Carers' Catch-up - things I've learned and things that help me cope as a carer...

Often, I feel I am running with the wind, reacting to the unexpected, rushing to meet the expectations of others, juggling an impossible number of time-limited tasks and wading through treacle - all at the same time as my interruptions are being interrupted by further interruptions. At other times I just feel flattened and unable to move, even though there is stuff still needing to be done. This is the worst of life with Messers P and D. It's exhausting and frustrating. Today's blogpost gives me a chance to take a moment to step back and reflect on it all and share some of those reflections in the hope of helping other carers.

Things I've learned as a carer

Propping each other up at Croy

• Benefits of being a registered carer By chance I mentioned to my GP last year that I now care full time for Euan (DWP Carers Allowance). She said she was very glad to be informed and would note it on my record. It means I will be called for my Covid vaccination along with other 'unpaid carers'. She also said the practice has support groups and activities which I will be able to connect with in due course.
  

• Pinpointing the right sources of help This can be a time-consuming nightmare, so when, out of the blue, a loving friend with greater experience hands you a gem there is a huge sense of relief. Thank you, Linda! The Ayrshire Independent Living Network and their expertise around Self-Directed Support (SDS) is going to be just what we need after Euan is assessed by Social Services in the coming weeks. We can release Euan's funding to appoint a personal assistant who will work with him to maintain his independence - e.g. helping him fly his drone, process his photos, stay in touch with friends, get out and about. I've added their details to my 'Useful Links' page where there are many other sources of useful information.

Keeping the show on the road

• Keeping a record of useful conacts I write all the important healthcare, support, medical and household numbers down in a big A4 index notebook - very useful for me, but also very handy should anyone else ever need to step in to help.

• Emergency planning Our 'Euan's Doin's' folder has everything needed to help someone step in and look after Euan, if I am ever incapacitated. You can read more about such useful resources in the 'Planning Ahead' section of the website.
  

• Council Tax Reduction Because Euan is on the higher levels of PIP (Personal Independence Payment) and now has a dementia diagnosis, we might be entitled to 25% off our Council Tax - I'm busy working on the application and will let you know how we fare. Fingers crossed! Forms are available from your local authority.

Meet Kermit! (And Millie Moho)

• The Motability Scheme - meet Kermit! We steeled ourselves to go through the 'change of circumstance' process for Euan's PIP last year - in other words doing the whole bang-shoot again - and Euan was finally granted the higher levels of PIP he certainly deserved. I cried when I realised it made him eligible for the Motability scheme. This was the first time since Euan's PD diagnosis that something had been offered to us that would really make a material difference to the quality of our lives. I felt as if a Fairy Godmother had decided to take us under her sparkling wing. We chose a bright green SUV - Kermit the Kamiq - easier for Euan to get in and out of, and much easier for him to find in car parks where the majority of cars are silver or grey. The car is taxed, insured and repaired by the scheme, all we do is pay for it with Euan's mobility allowance, put fuel in it and replace tyres when that becomes necessary. Huge weight taken off my shoulders, one less responsibility. Hurrah!
  

• Photocopy everything! When we did the 'update of circumstances' for Euan's PIP, I was so thankful that I had kept a copy of the original application (all 50 pages!!). Applying for PIP is pretty harrowing and it made a grim job so much easier, rather than having to start all over again from scratch.

Camilla the Chameleon

• Don't try to crochet in a 'quiet' moment... In a house where my interruptions are regularly interrupted, it's very easy for a rookie 'hooker' to completly lose the plot! There's way too much counting involved in crochet not to be totally focussed, so mostly I only crochet now when Euan is a sleep, and I try to keep a pen and paper handy at all times so that I can quickly jot down what row I'm on when the inevitable interruptions come.

Taking time to reflect can really help you to see your own agency and progress, even when times are tough.

Things that are helping me in my carer role

• Asking for help - We have realised several times in recent months that we couldn't make things work without professional input. We have had excellent support from a range of NHS professionals including Joanne the OT and Marie the physio who liaise with each other and have both provided practical advice about techniques and pieces of kit for Euan to use - which have made a difference to both of us. We have also had helpful phone calls with our PD nurse and with consultants (tip - phoning the consultant's secretary can be a good way to arrange to speak to a specialist). We are doubly lucky because we also have a fantastic Parkinson's UK in Scotland adviser, Lorna, who supports us with applications and paperwork such as PIP and the Council Tax - she's worth her weight in gold. And I'm learning to ask for help from friends, too - Sally makes this very easy!

• Planning - We have a white board with the shape of the week and the detail of 'today' and 'tomorrow' and each day we have a bit of a chat about what's coming up and what we might want to do. I have started a list of 'smash and grab quickies' - things we can do at the drop of a hat, even in the pandemic lockdown, that will cheer us up in some way. 'To Do' lists are also hugely helpful - and I begin each one with three things I can already tick off, just to give me a boost. We plan longer term things, too, so that we always have things to look forward to, later in the week, the month, the year. We also share a Google calendar so we can each see what activities and appointments are coming up. Planning helps me to feel less overwhelmed and also means we can look back and see where we have come from. See the Planning Ahead section of the website for more ideas.
  

There's nothing like and ejector chair!

• Equipment - As well as the NHS equipment that makes day-to-day living easier for Euan, we also purchase quite a few things ourselves - non-slip trays that mean dishes don't slip onto the floor; chair raisers that make it easier for Euan to stand up; suction grab rails that work in the shower or on the car windows; weighted cutlery that's easier to handle; plates with a special lip so food doesn't fall off - all things aimed at making life better for Euan, but often they make life better for me, too. A case in point is the need now for more help to get Euan out of bed and up from a chair as the day wears on - it's a struggle for him and it's a struggle for me because I have arthritis in my hands and wrists and hips. So, as I write, we are awaiting the arrival of an adjustable dual bed and what I call and 'ejector chair' - each with scope for a lot of fun and mischief, I suspect, as well as the obvious benefits of manoeuvrability! You'll find links to equipment providers on the Useful Links page.
  

• Trying to look after my own wellbeing....read on...
  

Things that are helping my wellbeing

Remembering to take care of myself and giving myself permission to be off duty are real triumphs

I've created a whole page about self-care on the website, where you will find lots of ideas to help you take good care of yourself. These are some that I am currently finding helpful:

Mmmmm - hot bath and scented candles

• Hot baths by candlelight with relaxing music - becoming quite addictive!

• Good TV 'Anne with an E' and 'The Queen's Gambit' on Netflix are recent favourites.

• Podcasts Uplifting and thought-provoking podcasts like 'Live better, feel more' by Dr Rangan Chatterjee and 'Unlocking us' by Brené Brown

• Time out - putting it in the diary and looking forward to it (a virtual coffee with a girlfriend or a time to read my Outdoor Swimmer magazine).

• Sleep - a nap in the afternoon is allowed! I nap at the same time as Euan if I can.

• Exercise - stretches, a brisk walk, it doesn't have to be a time-consuming, lycra-clad hot and sweaty professional workout. Every little bit will help with mood as well as physical health.

• Gratitude - finding things at the end of each day to be glad about - and doing this together, too.

• Going with the flow...

...More about flow

Flow is that wonderful sense of losing yourself in a task or an experience. You might remember as a child getting lost in a book or in a hobby. You can still have that feeling as an adult - indeed I would say you need it. For me, writing this blog lets me enter that flow state and recharges my batteries.

How are things for you?

What gives you that sense of flow? And I'd love to know what tricks you've learned along the way, what helps you fulfil your caring role and what helps you take care of yourself. Do please comment below or get in touch.