I have had pd now for about 17 years or so. we told out kids about my diagnosis then but really haven’t spoken much about it since, i know that seems strange but my illness has progressed slowly so iv been lucky, but now i am having to make compromises in my life. i think now is the time we should be chatting to our sons about what’s happening. My question is are there any guides on how to do this? or maybe you have some first hand guidance on how you told your family, any suggestions? thanks
Hopefully other forum members will be able to help you sharing their experiences of talking to their children, but you may also find some useful suggestions in our guides to help people with Parkinson’s talk to others about it.
We have on our website a general guide on how to talk to people about Parkinson’s and another on how to talk to children about it. Depending on your children’s age you might find our guide to Parkinson’s for teenagers handy as well. It’s worth having a look at these resources in case you find helpful ideas and tips to help your children understand what is happening.
I hope you find this useful.
Mara (Moderation Team)
You know your family better than anyone, personally I just told them all as I ran into them, straight and to the point, but that is just me. You could even simply guide them to the website and say it might be a good idea to look through it. Whichever way you do it, the choice has to be on your terms and don’t feel any guilt over having to talk about it, and it is possible that they don’t mention it due to not wanting to upset you. Good luck in whichever direction you take
My mother has had PD for about 30 years. Her’s has progressed slowly like yours has. About 7 years ago she started to be challenged and had some falls. Last year she broke her hip and had an operation. We are a small family but then I became a widow 5 years ago and came to care for Mum, Dad having died last year. They never mentioned anything to their grandkids. They never sought the help of the nurses or attended any functions, preferring to remain isolated. After Dad died I opened the doors and gave Mum the opportunity to realise that she is not the only one with this problem and the PD Nurse visits regularly so she has some idea about what PD is doing to HER body. The grandkids ring occasionally, pop over sometimes, but it’s all about them and their friends/parties/interests. They don’t realise how serious this can be for Mum, and for me now her carer 24/7, but I’m wondering whether it is necessary to impart any further the implications of PD? They won’t change overnight, or want to come here to help, or do or be any less loving, but they would be hurt deeply and I don’t know how much to say/do. Mum is late stage 3 now and although the progress of the PD is still fairly slow and I’m doing my best for her I don’t want to upset the grandkids. They are my brother’s kids. My brother is estranged from my mother. Any suggestions?
Hi thanks for the advice, and your right been straight forward with them is the only way to go really, thanks again.
Are you on talking terms with your brother? Does he know? Might be worth a chat…
Hi deep I Don, t know how much help this is going to be but I have had pd for just over 5yrs now and have regular falls amongst other problems and still some of my aunts and uncles don’t believe there is much wrong with me I had a cousin whom I treated like a sister everybody thought we were brother and sister and she thought I was making out to be worse than I was and she is a nurse sadly after she made some disparaging remarks about she no longer is part of my family I get all my help and support from 2v.good mates so I would not waste time on people who are, not interested as you need all your energy for your mum maybe talk to any good friends you have you may be surprised good luck with mum I know what it, s like as I looked after my father for 4yrs he had pd
I’m really sorry to hear this, my heart goes out to you and your mum. Sadly, not everyone understands the impact Parkinson’s has on not just the person with the condition, but on the carer too which is probably the reason why the grandkids may be unaware of their actions.
I can already see that you’ve received some supportive advice from your fellow members which is great, if you need additional support with talking to people (including family and friends) about Parkinson’s, we have a lot of useful information on our website here - https://www.parkinsons.org.uk/information-and-support/talking-people-about-parkinsons.
We also have over 300 local groups in the UK where you can connect face to face with people in similar situations to yourself . The groups welcome family members and carers, and some involve health or social care professionals, there’s more info here for you - https://www.parkinsons.org.uk/information-and-support/local-groups.
I really hope this helps.
Thank you so much for writing. They DO say that you can choose your friends and how right that has turned out to be. Yes, I have a few who I can call friends but we can’t get together much because of poor Mum. At least they don’t keep telling me they are behind me if I wish to put her away into a home. She has made her feelings clear on this point and trusted me with PoA. As a Godly person why on earth would I choose to go listening to the mean relatives? Here’s hoping that Mum has made out her Will as she wishes it to be made. I’ve told her to. At least I’m not sole beneficiary and have told her that I am not doing this for anything. People think that I’m being paid and all sorts but they forget how difficult the days are without worrying about such stuff. Just getting her to the bathroom sometimes is time consuming and before long it’s night time again … but God has a plan for everyone and one day it will be their turns.
Meanwhile I’ve taken your suggestions on board and it was nice of you to think of me and respond. The main thing about PD is not how long you’ve had it, who looks after whom, or anything in-between. It’s the sharing of the information so that we can all help because each individual person gets this rotten disease in their own way and no-one can or should tell you how that is or how you feel inside.
I’m hoping that you will correspond with me occasionally not just to keep me informed about things but to let of steam if you want. I don’t want anything in return except your friendship. I offer you complete confidence plus a book of information about the PD that I’ve come to know from my mother’s point of view.
Keep yourself interested in everything. Thank God for your friends who seem to be doing all the right things for you. Mum has had this for so long now that she has gone off almost everything but I try to encourage her every single day, introduce new things, take her out, make her laugh. I’m trying to do my best but at least I know that there are people like you out there I can write to sometimes if I feel like the weight of the world is on my shoulders.
Thank you again.
As far as I am concerned you can get in touch with me anytime and if I can help I will or if you just want a shoulder to lean on or just a good listener I am here and I may take you up on the offer I will keep in touch with you I can safely say your added to my list of new friends take care