if there was anything, anything at all that I could do to stay well for longer, I needed to do it. The boys still needed a mom.
I found myself doing the same things repeatedly. If I drove to my local town, I would always go for the same car park and hoped the same parking space was free, otherwise I could have trouble finding my car.
I was losing more and more words. I would fill the sink with water and forget about it, food was regularly burned. 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 stall, go completely blank, not an idea of what I was speaking about.
I spoke to my local GP, who knew me well and he was surprised but agreed to do the mini memory test – I failed miserably and so the difficult journey to diagnosis began.
Finally, the day arrived for my diagnosis.
I was brought into a small room with five people and told that I had Mild Cognitive Impairment – that didn’t sound so bad and at least the dreaded A-word hadn’t been mentioned.
It wasn’t until I was in the car park heading back to my car that I met the nurse who had first assessed me and she apologised for not being with me. I told her not to worry, I was fine, and again she apologised and in that moment I realised that either I hadn’t heard something or something had not been said. And so I asked straight out, “Are you saying I have Alzheimers?” And the answer was “yes”! In that moment my world shattered.
I just burst into tears. How could this be happening? How was I going to manage? How was I going to tell the guys that their Mom was slowly going to disappear and that one day – when? next year, the year after, 5 years I wouldn’t know them. And they were still in school and so young!
As I drove to pick up Andrew that day, all I could think about was how I had eight to 12 years before I would begin to disappear, to unravel; to cease being Kathy. My elder son would be out of college, in a relationship and possibly married and Matt would be 25.
I was not at all prepared therefore, when a few weeks later, I asked what the worst-case scenario could be for me, and was told I might not recognise my own sons within three years as I had some other underlying medical issues and that in all likelihood I had Alzheimer’s for some years already.
Alzheimer’s, the silent thief, had stolen even more of my precious time. 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 sons, although young men, they were still so young to deal with a mom gradually disappearing, becoming a ghost, haunting their lives.
My dream had been to go to college as soon as the guys 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. I was a qualified life coach but wanted to work more closely with people who were struggling with life – that was the first dream that Alzheimer’s, the thief, stole from me.
I decided that day 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.
When I finally told my sons they took the news hard. While Matt was upset, at first he thought I would be like Grandad, and so had many years before the condition would manifest. Andrew took it badly. He and I had taken on the world together and he was very angry.
One of the toughest moments for me was when I stood outside his door one day and I heard him say to someone: “If I get into college will Mom recognise me on my graduation day?” 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. My work and volunteering is gone and I sorely miss that, but I can either sit down and feel sorry for myself and be a royal pain for those around me or find something else to do – the choice is mine.
Right now what keeps me going is being a mom and doing advocacy work. I am a member of the Alzheimer Society of Ireland’s Irish Dementia Working Group; I am taking part in research projects and working to create awareness of this condition in order to help others and also break the stigma attached to dementia.
My sons and I made that video about living with the condition which has touched people all over the world and we are very proud to be making a difference. Now that I have spoken out about my condition more and more, people are comfortable around me and more open to hearing that I am still Kathy. I am still me.
What has been very difficult to take is the increasing isolation. Now that the guys are spreading their wings and off living their lives, I find I am faced with what I can only describe as nothingness.
My ability to read is disappearing, as I forget what I have read the page before. I lose the plot of movies and because I am not supported to work, I am finding it increasingly difficult to keep a car going, which gives me the freedom to share both my story and information around the country, to stay socially active (one of the 4 strategies for staying well).
There are only so many times you can clean the house or walk the dogs in a day! There are so many parts of my mind that are still active, so much I would like to do, so much that I COULD do, both for myself and others.
And yet I find myself neither young nor old, neither totally useful nor totally useless and that is where you find a single mom with dementia under the age of 60.
Sometimes I feel like I want to run away – but to where? Once you receive your diagnosis in this country you are pretty much set adrift and that needs to change.
My advice to anyone newly-diagnosed is to think. Although you very much do need to plan for the future, try not to relinquish too much control too early to avoid falling into a dark place, into the nothingness into having no purpose.
Most importantly, as soon as you have any concerns, contact your doctor; don’t worry on your own. For me although it was devastating, it was also a great relief to know there was a reason for why I was doing certain things and that there are things, within my control, that I can do to stay as well as possible for as long as possible.
A Mediterranean diet helps, exercise, challenging the mind and, for me, prayer is hugely important. But what is vital is to keep socialising; don’t back away from it; it is extremely important if you don’t want to fall into isolation and possibly depression.
When I sit and think about my future, it is very scary. But I have a strong faith, my sister who is my best friend, incredible friends, and two sons who I am very proud of.
This condition is not who I have become, it is not who I am. I know hardships are coming, such as not being able to drive and the fact that I may not see my sons graduate or proudly watch them get married. But each moment, I have a choice and I choose to be the best I can today. I laugh, I cry, I feel sad, I get angry. I can sink into that black hole but I have learned that if I work hard at it, it will pass and I try to concentrate on the here and now.
I choose to live.
If I keep focusing on the ugly bits coming down the line, I’ll miss what is important to me today. I will not let this disease dictate to me a moment sooner than it absolutely has to.
A few days after I was diagnosed, I vowed that we would laugh every single day and that I would not sweat the small stuff. So, when I can’t figure out how to empty the hoover or get distracted and forget dinner, I give myself a break instead of getting angry and frustrated. My life has changed but it still has meaning and purpose and I can still love, laugh and even enjoy a glass of wine. I am still Kathy, maybe a little changed but still me.
People have looked at me and said, “You don’t look like someone who has dementia.” But I ask them, “What does dementia look like?”
I am here today to ask you, all of you, if you know someone with Alzheimer’s or dementia, or someone caring for someone with the condition don’t turn away, please don’t avoid them. If you know someone has Alzheimer’s, don’t stop calling around, even if they struggle to recognise you at first. Invite them out for a drink, or a meal, if they are able, or call in for a coffee. We might be forgetful, or get lost sometimes, but that’s okay.
We are still the same person inside.
By you learning a little, you can help us a lot. You don’t need to fear people with dementia or feel embarrassed. You don’t have to know what to say, there is nothing you can say to change our reality. But your company, knowing you are there, it means the world, it is a lifeline.
I am asking you today to forget the stigma but not to forget that people with dementia are still moms, dads, brothers and sisters, and sons and daughters, just like you.
I may not remember what we spoke about or where I met you but I will remember how I felt when I was with you – shunned, shamed, judged, ignored. Or respected, safe, cared for, loved – the choice is yours.
Previously: Alz Talks
Pic: Barbara McCarthy