No rest for the weary. And little help for the child who, as of today, has laid in his bed for 91 days.

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The boys and I moved eight days ago. It’s been nonstop since. This morning is the first time I’ve had a chance to sit down and put thoughts into words here. Pardon me while I cover a week’s worth of caring frustrations. Where do I start, is the question of the moment.

I could start with the initial experience trying to contact Brendan Bjorn’s PHN (public health nurse) for our new town. His pressure sore has become far worse, so yesterday I rang in hope of getting her to call out to the house. It was a Monday, after all, so what could go wrong? Well, she wasn’t in yesterday…as the other PHN notified me. I asked if she herself could come out instead, as I described the sore and my worries. No, can’t do, as she’s not the PHN that’s been assigned to him. But…and I went on to describe it again, adding that I don’t even have any spare dressings at this point. Well, I won’t be on that side of town, I heard. *Note: Dundalk is no metropolis* But…and I went on to describe it again, and how the current dressing has now been soiled on and must be changed. She would try, I heard. But…and I went on again to say even if she could just put them through the letter slot. She would try, I again heard.

Yes, they did get delivered, thankfully.

The dressings were delivered with a push through the letter slot. Not a knock on the door to introduce herself or, what would have been even better, 3 minutes to just examine the pressure sore of my precious angel of a son who now lays in his bed for 91 days being driven up here for our move and him to and from the occasional respite – drives which have undoubtedly made the sore worse each time.

NINETY ONE DAYS BEDRIDDEN.
IS ANYONE LISTENING?

I could also go on about how I need to now fill out a new application for his LTI card (long term illness card) because we moved from Kildare to Louth. New form, another doctor’s signature to try and obtain, and then the wait for the card. This card is what covers all of his life-saving medications and special PEG formula. The kind pharmacist down the road has received a 1 month approval to fill Brendan’s scripts until the new card comes in, so I cannot drop the ball and delay this process.

I could also go on about how just around the corner from our new rental home, there was a bag of drug paraphernalia on the footpath to my younger son’s primary school. A path that dozens of children walk on each school day. Bent spoon, remains of a needle, tucked into a bag laying in plain sight in the middle of the footpath. That frightens and worries me. I think it should worry us all, to be honest.

I could also go on about how 500K of additional funding for Carer based programs was announced yesterday, but how it actually won’t impact many of us at all. The fact remains that Carers like me will be cut off of the only financial support 12 weeks after – as it was so calmly worded in this document – our carer role has finished.

The document contains the following quote: “The Government recognises that caring can have a significant impact on the physical and mental health of the carer Do you, Government, truly recognise the significant impact that caring has had on me (and many of us carers) physically and mentally? Do you know that I know have degenerative disc disease in my lower back and am in chronic pain? , as well as their social life and personal finances. Do you, Government, truly recognise the significant impact that caring has had on my (and many of us carers) social life and personal finances? Do you know that I no longer have a social life to speak of? Do you know that I have no personal finances to depend upon? I have no pension, no savings, no ability for a holiday to recharge my depleted self or to buy many needed items for my family, especially as a lone-parent carer?  Following the death of a loved one, carers may also feel isolated Do you, Government, truly understand that I (and many of us carers) already feel isolated, so following the death of our loved one we may be left feeling even more isolated in a world that has been passing us by while we were at home for years on end caring? and can face distinct challenges in making the transition from being a carer to having a reduced or no caring role Do you, Government, truly understand that I (and many of us carers) will be left with long-sacrificed careers which we cannot re-enter due to our age, our now poor health, our no longer being ‘marketable’ and ‘current’?, while also dealing with the feelings of grief and loss Do you, Government, truly understand that I (and many of us carers) should already have access to full palliative supports for our entire family, including professional mental health counseling if requested?. For the carer, there are challenges in changing routines and activities and new challenges emerge after their caring role finishes And do you, Government, realise how condescendingly trite and even hurtful that last sentence is? No, I don’t think you do, because you don’t actually comprehend the life of a full time carer

It’s now 12 noon and still no return call from the PHN. Brendan Bjorn still waits. I still wait. And in our wait, I continue to voice what is wrong with the system – despite my fear of reprisal – because the only way we carers will see change for our disabled family members and ourselves is to speak up and passionately advocate for necessary reforms.

No, there is no rest for the weary…and little help for the child who, as of today, has laid in his bed for 91 days.

 

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