10/04/2026
A question was asked to a group of parents (active primary caregivers) for children with different critical long-term illnesses.
❓Do you attend any support group
❓If not, would you like a support group
❓If so, are you able to get your child a temporary carer for about 2-3 hours each month
❓Do you prefer, virtual, or in-person support group
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In-person, was the majority of answers.
Below is a summary from answers given by thirteen parents.
✍️
In person will give me opportunity to “step out a little” but also allows me to sit next to someone who truly understand me, feels what I feel and can reach out to my hand and say “I see you”
I also want to know from others how they are coping and if what I experience is also their experience - I want to see them say these experiences, not through screens but face to face. I want to get a hug and hug them too. I think this will help me.
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JoyceSpeaks advocates for such caregivers: here is her WHY.
👉In a hospital ward, or a therapy unit, children are receiving excellent care. Doctors and all healthcare workers are doing amazing job to care for the children.
Parents, siblings and family caregivers are happy that the healthcare systems are doing a good job.
So, why are friends and some family members wodering why the (caregivers) are depressed, feel isolated, exhausted, etc.
They caregivers say this because, they are feel that way. They have layers of losses that you do not see. They are processing things in their heads, alone: unseen and unheard.
They are thinking of the “Ifs”, what if my child dies? What if I sought a diagnosis earlier?
They are still battling with the big “name of the diagnosis” given years or months back, they are battling the loss of good health of their precious child, their loss of cognitive function, and a daily routine for care, that is exhausting.
They have little and "enough" knowledge on medical terminologies. Knowing the medical inevitability of death, while they hold onto hope. The heart is having a tug of war.Hope Despair Hope Despair.
They live a life of fear and hope, all felt at that same time. Emotions move like a pendulum :despair and hope. A child’s good day brings hope; a bad day brings despair. This is their life.
Some are carrying unspoken rejection from their own spouses, families and friends from having a child “with a strange condition”
The many layers of grief and no one sees, after all the child is physically present.
So they hide their sorrow, pain and desperation from the society, yet feeling alone, misunderstood and their grief invalidated.
Offer them space to talk.
“A supported caregiver is more likely to provide nurturing, resilient care for their child”