Unfortunately, my family has had years dealing with the affects of PD. Grandads, Uncles and my Dad have all had/have it.
In my Dads case he is now in a home at 63, unable to cope with the mental affects of either his drugs /or as a result of his PD. We have been through it all, with him being sectioned twice, me forcing him into ambulances, police, wrong drugs, overdosing meds, having electroconvulsive shock therapy (first brought him out of his depression, the second time didn’t have the same affect).
Dad just keeps repeating the same things over and over. He is tired, given up, wants to be normal. He doesn’t want to speak with me or his grandkids as it says it upsets him. The slightest change in routine sends his anxietly levels through the roof. He is just existing with this horrible disease and i’m not ashamed to say, it makes me cry. A big lump of a lad and the situation reduces me to mush because I miss him so much and he is still alive.
But what really tips me over the edge is that nobody can tell us honestly and in a straight way that he wont get any better and what the prognosis is. I know that sounds daft with all we have been through and with the disease being degenerative, but we hope that some of the old Dad might come back to us but we feel nobody in his care circle understands. Id rather know if this wont happen and then I can start dealing with it. If anyone can help with trying to giving some honest comfort either way I would very much appreciate it. Thanks very much.
Hi
Welcome to the forum. I am sorry to hear about your issues, however you have come to the right place for some help and support and I am sure you will receive lots of replies. In the meantime please do contact our free confidential helpline, which is always here to help you on 0808 800 0303 - they are open Monday - Friday 9 am to 7 pm, Saturday 10 am to 2 pm (closed Sunday and bank holidays). Or you can email us on [email protected]. They will be happy to help and if appropriate put you in touch with one of our Parkinson’s specialist nurses or a local adviser.
Hello and I am sorry to hear that things are so hard for you right now. I don’t think it matters that you have had PD experience with others, this time it is different, this is your dad. If that makes you weep with anger, frustration just plain sadness or any other emotion then there is nothing wrong with that. It is an honest emotion. If I might make an observation, it seems to me you are wanting black and white answers when in truth there probably aren’t any. Speaking as one who life has seen fit to bestow the unwanted gift of PD, I tend to think of it as an inexact science so a lot of the time but especially when yet another change kicks in it’s more of ok what’s happening now. I am not a doctor and would stress that what I write here is simply my personal view but is underpinned by some knowledge and understanding from various jobs. To see things from your dad’s perspective, it is no surprise he says he is tired – physically his body is letting him down and mentally his brain is too. It’s not an everyday tiredness but a real exhausting fatigue. He says it upsets him to speak with you and the grandchildren. I suspect there is also an element of him not wanting you to see him as he is now, not the same person you knew. I know for me I don’t want to people to remember me late on when, like your dad, PD may make life very hard but as someone who was once an ok person if you know what I mean. As to your specific questions you are unlikely to get black and white answers from anyone because there is probably no way of knowing. I think in a way you are currently going through something akin to a bereavement process. Your dad is still here physically but the person you knew isn’t. What’s more the man that’s here now seems, consciously or not, determined to make life as hard as possible for himself and everyone else. I think you can only do what you are doing now – being open and honest with yourself about what you think and feel about what is a situation that in all probability will continue in its present form, a roller coaster ride that grinds slowly upwards before crashing back down giving the whole range of emotion on the journey. I hope you find a way to find some kind of acceptance (although I am not sure that’s the right word) that allows you to be able to still be with your dad even when knowing there is little in reality you can do. Keep being there for him as best you can is all you can do, however hard. You also need to look after yourself and please don’t beat yourself when you are doing the best you can with circumstances that are beyond understanding. I don’t know if this helps you at all and it is only an opinion but it may help to recognise you are perhaps going through a sort of bereavement process and that your dad will continue to be on the up and down, good and not so good days that are the hallmark of Parkinson’s. I really do wish I could say something that would enable you to move forward in the way you want, but I can’t, maybe someone else on the forum can. Clearly you care about your dad and you are doing your best. At the end of the day that’s all you can do and all that matters. Take care. I don’t know if this has helped but I hope if nothing else, it has maybe let you think about things a little differently.
Hi Tot,
You are correct in everything you have said and thank you for your words. Black and white it certainly is not, but nevertheless your words mean a lot because its all so true its so relevant to my and my Dad. I wish you all the very best. You are a very lovely person and thank you again.
Andy
Hello Andy
Thank you so much for your reply, I am so glad you were able to take something from it. Responding to your type of post is both rewarding and daunting. Rewarding because it makes me feel useful and that I have helped but also daunting because people such as yourself post at a time when feeling most vulnerable and I always feel like I am reading between the lines and hoping that I am reasonably accurate in what i write. I hope at some point you may consider responding to a post or two. Your experience will be different to mine and you could potentially have a lot to offer, particularly to family and carers. I am of the mind that more we share our experiences and views whether the person with PD or a person with a connection to PD in some shape or form, we will all benefit. If it helps, I would suggest you take a look at the creative corner and read some of the poems posted there, it may help you understand how having PD can affect an individual and maybe help you to ‘read’ your dad in the process; you will have to pick and choose a bit because there is a vast range of views and I don’t pretend to understand them all and some of them are not easy reads but all are honest - and yes, I do post in the creative corner from time to time should you wish to take a look. The forum is always here if you need.
