Yesterday, I had to have a sad conversation with a friend whose beloved father is dying of cancer. She called me to ask how best to deliver the news to her kids (age 9 and 11) and whether or not they should see him for the last time.
First, can I just say: FC. FC. FC.
While I would much rather have gabbed about anything other than this, I was so glad that she called me. Saying good-bye to a dying relative or friend — what to talk about, when, and how — doesn’t (usually) come naturally. Especially when children are involved. The Silver Lining is that there are many very practical ways to help children be a part of the dying process.
The first thing to do is to have a conversation with your children to explain what is happening and what they can expect. For example:
As you know, Grampa has cancer. It has spread to his whole body and he is not going to get better. That means that he is going to die.
Take a deep breath here to give the children the opportunity to absorb the information. Then, say something along the lines of:
Cancer is awful and terrible. It is important to know that it is no one’s fault that Grampa is dying. It is also important to know that he is peaceful and doesn’t feel any pain.
Give children the chance to ask questions. Silence, without jumping in to fill the silence, is key. Respond to children’s questions honestly. Sometimes the simplest, most honest response is difficult during an emotional time. Children need honesty to feel secure. It can be hard to tell a child, “I don’t know,” when you truly don’t know the answer to a question, but this response is the right one.
When the child has no questions, say:
If you ever have a question, you can ask me. Anytime. Anywhere.
I know it’s hard. It’s so f-bomb hard. But this conversation needs to happen. Remember how I’ve always said that a child’s imagination is far worse than reality? Well it is. YOU have the opportunity to prevent the imagination from going to places like, “Did I cause him to die?” See what I mean about being far worse?
The next step is to offer the opportunity to say good-bye to the dying person. When a child or grandchild says goodbye, the parent or grandparent suffers less. It may be a heart-wrenching encounter to witness, but the potential benefits outweigh the consequences of not bidding farewell. That said, it is imperative that no child be forced to say good-bye. There is no “should” here. It is also really important for each child to make his or her own decision. Children need to be assured that there is no right or wrong answer. Whatever they decide to do is a-ok.
If they are unsure about what to do, assuring them that you will be there to support them and help them through the process helps immensely. Offering a child or grandchild the services of a hospice social worker can be a great thing for the child or adolescent to prepare for saying goodbye and adjust to the grieving process.
If children do decide to say goodbye, it is important to prepare them for what they will see in terms of equipment and what the person will look like. The hospice team can also help you with this. For example, if a person is dying at home, the dialogue could go something like:
Grampa will be laying in bed. He will have a small tube coming out of both of his nostrils. The tube provides oxygen to help him breathe and keep him comfortable. He will also have a tube (called an IV) coming out of his arm. This enables him to receive medicine that keeps him comfortable.
Another pregnant pause here…
Grampa is asleep now and not able to talk. Even though he can’t talk to us, we think that he can hear us, so you can tell him anything you would like to say.
Allow the child to spend as much (or as little) time with the dying person as needed. There is no rush, but also no mandate to stay for a particular amount of time. Again, there is no “shoulding” here.
After the children have said goodbye, it is important to have a conversation with them to assess how they are doing. For some, it may be incredibly heart wrenching. For others, it may be cathartic. Now is the time to encourage dialogue and listen.
The death of a family member is very much a family event. It is for this reason that children need to be included in the dying process and given the opportunity to say goodbye.
I’m so sad for my friend and for all of those who are having to cope with this pain. There is a Silver Lining in the tremendous support omnipresent in a hospice team. Calling on the team, even if you don’t know exactly what you want or need, will be immensely helpful throughout the process.
You are so right with keeping it straight and simple (as it can be) and clear. My father died three weeks ago unexpectantly and we did not get a chance to say goodbye. I had my five year old in the hospital with me and he knew something awful happened from our reactions. I didn't know what to do at first, but then I knelt down, looked at him in the eyes while holding his hands and told him that "Bumpa's" body stopped working and that means he died. He can not see, hear, or move. He looks like he is sleeping, BUT HE IS NOT. I also had to explain it several times while at the funeral home and read "I miss you" every night to him for a week. He still will ask a question now and then and I keep it simple and he moves on when he is satisfied with the answer.
Wow, Alisa. First of all, I'm so sad to hear about the death of your father. Secondly, You were absolutely right on in your communication with your five year-old. It's so incredibly difficult, but you did (& continue to do!) a fabulous job. Take good care.
I went through this with my youngest daughter when my mother, her grandmother died. None of us were there. We had been there for Christmas, this was 1974, and she had been sick. We left on a Saturday because we had tickets for a playoff game between the Vikings and Dallas Cowboys. My mom loved football. As we said goodby she told us if we saw the camera on the crowd to wave because she would be watching for us. We left for home and about an hour and a half after we left she was found laying on her bed, dead, by my dad. Our daughter was only 4 at the time and we thought it would be too hard on her to see her first dead body. Well, she's 44 now and still reminds us at times how she was cheated. I have never held either of our girls back from going to a visitation or a funeral since. I learned from them, sometimes no matter the age, children need to say goodby as well as adults. I hope others will take this into consideration at the pending death of someone who has been really close to a child. I have the feeling they don't forget and have the sense of extreme loss without having been able to begin the healing process.
What a powerful story, Dorene. Thanks so much for sharing. Your story illuminates the long-lasting effects of choices made with children. Thank you for sharing your words of wisdom! Happy New Year!
After my mother had a massive stroke, she could respond minimally for several months before slipping into a persistent vegetative state. Our daughter was three at the time and we included her in the visits to see Nana (explaining to the nursing staff at the beginning that it was important for both of them to see each other)
She sang songs for Nana and brought her pictures, often generating a smile or hand motion to show that Nana understood and enjoyed the offerings. One day, walking out of Nana's room, our daughter announced, "I'm good medicine!" And she was.
When the vegetative state arrived, we didn't lie to our daughter…we told her Nana couldn't talk to her or hold her hand, but we think she can hear, so keep talking to her and singing.
A year after the stroke, I got the call early one morning that mom had passed in her sleep. As I hung up the phone, I knelt before my daughter – then four years old – and, with tears in my eyes, told her "Nana died last night and I'm sad that she won't be here to watch you grow up." She took her little hands and held my face close to hers as she said, "No Mommy, you're really sad because you don't have a mommy anymore."
Kids get it – even at a young age!
Thank you for sharing your story. Kids DO always get it!!!
I am trying to help my daughter (age 28) to prepare for the death of her father. I know first hand that you can’t, it’s never easy. I lost my mother to cancer in March of 2004. I was there when she drew her last breath, I held her hand as I sit beside her bed in the hospital. That day I called my brother to come back to the hospital that it was just a matter of time. Everyone took 15 min or so to talk with her, she was in a comatos state but they said the hearing was the last to go. Her organs were shutting down, her skin was changing color, things were happening exactly how they said they would. My mother was a Christian woman and her faith was strong so there was no doubt as to where she was going, she just needed to hear from us that everything was ok and that she could let go, so she did at 3:25 that afternoon.
My daughters daddy is very sick, lost a lot of weight and has had a feeding tube for almost a year now! Last October is when they done surgery to remove cancer from the back of his tongue, now not even a year later (this past June) the cancer is in his right shoulder, right hip and left lower back (bone cancer). Dr.’s explained there is no cure for bone cancer, its just a matter or time. They have done Radiation again and said they were going to do chemo but they seem to be taking their time on getting it started. My thought is that they don’t want to put him through all of the unnecessary treatment without hope. My daughter is a strong young lady, she is raising three beautiful children (8, 6 and almost 2) pretty much by herself. All I know to do is prayer for her, and the kids because they are seeing their grandfather wither away. I think they know he is dying but they have never had to watch someone dying slowly. I know where she is emotionally but I can’t find the words or actions to help her prepare other than praying for her and letting her know exactly how she feels. Please pray for my daughter and I have been praying that the Lord doesn’t let him tarry to long.
Dear Roxann,
Thank you for sharing your story. I am so sad and sorry to hear what you are going through. Death is so very difficult. I am sending my prayers to you all.
Please take good care of yourself during this difficult time!
Very best,
Hollye