Family’s moving story of Palliative care in action
The National Palliative Care Forum at Hotel Tanoa Tusitala opened with a moving and personal story by a mother and son who shared about caring for their beloved husband and father towards the end of his life.
The late Seumanutafa Dr. Malcolm Hazelman’s wife, Fu’a Hazelman and her son, A’eau Chris Hazelman, presented a paper on being caregivers for their beloved Seumanutafa.
A’eau admitted that he has given many speeches in his time especially in the education capacity but it was his first time speaking to the health sector and it was unique in the sense that it was also on a personal note.
His paper focused on the theme of “learning while caring” saying that their experience of providing palliative care for their father was a journey of trial and errors.
“I must say that this is still pretty raw because we only just farewelled my father four months ago and it is not an experience that one can prepare for,” A’eau said.
“First there was fear, not only for your loved one but then whether you are doing the right thing for your loved one as the caregiver.”
After his father was officially diagnosed with a rare form of Sarcoma after 2-3 months of not knowing what was happening to their father, A’eau spoke about the fear that you experience when your loved one is facing a terminal illness.
“Doing your own research about what is sarcoma and to realize there are 50 different types of sarcoma and my father had a very rare form of it – less than one percent of the world will ever have it. Because it was so rare there was no cure -Hence the fear, hence the pain and the uncertainty,” he said.
“My father is a very active man, he was a horticulturalist and you will never find him at home but to see him now in bed, that was a big change.
“There’s also the fear for you as a caregiver, I’ve never been a nurse before, all my life I’ve been a teacher… but when something like this happens, I myself was very scared of trying to deal with my father.”
The inevitable realities of palliative care sunk in for A’eau and his family and he openly shared about the experience of doing the “ dirty work”.
He spoke about how difficult it is for any parent or child to have to face the delicate situation of tending to their loved one's daily living activities such as bathing, toileting and dressing.
“I have to acknowledge my mother. If ever there was a time that you actually see the coming in action of your wedding vows in sickness and in health – I saw it with my mother and how she dealt with my father.”
Visiting a patient during palliative care is something that A’eau wanted to address.
He pointed out that while it was well meaning, he advised that as palliative caregivers – boundaries must be respected and acknowledged because the patient is in pain during this phase.
“I know everyone means well but there’s a line that you as the caregiver must draw and say, please stay home. It got to that point,” he said.
“The one thing about our people and our relatives and the faifeau …sometimes they don’t know when to stop. Our visitors mean well but as the caregiver, I and my mother had to say ‘ua lava, go home please, I know you mean well and love our father and please don’t take it wrong and we appreciate you coming.’”
Asking questions is something that A’eau and his family encourage.
He urges others to put pride aside and ask for help. Transitioning from educator to caregiver meant that he was learning from nurses, doctors, massage therapists, personal research and advice from relatives.
Perhaps the one thing to keep in mind was that the journey of palliative care is not a “one size fits all” pointing out that it was a steep learning curve for his family.
Above all, the key thing is to make sure that you show your love and strength for your loved one, right to the end.
“As a caregiver, I worry when you say we write down strategies because in my own way of looking at things, there are no rules, there are no ‘how to do it’ its trial and error, we learn as we go but the key element in all of this, your loved one needs you – they need your love, they need your strength.”
“When we got the news that we didn’t have much time, we all tried to be very strong for him.
“That’s one of the things that you really have to ensure that he saw that we were strong, that he saw there was nothing wrong with him being sick, that we would be with him right to the end.”