Jane’s Urgent Christmas Appeal

My name is Jane O’Sullivan, and I am writing  with a request that’s very dear to my heart. I would also like to take the chance to tell you about my husband, Donie.

I met Donie in 1966 in Australia, where I’m from. We met in a café late one night after a dance and got married in Melbourne a year later. Donie said we’d just go back to Ireland to start a farm and see if I liked it or not. It’s been 47 years, so I must have liked it all right!

Since the day I met him, Donie and I have had an incredibly strong love and companionship. Donie loved his family and his farm, and could learn just about any trade he needed. He built our first house on his own. As he’d tell you himself, he’s a chancer.

Then a few years ago, things started to change. Donie seemed to be living only in the past – like the present wasn’t of great importance to him. The signs were small, but the children and I noticed. Our GP suggested Donie go for tests.

I’ll never forget the day Donie was diagnosed.

After he’d had an MRI, he walked straight in and said to the doctor, ‘Do I have Alzheimer’s?’ It was the first time I’d ever heard him use the word. The doctor said, ‘Yes, you have.’ It was an absolutely devastating moment. With that sentence, we knew our lives had changed unbelievably.

We’d found a problem Donie couldn’t fix, no matter how hard he tried. You know things have changed for the person with Alzheimer’s, but your own life changes unbelievably, too. The whole implication of being a wife changes completely. We were retired, and we had plans of what we were going to do in our retirement. That all fell apart.

We live in Kerry and our children all now live far away, some even as far as Australia. They are always in touch and come home as often as they possibly can but it is difficult. In rural areas like ours there is very little support or help available for people living with dementia.

Without the help of The Alzheimer Society of Ireland (ASI), I don’t know how Donie or I could have coped.

It’s been five years since Donie’s diagnosis now, and I’ve been his main carer during that time. This can be extremely challenging, as anyone who’s cared for someone with dementia knows.He has good and bad days, and I try to let him be as independent as he can, but he needs constant supervision. He can be disorientated, emotional and on edge. Sometimes Donie’s aware of it, and he’ll say ‘I don’t know what’s happening. I don’t know why I’m like this.’ It’s been a horrible experience.

I sometimes feel as though I’m living two lives, mine and his both.

One of the main struggles has been loneliness. I don’t think anything can prepare you for the isolation. We live a kilometre from our nearest neighbour, and over the years, as our situation has become more complicated, friends have fallen away.

Donie will sit in his chair, and I’ll sit in mine beside him, and there’ll be no conversation between us. All of that is gone. I feel that I’ve lost my husband, and I miss him.

As Christmas comes around this year, I find myself dreading it. Donie used to love Christmas. He was always in charge of bringing home a tree, but his work on the farm was so constant that he’d leave it to the last minute. I remember one year, he brought home a patchy one, and the kids all complained.

Donie said, ‘I’ll fix it!’ and started cutting branches off from the thicker places and tying them round the bits that were spare, and soon we had a tree everybody was happy with and we all started decorating.

I don’t know what is going to happen this Christmas. We can’t have a big family Christmas at our house this year because Donie just can’t cope. My daughter Grainne will have it at hers instead. I hope myself and Donie will be able to go. But I’m not sure. It might depend on how he is on the day.

I first contacted the Alzheimer’s Helpline immediately after Donie was diagnosed, and it was the best thing I could have done.

My head was in such a whirl, thinking ‘What does this mean? How am I going to deal with this? How can I get help?’ It was so important to be able to talk to someone who understood and could help.

The ASI has provided carers to come into our home so I can go out to the shop or just take some time for myself. They have become more than friends – they’re part of the family now. They’ve promised that they’ll be with us for the long haul, and that means so much. Without them, I would never get past the door.

The ASI has so many resources for families like mine, and over the years, they’ve made me feel like a weight has been lifted from my shoulders. From Dementia Advisers to the helpline, from community events like coffee mornings to the practical and emotional support of the carers network, everything they do makes you feel less isolated and alone.

I was recently able to take a carers’ course offered by The ASI, and it was just wonderful to talk to people who are going through similar situations.

The ASI also made it possible for Donie to attend eight weeks of cognitive stimulation therapy. This was so beneficial for everyone. During this hour, all of the carers got together for a coffee and chat, and it was something we all looked forward to.

The support we have received has made such a difference. That’s why, in September of this year, my son Dominic came home for Australia and together we walked the Camino to help raise funds for The ASI.

But I know that there are still many other families who need help.

That’s why this Christmas Appeal is so vital for The Alzheimer Society of Ireland and for families like mine all over Ireland.

Living in rural Ireland is especially difficult for families caring for someone living with dementia. That’s why The ASI is so wonderful. Because the vital funds that you help to raise are used to support services in local communities around Ireland.

Amidst everything, there have still been some good memories. Donie was able to attend both of his son’s weddings, which we weren’t sure would be possible. The most recent one, last October, was such an undertaking that when I got him into the church, I just collapsed into a pew and cried. But when our son John saw that we’d made it, he had the biggest smile. A few weeks ago, Donie also got to meet his two-week-old grandson in Cork. These moments have been so joyful.

It’s difficult to imagine what the next years will look like – but I know we will manage with the invaluable support of The ASI, made possible by the generosity of people like you. We will keep taking one day at a time.

By giving what you can today, you are making every single one of these days better – or even possible.

This is a true gift, and it’s one that I’m grateful for every day.

Thank you so much for taking the time to read this letter. And thank you for everything you have done for The Alzheimer Society of Ireland and for families like mine.

And may I wish you and your family a very happy Christmas.

From Donie and me.

Jane O’Sullivan

P.S. The support my husband and I have received from The Alzheimer Society of Ireland has been crucial. Please consider a gift this Christmas to other families to provide vital care and support along their journey.

 

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Alzheimer National Helpline

The Alzheimer Society of Ireland National Helpline is open six days a week Monday to Friday 10am–5pm and Saturday 10am–4pm on 1800 341 341 or helpline@alzheimer.ie

Helpline Christmas Hours

Monday, 23rd Dec – 10am to 4pm
Tuesday, 24th Dec – closed
Wednesday, 25th Dec – closed
Thursday, 26th Dec – closed
Friday, 27th Dec – 10am to 4pm
Saturday, 28th Dec – closed
Monday, 30th Dec – 10am – 5pm
Tuesday, 31st Dec – 10am – 5pm
Wednesday, 1st Jan – closed

 

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