The disappearing parent
She raised 15 children, a few dozen grandchildren and she acted as mother to numerous other children in her community with a strong hand and a gentle smile. A sly look, a joke or secret being told didn’t get past her. Today, they have to watch as 88-year-old Evelyn Burrows struggles as her memory fades.
Burrows suffers with the neuro-degenerative disease, Alzheimer’s, a form of dementia — a neuro-cognitive disorder where cognitive abilities decline over time. This particular form of the illness is characterized by an inability to retain short-term memory and over time progresses to a point where everyday things and long term memories are lost. It is an illness that affects members of the older community, ages 60 and older in most cases.
It was three years ago that Burrows’ family started to notice her consistent forgetfulness and inability to recognize her own family. Initially they were offended thinking she was intentionally doing it. After she had done it a few too many times, they decided to take her to see a medical professional. She was diagnosed with Alzheimer’s.
While they’ve accepted this new stage in their mother’s life, three years in, it’s still almost a shock to many of them.
“I guess we were so accustomed to seeing our mother as always a strong and independent woman insisting on doing her own thing and raising us, that now when she is slowly unable to function on her own, and she needs us the most it’s a difficult thing to comprehend,” says her son, Deacon Andrew Burrows.
While his mother is still the same cheerful, gentle woman she is known to be, and he has adjusted to and learned to take his mother’s Alzheimer’s in stride, Deacon Burrows says it is still distressing, even though some members of his family still find the situation a “difficult pill to swallow”.
“Her Alzheimer’s is still pretty early in development and right now it just appears to be minor forgetfulness, but there are times it isn’t so simple. She can go into an episode where she just can’t remember and it can frustrate her.”
The Burrows family has hired a live-in nurse, and her children and grandchildren, take turns checking in on their once “sharp as a tack” mother and grandmother. There they find her puttering around her home, often lost in her thoughts, and at times barely recognizing members of her family. The deacon says that took some getting used to.
“When she was first diagnosed with Alzheimer’s, it was a difficult time because it meant she couldn’t take care of herself as well as she should, especially since she lives alone. We went through two caregivers before we were blessed to find one particular lady to tend to our mother’s specific needs. She did not flourish with the first two caregivers and she deteriorated physically, but now she is doing so much better and it is because of the care she gets I feel. She seems a lot better because of it which is why I feel one of the key things in dealing with a family member with Alzheimer’s is to ensure they are taken care of and you, as a relative, are there for them as much as possible.”
When his mother’s memory fails her, Deacon Burrows says he handles those moments by being as quiet and understanding about her needs as possible. He says he learnt quickly to just listen to her and let her talk and ramble on, because it usually comes to a point where her “ramblings” will all make sense.
From his experience he believes the problems arise when she is pressured by people to remember, and she becomes conscious of her forgetfulness. It is for this reason that Deacon Burrows has become exceptionally empathetic in dealing with her. He also says he sees the importance of treating her normally.
Much like other neuro-degenerating illnesses, Alzheimer’s is not a personal disease but a family-oriented one,” says neurologist, Dr. Edwin Demeritte. The vast effects of the illness are something he says that affects everyone who is in contact with the person and it is only through understanding and a group effort that coping is possible.
The medical practitioner says there is no cure, but current medical advancements have produced medications that help to slow down the process. The disorder is also accompanied by other symptoms like psychosis which is treated as they come as well.
“Alzheimer’s is not a disease that will go away or get better. It will not be okay in a month or a year. It is a long road and family members need to pace themselves so they can deal with it in strides,” says Dr. Demeritte. “One of the most important parts you can do as a loved one is to look up the illness on your own so you can have a deeper understanding of what is going on. It’s not being able to predict or fully grasp the situation that makes people so afraid and unable to cope. You also do not just assume the patient is unable to do for themselves. This is not a fact at first for many patients. The disease progresses over 10 to 20 years from mild and almost unnoticeable, until it is severe, or to the point where around the clock assistance is needed. At the beginning it is not so bad.”
The doctor says it is a good idea to keep your family member active and on a regular routine, to help them retain those kinds of memories for a longer period since it is just second nature. Helping them to continue to read and do crossword puzzles that take a bit of cognitive ability he says also seems to also slow down the disorder.
“It is important for relatives to continue to be supportive of the patient and not let them become lethargic or inactive,” says the medical practitioner. “Ensuring they are involved, and are in charge of as much of their life for as long as they can do it is important because the practices will benefit them and keep them on the right track. The worst thing you can do is give up on them or to not be there for them. It is not an easy task and they cannot, and should not go through it alone,” says Dr. Demeritte.
The Burrows family does not allow their matriarch to go through it alone. And Deacon Burrows says he has found much joy in doing what he can for his mother. He no longer lives in New Providence which makes it harder to be there for her as often as he can, but he says he is glad for the time he does have with her. He says he loves just listening to her and having conversations with her. Even though her memory may be slowly leaving her, he says her sense of humor is holding strong and she still has an infectious laugh.
“Even though my mother is going through so much, she is still the pillar in the lives of her children — especially mine,” says Deacon Burrows. “I recall many times I have had problems and just going to my mother has been all I ever really needed. Even if she may not quite understand what I mean fully, her words of wisdom and advice are still very important to me. She is still the same woman who raised me and saw me through tight spots. I am very happy to be here for her in her time of need and it’s a privilege to be here to help her.”
Other forms of dementia include vascular dementia which occurs due to multiple mini strokes that often go unnoticed until so much of the brain becomes damaged that there is a sudden decline in cognitive ability. This is different from Alzheimer’s which is a slow process. However some patients have a combination of different forms of dementia causing them to be very unbalanced and their decline progresses far more rapidly.