The loneliness of the long-distance carer

As a full-time carer, I am in this for the long haul, but, just like the long-distance runner, staying the course can prove very lonely and very draining at times. How do I deal with that? What keeps me going?

It is very easy to feel - and become - isolated when you are a full-time carer. Even though we are together each day and I am busy working hard to deliver the care that is needed, I can still feel alone within that busy togetherness, and can lose my sense of self. This is where self-care becomes vital. I must keep my batteries charged up - it's not a matter of being selfish, it's completely practical, completely essential. A hot bath with candles and a podcast is the current favourite!

A quiet moment to start the day

How do you stay the course?

• I recharge my batteries in part by writing this blog. Usually I do it when Euan is asleep, and my clever Garmin watch shows the benefit - my 'body battery' graph actually goes up - normally it hovers at around 5%, but when I write, it can creep all the way up to 20%. Nothing else that I do has this effect. Welcome to my therapy! And, by reading this, you help me to feel connected and not so alone. Also, phone calls with the friends who are willing to listen and accept and let me be where I am are wonderful - their compassionate curiosity is a gift. Again, my clever watch shows a benefit - no body battery increase, but at least the stress graph shows a period of pale blue - complete rest - which doesn't always happen during the night, despite being in bed and 'asleep'!! And time alone, hard to engineer, makes a huge difference - again, my watch shows the benefit.

• Seizing the moment to do something impromptu is really important. Last week we were dutifully walking on the beach when we became entranced by the sound of the waves, and stopped to listen. I videoed the moment so we could go back to it and enjoy it over again in the future. The look on Euan's face as I pan back to him at the end of the clip says it all.
  

• Gratitude - I was filming a second clip of wave-washing delight when I heard my name and looked up to see two swimming friends striding towards us with their dog. We all had a wonderfully uplifting impromptu socially distanced chat on the beach while Euan sat resting - thank you to Liz and Ray for not just noticing us but actually coming across to say hello. So cheering, the waves and the welcome, things to reflect on with gratitude, something that is known to help all of us feel more positive.

• Something to look forward to - we hatched a plan with Liz and Ray for a two-by-two (Noah's ark!) walk for another day. A small thing, but something lovely to look forward to and value and again be grateful for. Each lovely thing we can put in the diary is a blessing and helps us keep moving forward, stepping stone by stepping stone, and having things to look forward to helps lift our spirits even when the days are hard.

Stepping stone by stepping stone...

• Social contact, staying connected, really helps, and we have a regular round of Zooms and telephone calls with family and friends around the country and socially distanced walks on the beach with Ron & Mhairi that keep us topped up. We can't wait to get the chiminea cranked up again - come on Nicola, please let's have garden visits on the list!
  

• Cherishing the special moments is vital. Today is Valentine's Day, and quite unexpectedly I find we have both organised the same Valentine's treat for each other - a box of Renaldo's chocolati made by Silvio's wife Linda - how funny! I bet the shop was amused to take these separate seasonal orders, and the delivery driver must have been tickled to come twice in quick succession to our door! Euan is not great now with dates or websites or telephones or any of the paraphernalia of everyday comms and commerce, so imagine my surprise when a huge bunch of flowers arrived on Christmas Eve. To my shame, I didn't even begin to think they were from Euan, so imagine my shrieks of delight when I read the card! Moments to cherish indeed.

So many to choose from!

Hurrah for Renaldo's!

Sweethearts forever!

Moomintroll looks on...

• Making use of the people and resources that are out there to help is vital. In the last week or so we have had discussions and/or visits from a Parkinson's UK adviser, nurse, a social worker, an OT, a physio and a consultant, and each conversation has helped to solve a problem or worry that was weighing heavily and causing me extra concern - 'a problem shared' and all that. A week on, and I feel supported and hopeful and things have moved forward in ways that wouldn't have happened if I hadn't reached out and tried to struggle on alone.

A problem shared is a problem halved...

• My Carer's Support Plan is now underway, thanks to our newly acquired social worker, Lisa - I have been sent the framework and have begun to draft my thoughts and responses. In one section it asks what changes would improve my quality of life. My immediate response was to want to see Euan as active and independent as possible, enjoying his hobbies and making the most of this precious time. I feel I can't make that happen alone, and I would feel so much easier in my heart if I knew we were doing all we can for Euan. That is my first and biggest priority. And if we can carve our a bit of guaranteed 'Katie Time' too, that would be a perfect combo. Enter Euan's Independent Living Assessment and Self-Directed Support. When our OT visited last week to advise about a new accessible bathroom, she mentioned an independent living assessment that Euan could do, to allow us to work out what will help him to remain as independent as possible. The thought of this makes my heart sing - and roll on the social services assessment for Euan so we can access his Self-Directed Support and we can appoint an personal assistant to keep Euan going with his hobbies and activities.

• The local Carers' Academy has also been mentioned to me, so I am going to email Rachel McLeod, the organiser, and to find out more about the support and activities they can offer me.
  

• Creating space for myself is really important but being proactive about asking friends for help is not something I'm good at doing. If a friend can spend time with Euan that gives me a bit of precious alone time, and the trick is not to use it to wash a floor!! I need to be a bit more brazen about this, I think...
  

• Boxing clever with time - I've started doing my gym exercises while Euan is doing his Scottish ballet workshops so twice a week I am guaranteed some personal exercise time at my own pace in our little home gym (the workshop!) - with mobile phone and radio to hand just in case!! Having a nap while Euan is having a nap is a good idea, too - I haven't had a full night's sleep for several years, so tiredness is a constant companion.

Euan adores his Scottish Ballet sessions

• Feeling useful - volunteering with Ayr Rotary and Parkinson's UK Scotland and running Facebook pages and groups for Rotary and our Ayrshire Young Parkinson's Group gives me a wider sense of purpose and connection. Sometimes I'm not as 'on it' as I would like, but I am trying not to give myself a hard time about it and simply put up posts as and when I can. It all helps!
  

• Podcasts with purpose! My current restorative broadcast is an interview with Professor Laurie Santos about what makes us happy - and it's certainly not money. Relationships, connectedness, exercise, sense of purpose - these things are all far more important, and so I feel hopeful, as these are things I try to prioritise in the strange old life that I lead. https://drchatterjee.com/the-surprising-truth-about-happiness-with-professor-laurie-santos/

Please let me know...

So how do you stay the course, and cope with the challenges of longterm caring? Do try to take care of yourself and keep your own batteries charged as best you can. I'd love to hear what helps, and how we can help each other.