New to site and lotsa questions!

[kersherb]

Hi everyone. This is such a great site. Thanks for whomever started it. I fumbled around on the web for quite a while before finding this. I have been reading people's posts mostly and that has been so informative and helpful.

I am 39. My mom is 59. She is at end stage SCLC. We are just getting hospice in today as a matter of fact. She was dx in SEpt of 07. Went thru numerous chemo's. We had a lot of fun this past year. Making memories with grandkids (my girls 5 and 9 and my nephews 6 & 9) They are soooooooo close to my mom. She was always doing stuff with them. I work full time and she did not do daycare for me but was always picking them up from school taking them to the beach/museums/ fun grandma type stuff. They have been missing her already because she has been too sick to do any of that.

Here are my questions:

1. My nine year old daughter is having a hard time does anyone know of any books or websites or anything to help her? HOw do you talk to your kids about this?

2. How do you know what to do at the end? Does it just come to you? What kinds of things do other people do? How do I help my Dad who is the main caregiver? He always says he dosne't need anything.

3. What does sticky mean on the posts? I thought it was somebody's nickname

Thanks for any help or pointers.

[MsC1210]

Hello Kersherb and welcome

I am so sorry you had need to find a site like this but very glad you've joined us.

I have some advice, I hope it helps a bit.

First of all, Hospice was an absolute God send for us. They were so wonderful in helping us through those last days. They will be there to guide you all through the process and will explain what is happening, etc. (At least that was our experience. I know not all Hospice services are the same quality, I hope you will have the same type we did though)

I have shared this piece on here before and maybe it will be helpful for you with your children....This is more geared toward a hospital type event but perhaps it will be at least a guideline.

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Q&A: Helping Children of adult Cancer Patients

From CancerWise, June, 2005

Should a child visit a parent with cancer in the Intensive Care Unit (ICU)? How do you explain the disease and treatment in a way that he or she can understand?

One person who regularly answers these questions is Martha Aschenbrenner, pediatric outreach manager at The Children’s Cancer Hospital at The University of Texas M. D. Anderson Cancer Center.

For years, Aschenbrenner directed the M. D. Anderson Child Life Program that provides emotional support to pediatric cancer patients. Now she runs a new program that supports the healthy children of adult cancer patients. Below, Aschenbrenner discusses her role and offers tips to family members on helping children cope.

How can family help children of adult cancer patients?

Be honest with kids in an age-appropriate manner. This means you will give more information to older kids, but for younger kids it will be shorter bits of information and in a more concrete manner.

Tell children:

The name of the disease

Treatment basics

What physical changes might happen

How their routine might change

What they want to know about death

How do you handle questions from children about death?

Don’t be surprised if children ask if their parent is going to die (this is normal). Don’t answer that question with any absolutes. Generally, it is best to tell kids, ‘We hope not. That is why we came to the hospital. The doctors and nurses are providing the best treatment and medicine.’

But never promise children that their parent will not die. This is a good opportunity, if they ask about death, to bring up the topic that all living things die, including people.

Sometimes when parents are worried about how much information to give their children, I ask if they would rather their kids get their questions answered from the Internet or from them?

If a child does not ask questions, is he or she OK?

If a child isn’t asking questions, it doesn’t mean he or she doesn’t want information. Sometimes it helps to sit down with children and say something like ‘You know, if my dad was in the hospital, I think I might wonder about ______. I was wondering if you have thought about that?’ There are times that kids are either afraid to ask questions, or they don’t know what questions to ask. And then sometimes, they really don’t have any questions! So just remind them that any question is OK, and no topic is off limits.

How do you help younger children understand and cope?

With younger children, age 2 to 5, play or books work great. By playing with kids you build a very special relationship with them. Sometimes through play we can visit with kids and find out what they understand or misunderstand about the disease. We can see how they might be feeling.

Child life specialists and psychologists alike use play as a way to converse with kids about what is going on. Reading stories gives younger children an opportunity to talk about the illness while relating it to the character in the story… very safe for them.

For older children, ages 7 and up, I encourage regular family meetings to discuss the latest doctor visits or any new information. I also recommend keeping a notebook someplace central, so kids can write questions or concerns they think of when parents aren’t around, or that they aren’t quite comfortable voicing yet. It gives them a safe place to communicate their concerns.

Should a child be allowed to visit the ICU? At what age?

Children younger than 5 are restricted from the ICU because they cannot understand what they will see. Otherwise, it is good for children to have an opportunity to see their parent, especially if the parent may not recover. I prepare children for what they will see in the ICU with the actual equipment. Patients are often sedated and I tell them their parent will look like they are sleeping, but might be able to hear them, so they can tell the parent about their day. I also reassure kids that they can leave the ICU at any time.

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There is a wonderful book, "Wha's Heaven" by Maria Shriver that a good friend of mine used with her grandchildren when her own father died. She was very impressed and said it was a great help.

And finally, please keep posting here and let us know how we can help. There is always someone here who will lend an ear or send hugs..

Warmly

Christine

[recce101]

Hi, welcome to the group!

1. The item Christine posted provides some excellent pointers. I first saw this set of recommendations several months ago (she may have posted it then too) and I've never encountered anything better.

2. Dads usually say that, but I'm sure he needs you more than he can express. If pain is well controlled, the passing can be quite beautiful and uplifting. What is done or said will vary considerably from one family to another, depending on individual beliefs and concepts -- including the "what happens next" question. But I'm convinced that in all cases when death or passing or transition is near, the sooner we can break through the barrier of actually using those difficult words, the better the experience will be for all. There are a couple of accounts posted on this board which I found exceptionally meaningful, and if I can locate them I'll send you the links in a PM (private message). It will show up as a "New message" in the line near the top of your screen that now probably says "No new messages."

3. A "sticky" (think of a stick pin on a bulletin board) is a tag that a moderator can apply to an especially useful topic thread so that it always appears near the top of a forum message list.

Best wishes and Aloha,

Ned

[Don M]

Welcome Kershib I hope the hospice experience brings you all closer together and fills you with at easeness in the final weeks.

Don M

[Nancy B]

I have a book "The Fall of Freddie the Leaf" A Story of Life for all Ages. It was helpful to me and I think it would be very helpful for children.

God Bless,

Nancy B