In June 2014, my mother, at age 64, was diagnosed with vascular dementia. My sisters and I, as caregivers, not only did we struggle with the diagnosis, we had trouble understanding what the disease is. The initial testing and diagnosis were done in Cairo. As a family, we vehemently denied even the possibility that Mama could be sick and so we visited five doctors in Cairo, and then the sixth one in Canada. The truth can no longer be denied: Mama has vascular dementia.
It took us time but we finally came to term and accepted the illness. And we started to adjust – you never really master the role of a caregiver as the behavior of the dementia patient changes every day. So we are constantly adjusting. What we failed to realize is the impact of friends, family and the society as a whole with respect to the new Mama. We failed to realize that ignorance and lack of empathy can be quite brutal to a family stricken by a degenerative illness that has no cure in sight.
Mama is a very social and lovable person – dementia hasn’t altered that side of her personality although initially it did (that was caused by depression which I will share later). Only people who know her extremely well and spend long periods of time with her will realize that something’s off. The problem was that once people realized something’s not right, they label her as an Alzheimer’s patient and started to treat Mama as an invalid – they have ignored her or disregarded her completely.
We have had other disappointments as well; by people who know Mama quite well, for years and some for decades, but don’t see her that often. When we first told them about Mama’s illness, have appeared to be sympathetic to our plight and Mama’s, yet have taken offense at the slightest mishap. Like Mama not answering her phone or forgetting their birthday or leaving multiple voicemails…Our pharmacist in Cairo was bewildered that Mama doesn’t answer the doorbell or keeps the delivery man waiting. And he knows exactly what medication she’s taking..so he knows she has dementia.
Over the course of two years, I have encountered a lot of situations that leave me dumbstruck, hurt, and just downright angry! Why aren’t people a little kinder, a little more sympathetic, and a just a little more loyal? Why are Mama’s lifelong relationships turning into dust in a blink of an eye? Why do people not understand and at the same time belittle my pain? How can one explain the grief? Mama’s alive and well, but mentally she isn’t. Our roles have been reversed – at 29 I have become the caregiver and she became a dependent. It’s heartbreaking to see your mother struggling with very simple tasks and yet people belittle your anguish. Again, I ask why?
The answer to all of these questions is simply this: ignorance.
Ignorance isn’t an excuse. It shouldn’t be, yet in our case, it is one. They don’t know what dementia is. Alzheimer’s disease is a lot more common and dementia isn’t. It’s as simple as that. And if I am being honest, at some point in time, I was equally ignorant but my circumstances have changed.
The intent of this post primarily is to raise awareness about dementia: symptoms, diagnosis, treatment and finally, living with dementia – all from a caregiver’s point of view. I will share my story in the hope that a) people will be kinder and more patient with the elderly b) and might provide some insight to other caregivers.
What is dementia?
Dementia is a generic term that is used to describe a group of symptoms that cause a decline in the mental capability severe enough to interfere with daily life. Forgetfulness, disorientation, loss of ability to reason and think clearly and lack of concentration are all symptoms of dementia. Another term for dementia is a neurocognitive disorder.
Dementia is a big umbrella term that defines impaired thinking and reasoning.
Overall Dementia Symptoms
Memory lapses- Communication & language detoriaration – Decline in the ability to focus and pay attention – Impaired Reasoning and judgment –
Alzheimer’s Disease is the most common dementia and it accounts for 60 to 80 percent of the cases out there. Some of the symptoms include difficulty remembering recent conversations, names or events and most importantly impaired communication.
Vascular Dementia accounts for 10 percent of dementia cases. It occurs after a one or more strokes in the brain. The impairment depends on where the stroke is exactly. Some of the symptoms include impaired judgment, ability to make decisions, ability to focus and pay attention
Dementia can also stem from other diseases that cause irreversible brain damage such as Parkinson’s disease, Huntington’s disease, Creutzfeidlt-Jacob, and alcoholism; they all lead to cognitive impairment.
Why am I writing about dementia? God knows, I am no doctor. My experience with dementia is limited to a caregiver role – one that I struggle with daily. I love Mama, and anything that hurts her hurts me as well. Dementia has become a stigma, not only in the Middle East but in North America as well. It’s imperative that as a society we embrace our dementia patients but first, we need to learn more about it. Also, caregiving is hard – and I hope that by sharing some of my struggles, I become a source of hope to others.
The 36-hour Day: A family guide to caring for people who have Alzheimer Disease, related dementias, and Memory Loss by Nancy L. Mace and Peter V. Rabins
Alzheimer’s association website: http://www.alz.org/
Photo courtesy of http://healthbeat.spectrumhealth.org/got-that-foggy-feelin/