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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The language of heartbreak

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Today I had one of the most powerful, heartbreaking, interactions with someone that I can recall. This someone was a total stranger to me, yet I somehow knew who he was the moment I stepped into the hotel lift. I asked him a question, and with a gentle smile and two words of very broken English, learned there was no language to be shared between us. We got off the lift, he went his way and the boys and I went our way, which was over toward the front desk to check out of the hotel.

As I turned to head out the main door, the young man was coming back inside. He smiled and nodded at me. With a bit of a tremble inside, I held out my mobile phone which showed the photo of another young man. He looked up at me, nodding again, and my hand went to my heart…”I am so sorry” I said to him. Our hands reached out for each other (I don’t know who extended their hand first) both of us, our eyes welling with tears, just held hands.

We just stood there in the hotel lobby as we continued to quietly hold each other’s hand, tears ever growing, and with no words able to be exchanged.

But words aren’t always needed in the language of heartbreak.

After a minute – or was it a few? I don’t know – our hands began to release from the other’s, with a gentle squeeze a time or two as they fell apart. There were tears that came in the understanding gaze between us, then the respectful bows of the head to one another, and with that, we began to move apart.

He took a few steps and turned back around…hands with palms close together at his chest, he bowed to me. And in absolute respect, solidarity and the aching empathy of heartbreak, I returned the bow.

With that, we parted ways. I loaded the boys into our van, sat on the driver’s seat, and sobbed. Uncontrollably sobbed. I don’t think I have ever felt so powerfully the emotion, the pain, radiating from a grieving person’s hand up through my own hand as I held it, and as our eyes connected in that unspoken language of heartbreak.

It shook me, hard.

I don’t know his name, although what came to me as I held his hand was the word “brother” so my heart tells me that this was, either biologically or emotionally, his link to the smiling young man whose photo I held out hesitantly to him on my mobile.

Heartbreak doesn’t need the same language to be understood when there is compassion, empathy, and genuine caring between people who have experienced grief. One touch, many tears, and the silent expression of love can bridge the absence of spoken language amongst those in pain.

My heart goes out to this young man in the hotel who travelled to our island country under the most horrific of circumstances – to bring home someone he clearly loved but who had been taken from him in an incomprehensible and terrible act of violence. I wish him, and his family, the healing peace that I think only time can bring. But I also want to thank him for sharing so much with me on a level that we don’t often get to experience with others with whom we cannot share via the spoken word. Whether he knows it or not, today he gave me this rare and special gift.

 

Rest in Peace, Yosuke Sasaki

 

 

#carersincrisis

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It’s only 5 days into 2018, and here I am writing about being in crisis. The hashtag about this on Twitter as of late is #carersincrisis and it says it all. But who is actually listening? More importantly, who amongst those listening will take any action to resolve the crisis?

I often write from a raw, unfiltered place, exposing my personal world at the risk of judgement and the subsequent ridicule or unsolicited advice to more devotedly follow Jesus or the comparisons of who has the worse lot in life. That’s not my reason for wearing my heart on my sleeve.  I do it for starters because that’s just who I am by nature, but I also do it on the off chance it will help others who walk a similar journey with me…that journey of caring for a child with a life-limiting illness. It is a journey unlike any you could fathom. Indeed, it is one you must actually be on to fully comprehend…and to have absolute compassion and empathy for those on it.

Last month, I knew I was near a breaking point. I was once again having panic attacks, had a breakout of shingles due to stress, and found myself crying far too much. I did what I knew I should do and I reached out for help from a respite provider’s psychologist. I was refused any additional respite nights because there were other families who were requesting the extra nights as well. Now I, of all people, can understand that fact. However, not providing emergency care for carers in crisis leaves those carers – like me – in a very vulnerable position. This is exactly why we have #carersincrisis.

And hear this:

When carers are in crisis, it cannot help but result in the loved ones they care for being put in a potentially less than optimal situation for the best care they require and deserve. (Read that line again)

Confession: Last night I discovered I had not reordered one of Brendan Bjorn’s seizure meds. As such, he only got a partial dose. This morning, his disability social worker is picking up the new bottle of medication from the pharmacy on her way out to see us. The amount of guilt I felt last night, and the resulting mental self-reprimanding I gave to myself, was noteworthy. I could list a dozen excuses about being stressed out, overworked, etc, etc, etc, but none of them are acceptable. I failed, full stop, and I am ashamed at my failure.

Today is day 73 of Brendan still being bedridden due to the terribly slowly healing pressure sore. 73 days and I am exhausted physically, mentally and in many ways, spiritually. My soul is tired and needs recharged in a way that only time away from caring can provide…but I can’t get it. I’ve had no in home respite nursing since July 2017 (I’m approved for only 10 hours per month, even so there is no staff to provide it). I do have 3 nights of respite coming up this month but it will be used moving my family to a different city, different county, and that, my dear reader, is more stressful than you can imagine when you have a highly medically complex disabled child’s care needs to transfer and re-establish! I won’t be recharging anything but my mobile phone. 

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Compassion at Christmastime…and beyond

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Compassion literally translates from Latin to mean “suffering with” or “co-suffering.”

It is just 3 days until Christmas and as I read the latest news on Twitter (where you can find me most days), my heart aches at all the pain and suffering, not only here in Ireland, but across the world. Some days, it is simply too much and I can’t bear to look. But some days, like today, I dare to look…and on these days I come away wondering what happened to compassion within society. I know I’ve written about this subject before, and I regretfully say I will probably be compelled to write about it again. Not until those with no voice are heard will I stop raising mine. (There, you are now all forewarned!)

Someone on Twitter this morning replied to me on a tweet and said “That is one of the reasons you are such a powerhouse of a woman and mum…” Wow! I have to say that comment had me in tears! I’m not sure I’ve received such a compliment in a very long time. And it got me thinking, am I really all that different than other people? If so, why am I? Or better yet, why aren’t more people fighting for what is right, just, and fair? Why aren’t more people speaking up for those who cannot?

Why don’t more people have compassion?

I don’t have the answers, only thoughts on it. Too many thoughts on it for this short blog. I’m reminded yet again of my 2x great grandfather, a self-made millionaire, who used his fortune to house the tens of thousands of homeless after the great Chicago fire and to then rebuild the city. He goes down in the books of history remembered as a man of tremendous character and great compassion. In remembering him, my pride is entwined with frustration over those people with that level of wealth who don’t step up and simply do the same today. It would be so easy to do. But they don’t because they are self-centred and lack compassion. Full stop. 

Christmas is in 3 days. My precious angel Brendan Bjorn today is on day 59 of being bedridden with a pressure sore. It is healing, thankfully, and I will plan to put him in his wheelchair for a short time on Christmas morning so he can gather with our little family by the tree and enjoy watching his brother Declan open the presents. And I will remember the kindness…the compassion…so many people have showed my family this year as they gave to us so we could have a safe, reliable wheelchair accessible van and who have recently sent gifts to the boys for Christmas.

These are the people that give me the best gift of all: The gift of hope; the gift of knowing compassion still lives in the heart of many. Thank you, all of you, for these most beautiful of presents possible. 

Happy Christmas and God Jul to all of you reading these words. May your lives, your heart, and the New Year be filled with much love and compassion for all those you meet.
Blessings to you all. 

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The numbers of caring today

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Today is December 13th, my birthday. Let’s just say I’m 39…again. Somedays I feel 25. Other days I feel 105. When it comes to numbers, the number attached to my age isn’t important today. There are, however, some numbers that are very important to me today so I’ll list them here for all to consider.

50: The number of days Brendan Bjorn has been bedridden due to his pressure sore opening back up for the 3rd time this year.

104: The number of days so far this year that Brendan Bjorn has been bedridden in total due to that pressure sore.

2: The number of days Brendan will be in overnight respite at LauraLynn starting tonight while Declan and I spend my birthday away for a couple of days.

15: The total number of nights I get off per year via respite at LauraLynn Children’s Hospice.

0: The number of in-home respite hours I’ve had in the past 5 months.

24: The number of hours I work per day.

7: The number of days per week that I work.

0: The number of retirement pensions I have to look forward to.

9: The number of years since I’ve been able to work in my professional career field.

2: The number of weeks I’ve been waiting for the county’s tissue viability nurse to ring me just to set the appointment to come out and examine Brendan’s pressure sore.

1: The number of days Brendan Bjorn has made it to school this school year.

30: The number of days since I rescheduled Brendan’s spinal fusion assessment with a promise they would ring me back that same day to reschedule, but with no word since.

6: The number of months since Brendan was placed on the “urgent” spinal fusion list, which is to be no longer than a 4 month wait.

1: The number of years I’ve been trying to find a suitable rental house via HAP that will fit all of Brendan’s special care requirements, but with no luck at all.

1: The number of years the boys and I have been stuck living in an unfinished, unsuitable, unsafe, unregistered house on the private rental market.

2: The number of rental houses I will go view today, again hoping to be selected for the crumbs of an insecure tenancy lease in what will obviously not be a forever, stable, fully suitable or modifiable family home for my boys.

1,100: The number of euros it will cost each month to rent one of the above mentioned houses (but this one actually has a wet room and a ground floor bedroom!).

12: The number of days until Christmas…a day I will set aside all of these worries; a day I hope Brendan’s pressure sore will be healed by so that he can be taken out of his bed and brought into the sitting room to watch his little brother around the Christmas tree; a day I will focus solely on the gifts I have: mybeautiful sons.

But for today, it’s my birthday…and there are far too many numbers on my mind.

 

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100 days and counting

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Tomorrow, December 9th, will mark 100 days out of 342 so far this year that Brendan Bjorn has spent bedridden due to a pressure sore. 100.

Tomorrow will also be the 45th day in a row he has been bedridden this time around, which is the 3rd time this year the same sore has opened up.

Each time, the sore gets worse. 
This time, it reached the point of a grade 3 pressure sore.

Earlier this week, Gerry Adams (Sinn Fein TD for County Louth) addressed the Dail regarding the plight of carers. In that presentation, he mentioned my precious Brendan. It brought tears to my eyes to see a TD finally bring this situation up before the government, and I have much appreciation for Gerry having done so.

The reply from the Taoiseach, however, left much to be desired.  

I sat there with my mouth open (well, when I wasn’t throwing out a few expletives, that is) as I listened to the Taoiseach throw out verbal jabs at other political party members while then rolling off a list of numbers for home help hours and respite – including the illusive night and weekend respite – that “we” (ie: the government) provide to carers. That left me with a number of questions:

  • Where are those 160,000 respite nights per year given and to whom?
  • Where are those 2,000 holiday respite placements given and to whom?
  • Where are those 42,000 respite days given and to whom?
  • Does he mean via charities that the government helps fund?
  • If so, why then do those charities have to constantly fundraise just to be able to provide such respite, which is very limited to say the least?
  • If those figures he mentioned really are so boast-worthy, than why aren’t there overnight/weekend respite facilities in every county across Ireland that are equal of quality and facility as LauraLynn (the only Children’s Hospice in the entire country)?

I heard phrases such as:

“…hope on the horizon that they’ll get an evening off or a weekend off
“…the possibility of being able to carry on knowing there’s a hope that they might get respite
“…5 million extra is being provided for housing modification grants
“…a 5 year increase in Carer’s Allowance

  • I don’t want hope on the horizon. I want hope right now, right here, today.
  • I need more than an evening or a weekend off. I’m only 1 person and this job is 24/7. I’m sinking.
  • I don’t want merely a possibility of being able to carry on. I want proper services to assure that I will indeed be able to carry on caring.
  • I can’t use a home modification grant when I can’t afford to buy my own home because I am a full time carer relegated to “social welfare” with no hope of saving for my own home, let alone having a secured retirement and a pension.
  • Any meager increase in Carer’s Allowance will not save me, or any other carer, from the often inhumane situation we are left alone to struggle through. It isn’t five euros more we need, Taoiseach.

The hashtag currently on Twitter is #carersincrisis and it is fitting. We are in crisis, and the thing about that is it puts our loved ones, for whom we are caring for, in crisis too. I don’t think the government fully grasps this all-too-frightening consequence.

100 days and counting.
My beautiful son has spent nearly one-third of 2017 in bed because of a pressure sore. It’s been over a week and still no word from the county’s tissue viability nurse to even set an appointment for her to come examine him despite it all.

There is so much wrong with the state of things.

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Waiting for a break

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I wait for a break as week 3 of being housebound fast approaches.

I wait for a break today when a fellow mother selflessly drives up all the way from Waterford to me here in north Kildare to give me that 3 hours of respite I desperately need.

I wait to hear why I haven’t had HSE provided in-home respite for months now, only to find out the nurse and home aid who previously provide this service are no longer with that company and now there is no one available to help me.

I wait for a break for my son, Brendan Bjorn, who has laid trapped in his bed for over a month now with a pressure sore that has only worsened, not become any better.

I wait to hear from the county’s Tissue Viability Nurse so we can set an appointment for her to (hopefully) call out to the house and examine Brendan Bjorn’s painful pressure sore.

I wait…I think somewhat pointlessly…wondering why the powers at be have left us out here in the middle of nowhere with little to no urgent intervention and assistance.

I wait for a break in housing, dreaming one day that – please God, before it is too late – I will receive the news there is a suitable, safe, bungalow ready for us to move into and call our forever home.

I wait for nearly anyone to ring me with offers of help, alas, I wait mostly in vain.

I wait for arms to someday hold me so I can cry uncontrollably, finally releasing even a portion of the pain buried so deep within.

I wait for so many things to improve because without hope I will be lost.

And I wait to see how much longer I can go without breaking.