General Health & Well-beingMotherhoodWomen's Health

Alzheimer’s: A story about possibilities, passion and purpose

 
Nelly
Dr. Abulata with her mother and husband

 

Alzheimer’s: A story about possibilities, passion and purpose

I have always been my mother’s daughter and l believed that l would always be. Change is the only constant in life and that applies to everything. It has been almost 9 years now since my mum was diagnosed with Alzheimer’s Disease. And it has indeed been a learning journey. This is not a story about grief or sadness but rather one about acceptance and hope. It is about embracing your circumstances no matter what, and to keep moving forward because whether you like it or not life goes on…

Just when l was about to start preparing my papers for a Post-Doctorate Fellowship in the UK, my mum was diagnosed with Stage 2 Alzheimer’s disease (Alzheimer is 7 stages). I had noticed some changes in her but l thought this was related to the passing of her beloved mother to whom she was very attached. It turned out to be more than just a transient phase. And so instead of going to the UK for my fellowship l went to the UK with my mum for a medical checkup to get a final diagnosis. After a month of examinations, investigations and consultations the diagnosis was definite. I went back home with a new person; someone who looked like my mum but only resembled her in looks; although even her looks had changed and her smile had almost completely disappeared.

I have to admit at first it seemed almost impossible to accept and I often became cornered by my own feeling of denial and guilt as if l could have done something to prevent it from happening. I owe a lot to Alzheimer Organization (alz.org); it has been and continues to be the guiding light through this journey. From guidelines to follow for daily activities, to how to make changes around the house to make it safer, to what l as a caregiver will deal with and how to go about it, to stories of caregivers and patients; the website is truly an amazing tool kit. It took a while till l managed to get myself together and sorted things out. After all she was no regular woman, a Professor at the Medical School at Cairo University who had just turned 65. who had been working since the age of 21, who led projects, managed people, dealt with major challenges in her life, travelled the world and the list goes on… so this was no easy task.

Making daily routines was a key for the success of this journey. Fixing times and dates for eating, grooming, changing clothes, taking meds, doing activities whether indoor or outdoor was of major importance. With time I learnt that the best thing to do is to deal with one change at a time. First, by trying to understand why this change is happening and then by finding solutions to overcome it. And “bingo!” solution-finding started to become part of my routine… If buttoning and unbuttoning tops and trousers became a challenge, we would make necklaces using beads. If colors were difficult to distinguish, we would color pottery. If the dates and the time of the day became confusing she would start copying the titles from the newspaper into her journal with the day’s date and time and we would discuss them… And the solution list went on… I sought out advice from doctors, from other caregivers, used children’s teaching books (“How to Talk So Kids Will Listen & Listen So Kids Will Talk”). Whether or not l accepted it, my mum was growing younger.

I knocked on every door where l believed l could find a solution for whichever challenge she was going through. Independence for her meant a lot and to date that is one of the most important things l support her with and allow little assistance from myself or anyone else and limit it to when it is really needed. At first every day that passed by with my mum still alive became a blessing but then every day that passed by with my mum overcoming a challenge became a victory. There were good days and there were not so good days too…

1 year after her final diagnosis l knew my way around the disease, my mum and myself. I also realized that yes this new role of mine is taking up a lot of my time but life will go on whether l like it or not. My mum had a good life, she accomplished all her dreams and now is enjoying the rest of her life perhaps in a way different than she would have hoped for herself, but she was alive and fighting for her independence. So there was no reason to put my life on hold as one day, whether l like it or not, she will be gone and my life must go on… and so it was time to work on my Plan B (Plan A was going to the UK for the 3-year Post Doctorate Fellowship).

I don’t believe that almost 9 years have already passed… Yet, a lot has taken place during that time, a lot has been learnt and a lot of challenges have been overcome…

l learnt the true value of life, l learnt to see through the true colors of people and I learnt that no matter what challenges you will be faced with in life there is always a way; you just have to look for solutions instead of focusing on the challenges. Change is the only constant in life, yesterday we were our mother’s daughters but tomorrow we will be become the mothers to our mothers. I have come along way in my life both personally and professionally, I am now an Associate a Professor at the Medical School at Cairo University (same department as my mother), a Healthcare Management Consultant, a Woman Leadership Coach, a wife and soon a mother-to-be to my first child…

I believe that the challenges we deal with can help us make something beautiful and inspiring. An oyster would have not made a beautiful pearl if it didn’t have that uncomfortable piece of sand lodged inside of it… Challenges are a part of life; that’s not going to change. However, that doesn’t mean that you have to become a victim of your circumstances. Your attitude and perception are something that only you create; so how you see things is really up to you. Challenges are often blessings in disguise from which we grow stronger. So, keep a look out for them and use them to your advantage to help yourself and help others…

 

 

Read also: 6 Tips for Family Caregivers of Alzheimer’s Patients

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Dr. Nelly Abulata

Dr. Nelly Abulata is a Professor at Kasr Al-Ainy Faculty of Medicine- Cairo University with almost 20 years of diverse experience in Public/ Private, Academic, Clinical, Management, Training and Research settings in cross-cultural environments. She is a Thought Leader and Management Consultant for Higher Education & Healthcare, an Expert and Mentor for Health, a Women’s Leadership Coach and a Presentation Guru. She is also a Wife and a Mom. Her goal is to bring about positive change in her community and make a difference in people’s lives. Check out her page.

 

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