I am the primary caregiver for my mother as she progresses through all the stages of Alzheimer's dementia. She is now at the final stage. Let me describe this stage. The only things that she can do for herself are ingest, breathe, and eliminate. She has to be bathed, teeth brushed, changed, moved around, fed. She requires 24-hour caregiving. At nights she sleeps in the position in which she is put. She cannot turn or voluntarily move herself. She is not yet bedridden because we are determined for her to sit up for as long as we can make it happen. She is not aware of us or her surroundings 98 percent of the time. On very rare occasions now, she may give us a smile, tap to music or turn in response to her name being called. Her vanity is still intact though, as she sits effortlessly to have her hair styled daily. This has been a long journey. My aunt, her sister, describes it as "the long goodbye". We have been doing so for a long time, over fifteen years. A testament to what is possible with good care? A testament to the patient's strong constitution? A testament to luck? I don't know. We just keep at it adjusting as we go along This process has made me reassess and adjust my priorities in life. Different things are more important. Quality of life is paramount. It has redefined the concept of family. It has changed the concept of time. It has taught me patience. Patience to deal with the declining capability of someone who "sorted the universe before breakfast". In the early stages, patience to deal with her aggression, unreasonableness, repetitiveness and all the other things that happen in that period, while I was just finding my own way to understand the disease and to cope with my own life's challenges. My life, my responsibilities, my hopes, challenges, and ambitions did not stop because I had to care for her. But I did have to change the perspective. I had to change, I had to adjust because now she could not. During her decline, patience to deal with the loss, patience to deal with her care. It is difficult for a caregiver, especially the primary one. It is physically difficult. Even though my mother is small she is responsible for a number of my aches and pains that have come about due to lifting and moving and general management. It is financially difficult. I recognize but don't focus on this, giving thanks that I can afford the choices I have wanted to make. The restrictions on my time are both socially and emotionally difficult. But even here I focus on the blessings of family, especially my daughters and some close friends who make me, their responsibility and keep me grounded, focused and happy.
So it could have been an even sadder story, but we have been blessed. -Karen Camejo Dated September, 2020
“Martin was diagnosed with Alzheimers Disease when he was 53 but the changes began 2 years before that. He was a plumber, a hard-working and orderly man. He started forgetting, accusing people of stealing his things, saying things that were hurtful and untrue and became aggressive. It was so unlike him but as we later found out, typical behavioural changes of the condition. We have 6 children ranging in ages from 32-45 and 13 grandchildren. We didn’t understand what was happening and had no idea that someone as young as him could develop it. It took a lot of adjusting, patience and strength to get to where we are now. For the most part he doesn’t recognise or remember anyone now. There’s no conversation – sometimes he smiles. He used to call me Esther – now he sometimes says” Marmee”. He spends his time at home-his muscles are getting weak and he gets tired very quickly. He loved music so the radio is always on. He taps his feet-sometimes we dance. Sometimes when I say, “you know I love you?” he responds with a smile or says it back. All the mirrors in the house are covered because he gets agitated when he sees his reflection. I do everything for him now- bathe him, feed him, cut his hair, shave him. He was so active before- always doing something: working, involved in Church, always willing to help anyone, looking after the plants. We have one grandson who lives with us. He’s 14 now. He feels it the most because they did everything together. He is physically very well. I worry about dying before him. The children do what they can but they are working and have their own families and lives. I know none of our plans for the future will happen. He used to say we would travel when he retired. I took him to family in Grenada and NY last year and the year before. Sometimes when I am tired, I ask God for strength to carry on. I can’t leave him alone or take my eyes off him for long. It’s almost like having a baby again. He walked away twice- once out of the house towards the bus route and the second time when we were in POS. Those moments are terrifying. He moves around much less now but I keep the gate locked. I joined the Alzheimers Association a few years ago. We meet once a month.as a group. Its helped me a lot to be able to share experiences and prepare for what’s next. You can’t give up on the person -you just have to adjust. Neighbours, family, friends and even strangers have been very kind and helpful. Look at us on our wedding day…. -Article and photo by Rashmi Mathur of People of Trinidad and Tobago Dated August, 2016
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.
It’s difficult to say exactly when Alzheimer’s took hold of my mother but with hindsight, I can only guess that it reared its ugly head about nine or ten years ago. At that time she was living alone and I was living abroad. I used to phone her regularly and nothing seemed amiss. She was always cheerful and was able to assure me that all was well. When she first began losing weight I wasn’t overly concerned but when I realised that she was a dress size smaller every time I saw her, I took her to the doctor who cited depression and loneliness as possible causes. I also noticed that she was doing word search puzzles. I didn’t question her. It didn’t dawn on me that word searches were less challenging than crosswords which she had been doing for many years. Then I learnt from her that things around the house were mysteriously disappearing while other things were found in the strangest places. So I took her to the doctor again and that’s when she was diagnosed with Alzheimer’s. I had taken it for granted that her forgetfulness was a normal part of ageing. I didn’t think for one minute that the deterioration in her memory, capability and to a lesser extent, mobility were signs of more devastating changes and incidents to come. This spritely, do-it-yourself person had unknowingly been taken over by Alzheimer’s disease. I lived miles away nevertheless the worry and concern about my mother’s health, safety and wellbeing became overwhelming. I felt helpless. I questioned myself. There were no easy answers. Long distance caregiving increased my stress levels. So to relieve the stress on me and my relatives, I’m now back home as Mum’s primary caregiver. I wouldn’t have it any other way. -Ann Smith Dated August, 2013 edited June, 2016. Ann's mom passed away on Nov 2019.
My name is Halima Maharaj and I will be celebrating my 80th birthday in November. I am the mother of seven, I have ten grandchildren and four great grandchildren. I migrated to New York City in 1969 with little money and education, I was headed for a better life. During the early years, I did housekeeping and home care for the aged. Then I started working for a major airline; catering for first class passengers. I had the opportunity to be trained as a technician operating the mammogram machine at the American Cancer Society. After twelve rewarding years at the American Cancer Society, I became a bus matron for special needs children. I felt like a child again being around those kids, whom I loved dearly. About seven years ago, I noticed that I was misplacing everyday things like my car keys, my glasses and so on. Soon, I started forgetting where I parked the car and how to get to my destination. I lost my interest in one of my favourite pastimes, sewing. I became moody as I tried to come to terms with my situation. I felt alone dealing with this inner turmoil, my independence and my memory was gradually slipping away from me. I was diagnosed with Dementia in 2011 and I have slowly accepted my condition… “ I do forget”. I am now retired and back home in the land of my birth. Some days are harder than others but I have the will to challenge myself. I take each day as it comes with my loving husband at my side. I am surrounded by my supportive family and friends who help me to cope. It has been a childhood dream of mine to visit Europe and this summer, I will get that opportunity. So I am really looking forward to it, I thank God every day that I am still mobile and don’t have any major medical problems. -Halima Maharaj June 2016
The most recent conversation I remember having with my grandmother happened about eight or so, years ago. I suppose it was memorable because it was not one of our regular friendly exchanges. In fact it was the complete opposite. I was verbally attacked while serving her lunch. GranGran and I have always been very close, our rapport generally consisting of a ‘rough joke’ type of banter where only we could be included. I was so unprepared for the unwarranted insults on this occasion that I could not even respond. My initial shock and disbelief was replaced by my growing understanding of the extent to which Alzheimer’s disease would continue to affect not only my grandmother, but the persons in immediate contact with her. Since then, our conversations have deteriorated to being almost non-existent as she is no longer capable of saying anything beyond the words “yes” or “no”. When I look at her now, I try to remember the remarkable person that she was, through the vague look that she continuously gives me. A person that aggravated me at times because of her strict ways, but I loved unconditionally, because of her just approach to every situation. A person that I and many others admired, because of her ability to do everything well, concurrently. With firm memories, I look at this talented superwoman that once was, even though her memories of me are no longer. -Michal Camejo June, 2016
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