Dementia Parkinson’s

Hi mum has had levy body Parkinson’s for many years , has been in a nursing home 3 years residential for a year before that due to extreme behaviour. For 2 years now she has been immobile in bed was getting very distressed screaming but has since getting more frail recently settled a bit . Weighloss is from 47 to,42 kg in a few months and more since they have stopped weighing now as too stressful , swallow is deteriorating has been on a puree diet for a while and they have just thickened fluids to the last measure , needing occasional sub cut hyoscine now for secretions, eol meds there for when needed but not yet and has a pain patch . Waiting for a salt review but I can’t see how they can change things and feel this is about her condition naturally deteriaitng . I’m the only visitor alloweed atm but hope this will change asap , I live away but hope to visit next weekend which will be 3 weeks from last visit , mum stares into space and hasn’t known us for years . It may sound cruel but I’m hoping this cruel disease will take her into a more peaceful place very soon . No qol for many years , just don’t no how long this will last but so frail now and struggling , thanks for listening

Hi Linda, my mum was so physically frail a nursing home was the only option left for her last year. In that time she had mini strokes, lost her hearing and sight, couldn’t read, follow TV but the worst was not being able to chat to each other. Mum told me that when she woke up she thought “Oh no, not another day to get through”. It was a relief to all concerned when she passed away, but still the loss of mum.

Hi Linda

Welcome to the forum and thank you for sharing. As a forum ambassador I wanted to highlight a couple of different options for connecting with fellow carers and for getting support from Carers UK should you need it.

Carers UK run online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to. I’m sure you’ll find many other carers are in a similar situation to yourself.

You can find information on how to register to our online meetups at the following pages:

Care for a Cuppa: Online meetups | Carers UK - the next online meet up is today, 15.00-16.00 with further sessions shown in that link. This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.

Share and Learn: Share and Learn | Carers UK - these sessions range from creative writing activities to beginners Latin dance sessions.

I suggest you also get in touch with the Carers UK helpline to discussion your situation and what support is available

The Carers UK Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email ( They can help provide support and guidance on:

  • Benefits and financial support
  • Your rights as a carer in the workplace
  • Carers’ assessments and how to get support in your caring role
  • Services available to carers and the people you care for
  • How to complain effectively and challenge decisions.