I’m new to this forum but my mum was diagnosed with PD 6 years ago, aged 55. At the time she was determined that nobody else knew about it and asked it. Her and my Dad divorced 10 years ago and until recently she was living alone. She now has a new partner who she has told about the condition, but he is recovering from a head injury from a bike accident and isn’t always able to support. Although Mum’s tremors were initially quite obvious, they have settled a lot with medication and the main symptoms now are slowness of movement, freezing and some trips/falls. Now her employer has noticed that she is working more slowly than others, sometimes falling asleep at work and generally a bit different to how she was before. She is determined not to tell anyone about the condition because she wants to be treated the same, unfortunatgely now her boss has her under performance review at work because she can’t keep up with everyone else.
She originally apploed for the PIP allowance, I thought this might help her to reduce her hours without struggling financially, but this was rejected.
Over time I’ve managed to negotiate that she takes on a bit of extra help- ie I do the online shop, help with cleaning and we have a cleaner calling weekly to help keep on top of these things, but she won’t accept anymore help. I stay over once a week to help with jobs but I’ve noticed Mum wakes up earlier and earlier to get ready for work- coming in for a chat sometimes at 3am- we’re both tired and end up arguing.
I’ve noticed that Mum is really distancing herself from our family (her mum and dad are still alive) and think she is ‘off’ with them by not volunteering to help them with things they need help with, she has two siblings who have also noticed things aren’t right. I feel like I’ve tried to almost ‘cover it up’ for the last few years but now it just isn’t working and we need some backup.
I’m worried that if she won’t talk to work then they may end up sacking her and then we will be really stuck.
I’m really struggling with how to move things forward- I tried suggesting some counselling as I feel as though a big part of the problem for Mum is her accepting the condition- but that went down badly. She has some fabulous friends and family who I know would support but whilst nobody knows its proving a real challenge. Most of our conversations at the moment just lead to arguments and I don’t really know where to turn next. I’m so frustrated as I feel like we can handle this with the right support but I’m worried she will burn herself into the ground if we don’t take some action soon.
Has anyone else been here? Any thoughts really welcome xxx
A warm welcome to the Forum.
Before this lovely community chimes in with their valuable experiences, we wanted to first of all let you know that you have come to the right place for support. It sounds like your mum has been having a really hard time and I admire you for the love and support that you have continually showed her throughout this challenging time - I’m sure it hasn’t been easy.
It’s quite understandable that your mum is feeling reluctant to tell her employers about her Parkinson’s diagnosis and she doesn’t have to unless:
- it may cause a health and safety risk either to her or to someone else
- She needs to change the way she works because of your symptoms. In this case she’ll need to ask her employer for a reasonable adjustment under the Equality Act or Disability Discrimination Act in Northern Ireland. Although she won’t need to tell her employer what her condition is, they will need to know how her disability makes it difficult for her to do your job.
As her symptoms are affecting her performance at work, she may need to disclose her condition to her employer; however, we have a lot more information on this via the Parkinson’s UK website which can be found here: https://www.parkinsons.org.uk/information-and-support/work-and-parkinsons
With regard to your mum’s PIP application, if she or you would like to challenge their decision, you can do this by appealing against a decision using the official appeal form which can be found via the Gov.UK here: https://www.gov.uk/government/publications/appeal-a-social-security-benefits-decision-form-sscs1
We also have more information on how to appeal via our website here: https://www.parkinsons.org.uk/information-and-support/personal-independence-payment
Lastly, we have a confidential and free helpline with a team of fantastic advisers that are more than happy to provide you with more help and support for your mum. Please feel free to contact us on 0808 800 0303 or email us at [email protected].
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@Malfy2407 I have found your post really comforting, having just found out myself about my own mums diagnosis. Mum has known for over 10 years but was retired so the work thing isn’t the same. However, mum has hidden this from me all this time and even though i suspected something wasn’t right with her she has never wanted me to know or other family members. I found out by seeing tablets in her house with “as directed by the Parkinson’s team” written on it. She now still wont tell her own sister who has spoken to me about my mums deterioration in health over the last 5 years and i am now in a really awkward position having to keep this quiet too!. I read your post and found this really helped me to know your mum did similar. It is a year old so i am interested to know where you are now and how things have progressed in terms of people knowing. I feel telling close family will only surely result in more caring people and support for my mum?! x
I didn’t see the original post but can understand why it resonated with you. I do believe people have the right to manage their Parkinson’s, or indeed whatever the condition is, as they wish but when it makes it difficult for others I think that does change things.
The first thing that I immediately thought was that you wrote your Mum had kept it hidden for ten years but she hasn’t really - you may not have known what it was but you knew something was wrong, as did her sister. A lot of communication comes from non verbal cues and they are not easy to hide generally let alone with a condition like Parkinson’s with such a potential, huge mix of symptoms.
I have Parkinson’s myself diagnosed in 2009 and have always been very open about it and that has suited me because family, friends and everyone else takes my lead which is basically I will ask if I need help otherwise let me get on with it!
For what it’s worth in my view, and it is only my personal opinion, if you and her sister have noticed things are amiss chances are others have too But people hesitate to ask for fear of being wrong, causing upset or whatever. I think you maybe need to let your mum know just what a difficult position she is putting you in by unintentionally drawing you in to her probably not so secret secret and expecting you to go along with it, while at the same time fielding the concerns of her sister (and others) which she doesn’t have to do. You don’t have to have a conversation if that’s too hard, maybe write a letter so you can order your thoughts. Maybe you could offer to break the news for her and stress that she doesn’t want anyone to treat her any differently. Maybe her sister could take the bull by horns to help you, after all their relationship as sisters will be different to yours as mother and daughter. It won’t be an easy thing to do and you will have to decide when and how, but her Parkinson’s will progress and however much she may not want people to know but it will be a very difficult even impossible secret to keep. The situation you now find yourself in will also get more difficult to manage and you run the risk of accidentally letting the cat out of the bag which would make everyone feel bad. I think your Mum probably doesn’t realise what she is asking of you or if it’s fair of her to assume you can just fall in with her when it has different implications for you.
I stress it is only my view based on the little you’ve written and there may be a 101 reasons why it’s a non starter so feel free to ignore if that’s the case. I hope Malfy2407 replies as I am also interested to hear how things are and may have a better suggestion than mine.
Thank you so much @Tot your words have been so helpful to me and i am so pleased you have taken the time to respond to my post. I think you are totally right and a letter is perhaps the best way to tackle this as i am quite emotional at the moment too so that will help without me pouring out tears when trying to talk to my mum about this. Appreciate your support on this xx