I WAS DIAGNOSED with younger-onset Alzheimer’s at the age of 53.
My dad had vascular dementia and I was doing a course run by the Alzheimer Society of Ireland, to help me understand some of his behaviours, when I realised that not only was I experiencing some of the symptoms being discussed, I was already employing some of the coping strategies including keeping a diary and using a whiteboard.
I had a very negative view of Alzheimer’s and for some months I tried to bury my head in the sand. But as time went on I couldn’t ignore the fact that I was finding ordinary, everyday things a challenge and so my journey to diagnosis began.
Following my diagnosis in January 2014, some of my feelings were grief, anger, sadness, fear, devastation and hopelessness. I felt a sense of walking in fog but also in among those feelings was a sense of relief that there was a reason why I did some of the things I did.
My two sons were still in school at the time. Andrew was doing his Leaving Cert and Matt was in fifth year and I chose not to tell them until after Andrew’s Leaving Cert exams. Those were six months of broken conversations, sleepless nights and wet pillows, feeling sorry for myself and very afraid of the future.
Gradually the old Kathy kicked in. I started to ask myself what I could I do and what attitudes or behaviours did I need to change.
I wondered whether my faith was strong enough to sustain me and I had to consider what example I wanted to set for my sons too.
I made a vow that instead of counting each day I would make each day count.
But one of the hardest things I have ever done was telling my boys that I had dementia. To know that I was going to bring such hardship and sadness into their lives was, and is, difficult.
The guys are now 22 and 24 – they are living their lives to the full and I am so proud of them. They know that they honour me in being the very best version of themselves.
I was encouraged to give up work (which I now think was a mistake) and I found myself with empty days to fill. So I was blessed to find the Irish Dementia Working Group which is supported by the Alzheimer Society of Ireland.
This group has given me back a sense of purpose, a reason to get out of bed on my not-so-good days. I have met the most incredible, inspirational people who are working hard to change the face and journey of dementia not only for those of us living with dementia but also for those who care for us.
In terms of care for people with dementia, I have witnessed pockets of excellence in this country but also, sadly, black holes of nothingness after diagnosis.
I believe a person living with dementia and their family are best cared for when the local community is involved through awareness, staying connected, support groups, a helping hand and in short, basic kindness.
With 11 people a day being diagnosed with some form of dementia in this country, we need to break the stigma and get real about this disease; it’s rare to find a family who hasn’t some connection to someone living with dementia.
Our government should be doing more to recognise the need for funding for timely diagnosis, post-diagnostic supports and services for everyone with dementia.
There should be support as well for those carers who are often working 24 hours day, seven days a week, sometimes getting little or no sleep at night.
I know that my dementia is progressing. I am having issues with swallowing, stairs can frighten me and dark flooring makes me feel like I’m going to fall into a pit.
I need to constantly concentrate or mistakes happen and this is exhausting. Each day now feels like walking in a minefield but I still choose to focus on what I can do rather than what I can’t.
I like to get out and about – that’s why I walked the Camino last year in a fundraiser organised by the Alzheimer Society of Ireland and I am hoping to do it again later this year.
Taking part in the Camino was a dream come true. I thought my chance of doing something like that was over. It is amazing that I had the opportunity to take on that challenge and carry a banner for all people with dementia on that epic walk.
I was eager to show that my condition was not a barrier to doing the things that others can do.
My experience is that the vast majority of people diagnosed with dementia want to live in their own home and stay active in their own community. In order for this to happen, we need our communities to become more dementia aware.
That means we need the community to open its arms to people with dementia.
That is why initiatives like the special garden for people with dementia at this year’s Bloom Festival are so important.
The Memories Are Made Of This garden creates a space where people living with dementia can reminisce in a welcoming and supportive way.
Families from the Bloomfield Social Club in Rathfarnham in Dublin were involved in the concept of the garden which is a wonderful touch.
A garden is a wonderful amenity that provides a tranquil, peaceful and a safe place to go for people with dementia and their families.
I love to spend time in my own garden as well. I try to plant some flowers at home myself and I really see the value in whiling away a few hours in that safe and secure environment of the garden.
To just sit and be still and to potter for an hour, when the weather is good, is just so very powerful and fulfilling.
People with dementia and their families are being encouraged to visit the 1950s-themed garden, called Memories Are Made of This – in the Bloom Festival, in Dublin’s Phoenix Park from 30 May to 3 June.
The garden is a project of the Dementia: Understand Together campaign and aims to create a positive and enjoyable experience for people with dementia by rekindling fond memories. See here for tips on stimulating reminiscence in your own garden.
Kathy Ryan is the Vice-Chair of the Irish Dementia Working Group which is supported by The Alzheimer Society of Ireland.
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