DEMENTIA: UNDERSTANDING THE CARER

When my family and I first realized that my mother had contracted the disease, we knew much about its effects since my grandmother had succumbed to the disease. I had already known much about Alzheimer’s and the early warning signs but what I wasn’t prepared for was the stigma within the local Trinidad and Tobago society. I didn’t know that becoming a caregiver for my mother would have changed my entire life.
My mother was always quite an active person. She was a teacher at the government primary school level, then a music teacher at secondary school level. I remember on afternoons she gave music lessons right from our home. After her retirement, she dedicatedly volunteered with various organizations. She loved traveling. A year would never have passed without her taking off on an airplane to go “somewhere”. She cherished her independence and so the thought of her losing her mental ability was scary for her. When that started to happen, it was difficult to watch her deteriorate so quickly.
At first, I was in denial. Not knowing how to respond to when she did strange things like move around objects, to find money in different parts of the house, her accusing someone of taking her things and losing them again and so it continued on. She tried to put up a fight against the disease by persuing ways to keep her brain active. She played scrabble with friends, watched her favourite game shows, did trivia and world knowledge tests on her own. She even tried taking a tablet that promised to “help boost memory retention” but in the end, all of this proved futile as the disease continued to take its course. Because she was a strong-willed individual, I learned it required a lot of patience and emotional strength to take care for someone with Alzheimer’s. It wasn’t easy. Then after a very challenging two years into the disease, I started to feel the exhaustion getting to me where I began to question my own well-being.
Hygiene is challenging for a person with Alzheimer’s. They either choose not to or think they have already done daily care tasks like bathing, brushing teeth, combing hair. Doctor visits were bit easier, mainly because it became a regular social outing, and gatherings gave her the sense of feeling important and relevant still in society.  Getting the family together was the hardest as most people feel the need to mask their loved one’s  illnesses to society at large. I was even told to keep my mom at home but we didn’t let the stigma and fear of the disease stop us. This didn’t always go well for us as there were a few embarrassing moments I must admit, but even in hindsight, proved to be quite amusing! Learning to cherish these moments proved to be almost therapeutic as a caregiver. 
Besides learning to cope with the disease, economically it proved to be quite costly. Approximately $1200-$1500 monthly fees in medication. Finding the medication wasn’t always easy as they were not always available at local health centers due to the short supplies and high demand. In addition, there were the geriatric care costs, visits to memory clinics and eventually specialized institutional care. The last being a difficult decision to make, especially from our past experience. After placing my grandmother under this type of care, she passed about a week after. However, due to the 24hr care she needed, we eventually had no other choice.
The support from family and friends was crucial. Having someone to talk to made a difference. I found most of my support at Alzheimer’s Association of Trinidad and Tobago as I met persons there that openly shared their experiences with me. The meetings provided me with the feeling of not being the only one going through this ordeal, I was not alone anymore. Eventually, I actively volunteered with the Association which expanded my knowledge and now I can share the wealth of experience with others like myself. I learned that it’s also just as important for caregivers to remember to take time for themselves as this can be forgotten due the demands of the disease.  
 -Lyndon James
Dated August, 2013. Lyndon's mom passed away on Jan 2018.