Yesterday, 16 October 2019, there was a protest outside of Leinster House here in Ireland. The protest was organised by Family Carers Ireland to advocate for the much needed reforms in support of full time family carers such as myself. The hashtag #CAGED aptly describes the world in which many of us find ourselves. Ironically, the majority of carers weren’t able to attend the protest because – you guessed it – they were busy caring with no one to relieve them of their 24/7 duties.
What does it mean to be CAGED?
My son, Brendan Bjorn, was unable to attend school for the past 2 years due to health reasons and/or having no wheelchair for transport. As a lone parent, full time carer, with no family supports, this left me – and his younger brother – CAGED for those 2 years.
I care for Brendan Bjorn literally 24/7. While he does now attend school again, he goes 3 days per week, for a total of 16.5 hours. That means I am caring for him…hands on, complex medical care…151.5 hours per week. It’s important to note that the hours he’s in school, I must remain within close proximity to the school in case he gets ill and I need to pick him up. This actually happened 2 weeks ago where I was 40 minutes away. I’ve since been told I need to be more readily available. This is CAGED.
When Brendan Bjorn isn’t at school, the most he can spend in his wheelchair is approximately 3 hours do to pressure sore risks. Longer day trips out are not possible. Even a film and lunch would be pushing the time limit for him. Still, I try to get out…despite the fact I have no overhead hoist to safely lift his 5ft long, over 40kg body from bed to wheelchair. Instead, I’m resigned to manually lift him – a danger to both of us. This can’t continue to happen and there are days I simply decide it’s not worth the risk. This is being CAGED.
We get 15 nights respite per year thanks to the wonderful LauraLynn Children’s Hospice. The demand is so great, that this is the most nights they can provide for any family. We all get 15 nights per year. There are families who don’t even get that, it should be noted. Families of profoundly disabled children, of all ages including adults, are CAGED in their own home, with little to no break away.
What does it feel like to be CAGED?
I can only speak for myself on what it feels like. For me, it feels like I am drowning. Suffocating. And in some respects, dying. My social life is totally non-existent outside of the often toxic social media realm. My professional career is so long on ice that I’m beyond redundant. I’m depressed. I have anxiety. I’m lonely. I’m isolated spending so many hours, day, months, and now years, caged inside the home caring 24/7. The only time my phone rings is for medical related business. I honestly can’t remember the last time I (we) were asked over to someone’s house for dinner. I’m exhausted…physically, mentally, spiritually. I find myself feeling done. Just done. I’m ready to not be a carer anymore. I wonder how long I can go on like this, day in, day out. This is what if feels like to be CAGED as a carer.
Understanding is needed, not pity.
I’ve shared my journey, and indeed today’s post here, not for pity. That is the absolute last thing I want! What I want is understanding, and with that understanding, I want to see change – REAL CHANGE in how carers are treated.
I want to see the medical community get behind the fight for change, knowing that it’s family carers on the front line of care for our vulnerable loved ones that help keep the medical system afloat. It’s no exaggeration to say that if we didn’t do the work we do, the medical system would collapse.
I want to see the politicians with the power to reform policies of support and the related budgets actually make those reforms – and make them before carers are unable to cope any more.
I want to see the public – local and nationally – get behind carers across Ireland with their support by raising their collective voice, contacting their local TDs, and taking to the streets in protest. If you aren’t a carer now, you will either be one some day or you will need care yourself. That is the way of life. This affects everyone.
Ultimately, I want to see all carers have the freedom to experience their own life, fulfilled, hope-filled and active, without the unnecessary confines of the invisible bars surrounding them because they are being CAGED as a carer.