Anyone have any tips for explaining this to kids ages 2&6

[nelvana_of_the_north]

My two year old son is so freaked out by Dads choking. In turn, Dad feels bad, get anxious, chokes more, Mom gets upset, I feel bad. In sumation, family meal=no fun. If anyone has gone through this I would love to hear from you.

[Kathy]

Wow! That's a tough one! I guess I would say that Grampa's brain is poorly and it means his body doesn't always understand what his brain is trying to tell it. That might work for the 6 year old but it's really tough to explain to a 2 year old.

On the subject of choking - has your Dad seen a speech therapist? They can advise on changes of diet (e.g. softer or smoother textures) or use of thickeners in drinks or techniques such as chin tuck and double swallow to help reduce coughing/choking. Also many people with PSP have a tendency to cram their mouth too full with food and this can also lead to choking.

Hope that's been some help

Good luck

Kathy xxx

[jimandsharynp in reply to Kathy]

Kathy, well spoken. I have a problem with my wife trying to put too much food in at one time. I remind her over and over but she still does it. I think it is difficult for PSP patients to change their normal patterns no matter how many times they are reminded. At least that is what I'm finding. Just like all of us it is hard to change habits we have had all our life.

[hazelb]

I honestly don't know how to explain to a 2yr old but I agree with Kathy about the 6yr old. Our Grandson is now 8 so has lived with his Grandad being poorly most of his short life. I think his Dad did basically what Kathy has said & he's ok with this. He knows his Grandad won't get better but we deal with any other aspects as & when he asks. He does remember when his Grandad used to drive & pick him up from Nursery & tries to adapt games to include him if he can.

Take care & try to keep smiling. Love Hazel B xx

[PSPA_JillL]

Generally children respond to and reflect the way adults are behaving so if you are stressed by the choking episodes then they will be also. It is stressful watching someone couching and choking. It is really important to stay calm and speak calmly even if you dont feel calm inside. Perhaps it would benefit you to do a first aid course so you feel confident if a choking episode occurs and know what to do and as has been said it is crucial you get Dad assessed by a speech and language therapist to make swallowing as safe as possible.

It maybe that family meal times are just too stressful for everyone and that sometimes it would be better to eat separately. It is very difficult for people with PSP to concentrate on more than one thing at a time and if swallow is diffficult then this needs to be done quietly without the family chat. This is really hard if your family has always used mealtimes as a communication time, but with a little planning this can happen separately.

In terms of explaining to children, yes it is difficult but honest answers to questions at their level are what children need. However your non verbal messages are also powerful, children are very perceptive. Showing your children that yes Grandpa has an illness that affects things but he is still Grandpa and you still love him is really important. Yes the PSP is horrible, but let it be an opportunity to teach your children compassion, patience and how to treat people with dignity. Also build up happy memories of time with Granpa, set small realistic goals.

Take Care

[nelvana_of_the_north]

Thanks guys!

Yes, Dad has had two swallow tests done and the speach path. he sees is super helpfull. The big one is big family meals like Christmas and such. I see it as having lots of factors: one is Dad in anxious to eat in front of everybody (did I mention his pride?) the other is he really loves a good home cooked meal and just can't get enough. As for my kids, my daughter does great with the whole thing, not a lot phases her. My son is a different story. I think what may bug him the most is simply the volume of dads cough. He's one of those kids who has no problem being loud himself, yet hides every time happy birthdy is sung at a party. Hopefully this is something he outgrowes.