15 April 2022.

105 days since I last had a day/night off work.

84 days until my next day/night off work.

Work = nursing level, Palliative Care, profound disability & medically complex care, 24/7, alone, which has kept “the patient” out of hospital.

It shouldn’t matter that “the patient” is my son, but it does. Or at least it does to disability services and the healthcare system. But because he’s my son, I somehow am transformed from a mere human into a superhuman who can provide the same level of care work that 2 or 3 professionally trained nurses, doctors, and healthcare assistants, all working together, provide – all while rotating working shifts around the clock so they can rest, not to mention have a life outside of work. (But I’m not supposed to mention that as a carer, am I?)

I am not superhuman.

My son, Brendan Bjorn, has been very unwell the past couple of weeks. His gut refused his PEG formula feeds…again…and he went 8 days with only electrolyte fluids via PEG. It’s been hell, for him and for me, if I’m to be quite honest. I am exhausted.

The GP has come and gone.
The Palliative Care Doctor and Nurse have come and gone.

I remain.

I remain to continue on trying to work “the plan” to slowly reintroduce formula feeds via PEG to my son’s very fragile body, while also trying to keep him hydrated with electrolyte fluids via PEG when he isn’t on the formula feeds.

It’s been asked if I have been offered any help. The answer: a few months ago, I was offered 12 hours of in-home nursing help per week. I refused for a number of reasons, one of which is the high covid rate in the community. The other is that I need to be able to relax in my own home, as does my other son who has a neurodiversity, but it seems to be a fact no one in any service seems to care about. Neither of us can relax well with 2 strangers in our home (2 staff are required at one time to care for my son, a nurse and a healthcare assistant), all the noises of caring work happening and no way to escape it other than leave our own home, no matter that we may not want to leave.

Stop trying to pound a square peg into a round hole.

I’ve asked…pleaded…repeatedly for residential respite. There is none suitable in County Wexford. There are some within an hour’s drive, but those places have refused on grounds that either they are outside of our county, our CHO, or they don’t have any spaces available. Anything further out is too far a drive for Brendan Bjorn: he is too fragile. So, Brendan Bjorn’s last residential respite will be in July at LauraLynn Children’s Hospice. As he turns 18 later this year, he loses their service then. It will be his last stay there.

I’m tired of so many things.

I’m tired of fighting for the person-centred, individualised, help that my son and my family as a whole need. What works for one family does NOT work for all families.

I’m tired of having to explain to people how my anxiety and my other son’s neurodiversity concerns preclude us from finding in-home nursing as a viable option. It would only add more stress for us both. Why isn’t that accepted as the truth that it is? And anyway, 12 hours out of 168 hours of work (on my part) is not worth that added stress.

I’m tired of being angry, hopeless, exhausted, lonely, shaking, in pain, worried, filled with anxiety, overeating and overweight just trying to soothe myself from all that I’m so tired about in the first place.

I’m tired of not having the safety net of family and close friends that I know, without a shadow of a doubt, would always be there if I fall.

I’m tired of not wanting the life I’ve been forced to lead for so many years now.

I want a life that I want to lead.

I am not superhuman.