Caring for the Carer.
If you had asked me years ago that I would find myself in the position of having to care full time for my husband who was diagnosed with cancer, I wouldn’t even thought it possible. First of all, no one sits there and thinks about getting cancer or looking after someone who has cancer, well no one should at the very least. Second of all, I would have laughed it off and probably said something like “pfff, no by then my books would have started selling that we would both have the time to pursue the creative projects we have both wanted to work on separately and together.”
Well knowing myself full well, it wouldn’t have been said that eloquent or child friendly.
But you know the old saying, “make a plan and the Universe will laugh at you.” To be honest, at this point in all our lives none of us could have predicted living through a global pandemic so there you go. We shouldn’t be surprised by much anymore.
When you are caring for someone else full time, a few things can happen. The first is your boundaries can become blurred, are you a carer or still their husband, wife, spouse, brother, sister, etc. The truth is, you’re both and being aware of those lines is so important, for your own mental health but also for that of whomever you are looking after. Loss of independence is a common thread you will share the person you are looking after and giving them as much independence (as long as it is truly within their medical diagnosis to do the tasks, please always seek medical advice on what they are able to do and not do) is vital for their mental health. As for yourself, your independence is gone because you are looking after someone else AS WELL AS yourself AND children, pets, the house, you name it.
I can guarantee one thing, you will put yourself LAST and I was reminded by a caseworker this week that “You always put your oxygen mask on first before you put it on others.” As a Carer, our wellbeing is essential. It is mandatory. You CANNOT look after another person if you do not look after yourself.
As a Carer, I have also learned that time is both your friend and enemy. There is not enough of it and when there is, you are usually too tired to do anything with. This happens a lot in the beginning before you start to figure out your own structure.
As a writer, I approach it with the mindset, that if I have 10 minutes to write, use it because I don’t know when that 10 minutes will come again. Also, we tend to think in grand terms of time when in reality, time is made up of smaller and smaller increments that come together to make up a day.
So, I began realising that it was possible to look after myself when I had 5 minutes here, or 10...maybe even 15 minutes. I kept to these smaller increments because when I first became a Carer, I was given the advice, “when your husband rests, so should you.” So if David was having a nap, rather than busy myself with housework or things would tire me out more, I started to use that time to rest whether that was have a cat nap or watch something or use at least some of that time to keep my mind engaged.
I compiled a list of things that can range from 5 minutes to 15 minutes. Honestly, it is your decision but I hope it helps others as it has helped me.
1. Free Writing: As a writer, I always get ideas for what I want to write at the most inconvenient time and it’s frustrating when you don’t have the time to develop them. I began free writing for 5 minutes so I could literally dump my ideas onto the page where they would be safe to develop them later. It’s been great for that but also clearing my head. If I get other ideas later on, I either type a message on my phone or record a voice message for myself.
2. Journaling: You need to get things out of your head because you will have such little space in there that it will become crowded very quickly. If you enjoy writing by hand this is the best way because you can sit and write at whim. But you might enjoy recording it on video or audio. There is no right way but also producing a record of your emotions and frustrations. They will also help you identify reoccurring stresses and triggers.
3. Videos/ Blogs/ Social Media: You won’t have the time to scroll through your social media as much as you used to, this is actually not a bad thing but we often forget how far and wide our loved ones are these days and you will want to throw your phone across the room when it starts to beep incessantly because everyone is messaging you (at least at first). Giving updates on social media is actually a very positive and great way to reach out to all your loved ones at once. Forget that it is a public forum and speak to them directly; this will help you get over any insecurity about public speaking. If you prefer to blog, go to it. I have never been able to write a blog in 15 mins but there are a lot of amazing people out there who probably can, you may be one of them. It serves the same purpose.
4. Audio messages: I can’t even describe how much I love receiving and sending audio messages to friends and family. Being a carer can feel so lonely at times and hearing a comforting voice or having just that 30 seconds to send a message to someone where they can hear you is the closest you will get to another human connection when your loved ones are far away or unable to visit. Every messenger has this function now. It’s brilliant.
5. Read: I know for many this is not as easy as it sounds because your mind is too busy or full but find something fun or silly to start with or reread something you loved. It will help break that block and if you are writer, you know how important reading is. If you just need to escape for a little bit, books were there before Netflix and will be there after Netflix is long gone.
6. Learn: This sounds ridiculous but hear me out. There are apps like Babel and Duolingo where you can set times for lessons. You can learn a new language or refresh one for as little as 5 minutes a day. There are other educational apps as well as free online at your own pace courses you can do. You set the pace and it takes as long as it takes. Just make sure it is something you will enjoy, this may not be the time to retrain but it could be the time to learn for learning sake and that will help your mental state. Your local library probably has tons of free courses online and a quick Google search will open a whole new world for you.
7. Exercise: I own a treadmill so I have that but whilst my husband has been in hospital I have begun dabbling with Qigong and this practice is similar to Tai Chi. It can be done in as little as 8-10 minutes. It is a fabulous way to centre yourself. There are loads of YouTube videos out there. You can practice any chance you get. Also there is Yoga and other things like Pilates, you name it. Best of all, you will most certainly find a video showing you how to do it for free on YouTube.
8 .Meditation: Being in the present is an essential skill for a Carer. Meditation doesn’t have to be 3 days in a monastery. You can learn simple techniques like mindfulness or more advanced forms of meditation if you wish, whatever you choose just make sure you set your pace and don’t be discouraged if it doesn’t work the first few times, it probably won’t because it is difficult to quiet the brain. When you learn to do it though, the peace you will feel will help you with your day as a Carer.
9. Ask for Help: The strongest person in the room is the person who asks for help. You weren’t trained for this role. You are learning to be a carer from a place of love. You will make mistakes. Reach out to friends, family and support networks whether it is other carers, or charities, or your GP. If you ask people for help it will also avoid feeling like you are losing control of the situation because your loved ones will think they are helping by doing a lot for you but when someone takes over, it can lead to feelings of insecurity and inadequacies. Even though they are coming from a place of love, it can also lead to resentment and this is the road every carer wants to avoid walking down. Ask for specific help and draw up boundaries.
10. Rest: I cannot stress this enough. You have a finite amount of energy a day. If you don’t look after your body and let it rest properly, you will go beyond sleep debt, there is no paying that back. You enter deficit and this is where mistakes are made that have consequences. If you do nothing else but rest for 5, 10, 15 minutes at a time, you are doing the best thing for yourself.
Thank you for taking the time to write this. Several points had me nodding my head in recognition of feelings I have had as a carer. The role certainly comes with a steep learning curve and is helped by persons such as yourself, making suggestions as how one might deal with the variety of situations that inevitably arise.
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John Lugo-Trebble considers this more of a space to engage personal reflections and memories with connections to music and film.