EULALEE THOMPSON
PAIN NOW sits menacingly in the space where only Dundeen Ferguson's heart used to live.
"It's painful when I look at my once vibrant mother and now her memory is gone and the behaviour change; it's sad. Now she's like a child, mommy is wearing pampers, she's like a baby," said Dundeen, a busy Kingston-based attorney-at-law.
Her mother, Ruby, now 75 years old, was diagnosed by doctors in Canada (where she has been living for some time) with Alzheimer's disease in 1999. She was 69 years old at the time of diagnosis. Dundeen said that the news hit her and her five siblings "like a storm".
"Mommy's decline was rapid after her diagnosis. She was diagnosed in 1999 and by Christmas 2000 she didn't know who I was," said a tearful Dundeen.
Though she bravely continues her normal daily routine, here in Jamaica, while her mother is surrounded by the care and affection of four of her children, who also reside in Canada, the menacing and nagging pain just won't go away.
PAINFUL CHOICE
"The last meeting with doctors at the home (for Alzheimer's patients) in Canada, they said that we need to discuss whether to keep mommy at level 4 (keep her alive no matter what) ... with her age, and condition, she may come out in a vegetative state with continued CPR (cardio-pulmonary resuscitation) ..." said Dundee. "We are grappling with whether to move her down to level 3 (no CPR, but take her to the hospital when necessary) or level 2 (where no artificial means are used to keep her alive)."
Keep mommy alive, though she is at the severe stage of Alzheimer's disease - is not walking, movements are minimal, is very quiet, with fewer responses to environmental cues - or take the decision the doctors seem to want to take and allow her to go peacefully without artificial intervention. It is a tough decision. It is lingering in torture and pain. Dundeen and her siblings don't want to make the call. But by not making the decision, they seem to have already made it.
"We want to keep her alive by whatever means, we don't want to let her go. I don't want to let her go. If she's in pain, you don't know, because she doesn't say, but seeing her alive is a plus for me," said Dundeen.
Ruby had started to show symptoms of Alzheimer's disease about one year before she was diagnosed, but back then, in 1998/1999, her children didn't recognise the disease's trademark; they just thought their mother was getting old. They noticed their mother's memory loss, she started misplacing things and she would say things that didn't fit into the conversation. However, the turning point was when she started to say that the people on television were watching her. That startled the family and they decided to take her to see a doctor. Then the diagnosing and the new life with Alzheimer's disease.
"It's demanding (caring for her). Getting her to bathe is difficult, because she doesn't like anybody to touch her, but she still knows how to use the bathroom and we still have to watch her. She got loud, and mommy is usually this quiet person. She also started hiding stuff and we caught her one day with a cup full of dishwashing liquid and she thought it was water, so we had to modify our whole living arrangement; our lifestyle had to change," Dundeen recalls as her mother's health declined over the last six years.
There was also an occasion when she went missing in Canada and was found sitting on the steps of a house she believed to be one of her son's residence. After that, the children had to put new security locks on the doors to prevent her wandering off.
Ruby has been living in a home in Canada for the last four years, the doctors can't say when, but they believe any time now she will go.
If allowed, pain can break the human spirit or empower it - propelling it to a higher level of being. Dundeen chose empowerment. She is reframing her experience of pain, finding a transcendent meaning. This meaning is leading her to form a support group - Alzheimer's Jamaica - for relatives and caregivers of persons with Alzheimer's. Three or four caregivers are already meeting regularly, sharing their personal experiences and ultimately, they want the group to grow and to increase the knowledge base of Alzheimer's disease in Jamaica.
... ABOUT THE DISEASE
Alzheimer's disease is a degenerative brain syndrome characterised by a progressive decline in memory, thinking, comprehension, calculation, language, learning capacity and judgement.
It is important, however, to differentiate the symptoms of Alzheimer's disease from normal age-related decline in cognitive functions which is more gradual and leads to much milder disability.
An estimated 37 million people worldwide live with dementia with Alzheimer's disease causing the majority of cases.
About five per cent of men and six per cent of women over age 60 are affected with Alzheimer's. With the ageing of populations, this figure is projected to increase rapidly over the next 20 years.
There is currently no cure for Alzheimer's disease. The goals of care are to:
Maintain the functioning of the individual;
Reduce disability due to lost mental functions;
Reorganise routines so as to maximise use of the retained functions;
Minimise symptoms, such as depression, agitation, suspiciousness;
Provide support to families;
Psychosocial interventions, including education, support, counselling and respite care, are extremely important in Alzheimer's disease, both for patients and family caregivers. Some medicines have demonstrated usefulness in ameliorating cognitive dysfunction and improving attention, as well as reducing delusions.
Source: World Health Organisation, 2005
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