I'm new to the FORUM

#1

I've joined the FORUM as I'm hoping it may help me to understand how I can best support my Dad.

My Dad was diagnosed just over two years ago, and as a fairly stereotypical man doesn't open up about his feelings very often, although out of all of my family, my Dad and I have always been very very close.  Since his diagnosis,  he opens up to me about how he is feeling both physically and emotionally the most, and this is something that I don't want to have stop as it's really important that he feels that he can talk to someone about these feelings.

However, I am not coping very well, I can't tell Dad that his conversations upset me as I'm worried that he would stop talking to anyone, and this also means that I can't really talk to other members of my immediate family, as I don't want this to get back to my Dad.  I am wondering how other people cope with the frustration of not being able to control the situation.  I hate that there are questions that Dad wants answering that no-one can answer about how things will develop.

I hate seeing what Parkinson's is doing to his confidence levels, and how it is turning someone who was always a physically fit and active man into someone who doesn't want to go out as people will be looking at him.

Any suggestions on how other people have dealt with some of these issues would be greatly appreciated.

I hope that the above doesn't come across as too negative, just trying to look at how I look after myself, whilst supporting my Dad as best I can.

 

#2

Hi CazF

I don't have any direct experience to offer - I'm a PwP not a carer - but I didn't want your post to go unanswered: carers are as important as the pwp, and i respect what you're trying to do for your dad.

So, the best i can do is to suggest the usual routes: there's a carer's section on this website, with lots of publications which may cover your concerns; there's the PUK helpline no, top of every page. And there's possibly local support; a local group you could join? (got to the support for you tab) Is there a specialist nurse in your area? you might be able to talk to them (there's patient confidentiality here of course - but you're not asking about your dad, you'd be asking about you).

Hope there's something here to help you, and i  hope carers can offer you their direct experience.

Best wishes

Semele

#3

Hi caz You have Done The best thing joining us. Think all I can Say is be there for him And listen to hIm. Talking is good. I have found It beneficial to keep a sense of humour.  And dont forget We are hear to listen and help if we can.

#4

Hi CazF

I have been writing a blog about the issues that have arose out of my diagnosis last year (I am 34). I try to deal with issues in an honest and open way (warning I do talk about both the dark and the light). Its at 

http://dialoguewithdisability.blogspot.co.uk/

Feel free to have a read; it might help you and your Dad to know there are others who are going through similar things (the uncertainty of the prognosis is a huge issue in Parkinson's). I have attempted in my own way to come to terms with my disease and accept it. This way, I can live alongside it and find space in my life to be me and not just a disease

I hope you find it useful

dr jonny

#5

Hello Caz

It sounds to me like you are doing exactly the right thing,let your dad talk his fears out of his system ,there most likely will be hard times ahead and you must prepare but you can engage and lessen the worst of the effects of PD , I talk to my youngest daughter easier than I do my wife, I find that when your life is thrown into turmoil by events beyond your control things eventually level out and a pattern seems to form , its almost like a road stretching out ahead of you ,it will not always be easy but you and your Father will travel together and deal with each episode you encounter on the way, be strong Caz, ,I wish you both the very best of  best wishes .

                                                             Fedex

#6

Thank you so much for all the advice, guidance and information, it has helped me to know that I am doing the best thing I can for my Dad, which is to be there for him, and that we are not alone on this journey of discovery and challenge!

I think I will be coming back to these pages on a regular basis to share our experiences and to get support - so thank you!

 

 

 

#7

Thank you for sharing this with me, it is very useful in understanding some of issues that other people are dealing with, to help me best support my Dad.

I wish you all the very best.

Thank you