WHEN you have a loved one in your care who’s at the end of his life, you have to brace yourself for the many emotions that you never knew existed — from your loved one as well as deep within you.
Dealing with emotions is part and parcel of being a caregiver. Dealing with end of life emotions is also in the scope of that role but regardless of how much you read about it or hear about other people’s experiences, you can never really be prepared for it. Just like death. Even though you know it’s coming, the blow can still knock the wind out of you.
My parents went through two major stages as they were nearing the end of their lives. The same applies to a few relatives and friends diagnosed with terminal illness and weren’t faring well.
The first phase was when the disease was in its end stage. At this juncture, we were just stunned. We knew it’d come at some point, yet we were dumbfounded, didn’t know what to do or expect. There were tumultuous emotions like pain, anger, anxiety, sadness and depression from both the patient and caregivers.
We discussed with the doctors about what we should do next. How could we help? Our loved one may not get better, but surely there were things we could do to delay the inevitable? Could we do something to make them as comfortable and pain-free as possible?
We weren’t discussing hopes for finding a cure anymore. We wanted to know how we could slow it all down painlessly. We were told to maintain much of the care and instructions as before, like keeping to certain diets and routines.
We watched out for fatigue. There may be lack of appetite, constipation, sleeping problems, discomfort and depression, just to name a few. Patients may even experience a wide range of emotions that you’d never seen before, and may even be uncharacteristic of their personality. You’d see a side or several sides of your loved one that you never knew existed
My parents had to deal with so many things when they knew that their time was almost up. At first they were angry. Why did it have to be like this? And “this” referred to ageing and a body that was just not functioning as it should anymore.
They also wanted to reconcile with their past. They needed to talk to someone about it; mostly to tell their story to re-live those moments and to put a closure to some experiences they’d never spoken about before.
As the months rolled by, we found that no matter how much treatment, medication, attention and care were given, they weren’t getting any better. Dad issued instructions way before he became critically ill. He kept telling us that he wanted his wishes understood before he was too unwell to answer questions.
What was initially palliative care at home after several hospitalisations turned into hospice care where you helped them maintain their dignity as they prepared to take that final journey.
You may find that as their condition worsens, they may become more impatient and angrier. Suddenly they want to do things and eat food that had been restricted for the longest time.
A friend, who suffered from stage four lung cancer and was on the highest dose of morphine, wanted to smoke cigarettes. My mum wanted her favourite food. I was baffled! These were the things that got them into trouble in the first place!
I remember arguing with mum about her sudden cravings for budu (a salty fish sauce that’s an East Coast specialty), salted duck eggs and corned beef. These were all forbidden food for people who undergo haemodialysis. She’d glare at me and refuse to eat food specially prepared for her as per doctor’s orders. She’d push the plate away and then refuse to take her medications declaring that it wasn’t good for her to take her medication on an empty stomach.
I was at my wit’s end. We couldn’t risk giving in to her wishes as she might end up in the hospital yet again. So I spoke to her doctors. I was told to stop fighting with my mother. Let her have anything she wanted. There’s no more need to “pantang”. It wouldn’t make any difference any more. She’d reached the end of her road.
Make her happy, the doctors said. Give her anything she asks for. There’s not much time left so make the best of every moment. Make peace, make memories.
Putri Juneita Johari volunteers for the Special Children Society Of Ampang. You can reach her at juneitajohari @yahoo.com