Gingerbread house! This is what a 9 yr old girl wrote this morning after talking about how sad she was about her Daddy who has PSP ...

[SharonAB]

Life is like a gingerbread house

It needs a plan

You need need the right ingredients

It needs cement

It needs to be stable

Then it will taste good to enjoy!

Question to those reading - How do your children cope about what is happening? Chloe wrote it on my facebook page so I could read the message when I came to use my computer...

[richardkoe]

great poem by the way. I was much older when I found out my mother had PSP. Even so I wasn't really able to understand her condition. It would have been a good thing if we'd had some professional counseling. Does PSP Association now provide this, or at least guide you towards the right professionals? Have you tried their Helpline? good luck, Richard

[flicka]

Your poem shows you are going to be a Rock for your Dad and he must be SO proud of you. Victoria

[SharonAB in reply to flicka]

Dear Flicka,

Thankyou, he is very proud of his daughter - Chloe. And what is very rewarding through it all our daughter still has a very pleasant, happy, social demeanour. Ah ... the resilience of children to adapt!

Regards, Alana - Western Australia

[SharonAB]

Dear Richard Koe,

Professional counselling sounds like a good idea to follow up with again. Chloe has previously attended some sessions with a professional counsellor familiar with frontal lobe deterioration (Through Alzheimer’s Assoc). All went well & the counsellor was very happy with Chloe's handling of the situation, and how she has the social skills, confidence, trust etc, and has the 'Aunties (friends) who provide her with support. Unfortunately, as I am no longer caring for John the Alzheimer’s door has been closed (Funding parameters etc).

There are a couple of other areas I've looked at - I have been linked to PSP Australia for a while (which is based in Victoria - about 3000 km away) and their network has not quite extended to here (yet). Parkinsons WA provide some support services on their behalf but to date have tended to steer away with counselling services. Fingers crossed and I will keep putting my feelers out looking for other options.

Fortunately, Chloe will talk about things and is quite pragmatic with some strange childlike twists - if that makes sense. This week she described John's brain like a tangled ball of wool that would never be unknotted. A couple of weeks ago (following a school lesson on Egypt) she asked John when she could embalm him and would start by pulling his brain out through his nose. John now takes most things quite literally and as he not was not aware of her school lessons he and his carer became quite wide eyed in response!

-Til Chloe further explained 'It's OK, I won't do it - I'm not qualified yet - no one will train me and its something they only did before even you were born Dadda. Anyway I am too young and Dadda you are still alive so I just want to cuddle you instead".

I tend to promote to our daughter that 'History is what we make today and remember tomorrow'. That some things happen as part of the 'cycle of life' and how it is OK to be angry, sad, confused or upset but always remember that there are times to be happy!

Regards, Alana – Perth Western Australia

[jimandsharynp]

When I lost my first wife to another rare disease I found out, to my surprise, that Hospice here in the USA had counselors that are specifically for children trying to cope with a parent who has a serious disease. You might try them and see what they have to offer.

Jimbo

[SharonAB in reply to jimandsharynp]

Dear Jim and Sharyn P,

Will do,

thankyou, Alana

[SharonAB]

Thankyou for your responses (and lending me your ear by being my sounding board!) I have now enlisted the support of 'Young Carers WA' who have just begun providing counselling services (at the end of last year). I understand the organisation is relatively new and a similar arrangement/service may also exist in the UK (?) Though the organisation is limited to West Australians to use it does have a pretty good web-site to peruse. youngcarerswa.asn.au/?

Regards, Alana

[SharonAB in reply to SharonAB]

Message re counselling.

Now enlisted the support of Anglicare as "Young Carers' resources were too stretched to assist our daughter on the long term. Have had to fight to keep this going (through the legal systems) as John and some others felt it unnecessary our daughter should receive outside support. Has anyone be caught in similar situation?

Regards,

Alana - Wesdtern Australia