The Cost of Caring

I have mentioned before about how I gave up my full time job in order to be my daughter’s parent carer. It was a choice that at the time filled me with anguish, fear, and sadness. Though I was of course honoured and delighted to spend more time with her, it meant admitting that my plans to build a career and comfortable life for our family had been diminished. It meant accepting that financially I would never be able to better our situation, and that I was moving into a version of life I didn’t know people ever encountered.

11 years on and I still have similar feelings.

More recently what I have found is a feeling of resentment that we can’t implement clinic hours. People want and need access to you at all times. It isn’t like when we had landlines and either the person is there or not. I recently didn’t check my phone for 2 hours and had 12 missed calls. An ambulance had been called, a paediatrician, my parents, my partner… thankfully it was a misunderstanding and turned out to not be an emergency, but by this point my anxiety was heightened all night and I felt tremendous guilt for not being more readily available and ready to intercept their panic.

In this modern era of smartphone technology, more than ever it is expected that someone make themselves available to you 24/7 within moments. It can feel quite invasive. I have lost track of how many times I have been in the middle of something and received a call asking me quite demanding questions that require thought and research.

In addition to this, even if my daughter isn’t with me, due to her high level of medical needs, an emergency (or perceived emergency) can occur at any time. Understandably, anyone she is with needs to err on the side of caution at all times… but this often does lead to feelings of never being able to fully disconnect or switch off.

It fills me with a feeling of constant underlying apprehension and dread.

In most other “jobs”, people go in, work their hours, clock out. They go home and are (hopefully) able to switch off from whatever stresses and strains they faced during their days. That used to be me. Now obviously there are exceptions to this, but generally, in all previous employment, I have been able to enjoy a certain level of freedom from work stresses when away from that environment.

Stress levels in carers are generally very high. There is a high likelihood of a carer developing some sort of mental health condition as a result of their caregiving role. It is a fact. Being deeply emotionally connected to our ‘caree’, being unable to switch off when they are not there, and being trapped in a difficult employment situation can be demoralising and have a detrimental impact on you.

It isn’t all doom and gloom.

As the years have gone on, I have grown wiser and more resilient. I am able to put aside a certain degree of anxiety by knowing we have overcome so many huge challenges in the past. There is still a lingering sense of entitlement and resentment I feel that carers do not receive the credit they are due. Until you are directly in that situation you can never quite fully appreciate what is involved.

During Amy’s most recent hospice stay I used much of this time to order and organise medical stock/equipment, chase up some hospital prescriptions, arrange logistics with her transport team, get her wheelchair accessible van booked in for some work, and so many other things.

The admin surrounding her, and the obstacles presented by various services are what wear me down.

Not being able to change a supplies request without dietician permission, making that 4th phone call chasing an essential medication (prophylactic kidney treatment and carnitine!), not being able to book the van’s work in online because the dealership website isn’t designed for motability customers. The list goes on.

There is a physical workload (which takes primary focus) and then there is an emotional workload. You don’t always get the opportunity to deal with the latter. The effect of this for me is feelings of overwhelm, sensory overload, teeth grinding, insomnia, disconnect/dissociation, amongst many other things.

I struggle to fit in an appointment with my counsellor and so much time passes that we don’t get to process so many things that need addressing.

Today I had a rare few hours.

I indulged immediately by enjoying a huge coffee and then washing my hair. I listened to podcasts and I put so much washing away! It was then that Amy’s immunology report came in. I wasn’t expecting it and was immediately drawn in. She is needing some prophylactic kidney treatment as well as some supplements due to her ketogenic diet blood test results coming up with a few concerning results. She has been so poorly over summer that we thought it best to check her antibodies (another project I came up with when talking with a friend). It turns out she needs a booster vaccine.

I am thrilled now that I pushed for this blood work as it will help us optimise things to give her the absolute best chance of a hospital free winter. But it serves as further evidence that we are always vigilant. Leaving no stone unturned in ensuring our children’s health and well being is optimised. I cannot bear the feeling of thinking I haven’t done enough, or that I could have prevented x, y or z happening. As the main expert in our child and their condition, it can be a lot of pressure to put on yourself daily and I still find myself, late at night, reading medical journals and studies.

Even in the chaos, I remind myself that every ounce of energy is an act of love.

I am still learning about myself as we go through our journey as a family. My empathy levels operate at an all time high at all times and I hope that anyone reading this in a similar position knows what a fantastic job they are doing. For anyone reading not in this position - thank you for educating yourself and reading my little ramble. I hope that you are able to relate in some way, and will make that effort (if you can) to check in on any unpaid carers or vulnerable persons you may know. Because for me life is all about connection, compassion and caring, at whatever cost.