Hi, my mum has Parkinson’s and it’s having quite an impact on daily life and taking its toll on my dad. I would like him to receive some sort of support and care for my mum to give him a rest but just have no idea where to start, what is out there, cost etc. can anyone give me any help or point me in the right direction? Thanks in advance
Welcome to the Parkinson’s UK forum.
Having to care for someone with Parkinson’s can be very challenging so I definitely empathised with your mum. However, she is not alone and there is support available to her. Your parents may benefit from having home care to help manage your dad’s condition - your social services or social work department - or health and social care trust in Northern Ireland - has a responsibility to assess your parents needs and arrange services that can help your dad stay at home. There’s more information on this here - https://www.parkinsons.org.uk/information-and-support/home-care-and-care-homes
If your mum is in need of financial help, she maybe entitled to carer’s allowance - carer’s allowance is a benefit for people who regularly spend at least 35 hours a week caring for someone with substantial caring needs.We have more information on this here - https://www.parkinsons.org.uk/information-and-support/carers-allowance
Lastly, we have a free helpline service with a team of highly knowledgeable and friendly advisers that would be happy to speak to you in more detail on the services available to your parents. Please feel free them on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].
I hope you find this info helpful.
My wife has had Parkinson’s for nearly 15 years and we started on the care help journey about 3 years ago.
The first challenge is to convince the sufferer to accept a carer coming into their life. You need to convince your Mum that your Dad will be only be able to continue looking after her if he maintains his health and to do that he needs some time off.
We started with 3 hours a week, which gave me a break, with the carers being supplied by a local care charity. As the good lady has needed more care, we’ve expanded that to two sessions of 6 hours as she now has dementia and needs constant supervision. We’ve also used both respite and live in care to give me a longer break.
They are entitled to both a care and carer assessment from their local social services, again this is a big hurdle to get over. However, in our case they pay for three hours care per week to provide a carer break. In a nearby city, I know someone who gets six hours a week paid. Depending on circumstances they may also pay for care for your Mum. You can find out more from their local council / social services website. The one for Hampshire is very good https://www.connecttosupporthampshire.org.uk/home
Also think about offloading some routine jobs like gardening and cleaning the house to make more time for caring. Cost for care depends where you are, but around £20 per hour. Respite care depends on the level of care required, but in round numbers £1500/week.
For a different type of support, consider joining, if they haven’t already, the local branch of Parkinson’s UK. This gets you out into a non threatening social environment, but where you realise you’re not alone. Sharing both the Parkinson’s and carer problems with people suffering from the same can be helpful. Our branch also runs exercise and singing therapy classes which also provides a short opportunity for the carer to do something separate, if only to go for a cup of coffee undisturbed.
It’s very important to get the right help, caring is incredibly stressful - far more so than working! There’s a book called “The Selfish Pig’s guide to Caring” written by Huw Marriott. As you can guess from the title it’s not in the list bit politically correct! Huw’s wife suffered from Huntingdon’s Disease, so he writes from experience, in a light hearted but very informative way. It’s an easy read and everyone I know who’d read it, has found it helpful.