Being a carer

"If you are looking after someone such as your spouse, partner, parent or other relative, you are a carer even if you don't think of yourself as one because you are 'just helping your family'." Find out more about being a carer at Age UK Scotland: https://www.ageuk.org.uk/scotland/information-advice/care-and-support/advice-for-carers/

Carers UK Scotland: https://www.carersuk.org/scotland "We're here to make life better for carers." They have produced a very accessible booklet about caring in Scotland:

https://www.carersuk.org/images/Looking_after_someone_guides/CUK_Looking_After_Someone_2020-21_Scotland_Oct20.pdf

Under the Carers' Charter (2018) https://www.gov.scot/publications/carers-charter/pages/1/, all carers have the right to a personalised plan to identify what is important to them. You can arrange to have a care plan assessment undertaken by your local authority: "An Adult Carer Support Plan is carried out to identify how being a carer is impacting on your health and wellbeing. One of our Social Workers or someone from the South Ayrshire Carers Centre will arrange a time to meet and have an informal discussion about your caring role."

The support plan gives you the opportunity to identify the following:

your thoughts and feelings about caring
your relationship with the cared for person
your social and leisure activities
your physical and mental health
your education and work life goals
what would make things easier for you to carry out your caring role
whether a short break is needed
what would happen in an emergency, if you were unable to care.

You can find out more about carer support planning here:

https://www.carersuk.org/scotland/help-and-advice/factsheets/carer-support-plans-and-statements

The NHS PD Team

We have a whole PD team looking after Euan, not just his consultant but a specialist nurse, a neuropsychologist, an OT, a physio and various other specialists who all speak to each other and join the dots so that Euan gets the best of care.

The PD team members are also happy to speak to me and listen to my concerns, without breaking any confidentiality or breaching Euan's sense of ownership.

That's Ayrshire and Arran NHS for you. Gold stars from us.

The Ayrshire and Arran NHS webpage for Parkinson's brings together a lot of useful contact information:

https://www.nhsaaa.net/services-a-to-z/parkinsons-disease/

Carers' Groups & Organisations

There are lots of local and national carers' groups, so it's worth checking out what's going on in your area. It's a great chance to meet/speak to others in a similar situation. Your GP surgery and your library will have information, as well as your local council.

Unity Enterprise: http://www.unity-enterprise.com/carers-centers/ Supporting carers in North and South Ayrshire.
Ayrshire Carers' Centre: https://www.facebook.com/SouthAyrshireCarersCentre/ Online and face-to-face support, drop-ins and activities.
Crossroads: https://crossroads-scotland.co.uk/ "One of the country's leading voluntary sector providers of support for carers and their families." Enter your post code to find your nearest local service.
Carers UK: https://www.carersuk.org/scotland "We're here to make life better for carers."
AgeScotland: https://www.ageuk.org.uk/scotland/information-advice/care-and-support/advice-for-carers/

You will find information about support for carers in Ayrshire here: http://www.unity-enterprise.com/carers-centers/ and here: https://www.south-ayrshire.gov.uk/carers/support-for-carers.aspx

There is a lot of helpful information about support for carers at Care Information Scotland (CIS):

https://www.careinfoscotland.scot/topics/carers-health-and-wellbeing/

Parkinson's UK Scotland

This great bunch of folk really understand what you're dealing with, both of you.

Make contact with your Local Adviser who will help you with all the hassles of applying for grants, benefits, Blue Cards, etc, and also provide a listening ear.

Phone 0344 225 3728 to ask to speak to your Local Parkinson's Adviser
Visit https://www.parkinsons.org.uk/about-us/parkinsons-uk-scotland for a wealth of information and resources
Get in touch with the Ayrshire Younger Parkinson's Support Group (AYPG) to connect with a friendly and supportive bunch of folk who will make you very welcome: https://www.facebook.com/ayrshireyoungparkinsonsgroup

Emotional Support

Life as a carer can sometimes become overwhelming. If you need someone to talk to urgently, you can always call the Samaritans - don't struggle on alone. And looking after your mental and emotional wellbeing is a crucial part of your caring role. The links here have some great resources and some of the organisations have drop ins and support groups. If you want to find a properly registered counsellor, check out the Counselling Directory to find someone near you who can help.

Samaritans: https://www.samaritans.org/?nation=scotland Tel: 116 123 (24 hours)
Breathing Space Tel: 0800 83 85 87 (Weekdays: Monday-Thursday 6pm to 2am, Weekend: Friday 6pm-Monday 6am) https://breathingspace.scot
MIND: https://www.mind.org.uk
South Ayrshire Carers' Centre: https://www.facebook.com/SouthAyrshireCarersCentre/
South Ayrshire Life: https://www.southayrshirelife.org
Counselling Directory: https://www.counselling-directory.org.uk

Relaxation and Self-care

Blurt Foundation: https://www.blurtitout.org/resource/self-care-info/ - I love their self-care cards
Look out for helpful podcasts, breathing activities, meditations, relaxing music playlists, etc...
Checkout my 'You, Me & Mr P' self-care page

Your Tribe

They keep cropping up! Don't underestimate the importance of your tribe in keeping you going. They will listen and understand and help you find a way through any emotional or practical maze you are trying to navigate. Try to keep in regular contact with the post positive and uplifting members of your tribe - phone calls, a walk, going out for coffee, talking about PD stuff, talking about anything other than PD stuff!

Isolation and Loneliness

Even when we have people around us we can still feel isolated and lonely. You can find organisations across Ayrshire who might be able to help by clicking here: https://www.nhsaaa.net/services-a-to-z-support-pages/social-isolation-and-loneliness/

Seascape has a befriending scheme for anyone in South Ayrshire who is lonely or isolated, and they are trialling it in East Ayrshire too: http://www.seascapeayr.org.uk/advice-support/befriending/

Age UK has a helpline and their 'Community Connecting' scheme: https://www.ageuk.org.uk/scotland/what-we-do/tackling-loneliness/

Ayrshire Parkinson's Carers' Support

Coming soon - Ayrshire Parkinson's Carers' Support - a support group affiliated to Parkinson's UK in Scotland specially for carers of those with younger onset Parkinson's in Ayrshire.

In the meantime, contact AYPG - Ayrshire Younger Parkinson's Group to connect with other folk in a similar situation.

https://www.facebook.com/ayrshireyoungparkinsonsgroup/