I haven't been on the forum for many months now, as I havent felt the need to talk to anyone or read about Parkinsons, I try to think about it as little as is realistically possible when living with my father who has been diagnosed 2 years. Today I had a bit of a melt down after my dad chatted about Parkinsons amongst other things related for about an hour and half to my grandparents, repeating himself many times.
He spoke of how everyone deals with it differently and it occured to me that its not just the Parkinson sufferer but the family and friends who deal with it all in their own way, and it may sound 'selfish' but I think he sometimes forgets that me and mum have to live with it everyday too.
Everyone says how it must be tough for my dad but noone ever says about it being tough on me and mum too, for the first time in 2 years mum had a friend ask how she was the other day and not just my dad--it certainly makes a change.
Anyone got any advice they can give me, or is there anywhere that me and my mum can get support too?
Thanks in advance
Steph
Your dad is right - everyone affected by Parkinson's deals with it in their own way but its important to realise - as you do - that the condition affects the whole family. It can be easy for the PWP (like me) to forget that fact.
I think its very important that you don't feel that you are being selfish by acknowledging your own needs. You ask where you can go for advice & support. This forum is for all people affected by Parkinson's - so is the helpline and the other aspects of Parkinson's UK.
Elegant Fowl
Your dad is right - everyone affected by Parkinson's deals with it in their own way but its important to realise - as you do - that the condition affects the whole family. It can be easy for the PWP (like me) to forget that fact.
I think its very important that you don't feel that you are being selfish by acknowledging your own needs. You ask where you can go for advice & support. This forum is for all people affected by Parkinson's - so is the helpline and the other aspects of Parkinson's UK.
Elegant Fowl
hi steph,deffo not selfish at all,when some one is dx with pd,it not only hits the person it hits everyone around close to them to,and we are all different deal with everything different to one another.ive been dx for 11 half years now,and im only 43 years old,im still learning things about pd,and i guess as resurch goes on ,theres alot more to learn in the futre.as for surport for your self and other members of your family,as well as your dad,there is pd groups that are held one day every month,it depends in the area were you live ,when yours would be,the best way of finding this info out is giving the help line a call on the puk forum,the numbers at the top of this page on the left hand side,they will be able to help you.its the best thing i did joinin my pd group,i now do alot of fund raising for them,have a laugh ,it like one big family there,we go out on trips etc.surport one another,it welcomes everyone.
Hello Steph and welcome,
You will see a section on the forum for carer's family etc so do please write on there and you will get support from others who also live in the same situation as you,
My husband has had Pd for almost thirty years and we statred a branch several years ago, one of the main things we wanted to do was to make sure carer's had support and we started having a day every couple of months where we would all meet but split into two groups one for pwp's and one for carer's.I know only too well that family members get forgotton and we have a son who was only ten when my husband was diagnosed, in the early years I was always trying to protect him from the difficulties but as time went on we seem to spend all our time working around PD as it is not a condition where you can just take a pill and carry on. There are carer's groups such as Crossroads and the Princess Royal trust and you will find your local group on the web also as said the helpline is for everyone affected by PD so do call them. Unfortuatley a lot of people with PD have a lack of recongnition of the affects on family but I don't think they can help it I know my husband was a really caring placid man before pd but over the years he has changed such a lot and I feel we only get about 10% of my old husband but it is lovely to see the real man sometimes as he was always so kind as well.
Having tried to be as independent as possible and keep as much as normal a home you just can't get a way from the huge impact it makes especially in the younger group but it also depends on other factors around you so please do try to have some time for you and your mum and contact the above for more help and information, by the way Crossroads also cater for children who care for their parents. Good luck and my very best wishes
vivian
You will see a section on the forum for carer's family etc so do please write on there and you will get support from others who also live in the same situation as you,
My husband has had Pd for almost thirty years and we statred a branch several years ago, one of the main things we wanted to do was to make sure carer's had support and we started having a day every couple of months where we would all meet but split into two groups one for pwp's and one for carer's.I know only too well that family members get forgotton and we have a son who was only ten when my husband was diagnosed, in the early years I was always trying to protect him from the difficulties but as time went on we seem to spend all our time working around PD as it is not a condition where you can just take a pill and carry on. There are carer's groups such as Crossroads and the Princess Royal trust and you will find your local group on the web also as said the helpline is for everyone affected by PD so do call them. Unfortuatley a lot of people with PD have a lack of recongnition of the affects on family but I don't think they can help it I know my husband was a really caring placid man before pd but over the years he has changed such a lot and I feel we only get about 10% of my old husband but it is lovely to see the real man sometimes as he was always so kind as well.
Having tried to be as independent as possible and keep as much as normal a home you just can't get a way from the huge impact it makes especially in the younger group but it also depends on other factors around you so please do try to have some time for you and your mum and contact the above for more help and information, by the way Crossroads also cater for children who care for their parents. Good luck and my very best wishes
vivian
Steph, I am in a similar position except that my dad(actually father-in-law but better than my real dad) is now 83. I have the advantage of not living with him but my mum-in-law cares fulltime. The only way I can help is that I look after him for at least a couple of hours and insist that she goes out. She has now got used to the fact that he is ok and enjoys her "me time". Once a month I take her out for a full afternoon (longer at times) and my brother-in-law comes. I think the lesson we have learned is to ask for help and that if other family members say how hard it must be for him, I dont feel guilty for suggesting that they could help by keeping him company so mum gets a break. Good luck to you and your mum.