A really unfortunate thing happened today . . .we're traveling (which is how I saw Anne!) and while my husband was having a private conversation with a family member about his worst fears about CBD, our 9-year-old son came inside and heard the whole thing from the other room.
It was bad--the fears about the possible five-year life expectancy, about the terror about losing control of movements and knowing you were powerless--all of this my son heard. All he knew so far was that Dad has a form of Parkinson's, and we're getting tests and trying medicines to see what kind it is. You can't see many of the symptoms yet.
I did my best damage control as our son had a meltdown at bedtime about his fears about his dad dying, or being trapped and unable to move, etc. At least he poured it all out. I flailed around with my best shot: that we don't know yet that it's for sure CBD, and that not everyone gets the worst kind, that many live way longer, that even if he were the one to get the worst kind there are medicines that take away the terror. He asked what would happen to us if he died, and I assured him we had plans and he'd be okay. Ahhhh!
This is way earlier than we wanted them to have the term "CBD" or that horrible number of 5-6 years, etc.
What advice do you all have? Helpful things to say? I'm feeling gutted.
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LostinHeadSpace
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Oh dear lovely lady such a hard thing for you to deal with, not sure of an answer, just lots of reassurance that you will all be ok, lots of love and cuddles, children and wonderful creatures, so sorry this happened my heart goes out to you. Yvonne xxxxx
What a distressing situation for everyone. Children do have an incredible resilience, it is likely there will be many questions over the next few days but often there is an uncanny acceptance far more so than for adults - I do hope this is the case for you.
My son was 16 in his GCSE year when my husband was diagnosed he then hit the internet to research it all - not sure that was helpful!!
While my dad was living with us, my son knew something was wrong. He was about 9 when dad moved in. My son is 12 now and about a year ago I explained what was happening. He was seeing first hand the drastic changes in Grandpa and I figured it would be best if he knew the reason instead of just wondering and possibly becoming afraid to be around his Grandpa.
My son has taken it very well. I think by telling him and being honest it helped him deal with the fact my wife and I had to make adjustments to our lives, certain things just weren't done anymore. There were many of my son's school/sports events only one parent went to because Grandpa couldn't be left alone safely.
Just my 2 cents....
Ron
My father died when I was 13. I think it made me more mature sooner than I would have been. Whatever illusion I had of my family changed. Talking to your son and being honest with him will help him adjust to what is coming.
So sorry to hear that this happened. You seem to have done really well to help him.
Our grand children were the same age and I just answered all their questions honestly. But no more than they asked. They were great - but, of course its very different when its their father.
Do they have a support, play therapy at his school ? He will need something in the future but you say your husband has few symptoms yet. That will help him to get used to the idea.
Oh Lost!... It's exactly what you feared would happen and what you were working so hard to prevent! I'm devastated for you And I know your kids are scary-smart and your worry was them going onto the internet to look up more info.
Having said that: I actually found in my online searching, that the scariest information is on THIS site! The nitty gritty! Most of the official stuff on medical websites, like CurePSP, Mayo Clinic etc is pretty bland actually, and has a tone that makes it sound no worse than Parkinson's.
You also might say (without naming this site because HERE you don't want them to visit..!) that you've found out from others who live with this disease that the life expectancy is often much longer than those medical sites are saying: witness our members who are still living with 9-11 years of CBD. All of this being the truth.
Good luck with it, and please let us know how they are doing.
Thank you, thank you all for your support and input. I will read over all your suggestions more than once--it helps me to take it all in.
My husband was able to talk about it a bit with my son today and reassure him that the worst-case scenarios were not all what was going to definitely happen, etc. And it was in the middle of a hugely active family vacation day, so it was the best way to talk.
Again, the moral support matters so much--I am so grateful to you all.
How alarming this must have been. Children are amazing in difficult situations, though. They have a perception far deeper than we often consider. With the love and openness there seems to be in Your family, his understanding will turn into a strength not just for himself but for you all.
Praying for your wisdom to continue and for his heart to be strengthened.
You know, I was just thinking about the 4-5 year dx and how it’s affected my reaction to my mother’s journey with the condition. She is going on well over 10 years - I thought she would have been gone by 2015 based on what my mind envisioned after reading up on CBD ( when I first ever came across CBD in literature, it described a 3 to 5 year prognosis). Certainly we’ve encountered many of the events that could have taken her sooner (major fall down a full flight of stairs, pulmonary embolism), but they didn’t. I wish I’d disregarded what I’d read to some extent and just interacted with her on a day by day basis... sure there has been changes, and we’ve adjusted to each one. And yes, I lost the mother I “expected” to have - a long time ago, but she’s still here - and fighting. In some ways it’s just a compressed micro-version of life — everything changes; we’re changing too.
Yes Etta - you are one of the outliers I so often thought of! We have such an exposure here to a variety of ways that CBD can go....Bless you and your mum..XX
You are amazing. Our young grandchildren vary in their worries about Dan. They can be discouraged that he does not react as they would like, sad he can’t do some things, afraid , and still questioning if he may get better.
I would like to share my childhood experience. When I was 6 , my father was diagnosed with cancer. My mom, myself and my grandparents traveled to Mayo where we spent 2 months and my dad had surgery. It was very serious and they were not certain that he would make it through surgery. My brothers were in military service and the Red Cross brought them home. Although I could not help but be aware of the seriousness , my mom kept things as light as she could. We sang as we walked through Mayo to the hospital, picked up special treats, etc.
Then, someone suggested with the seriousness of the situation I should see a therapist and be prepared for the worst. My mom was an optimistic sole, but suddenly I was told all that might happen. As it turns out, my dad lived 12 years. He was never able to work much and was suffering , but he was alive. I now feel that for my entire childhood I was waiting for impending doom . I lived my dads death many times. There is always plenty of time to cry.
You are doing So fabulous . Honestly , love and a little bit of finding the joy in each day.
Best of luck to you. I’m sorry you have to deal with this with young children. You must be heartbroken .
God Bless You and Your Family! As you know children are our greatest treasures and we do our best to protect them always. But things happen that are out of our control and during those times we just have to do the best we can. Please give yourself high marks in handling that situations. And remember to also take good care of yourself as you travel this road doing your best for everyone else. I forgot to do that more than once when caring for loved ones So do as I say not as I did. Keep your chin up and laugh at any silly little thing you can - hopefully your son and husband will join in - or maybe they will just roll their eyes at you. My kids and grandchildren usually roll their eyes at me and I reply - Smile and give me a hug - I just made a memory. They call me The Greedy Hug Granny
Reading these responses reinforces my own view that its a tricky path. Not making child over anxious but making it clear that its fine to ask anything. Always being honest. Thats why I suggest play therapy, not counselling.
I remember my own mother telling me there are things we don't know eg death and we just have to keep living with not knowing.
Thats a life lesson !!!
I think the main thing is how you deal with it as a couple. We brought in lots of humour. Granddad was very good humoured at being the focus of humour. There will be so many good times still.
A very tricky situation L but think in the end that children need to know the truth and do have coping mechanisms, it's not the best way to find out that your dad has an incurable disease but it's in the open now and can gently and kindly be discussed. I know the Hospice that Ben attended run Saturday family sessions to help children to come to terms with things and they will have other children there going through similar situations, worth a chat with them. So sorry you all find yourselves in this awful predicament but keep posting on here it is the best place for advise and support.
I agree with all that has been posted. I think it is important to be truthful, using words and concepts that are age appropriate, but always answering as truthfully as you can....even to saying "I don't know" if you don't know.
I think when children fear their parents/siblings/close family dying, they are perhaps also searching for answers, and fearful of they themselves dying. As a child, that can be very terrifying.
I found a book at a street fair that I thought did a beautiful job of addressing death without religion. I fell in love with it. It's beautifully illustrated. Every now and then, I pull it out and I read it again. It's called, "WHAT IS DEATH" by Etan Boritzer.
When my son was dying I would read it to him. He was 55 years old, a church attendee, and he found it comforting too.
Thank you, all, again, it's so wonderful to mull over your suggestions and input. It's so hard to know what is really going on in another's head--especially what their secret worries are. My son feels very protective of his dad already, I try to reassure him that he can worry about taking care of his dad once he's 21.
An odd thing that helped. . . they had the chance to jump in a river and float in rough waves and I think the "death defying" nature of that adventure was helpful.
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And I know your kids are scary-smart and your worry was them going onto the internet to look up more info.
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Dad’s funeral 
