This is Mother’s Day weekend and I’ve been doing some counting. It was Brendan Bjorn who first made me a mother. Every day I have had with him since, I count as an amazing blessing. But I’ve also spent some time today doing some counting of another type as well…

I’ve been counting days he has been bedridden and/or housebound. 

I’ve been counting the months since my last in-home nursing respite.

Before I put these numbers down on this page, I would like the reader to first imagine their child being the one restricted to the bed; their other children being the ones not able to get out for any activities other than school; them working 24/7 at a tiring task keeping their child alive every single day. Close your eyes. Mentally step into these shoes, if you can.

Brendan Bjorn has been bedridden and/or housebound for approximately 403 days since February 2017 when his first pressure sore developed. 
In 2017 he was bedridden for 122 days.
In 2018 he was bedridden for 191 days.
And so far this year, he has been bedridden and/or housebound every day, 90 days and counting.

The last time I had in-home nursing respite was June 2017. 
That’s 21 months ago.
Approximately 638 days ago.

15 nights break out of 365 days working 24/7. 
Were it not for the wonderful LauraLynn Children’s Hospice charity providing 15 nights of respite per year, I would have had absolutely no break. Drop off time is 2pm, pick up time is 12 noon. That’s 22 hours break 15 times per year.
330 hours break out of the 8,760 hours per year.

Family Carers Ireland did a study that showed family carers such as myself save the Irish Government approximately €10 billion per year. That’s a lot of money. I have to then ask, where is the support for family carers? Why is there not more in-home nursing respite available…and without the recently concocted Loco Parentis restriction? Why are there not more medically suitable overnight respite facilities like LauraLynn? Why does the State not see that family carers such as myself could contribute far more to our communities if we could simply get out of the home? And why does the government not understand that many carers are themselves sacrificing and often ruining their own health by caring 24/7 with no breaks, no support, which in turn will only cost the state more money down the road?

I’d like to think I can count on the government to listen to my questions and to work toward these desperately needed reforms to support family carers. Because you know what? It isn’t just about me and all the other carers. It ultimately is about the care we are able to give to our disabled children or other family members. If we are exhausted physically, emotionally, and mentally, we aren’t able to give the best care possible. Can you imagine a nurse being required to work under these conditions and these hours? No, and it would not be allowed to happen. 

Yes, it’s Mother’s Day weekend. I’ve done my counting. In my head I will count the hours and days, dreaming of either bedtime or of some future break. In my heart I will count my blessings, the 2 most precious being my two beautiful sons.

 

The definition of Loco Parentis is this: being responsible for a child while the child’s parents are absent. If you follow my blog, you will know that here in Ireland – in certain counties (no, not in all of them) – there is an unofficial policy* referred to as Loco Parentis which requires either a parent or another adult to be home with the disabled child while a nurse is in the home to provide respite. Lone Parents, such as myself, would either need to remain in home (which is certainly not a respite break) or know another adult that could give up so many hours per week to be the Loco Parentis.

*Unofficial because I have not yet seen any official documentation and/or website information describing the policy. I await a reply from the Minister for Health’s office.

This week I came across the term Loco Parentis again, this time regarding Brendan Bjorn being transported to and from appointments via one particular ambulance service. I was surprised (and admittedly disappointed) to learn that a parent – or a Loco Parentis – is required ride in the back of the ambulance with the child. Why disappointed? Because after about 15 minutes in the back of an ambulance, I literally get sick. To put it bluntly, it wouldn’t work, me vomiting all over Brendan and the ambulance. When I asked about riding in the front cab (where I’d still be able to see Brendan through the window to the back), I was told it wasn’t allowed.

The Loco Parentis policy with ambulance transport also means that when it is a one-way transfer, say to a respite centre for an overnight break, the parent cannot follow along behind the ambulance so that they have transportation back home unless they have a Loco Parentis person with the child in the ambulance. If you have no one to do that, then the parent must ride in the ambulance and have someone follow them and then drive them home. That’s ok if you don’t live hours away and if you have a support network that can fit you into their schedule. So, however you look at it, using ambulance transport doesn’t work unless the Lone Parent has another adult to support them in these ways.

Lone Parents are those who need the most support of all carers, yet they are the ones most penalised by policies such as Loco Parentis. 

As for the ambulance transport and Loco Parentis, this wouldn’t even be an issue if Brendan Bjorn had a suitable, safe wheelchair seat. I could then transport him wherever he needed to go. But as it is, it will be over 9 months since the date of his spinal fusion until he finally gets a newly moulded seat he can safely sit in. 

Some people in this world actually don’t have family and/or close friends around them to help. I have found that a lot of people can’t fathom that reality. Nonetheless, it is a reality for some people. It is a reality for me. The result is that Loco Parentis policies add to the many crises that Lone Parent Carers face on a daily basis. The result is that Loco Parentis policies contribute to the Lone Parent Carer being more isolated, more stressed, and more likely to have their caring abilities compromised as such.

I’m left asking WHY such a policy exists when it comes to parents of a disabled child who are clearly in need of assistance, and my only explanation is liability and fear of being sued. But I have to follow up that question and it’s most likely answer with these questions: Are respite nurses not professionally trained to handle an emergency, should one even arise? (Yes, of course they are). Are EMTs not professionally trained to handle an emergency, should one even arise? (Again, yes, of course they are). Why isn’t the parent being in the front of the ambulance during transport or even following behind in their own vehicle not enough should an emergency arise?  How is all of this any different than leaving a child alone inpatient in hospital to be cared for by nurses and doctors? Who is the Loco Parentis in that situation?

I have a lot of questions.

 

 

A few days ago, Brendan Bjorn developed a new pressure sore in the same area as his old one. Yesterday, the skin broke down and it is now an open sore. Another open sore. I am devastated. It has been just over 2 years since he first developed a pressure sore at his left IT (ischial tuberosity) point. It has been a battle ever since. 

See the blue highlighted areas in the below photo to understand where it is and why it’s such a pressure point. 

I called the Public Health Nurse out last week to look at the sore and she is going to contact the Tissue Viability Nurse. Tomorrow I will have to ring her and let her know the sore has opened, just as we feared it might.

Over these past 2 years, the sore has left him bedridden for months on end. He hasn’t even been able to attend school for the past 2 years. And, as he still doesn’t have a new wheelchair seat in which he can safely sit since his spinal fusion operation, he hasn’t even been sitting directly on that IT point – yet it has again broken down. Despite the side-lying, despite the tender care provided, this new sore has developed and I can’t understand why when I’ve done everything possible to prevent it.

…and so, I worry. 

My mind is racing with the dreaded what-ifs. What if this is his new normal? What if he’s never going to be able to sit longer than a few hours at a time, otherwise being relegated to being bedridden. What would that mean for my family, when we are already fighting for in home respite without the restriction of not being able to leave the home due to the Loco Parentis policy? What will that mean for my emotional and physical health, which I am already struggling with as a result of being housebound these last number of months? And what of Declan’s well-being, also being housebound as a young, growing boy?

…and so, I worry. 

Trust me when I say I’ve heard everything there is to say about how worrying is a waste of time and energy. As a former professional therapist, I have surely said similar to former patients as well. But…but…but….this is my son. This new development is potentially life changing for all three of us in my little family and as such is terribly frightening to me.

We need more freedom, not less.
Brendan Bjorn needs more healing, not more challenges.

…and so, I worry. 

March 18, 2019. Today is 29 years since my Mom died in 1990. Cancer. She was only 60 years old. It was a few months after I turned 24. Two years before she died, when she was told she had cancer and was given a prognosis of 6 months to live, I moved back to my hometown to be with her. We got an unexpected 2 years together, having been living in different cities since I was a mere 9 years old.

I didn’t get near enough time with her during my own lifetime. I was robbed of the time I should have had with her. There’s just no other way to put it.

My late father pressured me…an emotional 9 year old little girl who had experienced neglect and abuse…to move in with him and his new wife. He convinced me that my Mom didn’t really want me other than for the child support payments he was making. He promised me we’d get a horse, which I had always wanted. He made me spy on my Mom, keeping track in a notebook of when she came home at night, how late it was, or if she even came home all. They were both alcoholics, you see. But the difference was that my Mom had a heart of gold. I can’t say that about my dad. They both had their demons, but they dealt with them very differently. Between 8 and 9 years old, I was made to choose who I wanted to live with – a decision no child should ever be made to make. I chose him and his new wife.

I occasionally wonder what life would have been like had I chose differently.

Of all the people no longer in my life, living or dead, it is my Mom who I miss the most. If I could choose anyone to sit down with again for even just an hour, it would be her. It seems ironic that the older I get, the more I miss her; the more I need her. I wonder what she would say and advise. I wonder how she would be with Brendan Bjorn. And I wonder if she ever forgave the little girl who inadvertently broke her heart, as her own young heart was breaking, and who was driven away from the family home while her mother stood in the doorway crying. I’d like to think she never even blamed me for that choice.

So on this 29th anniversary of my Mom’s passing, I wonder what she was like before I knew her. What made her the adult she became? This photo of her is one of my favourites. What was she laughing at? Did someone say something funny or was she, even then, just the shy young woman that she was as an adult and so was nervous about having her photo taken? I’ll never know, but I can wonder and imagine. How I miss that big happy smile that forced her bright blue eyes to squint shut! That’s the memory I’ll hold onto today. She was creative, sensitive, loving, passionate, compassionate and kept far too much bottled inside. What’s that they say about the apple and the tree?

For you, Mom. Your memory lives on, as does your love.
I love you. Always. 

It’s a difficult task to describe how a mere budding moustache on Brendan Bjorn is making me feel. This is where being a carer to your severely disabled child with a life limiting condition comes into stark contrast with being a typical parent. This is where being a carer of such an angel can play cruel tricks on your heart as your mind is let to ponder a future that won’t be…a future where your son becomes a grown man, goes to University, meets the love of his life, has his own family…and so on and so on.

I decided to let the moustache grow. 

I’ve been shaving Brendan Bjorn’s budding moustache for a few months now but something this past week prompted me to stop and let it grow. Were he a typically healthy young man who will turn 15 in October, I don’t know if he’d want it to grow or if he’d be mad to shave it off every day. It’s up to me. Everything is up to me to decide when it comes to Brendan Bjorn.

His little brother wants to let it grow. 

He said Brendan Bjorn deserves the chance to have a moustache like a man.

And so, it grows.

I don’t think I’ll let it go for too long. It just doesn’t seem right at his age. Or, is it because he is my baby? While I’m not sure which it is, I know I will shave it when the time is right.

For now, I give him this chance to be that man he could have been, even in some very small way…even though my heart is breaking just seeing it there.