Hello, I hope you are all well.
My father was diagnosed with early-onset parkinson’s disease when he was 54 and told my sister and me about a year later. We have always known that something was wrong with him since about 3 years ago because he was hunching over constantly, shaking sometimes, and was extremely slow and falling over. I am very concerned about him and his well-being all the time, and I’m not sure what to do about my feelings
Some days I want to sit and talk and spend all the time in the world with him, but other times I wish he would either get better or just die so I can stop worrying about him. I know that sounds terrible, and I feel absolutely horrible for thinking it, but I need some guidance with this. I feel depressed, stressed out, angry, upset, and I just want my feelings to end.
I can’t stop myself from thinking about what will happen to him when I leave his house. And some days I get into arguments with him over small things such as the dishes, vacuuming, and how I do my chores at his house. I feel so mad at myself whenever I get into arguments with him, and I just want it to stop. I worry about him so much and I know it’s unhealthy, but I can’t stop myself from thinking “what if he’s dead”, “what if he needs help”, and “what if he fell over and is dying”
so I ask all of you, can you give me advice? Am I a horrible person for being mad at him sometimes? Thank you for reading my story.
Hello, thank you for your post and welcome to the forum. We hope you enjoy the community here and find it helpful.
We are so sorry to hear about how you’ve been feeling and want you to know your feelings are completely normal, they don’t make you a horrible person and we are here to help you, your father and your family.
It can be really tough caring for someone with Parkinson’s and watching them go through it. We have information on our website for carers which you may find useful. It includes tips to help you look after yourself and links to support group which may be great for you to connect with other people experiencing something similar. You can find it here: Supporting someone with Parkinson's | Parkinson's UK
We also have a free, confidential helpline on 0808 800 0303 where you can speak to our specialists and ask any questions you have. They will be more than happy to listen to your feelings and concerns, and be able to give you advice on how to manage your situation, care for your father and look after yourself.
Please do take care and reach out if you need support. We’re sending you all our best wishes.
Hello sadson
You may not believe this, you may just think ‘well you would write that wouldn’t you’ but I can tell you with absolute certainty you are not a horrible person, nor are you selfish or any other negative label you attach to yourself. All you are doing is trying to find your feet and make some sense of a situation that has rocked your world to its core. There is no right or wrong way to deal with news like this, only your way and anything you think or feel is legitimate.
There is no quick fix solutions, up to a point you have to find a way to work through your feelings so that you can give your Dad the support you clearly want to do. There are several ways you can do this. You can call the Parkinson’s UK helpdesk 0808 800 0303, you can go to your GP and seek referral for counselling or do this privately if you wish. You may want to find a local support group and talk directly with people affected either directly or indirectly and of course the forum is always here. You didn’t say how your sister is coping but perhaps just talking to her may help. Depending on your relationship with your Dad, maybe it would be better to have a heart to heart with him - a different approach to this is to write him a letter in which you can take your time to say what you really want to say, which he can read and which removes the ‘risk’ of your being overtaken by your emotions.You may at this stage, want to ‘go it alone’ which is fine but you need to think about what you are trying to achieve. My instinct is to think at least part of the reason you are floundering is because you probably know very little about Parkinson’s and that makes it seem exceptionally scary. However do not go mad consulting Dr Goole or reading everything you can get your hands on; you run the risk of information overload and only remember the worst case scenarios. May I suggest you read some of the posts in the introductions and personal stories section. You will quite quickly see you are not alone in feeling as you do with emotions all over the place and you will see the replies these posts generated.
To get the ball rolling I will tell you a bit about Parkinson’s. It is a complex condition for which there is at the moment, no cure. However for many of us the condition moves slowly and there is time to adjust. I was diagnosed at 52. At the end of the year I will be 16 years post diagnosis, I still live on my own with minimal help, still go out and about and I am doing well. Family and friends have long since accepted that I will ask for help if I need it and that’s how I want it to be. I know it doesn’t stop them being concerned, I know they sometimes watch me carefully because I can be slow or look clumsy but I know what I can do and they respect that. For my part I have to accept I can’ stop them worrying but they are letting me do what I want to do, namely just get on with my life.
It can be a difficult condition to manage although the medication once they get it right can make all the difference. One of the big problems is that getting the medication right can be difficult and like a lot of things with Parkinson’s, much is trial and error. Also symptoms are often not consistent and can change even during the course of the day. It takes some getting used to but as time goes along you get used to it, know how you and your body react in any given situation and grow in confidence in being able to manage your symptoms.
I would not wish a diagnosis of Parkinson’s on anybody, it I could get rid of it I would but there are worst things that can befall you, it’s not the end of the world unless you choose it to be, Take your cue from your Dad, if you let him tell you or show you how he wants to play it you will better understand how to help. Sorry this is so long but I hope it has helped if only a little -assuming you made it this far.
Finally I will tell you my own way of living with Parkinson’s is actually very simple and is well known here on the forum and that is I stay positive most of the time and I don’t define myself by my Parkinson’s I am and always Tot first and I happen to have Parkinson’s. Your Dad will find his way take your cue from him as a start point and you will be able to learn together how you can both live with his diagnosis.
I wish you well.
Tot.
You are not a horrible person, but you are overwhelmed with all the feelings you are experiencing due to the difficulties your dad is living with day to day. Im a carer, a partner, a wife of someone with advancing parkinsons symptoms. I love my husband very much, but i too have days when i get really irritable and he can tell , i feel awful when i show my frustrations at things not going well and the guilt i live with, you xan imagine. Tot has given you a lot of information and advice. You should definately follow up on everything you think you can cope with. For me personally, my biggest help is reading posts on this forum, Parkinsons uk help line, its usually someone who has first hand knowledge of what its like living with or caring for someone wirh parkinsons, i found them very supportive and helpful and they can signpost you to other local groups who may help you. Id say, dont all your feelings are understandable, there are carers groups, sometimes your gp service may have nurses attached who will also give you advice and ensure your dad is receiving all the available community help thats in your area. Its vital you care for your self as much as your dad receives help. Its not easy, but you can both cope a little better with support.
Best wishes c
Hello Tot, Thank you for reaching out with this wonderful passage of information that you took time out of your day to write. I want to say thank you for your help with this. There aren’t a lot of people who I can talk about this with, but when I saw this forum website, I immediatly jumped on the opportunity to connect with others like me.
I will be honest, when reading your passage, and you said “there is no quick fix solutions,” it made me a little sad inside, but as I kept reading, you made me realize that there are many long-term solutions, such as the support group or hotline you mentioned. I did in fact go down a rabbit hole of Google searches, and I got terrified of what COULD happen, and I was completely oblivious to what is happening in front of me.
My father was diagnosed around when you were, and it makes me overjoyed when you said that at the end of the year, you will be 16 years past diagnosis. It gives me hope that my father can still be happy and live a wonderful life with this diagnosis. I’m not sure what medications my father takes, but I know that he is routinely working out at the gym and getting his exercise in.
My father often says ‘no’ to help and is always reluctant when he needs it. But if I do “let him tell me or show me how he wants to play it”, then I feel I could be of better help, like you said. And I hope living with parkinsons is actually very simple, and He isn’t defining himself with his parkinsons. Thank you for the very heartfelt message, and I will definitely talk to him later this week.
