January always feels like the longest month and this year has been no exception. Freya has been doing well, whizzing around the flat with her little trolley and being full of mischief (she’s recently discovered the joys of dropping things in the toilet bowl. Must be a genetically programmed milestone for toddlers, and yet another task that makes parents of toddlers immune to the grossness of our daily lives). Freya’s jaw operation got cancelled as there was no room at the inn, but after initial dissapointment I have been trying to rationalise it being a good thing, January being smack in the middle of snot season and hospitals being full of sick people. Winter 16/17 has kicked off a lot better for us bugwise than the last one and that is how we would like to keep it, thank you very much.
Despite a relatively good start to the year I have been feeling restless and tired. I’ve been feeling a bit stir crazy also as we had a week of self imposed isolation before Freya’s op day to avoid cancellation due to a bug.
Whereas the speed of our lives is slow it does not lack stress or anxiety. I hate the fact that with a sick kid you never know when you next end up to intensive care. When you get hospitalised you never know if it’s for for 5 days or 5 months. And then there are even the scarier thoughts – when do bugs turn to definate step backs? And will our luck, at some point, run out?
It’s physically tiring looking after a medically complex kiddo. It’s emotionally tiring carrying around all these unresolved anxieties and emotions. It’s clear – my January blues has a big dose of care giver fatigue mixed in it. Here’s some things that help me recharge.
1. Eating well
Good advice for anyone, right? Even more so if you are a caregiver. With a trachy vented child there is very little downtime for us parents- we need to keep an eye on Freya at all times in case her tracheostomy gets blocked, pops out or she gets herself in a pickle (she can’t make any noises so can’t cry or shout for help). We get help, but being a trachy parent is a 24 / 7 job.
Whereas keeping Freya bugfree is our absolute priority, us parents are a good second. Our daily routine is challenging enough without physically feeling crap. So this time if the year I try to get more fruit and veg in. Plenty of garlic, ginger, chilli and tumeric. Home made black elderberry syrup. And , of course, lemon with everything.
There are shortterm considerations, but also some long term ones. When Freya is ill and/or during long hospitalisations we are at the eye of the storm. We try to get through each day as well as we can and eating becomes much more of a “grab-what-you-can-when-you-can” thing. After hours and days by the bedside it can also become a comfort thing – an opportunity to have a break, something comforting in a time of high pitched continuous stress. Now at home we have better opportunity to eat well and try to drop off extra pounds gained over Christmas and months in hospital (I blame you Lagoon chips!). After all, one of the biggest anxieties of any parent of a chronically ill child is what would happen to them if we were not well enough to look after them. Minimising risk factors for developing chronic conditions ourselves takes a renewed importance when you have someone so dependant on you.
We are lucky to have 7 nights of overnight care for Freya. That means, in theory, we get regular sleep, although with cancellations anxieties about leaving your child’s life in someone else’s hands affect both quantity and quality of that sleep.
It is a given that having kids and being sleep deprived go hand in hand. Arguably having someone looking after your kid overnight can sound heavenly to someone with a medically normal kid with sleeping issues. And for us it is a lifesaver. There is no way we could function if we didn’t get help. But with services being cut there are many families who don’t get the same help. We have certainly had to fight for ours (a topic I have touched upon in my previous blog entries).
Lack of sleep affects me immediately in a very negative way. I feel nauseous, I feel down. I struggle to deal with the curveballs trachy life serves us on regular basis. To avoid feeling completely exhausted I try to concentrate on both quantity – getting extra sleep when I can (I love a good nap!) – and – quality -improving the quality of the sleep I get by cutting down on caffeine in the evenings, doing relaxation exercises at bedtime and simply trying not to stay up too late.
3. Give yourself a break – and asking for help when you need it
Having a chronically ill child completely takes over your life. It is clear who is the boss in our household – everything we do is carefully planned around Freya and we know that any plans we do can be changed at last minute. That is just how it is for now.
It has taken me a long time to be able to take a break from my role as a caregiver. In the beginning Freya literally lived in the hospital and I would have a routine of 10 to 10 to be with her. Now at home we don’t really get any help during daytime, so one of us needs to be with her at all times. And for a long time I had a hard time taking time off.
Don’t get me wrong, I love my baby girl but it is important to have a break. Go out, enjoy lunch with friends. Have a spa day. Go to a yoga class. See a film. Eat steak and drink red wine.
As important as being able to detach yourself is to be able to recognise when you feel you are edging towards the point when you REALLY need a break, and then, being able to ask for help. Asking for help can be the hardest part – the key of making it easier is to surround yourself with people who are not only keen to help, but are keen to make time for you when you need it, not just when they have a free evening after work or they happen to have a couple hours to kill. Don’t get me wrong – those kinds of visit are great, but what you really need is someone who will come running when you need them. After all, the crisis and catastrophes in our lives do not pencil themselves in politely in advance.
Under this heading I cannot stress enough the importance of getting a suitable care package in place. Do your research, speak to other parents of medically complex kids, contact charities with helplines (www.cafamily.org is one specialising in children). Make sure you will get help from both social services and education if you are due some. And it may well be that I sound paranoid and jaded, but if someone tells you that you are not entitled to something check whether they are actually telling the truth. As sad and deplorable it is, there is a real culture of misinformation and lies when it comes to local authorities properly funding care of chronically ill children. Getting the right package in place can be difference between surviving and living. With the right kind of support families with special needs children can thrive – both the kids and the parents!
4. Incorporate more things you enjoy in your day-to-day life
It is hard to even start to describe how your life changes when you become a full time caregiver to someone. Sometimes weeks go by until I get an opportunity to leave the house without Freya. If she is ill, it means anything and everything else gets dropped when we work our hardest to keep her out of hospital. I still have not have managed to leave London since she was born. Going to the movies, going on holidays, visiting friends or family….Even having an anniversary dinner – all these “normal” activities become SO difficult – even impossible.
I don’t like to dwell on what I miss from my past life – I find dwelling on things generally counterproductive – so I’ve tried to introduce smaller things in my life that I enjoy. Doing 20 minute yoga exercises from youtube. Listening to books on audible. Buying art stuff from the pound shop and having a go at painting. Cooking, a lot, and trying out new dishes and cuisines. Discovering new series on Netflix. Reading. Writing. You know the kind of stuff I used to enjoy before I worked all the time.
As January draws to a close I hope my January caregiver fatigue will diminish too. Got some good tips to unwind? Let me know! Suffering from carergiver fatigue yourself? Try to find 10 minutes today for just yourself. Give yourself praise. Check out that the bars you have set for yourself are not too high; looking after someone chronically and seriously ill is hard and relentless – make sure you aren’t being so on yourself.