Hi! I’m 22 and my mum’s had PD for 4 years now, she’s 62. I’ve been at university since her diagnosis meaning I only see her when I go home for breaks. She seems to be doing well, exercises loads and is on Sinemet. The uncertainty about the future is something that just makes me want to sob all the time now. I thought after 4 years I’d become less emotional about it but whatever I do doesn’t seem to help. In some ways, her diagnosis has made my appreciation for her skyrocket which means she’s the person I turn to for any issues I face - I don’t know whether this is a bad thing though, as I suppose sometimes I feel guilty for this, and also feel anxious as it makes me think about a time when I won’t be able to do that anymore. I tell her I feel bad but she reassures me she’s there for me to chat to/ ‘that’s what I’m here for.’ I suppose this might be a really negative way of thinking about it, and maybe I’m just going through a spell of being upset about it which I guess is normal. What worries me too is that she did not tell me about her diagnosis since I was at my first term of university - she was diagnosed in August and didn’t tell me until December as she didn’t want to worry me. I’m suppose I’m grateful for this, and I understand why she did it but I guess it really makes me anxious that when things become worse, she won’t tell me or be completely honest out of fear of making me stressed/worried about her. I tried to talk to her about this and she reassured me she would tell me (also that I would notice apart from anything) but it’s something I still worry about a lot. I suppose I thought that since 4 years have gone by it would have gotten easier to feel less upset about her diagnosis, but I’ve almost found it just to have gotten worse, and thinking about it still just makes me want to cry. Sorry for the emotional post, but if anyone has any words of advice I would love to hear them! x
Hi and welcome to the forum, @emmy2, This is a friendly and supportive space for anyone with Parkinson’s and the people who care for them. I think our members will empathise with your situation and be along to share their own feelings about it soon.
I’m very sorry that you’re having such difficulty. I can’t imagine that anyone has an easy time accepting that a loved one has Parkinson’s. The future also feels uncertain and, in fact, there’s no way to predict what symptoms will show up and how severe each will be or how Parkinson’s will progress. All anyone can really do is listen to their doctor’s advice, follow the treatment plan, and live life in the very best way possible.
Your mum obviously feels the need to protect you and cares about you, just as you care for her. You can only keep the lines of communication open so that she knows you are there for her and can listen to whatever she chooses to tell you. And very importantly you need to be good to yourself and make sure you’re in the best physical and mental health possible. We have a whole section about caring for someone with Parkinson’s here: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons. You’ll find ideas and resources there, including stories from other carers and how you can find your own support in your area. Can you also talk to your mum’s care team to see how they can help you?
If you feel you need to chat to someone and get some advice and support, our helpline advisers are there for you during business hours on 0808 800 0303.
Very best wishes
Janice
Forum Moderation Team
Hey @emmy2 … so glad you reached out here on the forum.
My husband has Parkinson’s and we have a 19 year old son. As we have a significant age gap, my husband was 60 when we had our son who was eight years old when husband was diagnosed. We should have told him straightaway - in an age appropriate way - but we didn’t. I think all us parents naturally go to protect our kids from hearing difficult news. I also think we were still getting to grips with it and didn’t want to tell him before we had a handle on it. I suspect that was the same for your mum too. Anyway, of course our son picked up on it and it caused him more anxiety. But we then were honest and it was alot better for him. We also organised for him to talk to a counsellor and that really helped him alot. Have you thought about this? I used to talk to a therapist for several years to work on my anxiety about the future and it was so helpful.
One thing I would say is that Parkinson’s is really slow moving and that it’s likely your Mum has many, many, many good years in her. My husband has been pretty independent and it’s only recently that he has found things more of a struggle.
One thing I’m glad that we did was - after the initial shock of the diagnosis - was to, as much as possible, do our normal things - go away, go out to dinner, the movies. Enjoying as much as we could while we can. I know it’s hard, particularly if you are someone who worries about the future but the best advice I can give is to try to focus on the now,
Maybe to this little thing - everyday, write down three things you appreciate each day… it could be lighter evenings, having a chat with mum on the phone, or having a take away while you watch your favorite show.
If you start to worry about the future, one thing I do know for sure. That even when her condition gets more limiting … you will still be able to enjoy her company and being with her! That won’t stop - even in 20 years! You’ll still be able to talk and hang out even if her mobility gets more limited. We are doing more with my husband in the house enjoying listening to music and TV and he will be 80 in a few months.
Good morning emmy2 … I think it is brilliant that you care so much for your Mum. I was diagnosed with Parkinson’s about 8 months ago although I know I’ve had it for a while. For me my Parkinson’s symptoms are manageable. I have got over the initial shock & I am getting on with life.
There are people in this World that have health issues worse than me & your Mum. Parkinson’s is not a death sentence.
If we are lucky we get old. We get into the 60’s, 70’s & 80’s & we do get ill. There is nothing [at the moment] that we can do about it. Life deals us cards & we have to deal with the cards we are dealt.
I am certain your Mum would rather you didn’t worry.
Best wishes
Steve2
Hello emmy2
My heart went out to you when I read your post. I’m not sure I can say much that will reassure you to be honest, but what I can tell you absolutely is that there is nothing wrong with your feeling as you do even though your mum was diagnosed four years ago. Time has nothing to do with it. The reality of any situation, not just what you are facing now, but any situation for anyone can hit at any time and the emotions felt will be what they will; so please don’t think you should be ‘used to it by now’ as if that would somehow mean you can’t have an occasional meltdown such as you are having at the moment. Having said that I have been wondering how to reply to your post for a few days and indeed keep changing my mind so hopefully this time will make it to the end lol
You have already been given some good advice by other forum members which I hope has helped. If I may, however, I would like to take a different view of what you are going through at the moment. I freely admit I am playing Devel’s advocate here and it is only my view based on what you have chosen to divulge so it may not be accurate. However i always try to be honest in my replies and even if not accurate may make you pause and perhaps see things a little differently
The overiding impression I got from your post is that you are overthinking things and worrying about things that may not happen or which at the moment anyway are unknowns, For example you are not alone in having concerns about the future. Worry about the future occupies the minds of a lot of people with Parkinson’s and family and friends who are involved with them, understandably so - Parkinson’s is a chronic condition that will deteriorate over time and as things stand at the moment there is no cure. It is one of the few things you can say about Parkinson’s with any certainty that it affects everyone. Knowing that, the future can force it into one’s conscious thinking in a way that would not normally be thought about. If you stop to think logically however, those of us with Parkinson’s may face an uncertain future but then that is the same for everyone. I may have Parkinson’s but that doesn’t make me immune from being run over by the proverbial bus any more than the next person. You say your mum is your confidant but feel guilt/anxiety about when this may not be so further down the line, despite your mum’s reassurances she will be there for you. You may be right but equally she may be right. At this stage you just don’t know… I am truly not being critical of your current emotional state, we all have our moments but living with Parkinson’s in whatever capacity is a marathon, not a sprint. It’s not easy. It can be challenging and frustrating and you will go through a whole range of emotions. Equally however it is not all bad. In most it moves slowly and there is time to adjust and adapt. It is possible to have a good life but you can only do it one day at a time, concentrate on making today the best it can be because as I have said many times on the forum, this 24 hours is a once only - there are no repeats.
I can’t tell you how because I am not you but if you can find a way to live in the present and value and treasure the great relationship you appear to have at the moment it will go a long way - and I also think it ould be the best thing you give your mum too, it can’t be easy for her to see you so upset knowing she, or rather her diagnosis, is the cause. Think about it is all I ask and come back and tell us how its going some time.
Best wishes
Tot
emmy 2 Welcome tot has giving you some good advice and I was just the same with my mum she had dementia and the GP told me that if she lived with the condition the longest she would live 10 years she lived till she was 99 year old. PD is slightly different as you take each day as it comes. You say you mum did keep it a secret but no matter how old your children are you will feel the same, ask yourself what your mum would like to see and 10/1 she would say OH! I want to see my daughter get her cap n’ gown from uni. so this is just a suggestion, find who your mum’s social worker is and see about getting her some help, so while you are at uni you won’t have to worry about knowing that she is ok as there will be some one to help.