The Carers Dilemma
by Phil Emberson
The experience of caring for someone with complex needs is varied and different for everyone. In my case, until you’ve been living in and had experience of that world, you have absolutely no concept of what it’s like.
Caring for my son
My son has a condition called CHARGE syndrome plus a condition called Craniosynostosis. The impact of this on his physiology has left him needing a tracheostomy for severe obstructive sleep apnoea and to being fed via a tube. To maintain a tracheostomy and tube feeding requires specialised training. Plus having a tracheostomy means you need someone that is trained to be with the individual at ALL times.
One night per week we have support from a carer, who comes to our home and will be awake throughout the night. The rest of the time it is me. I sleep next to my son’s bed. For years that was on a sofa bed in our lounge to avoid disturbing the rest of the family when using machines. Now our son has his own downstairs bedroom and I have a bed in there in case he needs attention during the night.
In addition to the maintenance of his tracheostomy, my son is also fed through a feeding tube into his stomach overnight. As he suffers from reflux, he can’t take the volume of feed he needs to stay healthy during the day and has 40% of his daily feed overnight whilst asleep. Interruptions during the night can be suctioning out secretions from his tracheostomy to prevent it from being blocked; problems with his feed machine; and switching off his feed machine once his feed finishes around 05:15.
Time for self-care?
In the late evening my son needs an antibiotic nebuliser to prevent him getting respiratory infections due to his tracheostomy. After this has been administered, and once his feed is set up for the night around 22:45, there is the washing up and sterilisation of his medical equipment to do. Once all that is complete, I get a bit of time, if I feel able, to do some extra work or do some admin as there is a lot of additional administration that comes with having someone with complex needs.
With the interrupted sleep there comes fatigue. The fact my son needs continual monitoring all day, every day means there is no break and no respite. As stupid as it sounds, fitting a shower into the day can seem like an achievement at times. This means I pay little attention to myself. Whilst never being a fitness fanatic, that side of things has totally gone out of the window. You seek solace in comfort food.
During the first 3 years after my son was born, virtually all the holiday I took from work were used for his hospital appointments or to stay with him when he had operations.
Being a carer also impacts your family and friends. My son is a twin. Whilst his twin sister is very healthy, having twins is obviously quite a handful, even if they’re both healthy. The in-laws, who are retired, were amazing offering weekday assistance to my wife through the early years, which allowed me to continue working. They also kept us fed and sane.
Then there’s the most important relationship here. The wife and I have enjoyed one evening out together on our own in five years. That was about 21 months ago when we were just about getting onto an even keel, and then a global pandemic came along and cut off all familial support due to shielding.
I’ve not been a great husband in terms of focusing on my wife. Whilst everything I do is focused on helping make her life easier (doing the hospital visits/stays; late nights; admin etc), I should be attentive in an obviously loving way. The majority of my energy has been focused on the kids and work and I struggle with having many things to concentrate on.
Then there’s our daughter. She has to deal with her brother being the centre of “attention” a lot of the time. She’s been amazing throughout and has been very accepting of her brother being a focus of attention. We do try to reward her when we can.
The carer’s dilemma; could I do more?
That’s always the question nagging away at you. Should I be a better husband? Yes. Are we being a burden on the in-laws? Yes. Are we neglecting friends and family? Yes. Are you pouring as much energy into your job as you want to? No. Do you need to take time out to focus on you? Yes.
Fortunately, being so busy all of the time leaves very little time to reflect on this too often, so it doesn’t completely eat away at you. There are many things I’d do differently with hindsight. However, it is not all as bleak as it sounds.
As my son’s health has improved, we now get to enjoy lots more activities as a family and take holidays. My son has also recently started school. At present one of us has to be with him throughout the school day while the school staff are trained in his care. But there will soon be a time when my wife gets at least a few hours respite each day.
We wouldn’t change a thing. The twins are amazing, we’re very proud of the way they’ve turned out so far.