My parent was diagnosed with PD not long ago. I’m finding it really hard to accept the diagnosis. On the one hand, I feel awful for my parent: I can’t imagine how frightening and uncertain and upsetting it must be. On the other hand, it feels like it’s making their usual frustrating personality traits worse, I feel resentful towards them that they will need more support and care and I feel frightened that I might have the opportunity to become closer with this parent and I don’t necessarily want to be given how difficult life has been with them, but I’m worried I’ll regret not.
The worst part is my parents’ marriage has never been great and now it feels at breaking point. As a child, I’m finding it hard to know how to feel and where to turn. I feel entirely responsible for holding everyone together, even though that’s not necessarily the reality, and I’m also resentful of feeling that. And I feel guilty for struggling with a mix of emotions! Anyone else had an experience like this? Thank you for reading and in advance for any responses.
Hello candle-light
Your post is a classic example of being totally wrongfooted by the recent Parkinson’s diagnosis in this case, of one of your parents, and you are just spinning between your perception of one dreadful scenario after another, to confusion over your feelings and dread about what all this means. There are a few things worth saying straightaway and I am going to spell them out so that they are clear.
Anything and everything you are feeling is perfectly legitimate - whatever it is. Only you know how you feel.
Having said that, you are worrying already about things that haven’t happened yet and may not happen - it is better to deal with the reality of what is actually happening, rather than waste time and energy second guessing something you only imagine could be so.
You are not solely responsible for ‘holding everyone together’ whatever it may feel like. Your parents are adults. You say they have never had a great marriage and maybe it is now at breaking point but it is for them to decide what happens next. I’m not suggesting you won’t be affected, but any decision is theirs to make
There are some things worth knowing about Parkinson’s from the start.
In most it is slow to progress so their is time to adapt and adjust, given this there is absolutely no need to tie yourself up in knots at this stage. So take a deep breath, stop panicking and give yourself time and space to sort out what your immediate concern are. May I suggest you call the helpline 0300 0808 800. Speaking to someone neutral may help you sort out what your priorities are and help you see a way forward.
The early days post diagnosis are often difficult for a variety of reasons. Many have no idea what Parkinson’s is or the impact it has. It is true it can be a frustrating, challenging and difficult condition to live with but that is only one side of the coin. Many of us manage very well for many years so it is most certainly not all bad - it is possible to have a good life even if different to what you thought. My own diagnosis was 14 years ago, I live quite happily on my own and only have two hours ‘help’ a week which I arranged mainly to make it easier to get to appointments and so on since I no longer drive. There are plenty like me who do what they want to do for many years after being diagnosed and things do settle down.
One thing that comes through very strongly to me in your post is that your relationship with your parent or parents was complicated before this diagnosis and that this has given rise to fears/concerns that this will increase the complexity of a relationship that has never been easy. I am no expert but it might be that at some stage you may need some form of counselling to help you work out how to manage these relationships and what your true feelings are. Obviously only you can decide if this is something you would consider and ‘counselling’ comes in many forms and I am first to admit it is not for everyone. It won’t work unless you are ready and open to the idea but it is what I think from what you have written.
I am not sure how much difference what i have written will make to you but if nothing else, stop. Take a breath and give yourself time to sort out your thoughts and feelings and what your priorities are. You don’t have to do it all at once and I would encourage you to contact the helpline - I am sure that would help set you on the right path.
Besr wish
Tot
I completely understand where you are coming from with this. In my case my parents separated a long time ago and i am juggling both of them now heading into old age, different locations and health systems plus other elderly relatives, although only one parent with PD and other parent is doing well health wise for now. I struggle with the emotions of everything that went under the bridge between them back then during a horrific separation and the ramifications of decisions made which now have a huge effect on me.
All i can say is the guilt needs to be left at the door because it wont solve anything. I try my best for them both and thats all i can do. I worry about the future for them and whether i can keep it all going, whether my own health will permit me to do so. But thats down the road and I’m only concentrating on the present. I try to have an outlet which keeps me sane and I have good family and friends around me. Minding your mental health in whatever way you need to is absolutely essential.
Excellent advice TheLippyOne especialy your last two sentences - absolutely crucial in my opinion whatever your circumstances. i hope you continue to manage your complex circumstances with the brave and honest approach your answer shows.
best wishes
Tot
