discussing PSP with kids

[HulaMoo]

My father, who will be 60 this year, has been finally correctly diagnosed with PSP. Its very hard on all of us, as you know, but I'm wondering how to best handle discussing the condition with my 7 year old, and the other grandchildren. Are there any materials available that are kid-friendly such as books or pamphlets? I haven't found any yet in my search. Any advice or experience? My son is very sensitive to death and "time passing."

[NannaB]

When my dear husband died with PSP 8 months ago, my grandchildren were 5, two aged 7 and 10. They grew up seeing him deteriorate and were amazing, helping me when I looked after them and talking to their grandad as they would anyone else. I explained in language they could understand, what was happening. They already knew that the brain sends messages to all parts of the body, telling it what to do. I told them he had too much protein in the brain that was getting tangled and stopping those messages getting through so as a tangles grew in different areas of the brain, so grandad would stop doing things. I emphasised that grandad still loved them and even if he couldn't speak, he was still the same grandad inside and loved them coming to visit. Over the years they saw the change in him and when he was younger, one of them asked, "Is grandad turning into a baby again". I always answered questions they asked honestly. They were all very interested in how things worked, the convene, suction machine, PEG and they loved riding the stair lift and when I gave them rides on the hoist. One asked outright, is grandad going to die. I said yes but not yet and told him there was nothing to worry about as everything dies, pets, flowers, and people. I also told them PSP was a very rare disease and they wouldn't catch it. I was always very matter of fact with them. They learnt a lot about how the human body works. They always kissed grandad when the arrived and left and said they loved him and then they would say, thumbs up if you love me grandad. Of course his thumb always went up.

All the boys came to his funeral and afterwards we all went to the local firework display to say goodbye to him with a bang. As the first firework burst into stars with a bang, they all shouted "Goodbye Grandad".

I was amazed at how my grandsons just accepted what was happening but found they understood far more than I expected them to.

I do hope your son is not frightened by what is happening to his grandad and realises there is nothing to be scared of. Your dad will want to see him and his other grandchildren and if he is still talking, perhaps you could tape their conversations. I regret not having my husband's voice on tape.

Best wishes.

X

[easterncedar in reply to NannaB]

That is beyond sweet, Bev. I wish I could have been as wise with myself! I do have some phone messages from my sweetheart, from way back when we first started dating, in fact. I love them, but it pains me, too, to hear the disease beginning to affect him, before we were aware that anything was wrong. Still, I can hear him say he loves me any time I want. What a blessing.

[Heady in reply to easterncedar]

Steve was an avid video taker. We have film of practically every trip we ever went on. He was rarely on screen, but always gave a running commentary. I have only managed to watch one set of films, unfortunately it ended in a soggy drunken mess. At least I know they are there and can watch them any time I want. I just choose not to at the moment.

Lots of love

Anne

[easterncedar in reply to Heady]

Oh, Anne. I know. I know. Hugs is all I have. Sending many. Love, ec

[Heady in reply to easterncedar]

Likewise!

[daddyt in reply to easterncedar]

xxx EC.

[daddyt in reply to NannaB]

Thank you for this NanaB. I haven't really experienced those questions from my grandchildren... your answers to their questions were so well said. xx

[am2015 in reply to NannaB]

I don't think anyone can put it any better than what NanaB has already said xx

[doglington]

nannab is wise as always.

i had exactly the same experience with my grand children aged 7 to 15' they are very considerate towards their grand dad, especially the little ones - tenderly wiping his nose, always giving him a kiss. it breaks my heart to think of what they have lost of the "fun" grandad but it is not all loss.

also i treasure holiday videos of him talking and laughing - way before he was ill.

love, jean x

[NannaB in reply to doglington]

How are you doing Jean.....silly question really but I do think of you often.

I have several boxes of videos and I know Colin is on one or two but we weren't very good at labelling. I have an ancient video recorder so one day (many days) I'll go through them and see what there is. One day!

Love Bev

XxxX

[doglington in reply to NannaB]

soldiering on !!

i'll be in touch, bev.

love, jean xxx

[HulaMoo in reply to doglington]

thank you for the video suggestion. We have a family vacation this August and i will make sure to get video!

[doglington in reply to HulaMoo]

Good - especially if you can get a bit of bantering and laughter in it !

xx

[Katiebow]

Our 4 yr old grandson is very tuned into his 'Grumps' and last Christmas went straight past his pile of presents to wish Grumps a good morning and gave him a kiss, very touching. He often tells others that grumps's legs don't work properly and now realises his eyes don't either. It's amazing how they take it in their stride. Harry, the 19month old also seems to be aware that his grandad isn't able to do things normally and likes to hover around when I feed Ben, he is like a baby bird waiting, with mouth open, ready to share Ben's meal. So very cute and touching. When they Skype they love to kiss there Grumps, getting close to the screen, this happens most evenings. I hope that their parents continue in that vein and don't try to protect them from the reality of what is happening to their grandad.

Love Kate xxx

[Duffers]

I think children are far more understanding and resilient than we give them credit for. I think the matter of fact truth, put gently, is always best. Our two youngest, 4 and 3, always want to help putting fluid in his PEG. They're not phased at all. They also love the chair lift.

Marie

[HulaMoo]

Thank you everyone for sharing your experiences. It helps.