Alzheimer’s, and the parallel lives

What are the realities adult children have to deal with when caring for a parent with Alzheimer’s disease? Copy editor/writer Simone Delochan (sdelochan.camsel@rcpos.org) concludes her two-part interview with 51-year-old Anton Pollard, who cares for his 79-year-old mother. Part one appeared in last Sunday’s issue.

Pollard stated vehemently that professional/medical support has been negligible, and even doctors seem not to take particular interest in patients diagnosed. “There are times when I go to the hospital, Mt Hope in particular, and I would tell the doctor don’t ask her any questions because she has Alzheimer’s and would not remember, and all they would say is ‘OK’ and still ask her. She’d be, “I don’t even know where I am”.

“…What I have seen in the health-care sector is that they treat them more as a problem than a patient. It’s void of compassion. You would see on the doctor’s note ‘Alzheimer’s’ and they will walk over it, no questions asked…”

He contrasts the treatment of issues surrounding dementia to the kinds of campaigns that went with AIDS awareness. The literature that he has read has not been generated locally, and neither was he aware that there was an Alzheimer’s Association here in Trinidad. “For something like this, and they keep giving statistics about it, then they should have a much more robust awareness programme, to say, listen, we need to teach people about these things…”

He also has concerns about convalescent homes or having a caretaker at his house, querying whether there is relevant training in the field. There cannot be a one-size-fits-all approach to taking care of a patient with Alzheimer’s as while there may be fundamental similarities, there are differences in personality to take into account. Some patients with Alzheimer’s may be ‘walkers’; some may be extremely aggressive and for a person with no previous exposure or training, the task in caring for such a patient is daunting.

“If I had to bring someone else, how trustworthy is this person? You also have to look at the relationship between caregiver and the patient, because they [the patient] can say some really nasty things to you. Is the caregiver equipped to deal with something like that?”

Personal sacrifice

At present, he does everything for his mom, as well as all domestic duties. He admits that the familial support system he had assumed there would be when he first made the decision to be his mother’s caregiver, has not materialised.

His life, consequently, has been profoundly affected by his decision, not that he regrets it, because he, “has to be strong” for his mother. Still, it is a lonely job, and emotionally taxing as he helplessly watches his mother’s deterioration week by week. “I have given up my life and that of my family’s life because I had to separate from my wife because of the confined space we had to work with.” He did not want to move his mother because of her familiarity with and comfort within her home.

“It is a solitary life. It affects everybody. There are things I want to do with my kids and I can’t…My life begins after she goes to bed, and it doesn’t mean I want to go anywhere because I am tired from the day.

“You are actually trying to have a parallel life. One with your mom and one with your social, professional and personal life. That’s like a four-lane. How do you manage that?

“Every day is a challenge. Every day is an emotional challenge. Every day is a physical challenge. Sometimes, it’s a mental challenge, because what I tried yesterday may not work today. It’s exhausting…you start to wonder, where is your reprieve? Where is your sanctuary? In all of it, you have to be vigilant of your own mental health.”

 If you are in a similar situation contact the Alzheimer’s Association of Trinidad and Tobago at (1-868) 225-8764/632-4791 to see how they can assist, or check their webpage: http://www.alztrinbago.org for more information.