Saturday, July 19, 2014

Learning to Cope with Alzheimer's Disease

I began this blog post tonight with the intention to talk about what it's like when someone close to you suffers with Alzheimer's disease; but as I typed descriptively, my feelings and experiences became so potent that I decided to share what I can at the moment.

With the knowledge of yesterday, I continue to practise living in the moment. I remember coming back home once a month to visit my family last year and seeing the gradual decline of my dad over the last 12 months...

We first started seeing signs late 2012, but did not fully understand what it was and foolishly ignored it, passing it off as old age. 

The earlier months of 2013 however were a stark contrast to the end of the year which seemed to decline rapidly. I spent a week home on sick leave in November, only to return a few weeks later in December and not find what I left just weeks before. I even received a call while at a Career Day a few weeks earlier that he tried to escape to come look for me. When I did come home, it was very dramatic when I had to return on the ferry a few days later. As a result, that November I experienced the worst case of sea sickness to date. This has since ceased (trying to escape) thank God.

Even in August, I remember coming home for the weekend and watching a football game with him one Saturday night. We were just having a casual conversation about my new job and my home away from home. Although some questions he would ask me repeatedly in the space of three days; like the fact that I was taking my car onto a boat to the sister isle and not a bus like he thought; what day and time I was leaving to go back, what exactly my job entailed and him wanting to come and stay with me for a few days. It broke my heart to tell him that he couldn't, since this would mean that he would be by himself during the day while I was at work. 

I did not understand what was happening and I think to myself now: if only I could have savoured those moments longer and had more patience, because his personality has changed so much since then. Now our conversations are diminished to a mere few sentences at a time with lots of prompting. I am super glad however that he did come to visit with my eldest sister and see where I worked and lived in January of that year.

Alzheimer's is not something one expects. It's not like you can predict this or see it coming a mile away. I would have never imagined this say 10 years ago. It can happen to anyone at any given time. My dad was always on the go: active, driving, very talkative and jovial always looking on the bright side of things, a solution finder and trying to help in any way he can, telling animated stories and the funniest jokes, doing some new DIY project around the house, cooking...he was the best cook! He cooked on a few occasions last year and my mom called while I was away to vividly tell me the story. My response to her was: I am sure it tasted good! And the reply was a resounding yes:) 

After retirement, he took me to work and back and also to the gym and university when I wasn't feeling well or too tired to drive myself through traffic. There was one time that stands out in my mind when I had the red eye (conjunctivitis) and he took me to school to drop off overdue library books. In those days he would park and wait for me for hours under the shade of a tree or take a walk, meet up with old friends and make new ones, until class or work was over. In this way a lot of my friends and co-workers got to know him and marvelled at how spoilt and lucky I was. He sure is a gem. Everyone certainly has their faults; but when I think about these times, I can see beyond the horizon and marvel at the BIG picture. I will cherish it in my mind always. 

This experience has prompted me to urge anyone reading this to savour the moments with their parents if they are still alive or anyone close to them for that matter, because you never know what the future brings. I can't even remember vividly what it was like before. I have the feelings and memories, but I can't recreate the intensity in my head. Sometimes I wonder if I am beginning to forget and would soon suffer the same fate! It's a sad thought, but it's a very real fear for anyone coping with a loved one who has the disease. 

One of my other good friends who lost both her parents and those close to her when she was quite young always gave me the above advice, but I am now seeing the value of what she was saying all those years ago. I too know how fragile life is as I could have lost mine some weeks ago for the second time, just shy of my birthday. I thank God for sparing my life that could have ended very tragic which would have been devastating for my family. I also give Him thanks and praise for what can only be described as nothing short of a miracle. It's a second chance to right the wrongs in my life, make a greater impact on the world around me, forget the useless thoughts that plague my mind and focus on the people and things that have demonstrated that they deserve a second thought and place in my life.

There is not one day that goes by that I don't tell my father how much I love him. I did this even before he got sick, but now more recently several times a day if I can. He always reciprocates sometimes by saying he loves all of his children...and sometimes he says that he loves me the most :) I love to hear him say anything at all and to smile or laugh. He tells me I always make him laugh. 

Right now he is my #1 love and the main reason I moved back to Trinidad. I don't regret a thing. I have definitely seen a positive change and improvement since I returned in January. Sacrifices and prayers are definitely worth the effort. I watch my sister and mom especially as they take care of and watch over him and it almost brings tears to my eyes as he has returned almost to a childlike state. I strongly believe that it is this outpouring of love that keeps him going and in good spirits.

As an entrepreneur I am flexible to take him and my mom on outings, read the bible and my books to him and spend quality time I could not have done before when I had a day job. I can do all this and still have time for my business. It's a win-win situation. His mood, communication and energy changes sometimes, but I always try to keep him talking and in good spirits. Today I played my completed audio book for him and every track he asks me who's talking on that CD! It was hilarious, his face would light up each time I said it was me.

Though I've adopted the approach over the past 7 years to see where my fingers lead me (as I never know what I'm gonna blog about until I begin to type) however I asked my sister earlier what she thought that I should talk about today and her reply was that I blog about the deepening of my relationship with our father. She told me that there is no shame in talking about Alzheimer's disease and it's something good that other people can perhaps relate and learn from, not to mention a release of my emotions. Good advice.

If this post has helped you in any way, or you or someone you know are also dealing with Alzheimer's disease, I would love to hear from you.

Until next time...

Peace & Love