My Dad is possibly in stage 4 and we are starting to struggle. We would be very grateful if there is anyone who have managed to support there sufferer until end of life without much intervention. Any help or advise would be gratefully excepted.
Thanks Gary
Welcome to our friendly and supportive forum, @Garyjames We’re very sorry to hear that your family is going through this. We know that it’s far from easy. The community here should be along soon to let you know what their experience has been. Meanwhile, we’d encourage you to read the information we’ve gathered for you here: Supporting someone with Parkinson's | Parkinson's UK
We also have a Helpline where friendly advisers can listen to your concerns and support you. You’ll find them on 0808 800 0303 or email [email protected]
Take care 
Janice
Forum Moderation Team
Hi Gary, Its a tough road - well done for reaching out. The toughest bit is that no-one who isn’t with you 24hours understands what being a carer at this stage is actually like. It is a lonely place. Even professionals don’t know it all. I am a retired Occupational Therapist, and I saw many patients with Parkinsons within my specialised area of work. I knew nothing about what it is really like 24/7!
You’ll probably be aware of your local carer support groups, and this group plus his local Parkinsons Nurse should be able to signpost you to professional-type help for the range of issues you’ll be dealing with. I counsel you to accept everything that is offered rather than struggle without help. It is a long road, getting help means you can keep going doing what you want to do for the person you love.
Make sure you analyse how much care you are giving, and how long you spend on each task, day and night, and apply for all the benefits that are available for him (in our case, attendance allowance - higher rate was awarded… fill in the form as for a ‘bad’ day. That is the true level of what you have to be prepared to do for him… this is not the time to be brave and pretend all is well. ) The resulting money is for him to pay you for the care you give - or for you to have 24 hours off now & then and pay someone else to do what you do. Breaks are a life saver. My little treat is that someone else looks after hubby one morning a week and I go off and have a coffee and huge slice of cake - or whatever - at a quiet cafe. Just sitting on my own, quietly, reading, watching people, for 3 hours is my recharge time. That £10 or so that I spend once a week keeps me going. I tease hubby that he gets a week’s full time care for £10 so he’s got it sussed!! It also buys things that make my work easier - I pay a cleaner to come in now and then, for a full ‘do through’ just so I can focus on care for hubby. I can’t do both. I saved the care money up and bought a robot hoover for in between times… NOT a luxury. I just haven’t got the oomph to vacuum in the day after being up doing night care at 3am. To be doing that and hearing the vacuum buzzing about downstairs getting it all clean for the morning is wonderful! Its not a luxury. Making the practical stuff work takes funds. Claim them. That’s what they are for.
Emotionally, it is when you are home alone, and cannot see a way through, that it is tough. However - I have recently come across an excellent book which has helped me enormously - not just because it covers all the professional and practical matters, but because it is written by someone who went through a carer journey like ours and decided to share honest truths and insights. The best aspect is that it is done with 100% love and respect for the one we are caring for, but sees the funny side while dispensing gems of wisdom. I’ve found the humour quite restorative! Do take a look at ‘The selfish pig’s guide to caring’ by Hugh Marriott ISBN 0-7515-3709–8. pub Time Warner Books. I write this today, on a day I am absolutely shattered and at the end of myself… and have escaped into this Forum to feel supported, so yes, I understand. You did the Right Thing getting on here. xx
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Thanks that message makes a huge difference.
Thanks
Hi Gardener 1,
I also thank you for your post. I too am sitting in bed at the end of a long day and needing support from the forum. So thank you you gave me that support and some good ideas too.
Thank you Gardener1.
I am the PD patient, not the carer, very early stages but nevertheless I can see some of the issues looming.
Your experiences are helping me grasp a fraction of how I need to proceed.
So many thanks. Your efforts are amazing.