SPECIAL REPORT: Dementia in Ireland - Personal stories from people affected
I had a wonderful life... and then I got Alzheimer’s
My journey with Alzheimer’s began, as it does for so many, with the forgetting of words.
I would find myself in a constant cycle of stopping mid-sentence, wondering what I was about to say, hesitating, and then covering up. Soon I began to forget appointments or would find myself sitting in meetings and having no idea what had just been discussed.
When it began to take me three days to write something that would have previously taken a couple of hours I knew I could no longer put it down to those benign, absent-minded mishaps we fondly refer to as ‘senior moments’.
I had a wonderful life, full of love and work and happiness but, following my diagnosis of younger-onset Alzheimer’s in September 2012, when I was 61, life’s journey came to a sudden and abrupt halt.
I am now one of 48,000 people living with a diagnosis of dementia in this country — 4,000 of whom are under the age of 65. The numbers with dementia are expected to double in 20 years and treble in a generation. Against these troubling figures, there is also an equally troubling backdrop of prevailing stigma that shrouds the condition in myth and fear, and unnecessarily worsens the burden of carrying it.
I feel very strongly about advocating for a better understanding of Alzheimer’s and the related dementias — the typical image of the older person in the nursing home, sinking into a decline, is very far from the whole picture.
There are significant cohorts of people, many younger, with dementia who are dealing with it, living well and continuing to hold down jobs, just as there are a significant number who are at a later stage of their journey and need greater levels of support.
I had a wonderful career and an active life but the diagnosis meant I had to come to terms with the fact that life would never be as it was. For a whole year I spent nights doing nothing but staring at the bedside clock wishing the blackest hours would end, or quietly climbing out of bed so as not to disturb my husband Sean when sleep just would not come.
There are times I wished I had been diagnosed with cancer instead of dementia because I know that people would treat me differently.
I know they’d want to go and do walks for me and I know they’d want to stick on ribbons and I know they’d want to come into the house and talk to me. However, the reality is that people look at Alzheimer’s in a different way, with fear and misunderstanding.
I’ve always been a community activist, no matter where I lived, and human rights have been very much to the fore for me. I’ve been an advocate for as long as I can remember and now I find myself fighting for my own rights and for the rights of everybody with this condition.
There’s nowhere for people with dementia under the age of 65 to turn, especially if you want to get on with your life, and continue working. Unfortunately, because I didn’t know how to handle my diagnosis, didn’t know where to turn, I gave up my job immediately even before my official diagnosis. I threw in the towel before it was necessary to do so.
Now I know that, had the correct supports been put in place for me, I might have stayed where I was for a lot longer.
It must be said that Alzheimer’s tests friendships to the limits. Some friends will stick with you, but I’m afraid most leave you and they leave you with a feeling of isolation. This is why I agreed to take part in a very visible campaign to fight stigma with the Alzheimer Society of Ireland this month and I was greatly heartened to see that the numbers of people signing up are increasing every day.
People with dementia need to have their basic human rights met. Whether a person is under 65 or over 65 shouldn’t really matter; what is of critical importance is that their condition is taken care of, and that is not happening now. So I want to see that change.
I want the State to honour the fact that if we want to live and die with dignity in our own homes then we need to be supported to do just that. We want to see dementia- specific homecare packages made available for our carers, we want to see a national dementia strategy, so hard fought for, fully implemented so the 4,000 people who will develop dementia in this country next year will have clearly defined pathways of care in place.
I will continue to advocate for dementia awareness for as long as is possible. As advocates, we’re creating a better quality of life that, some day, we will all benefit from.
Seán's story: A journey that will knock you around viciously
My mother Debbie was diagnosed with younger-onset Alzheimer’s disease almost nine years ago, when she was just 50.
I will always remember the August Bank Holiday weekend when we received the diagnosis, yet at the time I was still none the wiser as to what Alzheimer’s was.
It was a condition that I had never heard of and, in all honesty, it was something that didn’t really worry me. I could not have been more wrong.
Those of us intimately familiar with the condition will liken it to being on a journey. This journey will knock you around so viciously that you are faced with a choice — give in or fight on. Of course, I am speaking from the point of view of a carer, and do not for a moment pretend to understand what it is like for the person with the condition. That is why my admiration grows for my mother every time I see her, dream about her, and see her magical smile.
As I became more familiar with Alzheimer’s, I made my choice. I choose to fight. Although I say that this was my choice, it was heavily influenced by witnessing my mother’s struggle with this illness while also trying to protect her family from it.
There are no words to express my admiration for her and the courage and strength she displayed. I will always advocate for people with Alzheimer’s and carers, because it is something that has changed my life in a way I could never have imagined.
I always try to look for the positive side of this rollercoaster journey that my mother and I are on — that is something that I have learned from her. She never asked the question ‘why me?’ never got angry with me when she felt things slipping away, and never shut me out.
However, I often saw her cry when she thought I wasn’t looking. I can only imagine what was going through her head. At first, I felt awkward witnessing my mom crying and didn’t know what to do until one day I just sat and cried with her. And we did cry, tears flowing down our faces and hugging each other like never before.
I never felt so close to mom than I did then and throughout this journey we have become even closer. I used to be too shy to tell her that I loved her, but now I tell her every chance I get. I suppose when people are faced with Alzheimer’s it gives you an opportunity to tear down the barriers that held you from showing your true emotions, because truthfully you don’t know how long you have to express them.
Unfortunately, there are some terrible moments of despair when caring for a loved one with Alzheimer’s. Slowly watching my mom slip away in front of my eyes makes me cry whenever I dwell on it.
While watching her become confused in her own home was heartbreaking, watching her become unsure of who I was crippled me. But again, you keep going. You have got to keep fighting because nobody else will. I have learned this lesson from the best, my mom.
We live in South-Kerry, one of the most beautiful parts of the world, and yet it often felt like the darkest place on Earth. There is a severe lack of services in the area for a person such as my mother. Every service that we have availed of has been amazing, caring, respectful, and loving, yet there are no age-specific services for someone my mum’s age in the region.
Keeping the mind stimulated is a massive goal for a person with dementia, yet the only services available to mom are aimed at much older people.
There is definitely a lack of knowledge among the public about dementia which adversely affects how a person with dementia is perceived. And, in all honesty, if mom had not been diagnosed with Alzheimer’s, I probably wouldn’t have much of a clue about it either.
However, it upsets me when I think of some of the treasured gifts that my mom has lost through the public lack of awareness about dementia. She has lost friends, many close friends, and she gave up on so many of her hobbies because she didn’t feel welcome anymore. There wasn’t enough support to help her adjust to the changes that she was facing.
However, she kept going and that’s what we will continue to do together. I purposely focus on the positives because it is the only way I can carry on. I have cried so much because of this illness and I still cry because of it, but I think that is a good thing. It’s a sign of strength, not weakness, and that is another amazing gift that my mother taught me.
I owe so much to her because she has helped me become a better person while facing the biggest challenge of her life. She hasn’t given in to dementia and neither have I. She is my hero and the inspiration for everything that I do. My mother is not a person dying from Alzheimer’s disease; she is a hero living with it.
