“I feel that 37 years of my life have just been erased. She doesn’t remember me. She thinks I am her son sometimes and other times I am simply a stranger.”
“He only remembers what we did 40 years ago! He has no memory of what just happened in our lives.”
“He doesn’t remember my name. He asks me over and over, ‘who are you?’ It happened so quickly.”
I have had several face-to-face encounters with people who have Alzheimer’s and family members who have been affected by it. The experiences are heart-breaking and I have tremendous respect for people who commit their lives to ensuring that their loved ones are taken care of, even when the loved one has no memory of who they are. This last week, I listened to a gentleman’s journey with his wife as he gradually lost her to Alzheimer’s. This is a couple with a wonderful love story, two lives divinely entwined with each other “for better or worst” but this turn of events was surely not part of the path they had planned for their lives together.
The onset of the disease started 20 years ago, when she was only in her late 40’s. It first manifested itself in mild forgetfulness which led to having no recollection of recent events and eventually no memory of who the people around her were. She lost her job, they tried to set up a business together so that she would be close to him, later sold the business because it became impossible to manage with advanced memory loss. Twenty years later, she is in a nursing home which is able to give the best care for her, with continued support and devotion from her husband who is now a stranger. Watching a loved one slowly or quickly lose their memory is devastating because we rely on our memories to tell our stories and our history.
“We are developing a new relationship with each other. She told me that I needed to get married and I asked her to describe the type of person I should get married to. She described herself.”
As he shared the various stages they went through from denial to acceptance, it moved me to tears but he also looks at the positive side and all the wonderful people he has met on this journey, whom he would not have met otherwise. His commitment, kindness, gentleness and loving companionship makes him extraordinary – another angel walking an earthly mission.
According to http://alzheimerletsfaceit.ca/, “Right now, over 500,000 Canadians have Alzheimer’s disease or other dementia. And one new person will develop dementia every 5 minutes. By 2038, 1.1 million Canadians will have dementia. That’s one every two minutes.
But a recent nationwide survey conducted by the Alzheimer Society found that almost half of the respondents lived with symptoms of dementia for a year or more before seeing a doctor because they didn’t know the facts. Early diagnosis of dementia helps people get care, support and medications so they can live better with dementia and make important legal, financial and medical decisions.”
Research shows that the brain begins to deteriorate long before one can experience any single symptom of Alzheimer’s disease. There are a number of theories for the cause of Alzheimer’s disease but, it is most likely the cumulative effect of various factors such as genes, down’s syndrome, mutation chromosomes, age,stress, injuries,female gender and even lack of education and poverty which can prevent one from having access to information.
While research about the disease is ongoing, there is significant evidence that points out that we can prolong the onset of the disease by having control over the level of stress in our lives and keeping our brain active by writing, being creative, doing jigsaw and crossword puzzles etc. As older people get into retirement, it is important to volunteer and stay connected to social activities and friends as well just basic exercises like walking or doing yoga regularly. One of my biggest concerns moving into the future, is that if stress is such an important trigger, then we need to incorporate strategies in our work-life balance to reduce stress, even in the lives of children who I believe are living under stressful situations in this modern day.
About 9 years ago, I spent a weekend with one of my girlfriend’s family. I arrived at the house late so I went straight to my room without meeting her parents. I woke up in the early hours of the morning, because someone had opened the door to my room. He put on the light and told me that he came to check on me and started pulling up the blanket over me. I figured out it was my friend’s dad. At first, I was shocked but as he continued his monologue, I realized that he thought I was his daughter and he was back in the time when he was a young father putting her to bed.
That was a head-spinning weekend for me as I watched his wife’s frustration in coping with the memory loss and him “chatting” her up as though they were really in their 20’s. He repeated his statements and questions over and over, of course not remembering that he had just asked the same question before.
“You know, you are the most beautiful woman I have ever seen and I promise you I will take good care of you if you marry me.”
“Let us talk to your father about our wedding.”
His wife loved him dearly. They had been married and devoted to each other for over 40 years. She did all that she could to take care of him at home until he became physically violent and started wandering away from the house and could not find his way back. Eventually, she put him in a nursing home where the family visited daily.
When he died, his daughter told me that “I think we all said goodbye to our dad five years ago. The man we buried was a stranger. He did not know us and this is the not the man we knew as our dad.”
In both of these situations, the lives of the able-bodied partners were turned upside down and they tried their best to keep their partners at home for care, even at the risk of their own health and well-being. They could not bear to put their beloved ones in a nursing home for care by strangers. Taking care of a person with Alzheimer’s at home is very stressful both physically and emotionally. They both said that putting them in a nursing home to give the support and excellent monitoring and health care required for this disease, was the best.
Looking back at my growing up years in the Caribbean, I can see that many people in our community did suffer with Alzheimer’s and we called them “crazy” and attributed their memory loss to ” an obeah spell which someone casted on them.” We were afraid to talk to them because their behaviours were unpredictable. Maybe many of them should have been in institutionalized care and not so open to the taunting of people who simply don’t understand the disease. The truth is that many families never received the support needed to cope with such tragic circumstances in a family. In some ways, as a person described it to me “It is worst than death. Death allows you to close the chapter and move on. In this case, you can’t.” There is still so much work to do in educating our communities about this disease and for all of us to understand that this change in our brain is something that all of us are vulnerable too. This would perhaps help us to be less judgemental and more compassionate.
Educate yourself about this disease. If you think a little, I am sure that you know someone who has suffered /is suffering with it.
- Take care of your own mental health because the brain is so fragile.
- Control what you can by treating your body with love, care, reducing the stress in your life.
- Pay attention to your loved ones changing patterns.
- Seek help from your family doctor and health care providers.
- Consider having a Power of Attorney or a will…. something to protect your property, assets and financial matters for your own protection.
LookGood!!!FeelGood!!! by powering up your brain with some new challenges and best of all leaving a wonderful footprint behind you! If you and I lose our memory – at least we will be remembered with love and gratitude and hopefully a loved one will be our memory to tell our story.