John: Living With Alzheimer’s

world-alzheimers-monthI first started scribbling the words here sometimes in September 2015. Yes it was one year ago.

This was one few posts that I thought I MUST write when I first started this blog about a year ago.

I just didn’t realise how difficult and hard it was. Until now. One year later.

But I have always wanted to write something about John and the illness which robbed us the normal life in every sense of the word.

No, I am not talking about death. I am talking about illness which rendered a very healthy guy into a pale shadow of his former self.

And I know by writing all this down, I am re-visiting the pain, the heartache, the tears, the nightmare and ultimately, the loss.

But I also believe that by writing all this down, I am healing myself. Slowly. It has been slow and bumpy process. There’s no way you are able to heal yourself completely. Especially after losing a husband to this dreaded illness.

Since I started this blog, writing has been therapeutic for me.

Now, a year later, I discover that I can write about this without being overwhelmed with pain.

Yes this month is the month of Alzheimer’s Disease awareness. World Alzheimer’s Day which is commemorated annually on September 21 since 2012, just three months after John’s passing. And this year, marks the fifth global World’s Alzheimer’s month.

The dreaded Alzheimer’s Disease robbed me of my husband, my pillar, the man I love. It robbed me my marriage and it robbed me my life. Literally.

It has been four years three months and 15 days since John breathe his last in my arms. And it has been a roller-coaster ride since. Emotionally, psychologically and financially.

We all realise when we get married that we may lose our spouse at some point in our life together. However, we expect it to be late in life, and we generally don’t expect dementia. Therefore, when it happens, a grief process occurs which often includes denial that your spouse is ill.

And yes, this is a real grief process, because the Alzheimer’s is gradually taking my husband’s life – and as he change I was losing the person I was married so many years ago. As you married someones, we grow to expect certain behaviours and personality traits from my husband and sadly these things change as the dementia progresses.

I don’t know about other people’s mariages, but when I married my late husband John years ago, it was meant sticking out together through health and sickness.

But, who expects Alzheimer’s or any other form of dementia would come knocking and destroyed our lives so fast, so soon?

After bouts of fights over small petty things, we finally decide to make appointments with specialists at two top hospitals in the country. Something wasn’t right though I couldn’t pinpoint what.

Despite financial constraints, I love my husband and I wanted to give him the best, and that include the best doctors possible – to do his medical check-up and to give us reliable diagnoses.

We did our first check-up at Pantai Medical Centre but we felt that we were just wasting our time there. Not only we had to wait but the doctor was also lacking of that”human touch/ empathy.”

With recommendation from my former colleague Catherine Siow we finally met the right expert, geriatric specialist Dr Philip Poi at University of Malaya Specialist Centre (UMSC).

Here, John was getting the right treatment and monthly appointment which he looked forward to, everytime!

On my own, I was pouring over hundreds of articles, especially first person account of having spouse who was suffering Alzheimer’s or any form of dementia, it was one way to help myself to understand what was really going in our life.

Juggling between working 66km away in Petaling Jaya and making sure John didn’t do anything dangerous (to himself like getting injured while walking in the bushes) while he’s at home alone was enough to keep my mind occupied and in the state of anxiety and worried at all times.

With my family lived three hours away, I was relying heavily on our part-time helper Ema who would keep John company from noon onwards. I was also eternally in debt to my part-time gardeners (an Indian national and a Bangladeshi) too and a scores of security personnels who were there helping me to keep an eye on John while I was away working.

And there were plenty of times whenever I let myself, I was drowning in guilt, sad, anger and desperation. But I didn’t have time to cry.

I was devastated but everytime I looked at John, couldn’t imagine how he was feeling. Being a proud man, he was very active, independent, and suddenly he wasn’t even half of his former self.

He was very active physically. A keen hasher and long time member of several hash house harriers, John would organise mountain climb once a month, re-discovering the mountain ranges such as Gunung Bunga Buah, Bukit Repin, Bukit Kutu or just jungle trekking anywhere for a day trip.

I just hoped that he didn’t realised how much he had changed due to his illness. It would be devastating and heartbreaking for him if he ever realised the extent of his AD.

For a proud hasher all his life who went for long hashing walks three times a week, scaling mountains once a month without fail until to his early 70’s, suddenly he was relying everything on me from big things like writing his cheques and calls to his bank, to drive him around, to shower him and changed his clothes. ad3

Asked him which mountains (big and small) in peninsular Malaysia that he hadn’t climbed. The answer would be none. He had conquered them all. A few mountains, he climbed more than once. He introduced me to so many off-beaten trekking trails in the jungle and made me ashamed for knowing so little about my own country.

A book worm and avid reader, my heart bled when I watched how his Economist magazines started to pile up on the tables, unopened, untouched.

Every morning, from a very pleasant routines of which he had done daily most of his adult life, his newspaper reading changed into the herculean task. He would keep reading the same paragraphs over and again but couldn’t understand a word. Watching his exasperation with his inability to read, I would quickly tried to comfort him by telling him that its okay, even I was having trouble understanding the story.

I realised that it has been going on for a while then. All the symptoms of forgetfulness, and other out-of-normal behaviours such as losing his way home after wandering off in our orchard… tbcA