How have you helped your kids with all of this

Hi, does anyone have stories or advice to share on helping teens deal with their parent going from perfectly normal to wheechair bound, breathing issues, weight los, energy loss and most of all their fear of him dieing? Thank you so much!

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I have 3 children, 34, 31 and 17. I have been honest with the kids from the beginning, not hiding anything the docotrs have said. Unfortunately my older children are about 5 hours away so I dont see them as often as I'd like but when we do we have such a good time.
My 17 year old daughter has been a challenge. SIx years ago when she was 12 her dad was hospitalized for 7 weeks for a colloid cyst in the 3rd ventricle of his brain, age 41. We were all devastated and this came as a total surprise. The surgery caused strokes and seizures, memory loss. He is not the same man I married, personality changed and my daughter, Jessie, said to me, "Mom, I think God took my dad away and gave me a new one." He is disabled and not able to work. I was main caregiver while working 40 hours a week and taking care of everything else. We lost our house and many of our belongings and had to downsize into a patio home where there was really no space for Jessie and her friends to have any privacy. I know she was not happy about the situation however she knew it was necessary. We had many of our items on a consignment auction and I felt like the weight of the world was lifted off my shoulders once that was over with and we were settled into our new little home. Things were finally getting to what our new normal would be. This was 2 years after my husbands hospitalization, Jessie was 15 and although I worried about her I thought that the weight of the world had been lifted off my shoulders. Now finally in a small place I could keep up with, no worry about snow removal and lawn care. We could just spend time as a family doing things together. We were both getting used to Todd's new personality and what to expect andhow to handle things. Two months after we moved into the patio home I found out I had Stage 3A inoperable lung cancer. This devastated Jessie. Now the parent she depended on and could talk to was sick. It's been very difficult and she does not spend a lot of time at home. Since then we have had to downsize again into a smaller 2 bedroom apartment and at times during the course of my treatment, 2 years now my husband has had to be the caregiver. Neither one of us are able to work now and trying to hold to things together. Sometimes it's like the blind leading the blind. Jessie can be so caring and responsible and is according to her teachers, pastor and others, however just does not ever want to be at home. She has come to the hospital and to see me a few times when at chemo. IT's so hard and I try to do what I can to make her feel part of what's going on and at times I know she does not want to be part of it. I pray every day that God watch over her. She has gone to some counseling but the counselors think she's doing great and as long as she talks to her friends and adult figures in her life she'll be okay. Her older brothers spend a lot of time with her on the phone too. I pray that I will make it to her graduation, next May, and that she'll be able to move on with her life and work through her feelings. I think I let her do things that maybe I normally wouldn't but because I have cancer I think, this might be the last time and I want to be involved with this with her - prom - she didn't want to go but then did becasue I wanted her too. I also think at times I let her because I'm so exhausted I just don't want to deal with the teenage attitude. Does anyone else think like this. My doctor said it's not uncommom for a mother with cancer to feel like this. I don't know. Now I feel as I'm rambling. Any thoughts on what I can be doing better for her please let me know. Thanks so much for listening.

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We have 3 kids: 26 yr old daughter(living in Fla), 20 yr old son(still at home) ands our youngest daughter is 11. I agree w/everyone else that honesty is the best policy. We have not sugar-coated anything about my husband's diagnosis, tx, etc. The 11 has been to many of the appts w/us(along w our son)and at the follow-up w/rad onc last week she @ one point jerked her head around to look at me when they mentioned new mets that showed up on his CT scans. Thank goodness brain MRI was good. We have involved them to whatever extent they are comfortable with. Our youngest would not talk about it in the beginning but has since become more involved and wants to go for most of the" results" appts. Our oldest has a hard time being so far away and tried to get home as much as possibles. Our son seems to be managing it all quite well. As I said we just keep it honest and follow their lead on how much they want to know.

Take care and lots of prayers to your family.

Lisa

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I am so sorry to read that ben is declining.

I have to agree with Judy, you have to be honest with them. If they have not been involved with this process, it is time to let them know what is going on. Make sure they know they can come to you with whatever questions they have.
When my husband was dying, Tay knew what was going on. She understood the decline. Even when her dad was talking out of his head, She would just say OK daddy.
As mainchester said, they will be acting out, Well because no child is perfect. And the making sure the schools know. Tays school was very helpful.
Also, Kids need a break, I would often send Tay away for sleepovers with her friends. It does help.

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Some suggestions:

In a family crisis, children usually fare better if they can be involved in dealing with it. Depending on their age and ability, they can help by running errands, doing household chores, keeping appointment calendars, keeping the cancer patient's room free of dust, logging prescriptions received and scheduling refills, and taking oxygen level tests (the oximeter fits on the finger; they only have to read and write down the numbers from the display) and blood pressure tests. A lot depends on how old they are.

Be prepared for children to act out their fears, frustrations and discomfort that comes with sudden change. It can help to have other relatives include your children in their activities and outings when you are not able to do this. Some families start a "family book" with photos, mementoes and stories that can be a great comfort and distraction to everyone (it gives people something to do and talk about other than cancer).

Make sure the school knows there is major illness in the family, because most educators will make allowances for behavior problems if they know about distress in the family. Keep to routine as much as possible; nothing is so disorienting and distressing to a child than a series of disrupted schedules.

Having a pet with a solid, nurturing disposition (dogs are usually the best) helps a lot of children through the tough times. Our granddaughter goes out to the stable and grooms her horses when she is distressed about her granddad. She tells them all her worries, and they nuzzle her to comfort her. It seems to work, especially after she's taken them on a trail ride. They were also enormous support for her when she was being bullied at school and did not think she could tell us.

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Ask MZLynne to join as her friend; she has been through this process and writes clearly about what is involved. She is doing a remarkable job with her daughter.

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I have a 14 and 15 yr old and aI agree twith Alta. I was honest with them about everything. Heck they can tell for themselves by jus tlooking at him. Went from walking, working, fishing and doing honey dues to not walking and in a wheel chair within 2 weeks. I am just honest with them and let them ask any questions they want day or night. MY oldest holds it in a lot. Her friends father told me he didn't know anything about Mike until he asked Suzie about the ramp in front of our house...she just broke down and cried. She doesn't want to talk about it with her friends..she doesn't want them to feel sorry for her or ask her questions. Just be there for them.

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This is a great book written by teens-for teens. Preview it before you let your kids go through it just so that it meets your approval. Is $12 and arrived within a week of ordering it. God Bless.
http://www.kidskonnected.org/teens/book.html

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My daughter is 18 and my son, 21. We had a family powwow when the diagnosis was confirmed, told them that we were all on this magical mystery tour together and that we'd keep them in to loop to the extent that they wanted to be.

It's kind of like the facts of life talk. Give them the overview and answer specific questions as they come up...although I make damned sure to share all the good news!

xoxo
Melody

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What beautiful replies to your question! I raised 5 children and their father was the center of our lives when he died of stomach cancer quite swiftly some 20 years ago while our youngest son was still in college. We didn't have the internet then so no one knew what his bout with cancer would be like ....we had to just trust his uncaring doctor. When he passed away in 4 months we were all in shock and each went their separate ways to grieve. (Not good!) The youngest son was into denial according to several older men who had mentored him in high school. To this day we all grieve for the loss of their dad. Now I have cancer & this son has begun to secretly drink? because he's devastated. I do believe in a certain amount of honesty but I don't want this to ruin a beautiful time in his life with his 3 children ....so I bought an iPhone4 so he and I could play our favorite Scrabble game from years before. His wife called and said he loves this because it was like old times and he realizes now Mother isn't leaving him anytime soon....I decided to lighten things up some even on the days I wasn't feeling so hot.....like I woud text him & claim he was beating me only because I was weak from chemo that day & he was cheating......and we began to laugh a LOT more....I'm also making a point of hugging my middle aged children and telling them how much I love each one ( they've sort of reverted back to being like young children...yes, even a school principal....LOL) .....I will leave them when God decides that so love each other and make happy memories.....Many hugs....Barbara

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I agree that honesty is best. You've all been dealing with this since October, so how have they been reacting to everything that's been going on? How is your husband doing? I would let them know he's fighting hard to beat this beast, but he may not be able to. Let's help him all we can and love him everyday. If the time comes where you need hospice, they will help all of you. Wishing you the best.
Take care, Judy

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That's a tough one. Not only is the teen period unique but each child is different and what helps one may not be helpful to another.

My kids are young adults now and I realize this is different from being teens. However I have made time to chat with each of them one on one. We have fun times where we lighten up and just enjoy the moment. But we've also had times where we were both in tears and just said what was on our hearts. This can be tough for teens to do though I know.

One thing I've been really aware of (though it breaks my heart to think of it) is that one of these days I will most likely not be here for them. With that in mind I am doing everthing I can to help them build and nurture relationships with another adult (parent-like figure). It's different for each of them. I've tried to notice who they each seem to already have a good relationship with and then nurture that. For example my daugther gets on well with my sister so I've tried to help "arrange" times for them to be together. My sons are closer to other relatives and so I'm trying to encourage those relationships. As much as I want my kids to feel like they can talk with me about anything I also know that they may feel reluctant to do this at times. It's important to me that they have someone they feel close to and in whom they can confide, even if it's not always me. And when I'm gone, they will certainly need this.

Best wishes to you and your kids.
S

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I'm 20 years old and I have 3 younger siblings my mom has cancer and my dad sugarcoats everything...I didn't know anything about it...so I started googling stuff and seeing the stuff on google made me so depressed and scared...I found this website where I can ask questions because I know nothing about lung cancer ....although I like my dad sugarcoating stuff...I was still curious to find answers are family doesn't share there thoughts or feelings with eachother and I don't know how to because I don't like crying in front of people so its killing me inside seeing my mom like this and not knowing anything I break down and cry in my car all the time....so I guess it depends what age your kids are I want to know the truth but I'm scared of it.!!

I wish you the best.

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Dear Andrea,

I have six children. When I was diagnosed with lung cancer I spoke to all of them.
I prepared them for the reality of this disease. I didn't sugar coat the situation, I told them that there could be a possibility that I may get very sick and that they needed to be very patient with the circumstances. They came to the hospital to see me. At home when I was in a lot of pain I stayed in my bedroom. I didn’t feel it was necessary for them to see me suffer. Other than that, they were very much a part of my journey. I was asked if I was going to die. I told them, I didn't know, but, I hope I wouldn't just yet. My children are much older than yours, but, deep inside they all have the fear of losing mom and dad. You Andrea, kids are more resilient than we think. They want to know the truth and they all want to be included in the dynamics of the family. They will be thankful for the time they spent helping around and participating in the care taking of the sick parent. Just choose your words carefully and listen to your instincts. No one knows your children better than you do.

Love you,
Alta

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Dearest Andrea,
My heart goes out to you, as I haven't read anything from you for a while, and after reading this post, I know things are becoming more serious for Ben.

Teresa said so well many things that I totally agree are of great help, and I know Mzlynne wrote beautifully about how she and her husband Nard did prepare and comfort their children. Now is the time to find concrete ways to ease them through this difficult part of the journey. And yourself as well...

Marten had a son, but he was older, and so age makes a difference in how you approach dealing with physical changes, and emotional ones, and how you begin to address the cycle of life and death. Losing a parent at any age is hard, but so much more for a younger child. That is why grief counseling is so important, and you can check with your medical center for programs for children and families. I know hospice still works with me, so they have this too.

The only blessing here is that you have time to plan, and that is a gift. A sudden death is brutal, and all the things you wanted to say and do are gone. I think honesty in moderation, and done sensitively, is always the best policy, and sharing your feelings with your children in an open and caring way is key.

Also, finding a way for them to have a tangible memory of their dad, like a video, or writings, or an album - something concrete is so helpful. A legacy to hold on to. I had Marten's music videos on youtube, but I didn't have his voice, and that is so painful for me. I would love to hear his voice...so these are things to think about. And to say the magic words, often and hold hands, and be near. These things are so important...each day is a gift, each hour a lifetime.

I hope that Ben has his miracle, and that this is a message you do not need to refer to for many many years. But the fact that you are asking means things are changing, and my grieve with you.

You are simply a remarkable woman, and Ben is blessed to have you by his side. You are so brave, and caring. I have no doubt you have done everything we said already to ease this time for your children...God bless you, and guide you. And we are here for you, always,
With love and prayers,
Peg

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I don't have children, but I lost my dad to lung cancer and now my mom is battling it as well. Speaking from the "child" perspective, I believe honesty is key. Honestly develops trust. This might be different with very small kids, but late teens and older need to trust what you tell them. I never wanted to hear promises, because when they were broken, it just killed me.

I would also suggest support groups for teens dealing with cancer and/or family therapy. It sucks to see your parent sick & I can't tell you how fast these experiences have made me grow up. That being said...it can also be a wonderful experience. I grew closer to my dad in those 4 years than I ever imagined. I learned the value of family and learned to prioritize what's important to me.

There are times when anger and saddness overtake me, but I've learned to not let those thoughts & feelings
overwhelm me. My dad didn't make it to my wedding & I
tear up just typing this, but I know he was their in spirit.

The bond we developed thru his illness has provided me
with a pillar of strength in my life. Going thru losing a
parent can help you become a stronger, more
compassionate, & patient person. I also grew closer to
my mom and brother. I learned to ask for help. All these
things came out of a crappy situation.

No young child should have to see their parent suffer thru cancer, but sometimes life deals us those cards. It
doesn't have to be all negative. Focus on the good moments, encourage them to express their fears & emotions, talk to eachother, and find things to still laugh about. Journaling also helped me a lot.

I'm sorry you have to go through this, but hang in there. Go through it as a family and let it glue you even closer together. Hold on to eachother & support eachother. Every moment you all spend together is priceless.

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