Some 40,000 people in Ireland are living with Alzheimer's disease - an illness that demands 24-hour care. Sylvia Thompson reports
Remembering things, people and places is so central to living that when you lose your memory, your life literally begins to fall apart.
Yet, memory is a fickle thing: we all forget things from time to time and one of the great difficulties in achieving an early diagnosis of Alzheimer's disease lies simply in this fact: Forgetfulness can be a normal everyday phenomenon but it can also be the first sign of this progressive, degenerative brain disease which affects up to 40,000 people in Ireland.
Jean Nolan-Behan (48), who is the full-time carer of her 77-year-old mother, Bridie, now in the latter stage of Alzheimer's disease, says that in the early stages, family members would "give out to her for forgetting things".
"At the time, she was living with my dad who looked after her until he died in 2000. Now, looking back, I don't think we realised how frustrated he got looking after her."
A fear of the unknown and a lack of information on Alzheimer's disease are commonplace and providing information for patients and families is a crucial area of work for the Alzheimer Society of Ireland.
The experience of not recognising early symptoms is often compounded by a characteristic of many Alzheimer's sufferers to 'perform well' for doctors or other health professionals, leaving carers more frustrated in their attempts to find out what's wrong with their mother, father, husband or wife.
And, most significantly, once a diagnosis of Alzheimer's disease is confirmed, the emotional and physical burden on the carer is arguably as difficult as the progression of the disease on the sufferer. For this reason, the Alzheimer Society of Ireland is taking 'Give Carers a Break' as its fundraising theme this year.
Jean Nolan-Behan clearly has a very loving relationship with her mother and is entirely committed to looking after her every need. Yet, she also recognises how her life changed forever with her dying father's parting words, "look after your mother".
In the first months after his death, Jean took her mother to live with her and her husband, John, but as Jean explains, she 'just wouldn't settle down'. So within six months, Jean and John moved back into the family home to look after Bridie in her own familiar surroundings.
At the time, Jean was working night shifts in the HB Icecream Factory in Rathfarnham, Dublin. So, she spent her day with her mother - leaving her into a day care centre from 9.30 a.m.- 2 p.m. and later working from 9 p.m. until 8 a.m. Over the following two years, Jean came to realise she couldn't continue like this.
"It reached a point when I could no longer cope. Bridie became very agitated and she would never stop walking. At night, she would sleep for about one hour so she needed 24-hour attention."
John and Jean exchange glances and hold hands as they remember this extremely stressful time. "I was arguing with her and then I was arguing with John," Jean recalls. "I didn't trust anyone to mind her. Nobody could do things like I did to keep her looking so immaculate yet I couldn't cope."
At around this time, Jean was diagnosed with clinical depression. She was prescribed anti-depressants by her GP and sent for counselling. "Bridie was crying and sad at that time and I was crying as I felt I wasn't doing enough for her. There was a lot of anger - I was angry with God - I thought it was very unfair that he could do something like this to her... she was such a gentle, kind and softly spoken lady."
Soon after, Jean took a redundancy package from her job and became her mother's full-time carer (earlier she had been given the 'enduring power of attorney' which involved the transfer of all legal responsibility from her mother to her). She also availed of respite care for her mother for the first time.
"I'd been minding her for two years before I let her go for respite care. I went away for a week with a friend while she was there so I wouldn't be tempted to go in to see her," says Jean. Over the following 18 months, Jean found the experience of leaving her mother into respite care extremely traumatic, partly because she believed the level of personal and intimate care given to her mother couldn't match the care she gave her.
Lately both Jean and John have become happier about leaving Bridie in for respite care when they go on holidays. Now in the latter stages of Alzheimer's disease, Bridie is quieter during the day and sleeps for up to 12 hours at night.
"Every morning, we get a beautiful smile from her and sometimes she will say 'good morning, I love you'. Bridie has taught me that you can do good and feel fabulous doing it," says John who, together with Jean, often leads the elderly lady down the stairs every morning for breakfast.
Their biggest concern now is to build a downstairs bedroom for Bridie as she becomes increasingly incapacitated. They also would like there to be more home-based support for carers.
"I've accepted it now. The sadness has gone but for two years, I prayed to God to take mammy. Now, I just want her for as long as possible," says Jean, adding that she would advise other carers to find someone to talk to about their situation and "not to be afraid to cry".
"The most important thing is to be patient with them and to give them love," she advises to those caring for Alzheimer's patients.
Meanwhile, Bridie lives a quietly dependent life, calling out from time to time to people from her distant past. Like many other Alzheimer's patients, her days are numbered yet she could live for years.
- The Alzheimer Lyons Tea Days fundraising campaign takes place between May 6th-8th. This year's theme is 'Give Carers a Break'. To obtain your free Lyons tea pack for a workplace or home fundraising event, tel: 1800 946301. The Alzheimer Society of Ireland national helpline number is 1800 341 341. See also www.alzheimer.ie