Feeling lost and angry

Hello All,

My Dad is 79 and got diagnosed with Parkinson’s 10 years ago. He is at the advanced stages, and although still mostly mobile, he has considerable difficulties now, and has bowel/bladder issues, frequent falls and most recently a diagnosis of PD dementia.

He lives at home with his wife, who is an absolute Godsend, but it is really starting wear her down. What we are finding most upsetting is the feeling that we are just ‘left on our own’ with this, with very little support. He sees his PD consultant once every six months (for 20 minutes), and it is near impossible to get hold of his PD nurse when we need to. Dad can’t be left at home alone safely now, so we have sorted out an alarm, but we have been told it is a six month waiting list for Occupational Health to come and do an assessment. Upon the dementia diagnosis his consultant prescribed rivastigmine – but there has been no follow-up, no-one checking how he is getting on with it/whether it is at the right levels with his other medications etc.

We have also been told that Dad needs daily exercise and mental stimulation – but what/how/who is going to do this?

Sorry, this is a bit of rant. Just feeling like we are cast out to sea with no support. Any advice would be hugely appreciated.

Many thanks,

1 Like

Hi and welcome to our forum, @Lobbylo73. We have a friendly and supportive group here and I’m sure they will want to say hello soon and share their own experiences.

I’m sorry to hear that things aren’t going so well for your Dad and the waiting he has to get through for help. That’s a very long time indeed and I’m sure your family shares a lot of frustration and likely fear. When it comes to care, the whole family needs to be involved and supported but how to manage this?

Do you touch in regularly with his GP for some interim support? This might be a first step. I’d also recommend that you ring our Helpline to get some advice on what you can do about this: 0808 800 0303. You may also find some useful hints on this page: Caring for someone with Parkinson's | Parkinson's UK.

I do hope that there’s a light at the end of this tunnel for you soon.

Please take care :blue_heart:
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Thank you for your kind reply Janice, I really appreciate it.

I will look into the page you suggested, and also the helpline – I’ll pass that number onto my Dad’s wife.


If your dad is attending hospital after the falls, ask if there is an OT there. They wont be able to assess the home but they can look at what your dad is using, such as a walker and make recommendations as to what is best etc. Better than nothing until the OT assessment at home.

If you are worried about the new Rivastigmine, you could try contact the consultant for a video call until the next app comes around.

You can also ask local council for an assessment of your dad’s current level of care needs. You never know, they may agree to respite or
a carer coming in to give his wife a break, even for an hour.

Finally, the helpline is great. I understand what you mean about having to fight for everything