Thursday September 30, 2004

Support for grieving parents

CHAN Lilian has extended a hand to other parents who have lost children. She has developed an online grief support group at www.geocities.com/malaysianmomshare.

“For bereaved parents like us, having a website in honour of our children’s memories is something very precious,” she says. “We are comforted by the thought that a lot of people will get to know our deceased children and will be inspired by our stories.

“At first, I was part of a grief support group from the United States. However, I soon found that having different cultural backgrounds made things a bit difficult.

“We, Malaysians are so different in the way we manage our grief. Malaysians, for instance, are still very private people and are not very comfortable revealing our feelings,” she says. “Unfortunately, it is very hard for bereaved parents to bottle up their grief and not talk about it.

“Losing one’s child is very, very hard. And this is made worse when society does not know how to deal with parents like us.

“That is why I decided to start a support group for bereaved mothers in Malaysia,” she says. “It seemed like the most convenient way of getting in touch with people facing the same situation.”

Chan says she hopes that by encouraging more parents to be open about their grief, it will help others to start talking about their feelings too.

“I also hope that with more bereaved parents talking about their feelings, this will create an awareness among Malaysians, thus helping everyone to better cope with loss and grief.”

Chan says that by talking and acknowledging her own feelings, she has been able to pick up the pieces and start living her life again.

Chan’s grief support group currently has about 25 members.

(excerpt from Star Intech)

I wish more medical caregivers and the public are made known of these when dealing with the parents of a stillbirth or neonatal death:

To be together alone

Bereaved parents need time alone. They need to be able to hold one another.. cry together.. talk together.. reassure one another.. comfort one another in privacy.

To be alone

Each bereaved parents needs space in which they can be alone. Some aspects of the grief process require solitude.

Wanting to talk

Bereaved parents have a need to talk about the death of their baby. Mothers quickly show this need and they should be allowed to talk freely. Fathers tend to “internalize” and withdraw, but should be encouraged to talk about what has happened. Talking about the death of the baby helps greatly.

Photographs

Photos should be taken of every baby who has died. These photos should be made available to the parents. If at first they say no to this offer - they should be allowed to change their mind. These photos become very precious to the parents and especially to other children in the family as time goes on.

To hold and see their baby

Every parent should be given an opportunity to decide for themselves if they wish to see and hold their dead baby. This is particularly important if the baby is stillborn. To be able to see and hold their baby helps establish the reality of their child and this is necessary, especially for healthy resolution of grief. Parents should be encouraged… never forced… and allowed to change their minds if they wish. Always remember that reality is better than fantasy.

Funeral arrangements

Health care professionals should never presume to decide for the parents that a hospital burial (unmarked grave) is in their best interests. Not to know where or when your baby is buried does cause a lot of heartache for many bereaved parents. The baby is theirs… and they should be given full information of all the funeral options and be allowed to decide for themselves the funeral for their own baby.

Please read the full article at SANDs :

About SANDS

SANDS offers support to all bereaved parents and relatives who have suffered the death of a baby anytime from conception through to 28 days after birth - this includes, miscarriage, neonatal death, stillbirth, ectopic pregnancy and genetic/medically advised termination.

Our support to bereaved parents does not cut off at 28 days after birth, bereaved parents whose baby dies later in infancy are also welcome to SANDS.

However, each of us can help by being more aware of the feelings of those newly bereaved parents and educate those we know. This way, we will build a more sympathatic community.

I got this from my friend who lost her teenage son due to drowning. She wrote this in her email for me:

Lilian, this one’s especially for you in memory of Vincent and your times at the hospital… I am sure Vincent would have wanted you to have this letter….

THIS IS BEAUTIFUL ..AND YOU WILL CRY…
Sally jumped up as soon as she saw the surgeon come out of the operating room.
She said: “How is my little boy? Is he going to be allright?
When can I see him?”
The surgeon said, “I’m sorry. We did all we could, but your boy didn’t make it.”
Sally said, “Why do little children get cancer? Doesn’t God care any more?
Where were you, God, when my son needed you?”
The surgeon asked, “Would you like some time alone with your son? One of the
nurses will be out in a few minutes, before he’s transported to the university.”

Sally asked the nurse to stay with her while she said good-bye to son.
She ran her fingers lovingly through his thick red curly hair.
“Would you like a lock of his hair?” the nurse asked.
Sally nodded yes.
The nurse cut a lock of the boy’s hair, put it in a plastic bag and handed it to Sally.
The mother said, “It was Jimmy’s idea to donate his body to the
university for study. He said it might help somebody else. I said no at first,
but Jimmy said, ‘Mom, I won’t be using it after I die.
Maybe it will help some other little boy spend one more day with
his Mom.”
She went on, “My Jimmy had a heart of gold. Always
thinking of someone else. Always wanting to help others if he
could.”
Sally walked out of Children’s mercy Hospital for
the last time, after spending most of the last six months there.

She put the bag with Jimmy’s belongings on the seat beside her
in the car. The drive home was difficult. It was even harder to
enter the empty house. She carried Jimmy’s belongings, and the
plastic bag with the lock of his hair to her son’s room. She
started placing the model cars and other personal things back in
his room exactly where he had always kept them. She laid down
across his bed and, hugging his pillow, cried herself to sleep.
It was around midnight when Sally awoke. Laying beside her on
the bed was a folded letter. The letter said:
“Dear Mom, I know you’re going to miss me;
but don’t think that I will ever forget you,
or stop loving you, just ’cause I’m not around to say I LOVE YOU.
I will always love you, Mom, even more with each day.
Someday we will see each other again. Until then, if you want to adopt
a little boy so you won’t be so lonely, that’s okay with me. He
can have my room and old stuff to play with.
But, if you decide to get a girl instead, she probably wouldn’t like the same
things us boys do. You’ll have to buy her dolls and stuff girls
like, you know.
Don’t be sad thinking about me. This really is a
neat place. Grandma and Grandpa met me as soon as I got here and
showed me around some, but it will take a long time to see
everything.
The angels are so cool. I love to watch them fly.
And, you know what? Jesus doesn’t look like any of his pictures.

Yet, when I saw Him, I knew it was Him. Jesus himself took me to see GOD!
And guess what! , Mom? I got to sit on God’s! knee and talk to Him, like I was somebody important.
That’s when I told Him that I wanted to write you a letter, to tell you good-bye and
everything. But I already knew that wasn’t allowed. Well, you know
what Mom?
God handed me some paper and His own personal pen to
write you this letter. I think Gabriel is the name of the angel
who is going to drop this letter off to you.
God said for me to give you the answer to one of the questions you asked Him ‘Where
was He when I needed him?’ “
God said He was in the same place with me, as when His son Jesus was on the cross. He was right
there, as He always is with all His children. Oh, by the way,
Mom, no one else can see what I’ve written except you.
To everyone else this is just a blank piece of paper. Isn’t that
cool? I have to give God His pen back now. He needs it to write
some more names in the Book of Life.
Tonight I get to sit at the table with Jesus for supper. I’m, sure the food will be great.
Oh, I almost forgot to tell you. I don’t hurt anymore. T he cancer is all
gone. I’m glad because I couldn’t stand that pain anymore and God
couldn’t stand to see me hurt so much, either. That’s when He sent The Angel of Mercy to come get me.
The Angel said I was a Special Delivery!
How about that?
Signed with Love from:
God, Jesus &Me. ”

Indeed, how does one deal with the thought of dying? What reaction goes through the mind? How do we cope when we are told that we are dying? Or our child? I had been there once and I fought back because there is no other way.

Here’s an excerpt written by Dr Suzy Jordache

Initial reactions

Most people live their lives as if somehow immune to life-threatening events. They tend to believe they’re in absolute control of their time here. A diagnosis of cancer or other life-threatening disease shatters these assumptions.

The immediate reaction to such bad news tends to be a mixture of disbelief, confusion, shock and numbness. Most people find it hard to remember what’s been said and it’s often necessary to go back over the information at a later stage when the shock of the news has passed a little.

Adjustment styles

Once the initial confusion and panic settles it seems that people interpret the threat posed by the bad news in several ways. Greer and Watson (1987) identified these five common adjustment styles:

• Fighting spirit: ‘This is a challenge. I’ll win.’
• Avoidance or denial: ‘It’s not that serious.’
• Fatalism: ‘It’s out of my hands. I’ve had a good life - what’s left is a bonus.’
• Helplessness and hopelessness: ‘There’s nothing I can do. What’s the point of going on?’
• Anxious preoccupation: ‘I’m so worried about everything all the time.’

Read further how others can give support to the terminal patients.