Awareness of Carea needs

Hi there my dad was diagnosed 24 years ago, and in the last year his care needs have become increasingly difficult to deal with at home.

He does not recognise that Parkinsons has had any impact at all on his life over the years, and he believes that he would still be able to live a fully independent life, which causes much frustration for me as a caregiver.

I have never known anyone else with the condition, so I am curious as to whether this is common with people with advanced Parkinsons to be in so much denial I suppose, or is it more likely to just be a personality thing? he has always been a fairly isolated person.

Any comments would be much appreciated.

thank you

Hi and welcome, @ds12. This is a friendly and supportive space and I’m sure some of our members will be along to say hello and share their experiences soon.

Everyone is different and, as you say, your dad is a solitary person, but our members will have more to say about this. Importantly, you are feeling concerned about this so I’d suggest you get an appointment with his doctor or Parkinson’s nurse to discuss your fears and talk about the possibilities for his care.

Taking care of someone with Parkinson’s is a challenge and it’s important that you make sure you take of yourself along the way. We encourage you to read about advanced Parkinson’s: Advanced Parkinson's | Parkinson's UK and also read about being a carer: Caring for someone with Parkinson's | Parkinson's UK.

We’re here to support people with Parkinson’s but also their family and friends. Please call our Helpline if you have concerns you want to talk about and our advisers will be happy to support you.

Best wishes
Forum Moderation Team

Good morning ds12 … I have Parkinson’s & live on my own. I have had Parkinson’s for a while but was only diagnosed a year ago after a positive Datscan. I am at a relatively early stage of Parkinson’s. I do like my independence & would not like to be told what I should do by anyone. I have just started to have a cleaner into my one bed flat as I can no longer keep the place clean.

You don’t say if your Father lives on his own. You also don’t say if he lives in a house or flat etc …

Do you have to give him a lot of help or are you just worried that he
cannot manage ?

In the later stages of Parkinson’s I would like to think I am managing to look after myself even if I was not.

Best of luck.


different people deal with things differently. Denial is not a specific symptom of parkinsons but can occur with all chronic illness. Some suffers can be cognitively impaired is your father okay mentally otherwise? Perhaps its something to talk to his doctors about.

Good morning ds12 … I think we all “deal” with our problems differently. When I was first diagnosed I did not believe the diagnosis. I was not being in denial as such I just did not think I had Parkinson’s at the time.

I also have other health issues which cause similar symptoms, I never know for certain what is causing what.

Best wishes

Welcome to the forum. Your post resounded with me. My husband has had Parkinson’s disease formally diagnosed for 12 years now but more likely 15-16 years noticeable. He too denies Parkinson’s has any impact on him. He can’t speak clearly, very slurred he has bad hallucinations, bowel problems and cognitive problems to mention a few but doesn’t consider himself impacted by Parkinsons. He tells people that they can’t tell he has Parkinsons and of course they’re too polite to argue with him. If he has to see any medical professionals who ask for a history he never says he has Parkinson’s I always have to say. For this disease that he’s in denial of having he takes medication at 6am, 10 am. 2pm, 6pm, 9pm and 10pm. Best Wishes

Welcome ds12 I don’t want to sound sexist but I had had PD for a while it is now telling me what to do, before I was always in charge. My hubby is 5 years older than me he has had hip problems, will he use a stick NO he still thinks that he can do jobs like when he was 18, now myself with getting advanced PD will use a stick to kelp me get about, I now have a cleaner in twice a week, as I know myself , that i could no longer cope with all the house work, it took me about 6 months to convince my hubby that I needed a cleaner, Women seem to accept things? Men still want to do everything with out help they will never admit that they need it? Of cause this does not apply to all men. Sorry boys if I have ruffled your feathers.

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