Hi there,
My mum (61yrs) has just been very recently diagnosed. We are very close, speak every day on the phone, but I live in a different country. I am so proud of her positive attitude towards this but I still want to offer support and be there for her. Personally, I feel like I am dealing with grief, and I cant tell her that. I feel sad a lot. She has given so much of her life to everyone else, the most unselfish woman I know, and she does not deserve this. If anyone has any advice I would really appreciate it. Thank you.
1 Like
Hi JoJo,
We just wanted to say hello and welcome you to our forum community. We won’t diminish or write unrealistically about the challenges your mum is going to face, but we can provide some data so you can avoid misinformation, and help link you, at least virtually, with others who are facing these challenges, and overcoming by learning to live with them. Please have a look at our website, starting with this FAQ page for family of people with Parkinson’s. And know we have a free and confidential helpline staffed with truly wonderful advisers who can support with a range of needs. You can reach them at 0808 800 0303.
Our warmest wishes to you both,
Jason
Forum Moderator
Hello 1099jojo
My heart went out to you when I read your post, news of your mother’s Parkinson’s has clearly hit you hard. You say she doesn’t deserve this and no, she doesn’t none of us do. A friend I’ve known since junior school said to me just the other day ‘it isn’t fair this has happened to you…’ My answer was the same it always is to that sort of comment, ‘why not me?’ The truth is that’s life, it’s not always fair and doesn’t always work out as you hope and expect. The truth is that until something happens that affects you personally, most people take their good health for granted and assume that will always be so. Your reaction is entirely understandable, not unusual but probably compounded in your head by the distance between you. You write that you feel like your dealing with grief and you’re right, that’s exactly what you are dealing with. Your mother is still alive but everything has changed. She is living with a chronic condition that as things stand. has no cure and chances are you don’t know much if anything about it.
I have Parkinson’s diagnosed nearly 13 years ago. I’m not going to tell you it’s a laugh a minute, it’s not. It can be frustrating and challenging, it can throw unexpected curved balls at you just when you are going along nicely and sometimes you just want to stop the world and get off. On the other hand it’s not all bad either. It is in most, a slow moving condition so there is time to adapt and adjust. There is no reason to change any hopes dreams of plans although perhaps in time they may need to be done a little differently, The early days post diagnosis can be strange - it feels like a lot should be happening but the reality doesn’t always match the expectation - but things do settle down and you can just get on with the business of getting of living. Your mother will find a way to live with her Parkinson’s that will suit her, there’s no right or wrong way just the way that suits her. You say she is being positive that’s a lady after my own heart I’m a huge fan of positivity - and it is possible to have a good life with Parkinson’s if you so choose and I have a feeling your mother will choose to do precisely that.
In a way, us who have Parkinson’s have the easy bit - whatever it throws at us we have no choice but to go through it. It can be harder I think, to watch someone you care about go through x, y and z knowing there is little you can do to help.
Take care. I think you will both be alright once the dust has settled.
Best wishes
Tot
Hello 1099jojo
My heart went out to you when I read your post, news of your mother’s Parkinson’s has clearly hit you hard. You say she doesn’t deserve this and no, she doesn’t none of us do. A friend I’ve known since junior school said to me just the other day ‘it isn’t fair this has happened to you…’ My answer was the same it always is to that sort of comment, ‘why not me?’ The truth is that’s life, it’s not always fair and doesn’t always work out as you hope and expect. The truth is that until something happens that affects you personally, most people take their good health for granted and assume that will always be so. Your reaction is entirely understandable, not unusual but probably compounded in your head by the distance between you. You write that you feel like your dealing with grief and you’re right, that’s exactly what you are dealing with. Your mother is still alive but everything has changed. She is living with a chronic condition that as things stand. has no cure and chances are you don’t know much if anything about it.
I have Parkinson’s diagnosed nearly 13 years ago. I’m not going to tell you it’s a laugh a minute, it’s not. It can be frustrating and challenging, it can throw unexpected curved balls at you just when you are going along nicely and sometimes you just want to stop the world and get off. On the other hand it’s not all bad either. It is in most, a slow moving condition so there is time to adapt and adjust. There is no reason to change any hopes dreams of plans although perhaps in time they may need to be done a little differently, The early days post diagnosis can be strange - it feels like a lot should be happening but the reality doesn’t always match the expectation - but things do settle down and you can just get on with the business of getting of living. Your mother will find a way to live with her Parkinson’s that will suit her, there’s no right or wrong way just the way that suits her. You say she is being positive that’s a lady after my own heart I’m a huge fan of positivity - and it is possible to have a good life with Parkinson’s if you so choose and I have a feeling your mother will choose to do precisely that.
In a way, us who have Parkinson’s have the easy bit - whatever it throws at us we have no choice but to go through it. It can be harder I think, to watch someone you care about go through x, y and z knowing there is little you can do to help.
Take care. I think you will both be alright once the dust has settled.
Best wishes
Tot
1 Like
I agree with every word that @Tot has said…and they articulate it so well. I too felt very sad when I read your post. I am a woman in my sixties, diagnosed within the last year, and have had to tell my children…so the reverse of your situation. As Tot said your feelings are perfectly natural. Is there another family member/friend you could confide in just to let these feelings be heard ? You are not alone in this situation…there are so many avenues of support, other than family and friends, where you will be able to access information and support at any time.
From my perspective I want to own my condition. I feel very much that it’s for me to deal with and like @Tot, it breaks my heart to think you feel grief. I don’t want my children worrying about me and it would cause me angst to think my kids were feeling the same as you…but I get it…it’s a lot to process for everyone involved. Like your Mum, I’m relatively early stage but I’m still the same person and don’t want anyone treating me any differently. You say your Mum has a positive attitude and like @Tot I believe this will see me and your Mum through a lot. My advice to you would be, just to keep on speaking to your Mum every day, tell her you love her and as time passes, I’m sure your feelings of grief will lessen. Good luck.
1 Like
Hello JaneG and welcome to the forum. 1099jojo’s post was not an easy post to respond to even when you have done a few as i have. Having contributed to the forum for a while one of the things that has become clear to me is tbat many more read posts than respond and that writing that first reply only happens when a cenfidence is reached that comes when things settle down and that csn take a while. That is of course a generalisation and only how it seems to me which is why your reply stands out. You’ve not been long diagnosed yourself but recognised common ground between this first post and your own circumstances and wrote an honest, from the heart reply which i am sure will bring some reassurance and comfort. I hope you are managing your own early days and are able to ‘own’ your Parkinson’s as you wish. It is a sentiment that very much mirrors my own snd whatever my family and friends may say in private is fine i know i can’t stop them worrying, but in my presence they take their cue from me and my Parkinson’s doesn’t take centre stage all the time. It took a while to get them to sit on their hands and i do hsve to make some allowances, my 91 year old mother struggles i know thst it happened to me not her but mostly it works. I hope that it works out that way for you too if that’s how you wxnt it to be and i hope to you will respond to other posts as you feel able. I wish more would realise that you can have sonething worthwhile to say whether newly or long diagnosed.
1 Like
Thank you Tot. Is there any way I can reply to you privately?
I have sent a private message which you can reply to if you get stuck let me know
Tot
1099jojo
I’m so proud and touched about your care and concern for your mother and for your realisation of how much she has offered to you.
The fact that you are in a different country is irrelevant as long as you carry on speaking to your mother and offering your support to her albeit from afar. I believe this is good enough for get at the moment.
I too, had been diagnosed with Parkinson’s disease nearly five years ago. I have two children who are both in different countries. They call me sometimes but they hardly ask about my disease and how I cope. I feel as if I go through this battle entirely on my own. This is the reason why it’s very important to give your mother the moral support she needs and don’t worry if you are afar. One day she may need physical support too but take things one at a time. After 5 years, I’m still able to look after myself and work full time as an accountant. I hope I could be of some help to you.
Good luck
1 Like
Hi everyone,
Thank you so much for your replies. It has been a few weeks now and the feeling of ‘grief’ is fading. I couldn’t help but instantly think about all the things we did together, particularly as children. My mum was (and still is) the most incredible mother. One of those mums who would surprise you with a camping trip on a Friday after school, or have your pyjamas on the radiator if it had been raining on your walk home. She would come and collect me and my friends if we were stuck for a taxi in the middle of the night - without hesitation. Every single thing she did was to care for her family, and I think that’s where the ‘grief’ feeling came from.
I feel like now I owe it to her to be there for her, look after her, and I hate that I’m not physically present. I know for now things will be fairly normal as ‘as they were’, but it is something I might need to think about and consider in the future which will no doubt change things for my own family.
A question I do have though is this. Do I raise the subject to let her know I care and want to know how she is doing? Or do I wait for her to bring it up and discuss the bad days? I don’t want her to feel alone, and I am so sorry @Celeron1 that you have had to feel this way. I also dont want her to feel bombarded with questions when she probably just wants to ‘go on as normal’ like before.
Thank you again everyone. This forum is so helpful and supportive.
1 Like
Hi Jojo
Just wanted to say that I’m in the same boat. My mum was diagnosed last year and I feel like I’m still grieving the loss of the life she should be living. She’s not coping well emotionally and her symptoms seem to be progressing more quickly than we had anticipated. She is 63.
I can’t really offer any advice as we’re fairly new to all this but wanted you to know you’re not alone.
2 Likes
Hello 1099jojo and daughternumber2
First jojo1099, sorry for not answering your reply before now but occasionally, although I do try and check for any updates on posts I have replied to, occasionally,one passes me by and I see it some time later. To daughternumber2 welcome to the forum and because I missed 1099jojo’s reply, I missed yours too. Apologies to you both.
You were both asking the same sort of thing and I was just wondering how things were, whether you had sorted out the issue you both highlighted or if there was anything more I or other forum members could help you with.
Once again, my apologies.
Tot
Hi @Tot
I too apologise, I have not logged on in so long. To be honest I am feeling overwhelmed and frustrated lately. Initially I felt like both my parents were taking this seriously and were accepting of the fact that mum’s life should change and take care of herself more, put herself first. Now 6 months later we are back to square one, mum is running around after everyone, her tremor is getting worse. I can tell she is not eating properly, or resting enough etc. I have tried so many times to gently remind her that she needs to have more self care, but I dont think anyone is listening. I want to address this again with a stricter tone but I dont want to upset anyone. i feel like they are just burying their heads and not considering the fact that things could progress and change quickly 
1 Like