Advice Please Wits End!

My dad is 77 years old. After being told for a year he didn’t have Parkinson’s his walking degenerated at a fast pace. He fell 6 weeks ago and has been in hospital ever since. All of a sudden they say they are sending him home with a care package. He lives alone. He doesn’t seem to be responding to any meds. He is confused most of the time and he is incontinent. I can’t remember the last time he was assessed by his consultant. Night times are the worse. He experiences what I can only describe as living nightmares and tries to get up. At night nobody will be there and he is sure to fall. I’m reading comments about late stage Parkinson’s and he seems to fit this category rather than early stages. We are st our wits end and feel that we aren’t being supported properly and I don’t know what to do. So sorry for rambling. I just wanted to release somewhere where I might be understood.

Hi Louloulocket,

We’re very sorry to hear about your dad’s condition, it must be an incredibly difficult time for you all right now.

It might be worth taking a look at the ‘caring for someone with Parkinson’s’ area on our website, where you’ll find lots of helpful advice and information:

Please remember you can also call our Helpline free on 0808 800 0303, and they’ll be happy to offer further support and advice. You can reach them from Monday-Friday between 9am-7pm, and on Saturday between 10am-2pm.

I hope this helps.

Best wishes,

Moderation team

I am so sorry to hear about your Dad. My mother is 90. She’s had Parkinson’s since 62. I came here to care for and live in five and a half years ago and the intensity of my care of her has steadily risen until now the Parkinson’s nurse admits that Mum is in Stage 3 of the disease. Dementia was diagnosed 2 years ago. Parkinson’s affects people individually - some more quickly than others. The Parkinson’s nurse was only employed a year ago - prior to that there was no one available for this service. In fact I find that it is only in the last 2 years that people have begun to realise that people with Parkinson’s need support. Perhaps if you could go to your local Social Services or perhaps the Doctor’s surgery who will direct you to the best local services you might get some help coming in to ensure that your Dad is not left alone like that. Also, this Parkinson’s UK site is really helpful for getting you help by filling in your post code and details of organisations that help in your area come up. I do hope that you will get help that you want, that your Dad will get some help, and that you will feel more understood.

I’d make a big fuss about the care plan. It sounds like he’d be much better off in a care home. Make it very clear that you do not agree, and want to make a complaint.

I’m so sorry to hear you’re going through this…it’s like reading my own story a year+ ago. My dad is similar age and has been struggling with parkinsons since about 2011 (finally diagnosed 2013), but by Aug 2016 things were rapidly going downhill. He was very confused and also diagnosed with dementia. Ended up in hospital in the Oct and stayed in for weeks while they promised us a care package. He also lived at home alone. In the end they discharged him, and basically rang me when he was on his way home…fuming!! He managed a few months at home but it was awful. He was ringing me 20+ times a day, was very confused all the time, and was also getting incontinent so things around the house were rapidly becoming very unhygienic.I was visiting each day as well as working and looking after 3 young kids but it was extremely difficult. Then in may/June 17 he went back into hospital after a fall and spent a few weeks there. We pushed for a care package and he came home end of Aug with care visits due twice a day (was never going to be enough). The carers quickly upped this to 4 times a day but nobody could cope with the amount of work he was and after 7 weeks he went back into hospital as he couldn’t get up off the sofa. 13 weeks later, after lots of pushing from us about him needing to go into a home, he got a place at a lovely nursing home. Was a long slog though as most homes assessed him and refused to take him due to his complex needs. He will have been there a year at the end of Nov and it was the best thing for him and us alround. So so sad though having to watch loved ones deteriorate. Hope you can sort something for your dad that helps ease the stress.