“Just because something can be done, doesn’t mean it should be done or that it’s the right thing to do.”

I heard these wise words earlier this week from one of Brendan Bjorn’s new adult consultants. These words speak to our current truth; our current path on his journey which is also our collective journey considering the last 18 years of my life have been centred around, dictated by and dedicated to his care needs. His part of this journey is winding down. It’s something I always knew would happen. In fact, doctors had long thought he wouldn’t have made it this far.

But just because you know something would happen, it doesn’t necessarily make it easier to accept. This is hard. Very hard.

He’s growing tired. When he comes home from school, he now falls asleep within an hour of arriving home and will sleep for hours. He wakes only for about an hour before he’s back asleep for the night.

His pressure sores have returned, requiring more time side-lying in his bed or at school.

His body isn’t absorbing his formula feeds as it should and he’s now fed at such a slow rate he likely isn’t getting what he requires.

Somedays, one foot or hand will be roasting hot and the other one is ice cold.

He needs vented manually from his PEG (G-button) regularly throughout the day now, despite having a Ferrell Valve Bag in place. Usually venting is enough to relieve the pressure of air built up, but when it isn’t, he gags and vomits, sometimes choking. Keeping his airway clear has never been more important, or more difficult.

He will now go to school just 3 days per week, with a day of rest between.
There will be no more invasive procedures.
No rescue resuscitations.
Life now is about comfort and happiness and laughter and showering him with love.

This is palliative care.

I have been struggling with my own health and was just diagnosed with adult-onset asthma. That’s on top of having an auto-immune disease and other health issues. I’ve been open publicly about depression and anxiety in hopes of raising awareness for carers like me and the challenges we face. So on that note, I’ll say now how my anxiety has increased in recent months. I catch myself grinding my teeth throughout the day. My right temporomandibular joint actually makes a clicking sound now when I chew. I frequently find I’m trembling, hands shaking. Emotionally, I go from feeling numb to deeply saddened, depending on the day. I’ve been on an anti-depressant/anxiety medication for a number of years. I think life as it is recently happens to be overriding that medication.

I’ve been fighting since last year for residential respite for Brendan Bjorn, especially as he transitions from child to adult services upon turning 18 later this year…assuming he does, of course. There are none available that are suitable for his highly complex level of care needs. Well, scratch that. There ARE some available, they just won’t accept him because of being in a different county (even less than an hour away) or a different CHO area (Community Health Organisation area).

I have to ask: How is this even remotely acceptable?

I’ve been offered 12 hours of in-home nursing per week. It was again put to me yesterday during an online meeting with his Multi-Disciplinary disability team.

This is where I circle back to anxiety. What I need is not for 2 nurses to come into my home once or twice a week (however that 12 hours a week would be divided or taken in one shift), especially during a pandemic. What I need is for Brendan Bjorn to have respite out of the home, in a residential setting. My anxiety would only increase having 2 other people in the home (he requires a nurse and a health care assistant together to care for him) yet no matter how many times I tell the team this is a big part of why (there are other reasons, too) that I am refusing the (mere) 12 hours per week, they continue to push me to take it.

Why don’t they listen?

Not only am I a (former) mental health professional, so I understand anxiety and its triggers, I am also very self-aware. Considering the repeated failings within the HSE in Ireland regarding mental health care and the understanding of it, I’m frankly not surprised at the response – or lack thereof – which I am receiving.

I titled this blog piece as Finding the right thing to do. It applies not just to Brendan Bjorn’s care, but also to my self-care. I know what kind of respite will best help support my needs as his sole carer: a carer who alone is doing the complex nursing-level care work 24/7 which in any other setting requires two people to perform. I also know what kind of respite will actually not help.

As I’ve taken the time to ponder the quote from the consultant, I find it applies to me, too. If only others involved in Brendan Bjorn’s care, and thus having the ability to help support my little family as we go through this palliative stage, could also see this point of truth:

“Just because something can be done, doesn’t mean it should be done or that it’s the right thing to do.”