Dementia In The Family

I think it must have been more than 15 years ago when my father began showing signs of Alzheimer’s Disease.

We used to joke about how his two major symptoms then – forgetfulness and constipation – meant that he could never remember the last time he went to the toilet.

Things only started getting awry when he would go for long walks outside his office and forget where he was going, and when he was supposed to have come back.

I didn’t think much of it then, and the family used to say that it was partly his fault for not wanting to keep his mind active – because the conventional wisdom was that if you did things like Soduku (Do Soduku So You Won’t Go Suku was a tagline we used at home) or the crossword puzzle or chess, you would stave off the progress of senility.

About 10 years ago, my father started displaying signs of Parkinson’s Disease – tremors in his limbs and issues with balance started to creep in. Again, we didn’t take it seriously enough and only got him diagnosed officially a year or two later, when we finally thought it prudent to put him on medication.

Our journey as caregivers began then. We were lackadaisical at first – partly because I didn’t live with my parents, and partly because till then, I had never, ever thought of my parents as my dependents.

For the first year after his Parkinson’s diagnosis, my father must’ve skipped at least half of his medication, and when he did take them, it was quite likely to have been at the wrong time. It was only after we got him warded for some other matter – when he developed a slow bleed in his esophagus (due to still being on blood thinning medication when he actually didn’t need to any more) that we got a chance to reset his medication regime.

Dad got progressively worse with his Parkinsonism. His walks were reduced to shuffles, and every trip to the bathroom fraught with danger, even as support bars and other accessibility aids were installed.

Training the helpers who lived with my parents were another thing altogether. Once you get that into your minds, you’re ready to face reality.

I started calling to check on whether the helpers had given my father his medication at the right time, and on whether he’d gone to the toilet, and as another year passed, my father’s ability to speak coherently was reduced. Monthly consultations with the neurologist ruled out a stroke. It was simply Parkinson’s taking hold of his ability to control his vocal cords.

Dad became more reserved and reticent about wanting to go out – which, in reality, was quite difficult. Bundling him in and out of my car was an effort, and we could only leave the house for an hour or two at most. This took a toll on his mental well being. People had also been shouting at him, thinking that he was hard of hearing. This meant that all semblance of a normal, communicative social life was disintegrating.

Physically and physiologically, his condition worsened. He fell heavily once, fracturing his hip. But because he was by then so stiff from Parkinson’s, we didn’t know that he had been badly injured. A trip to the Orthopedic’s clinic confirmed it, and worse still, nothing could be done, and a hip replacement would have been expensive, and pointless.

Then my mother died. Quite tragically, almost in front of him, at home. He had noticed the chaos when medical crews were trying to get her to the hospital, but I kept telling him for days after that Mummy was in hospital, and should be home soon.

For all that Parkinson’s does to seize your muscles, including those on your face, it is the eyes that betray your emotions still. I saw shock and heartbreak when I finally told him we were going to bury my mother, but that we could not bring him to the cemetery.

In the weeks and months that followed as my siblings and I went about settling our mother’s estate, we took a much more detailed stock of our father’s condition and attendant needs. Alzheimer’s had set in, together with what was now termed “end-stage Parkinson’s”.

Every few days my father would ask me where my mother was. And so, every few days he’d experience shock, heartbreak and then realisation and resignation. This has always been the hardest aspect of taking care of my father. I find it better to look away from his eyes when he asks.

I am forever grateful that my mother’s best friend and church pastor came to see my siblings and I, and advised us to seriously consider a nursing home for our father. He said as a pastor, he had dealt with so many families in the same situation, and that it was normal that you’d worry about whether you’re giving the best possible care for your aged and medically needy parents.

More importantly, it was not ok to feel guilty about “sending” your parents to a nursing home.

We weighed up the options. Keeping my father at home would mean the helpers would need to be 24/7 and ready to assist him. Having had two helpers in my parents’ house then, we thought, ok, we could manage.

Unfortunately, we neglected to check on him thoroughly enough. He developed bedsores so badly infected that by the time we got him to Tan Tock Seng Hospital, the doctors there asked us to prepare for the worst.

A month in acute care and another two in the fantastic rehabilitative ward of the Renci Hospital bought us enough time to look for a nursing facility for him.
By the time his wounds healed, the doctors at Renci informed us that Parkinson’s and Alzheimer’s were so advanced in my father’s case that full time care was an absolute necessity. Home care meant 24/7 attention plus weekly nurse visits if we didn’t hire a nurse already.

If we wanted to push it, we could have said we’d look after him at home. Technically, you could. We decided not to. It’s been more than a year now that my Dad’s been in the nursing home, where they look after his every need.

I feel guilty not because we’ve placed him there, but because I don’t make enough time to spend with him, in the few hours of the day that he’s lucid. I will make it a point to do so.

If you’re in a similar situation, do make a point of talking to your medical providers – one thing we found was that while they’re there to help, a lot of it is up to you to provide the information needed for fullest care possible. For instance, I’d never have known that Parkinson’s medication lowered blood pressure, and therefore my father needn’t have continued with blood pressure lowering medication (at one point, his BP went dangerously low).

The Health Promotion Board has organized a bunch of caregiver resources and a Dementia InfoLine at 1800 223 1123 where you can arm yourselves with information to make informed decisions about your loved ones, and just as importantly, for yourselves.

Don’t forget that your own lives are, or will be, just as affected as caregivers. In fact, just this week while at a script brainstorming session, my colleagues and I came across an article regarding midlife crisis and depression. Parents’ illnesses and death was listed as one of the main catalysts.

Sometimes I still struggle with managing the responsibilities as a son and a father, but I am glad there’s help at hand. Do take time to learn more, even if you are not in the situation I’m in. You’ll have friends who are, and they’ll need a hand sometimes.

Remembering The Recipe

The missing thought bubble above Zoe's head probably has many unsavory thoughts about the grinning idiot next to her
The missing thought bubble above Zoe’s head probably has many unsavory thoughts about the grinning idiot next to her

Last month I attended the premiere of the telemovie “Recipe”, commissioned by HPB, directed by Eric Khoo, starring Zoe Tay and aired on Mediacorp Channel 8 on 29 September 2013.

As I’ve mentioned previously, the movie deals with dementia, and the topic was handled as sensitively as possible, and made for a good 40 minutes’ viewing at the premiere. On television of course, you must’ve had to contend with the commercial breaks, because, you know, public service message or not, our local broadcaster still needs to make money.

After the premiere screening, there was a little gathering outside the cinema where invited guests made most of their photo opps with the stars of the show. Apart from having worked with Moses Lim (for the theatre production ‘Happy Ever Laughter’ last year) and the movie’s writer Wong Kim Hoh (who was the first ST reporter to interview me – for a Life! column known for featuring freak shows) I don’t really know the other notable people involved in the telemovie.

So I went around introducing myself and I asked Zoe Tay if she remembered me. I told Zoe I remembered her playing mahjong at a mutual acquaintance’s home, where she asked if I could bring durians from my mother’s durian tree the next time they had a session.

She looked at me with eyes betraying horror, probably vaguely remembering such an instance, but not sure whether it was an incepted memory, not sure whether there was an unsavoury extension to that memory that she would have liked erased, not sure whether I was pulling her leg, and not sure whether to call the nearest Mediacorp artiste manager to get me thrown out of GV Vivocity.

The Queen of Caldecott held her poise, thankfully, and we posed for photos.  You can see from the shot that she’s still wondering whether she gets paid enough to deal with asses like me.

OK, enough goofing off – I was actually glad that the HPB pooled these resources and talent together to get information about dementia known to a wider audience. Now, at least for the people who managed to watch “Recipe”, you’d know that dementia is NOT a normal form of aging, and that there are signs to look out for:

  1. Memory loss – especially one that affects day to day functioning – even remembering the day of the week and what days come after, for example;
  2. Difficulties with doing familiar tasks
  3. Difficulties finding the right words and with communication
  4. Mood swings
  5. Confusion of time and place
  6. Misplacing things
  7. Problems with abstract thinking
  8. Poor or decreased judgement
  9. Changes in mood or behavior
  10. Changes in personality
  11. Withdrawal from work or social activties

It is also a progressive disease, and signs might not be obvious in the beginning. But it is important to keep a look out for them, and just like in the movie, deal with them with the network of support that is available to us in the public healthcare system.

There are nearly 30,000 recorded cases of dementia in Singapore presently, and you can imagine, with the lack of public education, many more being unrecorded and untreated.

The look of horror in the character Madam Ching’s eyes when she can’t figure out where her hawker stall is (because she’s moved into her daughter’s home), or remember the supplies she needs for the day’s cooking sums it all up – patients of dementia need constant care and support.

We’ve also seen from time to time, FB and twitter appeals to help look for an aged relative who’s gone wandering off for hours. It is terrifying and heartbreaking, and one of the ways we can help is to arm ourselves with as much useful information about dementia as we can get.

Because of the constant care required to look after dementia patients, if you have a relative or friend who has dementia, it’ll affect you as well. You’ll want to remain as positive as possible, and to provide as encouraging and supportive an environment as possible for everyone around you.

I encourage you to watch “Recipeonline, right after this blog post. Tell your friends about it too. Like what the specialist in the telemovie says, essentially, the person suffering from dementia may have memory loss, mood swings and personality changes, but he or she is still the same person inside who needs your love and support.

If you do need more information, or someone to talk to about dementia – call 1800 223 1123 or browse through the dementia website.

Eric Khoo’s Recipe – A Film About Dementia

Recipe Poster

I was invited to watch an Eric Khoo telemovie last Tuesday called Recipe. It stars Zoe Tay, Li Yin Zhu, Moses Lim and Jayley Woo, and deals with the topic of dementia.

Why is this important? Dementia affects our aging population, and our aging population is growing. In 2005, there were about 22,000 recorded cases of dementia among the 65 and older in Singapore and this looks set to double even before 2020.

What this means for people with dementia, caregivers and the healthcare network cannot be underestimated. And yet, there are many of us who don’t know enough about dementia to even begin to know how to deal with it.

For example, dementia is not normal aging. In whichever form it takes – either Alzheimer’s or vascular dementia (which is caused by strokes), it is an illness that needs medical attention, and it is a condition that needs care and monitoring.

I wish I had known even this basic information years ago, because this subject matter is something I feel very strongly about – my family is dealing with it. Nonetheless, I am glad I’ve learned from the wealth of information available in our healthcare system. Being the immediate family member in charge of managing my father’s illness also presents an educational opportunity – telling my friends, and my father’s friends what’s going on with him is something I seldom tire of.

But I am glad that there are attempts made, like this telemovie, to put the issue up for education and discussion.

This film tells the story of the journey of Madam Ching, who’s been running her hawker stall for several decades selling scissor cut curry rice.

Trouble starts when the snaking queues for her famous fare begin to shrink after her culinary skills take a dive and become erratic. Her daughter Qiu Yun steps into the picture when an accident occurs at the stall. And at follow up medical appointments, it is discovered that Molly has the beginnings of dementia.

The other players in Madam Ching’s journey are her family, friends, workmates and customers, and they all share in her pain, fear and at times outright terror at the unknown.

It is a sensitive portrait of people dealing with and trying to make sense of the sometimes unpredictable family life that dementia brings.

It is something that is close to my heart, and you know I would never encourage anyone to watch Channel 8, but here it is, I’m telling you now – when they screen this on the telly on 29 September, 9pm, WATCH IT. Or record it to watch later.

For more information on dementia and on Recipe the telemovie, please click through: http://hpb.gov.sg/HOPPortal/health-article/HPB055017

 

With HRH The Queen of Caldecott Hill. Zoe Tay's performance in this tele movie is her best ever, IMHO.
With HRH The Queen of Caldecott Hill. Zoe Tay’s performance in this tele movie is her best ever, IMHO.

 

The beginnings of Alzheimer’s and the loss of healing

This morning I took my father to his quarterly cardiologist’s check-up, and while waiting our turn, I spoke to him about what I’d been up to at work – about so-and-so that was his client and now mine who called me asking a favour – and he had some difficulty remembering who I was talking about.

No big deal, since it’s been a few years since he’s been in the office.

Then he asked me where my mother was. I missed a beat, then quickly recovered to tell him as flatly as possible, for who’s benefit, I still don’t know, that Mummy passed away in February it’s been almost four months now.

In eyes dulled by the passage of Parkinson’s, you can still see shock, grief, immense sadness, and then resignation.

I do not look forward to telling him again when he forgets again.