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.

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.

Yahoo! Blog Post: Polling Day reflections

I have never seen the likes of it — people actually caring enough about Singapore politics to talk about it non-stop. I swear if I took a cab today, the driver might just go, “Ok, sir, do you mind if I just take you to your destination and not talk about politics during your ride?”…

Read more at Yahoo!

#joy

Things that bring us happiness these days tend to revolve around Kai. His name in Japanese means “The World”, so he’s our world after all.

We’re happy all of the time because we have Kai. Happiness tends to be an enveloping state of mind. But there are little moments that happen throughout that are just simply moments of joy.

You can put a finger on it.

What’s your finger on?

***

IMG_0677 Last weekend when we went to visit my parents at their home, my father looked a little worse for wear because of Parkinson’s. His stiffness and gait was more pronounced than it had ever been.

As it was a hot day, Kai was a little more than cranky when we arrived, and Naomi and I had wanted to let his grandpa hold him, if that was at all possible, for a little while.

It was possible, as grandpa was seated on a wide armchair, so he didn’t really have to carry Kai, who was all of 8kg last week, but just allow him to settle across his lap.

We were kind of worried Kai would start wailing once we placed him there, and were at the ready to pick him up again if he did.

More than the opposite happened. First, Kai smiled at his grandpa, and grandpa reciprocated the best his facial muscles knew how.

Then Kai laughed. For a baby who’s only started how to chuckle a few days earlier, he let out a stream of chuckles, complete with deep audible intakes of breath in between.

Grandpa really, really smiled, and then as he cradled Kai in his arms, they both gurgled and cooed nonsense to each other.

Kai’s starting to drool a lot these days, and he’s making a mess of grandpa’s hands and arms just as grandpa is doing the same to himself because of Parkinson’s Disease.

It’s a slimy, icky, gummy, grinny, gurgly bonding session between Kai and his grandpa, who suddenly looks like he’s turned back a decade.

***

Monitoring baby Yesterday afternoon, as I was struggling to put words to a song and a skit, the baby monitor I had on the desk crackled to life, its blue lights flickering and its speaker letting me listen to Naomi’s mother patting Kai and singing twinkle twinkle little star, which is the only song she sings to him.

But because she’s trying to put him to bed, she’s singing it lullabye style, which is slower and softer and doesn’t have any hand actions because you are carrying the baby after all.

She sings and pats for a good five minutes or so, and Kai doesn’t sound like he’s anywhere near sleeping, and keeps gurgling and cooing at Twinkle Twinkle Grandma, who is tiring quickly.

The patting stops for a moment, and then starts again, so I think she’s put him down in his cot and then resumed patting and singing.

Kai’s still gurgling, and Grandma gets a little impatient and tells him in Mandarin and Taiwanese to “quickly go to sleep”. She sings another few bars, and then says again “go to sleep, go to sleep”.

The patting becomes erratic and the singing stops, but the verbal urging picks up and Grandma says, “Come on Kai, go to sleep, go to sleep”, and starts to snort loudly and sharply in between saying “go to sleep”.

This snorting startles me for a few seconds before I realise she’s merely trying to mimic snoring in the hope that Kai picks up the cue, since he’s already missed the verbal and singing ones.

The snorting continues for a few minutes as I listen in, trying to control my laughter. Then abrubtly, it stops, and I hear in Mandarin a very resigned, “OK, since you don’t want to sleep, so be it. Grandma wants to sleep”.

Within seconds, real snoring is heard – a lot more rhythmic than the imitation ones, and in several more minutes, Kai stops gurgling. Some more rustling is heard, then all becomes quiet.

Reason to try to smile

My father doesn’t smile very often these days. It takes an effort because Parkinson’s makes control of your muscles, including the facial ones, difficult, and the sufferer becomes withdrawn and unsocial because of his inability to interact in the ways we normally do.

Conversation is also a strain because of the difficulty in controlling the vocal cords, and talking to him is mainly just that – talking to him. The engaging wit and ticking mind just stays in there somewhere, masked by Parkinsons’ stiffness.

Except last night when I said to him that I don’t care if he’s uncomfortable, because he’s got to be at the hospital next month to welcome his first paternal grandson:

His face contorted into the biggest smile I’ve seen him smile in years, and he said in a voice quavering either from Parkinson’s or from emotion, “Of course I will be there. I will be there waiting with you”.