Dementia in the eyes of a caregiver: Part 01

dementia2

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 –

Dementia Categories

 

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.

Heba’s Corner

References:

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/

 

 

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7 Comments Add yours

  1. Mohamed says:

    First of all I’m sending positive thoughts toward you and your mom, I know quite well what it’s like to be a caregiver for a loved one, and I honestly hope you take the best out of this situation.

    As we know hardships tend to reveal the core nature of people, so be not surprised when you see people no longer care or loyal when you need them the most. The chances are, they’ve been like this all along, just unseen for our souls giving them the benefit of the doubt. This is definitely a trial for everybody in the family, and it is quite touching when care-giving is reversed all of a sudden. At the same time it’s an opportunity to see the world with a new pair of eyes. Perhaps a turning point to realize how we suck at caring for our parents, unlike how they cared for us back in the years. Or simply a chance to do our best trying to return the favor, and make them feel safe and sound around us.

    I am confident you have the potential of being the perfect daughter, and that you would take this situation as an opportunity to grow spiritually and mentally, and may none of us ever be in need in a harsh environment, ever insha’Allah.

    Thank you for this educating post about dementia and the misconceptions people had about it, I’m one of those who had them.
    God bless

    Liked by 1 person

    1. Heba says:

      Wow, Mohamed! Thank you so much for your words. There are days when everything is difficult and I lose my cool and get really mopey. And there are days, where mama is happy, and appreciative of having us around her. And those days or moments outweigh the unpleasantness of the disease big time..I love her and no matter what I do for her, it will never be enough. I am blessed with her not the other way around..thank you for stopping by

      Liked by 1 person

  2. Christina says:

    It is wonderful that you are helping to care for your mom in her time of need. It can’t possibly be easy, and I’m so sorry to hear about those in your life that are possibly making it even more difficult. I’m a certified nursing assistant, so I have been around elderly with dementia, although not from your personal perspective. I love seeing the family members who come into the facility often … a loving and supporting family truly helps in this situation. You’re a good daughter, and I wish you the best!

    Liked by 1 person

    1. Heba says:

      thank you! It’s never easy but time has a way of easing all hardships and pain. thanks for stopping by!

      Liked by 1 person

      1. Christina says:

        I wish you and your family the best! Take care! 💛

        Like

  3. I can’t begin to imagine how hard this is for you, Heba. I’ve seen family members struggling with a loved one who has Alzeihmer’s, so I know how draining it can be. Dementia is so mistunderstood and I think most people don’t know how to act around people who have it. This might explain the impatience and the avoidance. However, it must hurt all the same.
    I read a true story called Green Vanilla Tea written by the wife of a man who was affected by dementia in his early 40s. She started to write the story as a kind of self-therapy while she struggled with bringing up two boys and being a caregiver to her husband.
    I hope you find some spaces in which to take care of yourself, while you care for your mother. Hugs.

    Like

    1. Heba says:

      I am not denying the daily challenges with my mother, but I have reached the state of acceptance where the pain is dulled and any daily mishaps are taken lightly instead of fussed over. I read a quote recently that rang true with me, “Time is the best of remedy for grief”, and I have found that to be so true.

      I will check out the book Green Vanilla – it seems interesting.

      Thank you for your words and thoughts! Very much appreciated!

      Like

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