My father is in his 88th year. That’s how he would have expressed it before, enjoying the mathematical exactitude, the innate cussedness and contrariness of such a statement as well as embracing the notion that years lend gravitas and character.
He was 87 in February this year. As a result of vascular dementia, he is no longer able to walk, sit up, speak easily or feed himself.
It’s clear he recognises those closest to him when he responds to our voices. He smiles or says yes, or thank you or no. Or sometimes, if we’re lucky he’ll say something humorous, such as “no comment” and we’ll know his sense of humour is intact.
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His sight and his hearing have deteriorated to a stage where he is unable to see or hear much at all but when we speak up he can hear us clearly.
We have seen his levels of alertness and awareness rise and fall like the tide. But in general all his faculties have been getting progressively worse for a number of years. He can appear out of it to those who do not know him, but to us, his family, we can see that he is aware and alert.
In the beginning
His inability to function independently began about eight years ago. I remember on his 80th birthday, when his dementia was just beginning to take hold, that he was up and around, strong and cheerful, able to walk and respond and even to sing a verse or two of a song with a bit of help.
He knew us all but he was a little confused and he didn’t recognise nieces or cousins at the party we had to celebrate his great age.
He repeated questions, not registering the information in our answers. Lapses in his short-term memory were noticeable at that party.
As the dementia increased, he sometimes grew restless, wondering where his mother was and wanting to know when he could go home.
“Are you my mother?” he used to ask my mother, who’d been by his side for over 50 years at that stage.
When he became uneasy like that, we would try to re-assure him but often we had to drive him perhaps to the bottom of the village, asking him if he recognised the pier, the pub as we drove by, the houses on the way down and, if we were lucky, that little drive literally down memory lane would help him to recollect where he was and he’d relax and come home with us.
His physical ability has decreased also, step by incremental step, until his ability to walk, to lift a fork, to stand, to drink from a cup, is gone.
These stages happened gradually but incrementally and cumulatively. In particular we saw him decline rapidly two years ago after our mother's death.
Caring at home
During this time, myself and my youngest sister, RoseAnn, have looked after him at home. Like Laurel and Hardy, we've often fallen onto the bed with our father, comical in our attempts to dress or wash or lift him or just to hoist him higher up in the bed so we could feed him his breakfast. We've learned on the job.
Our sister, Miriam, who is a nurse and works full-time, comes to help at the weekends and she is there during the week to relieve us when we need to get away to work, do the shopping or go for a walk.
We are both self-employed and work from home so we’ve been able to be flexible and care for our father full-time.
We get some back-up from the HSE also, which provides us with specialist equipment and supplies as well as about 11 hours’ care a week. This takes the form of funding for a sitting service, as well as the provision of a home help attendant and a home care attendant who calls four days a week to wash and dress our father.
We have a hoist at home for my father now. This allows us to move him from the bed to a chair and to bring him in to the wet room or the toilet.
On a good day, we will get him up and he will sit for a few hours. And mostly he knows us, his three daughters, and the deep manly voices of his grandson, Joseph; his nephew Dónall and his son-in-law, George.
Sometimes he is too weak or weary to know or react. In general, his ability to communicate has decreased over the years, and, at this stage, he is reduced largely to monosyllabic responses, or very short sentences.
As an elderly man with an increasing level of dementia, who is bed-ridden and unable to sit up for himself, he is still a loving, warm, beautiful man who can charm us with a broad smile or a very short apposite phrase.
He is and never was difficult or aggressive. There’s a gentleness, a goodness that emanates from him still and a great love pulsates around him. When I hold his hand, the heat from that hand reassures me that he is there.
I know he was always like this, a very loving, kind, most affectionate and beautiful father. His illness over the years has given us time to revisit our memories of him as a father when we were younger.
On occasion, he used to look at us with pride and declare, “Imagine, ye’re my offspring.” Caring for my father has helped me appreciate how he has been a central, constant presence in my life from the very beginning.
Inevitable end
The weaker he grows and the closer the inevitable end comes, the stronger the tie between us all grows and the lonelier the prospect of life without him becomes.
The heartache that we will lose him grows each day, and we cradle and hug him and know that he will be leaving us at some stage.
This phase of my father's life has been no less important and vital to us than his life as a younger man, when he was a vibrant, vigorous father who loved to converse with us through Irish, who taught us to swim, who used to ask me sometimes to explain the idea of poetry to him, who tussled with Dickens and other weighty tomes, who wrote down stories in little copybooks and diaries but was never published and who buried his head in The Irish Times reading all the political stories, editorials and commentary in particular every Saturday and Wednesday when his brother's columns used to appear.
Another level
Since his dementia, I have come to know him on another level: as a human being where there is no ego, only vulnerability and dependency, love and gentleness. To have him present with us has enriched our lives, even as we struggle with the need to prepare for his leaving us.
And wonder of wonders, we still see flickers of his personality. As my sister went to steady him from falling backwards, he remained calm.
He was still able to speak easily then. “Just a temporary re-adjustment,” he said, without batting an eyelid.