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End of Life?


GardenLady

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I didn't notice a section on end-of-life on the boards, so I guessed here would be the best place. I'm struggling a bit with this weird place I'm in with my Dad, where we know he's going to leave us soon, but he's still with us.

Any advice on how to help my Mom and other family members? Mom said that Dad's already past the point of having any lengthy, dare I say heart-to-heart, type conversations. So, when I fly home next week, I am prepared that I'm going to help my Mom with my Dad, not going to help occupy and entertain my Dad.

Any advice on what to tell an 11 year old grandson? My son is very close with my Dad and saw him often until we moved about 18 mos. ago. Is it a blessing that my son is at the age where hanging out with family isn't really fun anymore? Is it a blessing that we're far enough away that my son won't see my Dad while his body shuts down? And, how do I help my son right now, while I'm long-distance parenting? I know my hubby will take care of things, here, but he doesn't know quite what to do, either.

I am fortunate to have never lost a loved one (not many people I've known make it to 31 without experiencing a significant death). I have one grandma that's still alive and the rest were gone before I was born. The only real death for me was my first cat...20 years ago. I'm totally going through a completely unknown process and I'm not big on surprises, so any advice would help.

Thanks!

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I am so sorry that things have reached this point. You might find some helpful information in the Path Less Traveled forum, as there are a lot of excellent posts there regarding Hospice and other end of life issues.

Please keep us posted as you can and know we are here for you.

Sending many prayers your way

Christine

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Also, I hope this information might be helpful...

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.

What book might help cancer patients with children?

How to Help Children Through a Parent’s Serious Illness by Kathleen McCue.

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My journey was a little similar to yours in that I was 30 before I had ever really experienced serious illness and death.

Each experience is so different and unique. I've lost both my parents now and while many things were similar, their deaths were different and one could not have prepared me for the other. You just can't ever be fully prepared for it.

That said, I'm so sorry you and your family are going thru this.

When you get to your parents house, the only thing you can do is take it a moment at a time. There may become an opportunity that your dad wants to talk and just be close to you. While he may be through with his "heart to hearts" as your mom says, he may have some thing to say to you. Or like my dad, not say anything at all but want to hold my hand or have me sit close to him. And even though he didn't talk, I sure did.

Your mom's needs will change too. Don't have expectations and just see for yourself where she is and what she might need you for. Sometimes a good cry or talk, or maybe just to have your presence there so that she isn't alone or by running errands or doing dishes now and again. All of that is "support". And she's going thru a lot so there may be emotional ups and downs for her too that you have to be aware of and not take personally.

Your son is in good hands now with his dad.

I'll admit that I didn't parent my son very much during my dad's illness- my husband really stepped up and I was immersed in my dad's cancer journey and later in grief over his death- but we all made it thru and are such a closer unit now.

Once things settle down and you are back home with your son his feelings may come out or manifest in different ways.

My son never talked about my parents deaths and held everything to himself. I think maybe to protect me or make me believe everything was ok.

He is only now talking about my parents deaths and it's been 5 years since I lost my dad and 2 years since I lost my mom) But right away after each beloved grandparent passed away his school work suffered, he became withdrawn and very insecure about himself.

I did take him to grief counselling where he could talk one on one with a therapist without me being there and it helped tremendously. I only wish I would have taken him sooner.

Take it a moment at a time.

Right now you're going to visit your parents and spend time with them in whatever way you can- what happens next is what you will deal with next.

We will be here for you.

I hope you have warm and wonderful memories with your dad on your visit and I will keep him and your family in my prayers.

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Any advice on what to tell an 11 year old grandson? My son is very close with my Dad and saw him often until we moved about 18 mos. ago. Is it a blessing that my son is at the age where hanging out with family isn't really fun anymore? Is it a blessing that we're far enough away that my son won't see my Dad while his body shuts down?

I don't know that it's a blessing one way or the other. Most 11-year-olds are probably mature enough to deal with a grandparent's end-of-life in a positive way. If he's not going to be traveling to visit his granddad, you could provide enough details on the phone for your son to get the picture, and I believe he'd appreciate that, if not now, then later in his life. I think about my own grandparents a lot more today than I did as a kid — I guess I have more in common with them now.

The only real death for me was my first cat...20 years ago. I'm totally going through a completely unknown process and I'm not big on surprises, so any advice would help.

Even if your dad is getting beyond the point of talking much or responding in an obvious way, very likely he's still well aware of what's being done and said around him. If I'm fortunate enough to have my family nearby when I reach that stage, whether it's for cancer or something else, I'd love to hear them reminiscing about our lives together, the good times, the rough times, the funny events, even the embarrassing moments. What a joy that would be! Aloha,

Ned

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My 9 year old nephew was told straight out about what happened to DEb when she passed and he was pretty much ok. He evn came to me and told me that he did understand and was sorry about what happened to her!

Spend Time wioth Dad even if its just holding a hand and being there. Presence is everything sometimes...

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I just want to give a little advise about your son. Please don't think that just because he is at that stage that your dad's death won't bother him as much. The older children get the more they depend on those family ties even if they don't admit it.

It is hard to tell him what is going on and I'm not sure what would be harder him knowing ahead of time or the shock when he learns of his death suddenly. The thing is if you don't tell him he may not trust you to tell him other things. He may always wonder what is going on that he doesn't know about and it could lead to a fear of losing you or his dad.

My grandchildren lost their Paw Paw very suddenly to a heart attack nearly 3 years ago. His death left my oldest grandson especially with a lot of problems that he is just getting past. As for the emotional thing he still has a very hard time and he is 22 years old.

Children are smart and can sense when something is going on. Share with him and make sure he knows that you and his dad understand he is going through something hard but you will be there for him. Make sure too that you talk to him about his grandpa and let him talk. I don't know why so many people think it is wrong to talk about a lost loved one. Those grieving feel like they have lost even the right to share that person with someone else. We all want to keep as much of them alive as we can and not talking about them is very painful.

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Thanks for all of your advice and support.

My husband stepped in and talked to my son about his Pop. My son is the kind of kid that likes to be informed (he was really ticked when he realized that Santa wasn't real-b/c we "lied to him"). So, keeping that in mind, hubby told him that I am flying home next weekend and what the situation is. Connor now understands that Pop is dying and that he will not be recovering. He has known all along that my Dad has cancer, largely b/c we knew it was palliative treatment and not treatment for a cure. So, it's not a total shock or anything. Just a big jolt, as for me, knowing that the end of Dad's life is now and not later.

I agree about continuing to talk about a loved one. I can't understand how people avoid talking about them. I guess for some it's too painful, but for others it's too painful NOT to talk about them. I'm a talker, so my son will have a chance to talk, too.

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