One month on

Standard

Today marks one month since the boys and I moved into our forever home suitable for Brendan Bjorn’s complex care needs. I don’t think it has quite sunken in to my mind yet as I’m kept so busy still trying to unpack, clean, care, and simply be.

It’s been 4 months since Brendan Bjorn had his life-saving spinal fusion. However, he remains bedridden and unable to venture outside of his home because he is now on another waitlist, this time for a new custom moulded wheelchair seat suited for his new shape post surgery. His pressure sore has finally healed over as of a few days ago. Now it’s waiting for the seating that will enable him to experience the world outside of his bungalow. No child should have to wait for such a required healthcare item.

As I sit here taking a break between duties to write these thoughts, I considered my own history of moving from one house or town to another. By the time I was 5 years old, I had lived in 4 different houses in 3 different towns due to my dad’s job. By the time I was 10 years old, I had moved again, now a total of 5 different houses by that age. I don’t know if that’s an unusual amount of moving because that’s just my reality. It is just the way it happened. By the time Brendan Bjorn was 10, we had moved house 8 time…and that fact breaks my heart. Even so, today I take such comfort in knowing the moving stops here and now. This is it.

This will thankfully be the last home he will know.

This will also be the home where he will, some year, pass away and leave Declan and I surrounded by the most beautiful, loving memories of the boy we both so deeply love and admire. 

And as I look around at this moment, that realisation fills me with a peace that is indescribable and likely only silently, innately understood by other parents who are on this journey with their own precious child.

One month on and no more moving.
A place of new beginnings.
A place of endings.
A place for life and love.
What an amazing feeling of contentment having this home brings to me.

31 January

 

The grey area between being a parent and carer

Standard

This morning while I was giving my son, Brendan Bjorn, a bed bath and a shave, my mind once again wandered into the thoughts of being a full time carer. I trimmed his nose hairs oh so carefully. Yep, it needs done. He has thick, dark body hair and can’t blow his nose, so I need to keep his nasal passages as clear as possible. I also did some manscaping, as they call it. Yep again, it needs to be done. And again, he has thick, dark body hair and as a fully, doubly incontinent young man in nappies 24/7, it is the best way to keep that area clean when he passes what is always very loose stool.

Is that too much to write? 
Is that too much for you to read?

That’s just reality sans the sugar coating. It may not be your reality, but for so many of us who have become more than solely parents, it is our reality. I know men who care for their adult daughters during their menstrual cycle, just as I care for my young man with his more personal care needs. Make no mistake, this is reality.

In my advocacy work for disabled children (of all ages) and family carer rights, I’ve been told on more than one occasion that the work carers like me do is merely being a parent. Is it?

As I cleaned, trimmed, clipped, and cared for my beautiful, precious son this morning, I thought a lot about that statement. First off, no, I don’t agree with it. Having said that, when we decide to have a child, there is no guarantee that dream of the healthy baby being born will be the reality. It is always a gamble, a risk, that it won’t happen the way we hope, and I think anyone entering into parenthood should understand those risks and be ready to adapt, just in case life has other plans than the dreams of the pending parent.

BUT…being a full time carer is vastly different than being a parent to a typically healthy child. 

I think we need more discussions on how to treat parent carers.
There are questions to be asked; reforms to be made.

Should the parent of the child who needs full time care due to severe disabilities have to give up everything when crossing into that grey area from parent to carer? Surely there are other ways that the parent can continue contributing to society and their family with working full time, if that’s what they choose. Why can’t the parent carer be supported with home nursing or nursing in a daycare centre while they are out maintaining their career, their social life, their life as the person they once were before becoming *just a carer* who had to leave themselves behind so to care? Would the government (as some do in other countries) not see that it is to their benefit as well to support an active, contributing, member of society via nursing care during work hours? More jobs. More income. More taxes coming in. Less social welfare. It just might also result in carer parents who would have less struggles with depression and physical health issues related to being confined to home caring 24/7, which would in turn also save money from the public purse down the road.

As I float unseen in that grey area between being a parent and a carer, having left my former self behind, it all seems so achievable and logical to me. I wonder if it is?

 

DSCN5172 

 

 

As a carer, what home supports do I really want?

Standard

It’s been 12 days since the boys and I moved into our forever home. (I repeat that line in my head because I still can’t believe it). I haven’t written an updated blog piece since. You can guess why. Yesterday was the first day that there hasn’t been someone calling to the house for either Brendan’s services being set up or for household services being set up. I’m exhausted, but it’s a happy exhausted. Yesterday I had great intentions of completing all the paperwork, applications, and emails waiting for me while also cleaning and sorting out the sitting room and kitchen.

None of that got done.

I watched Netflix instead. I do feel slightly guilty, but today I’ve been up since 7am and haven’t stopped moving until now (midday). I guess I needed that rest. Ok, I know I needed that rest.

One of the meetings I had this week here at the house was with a member of Brendan Bjorn’s new disability team here in Co. Wexford. They seem great, may I just add. The conversation about home help came up, and rightly so. In the week since that meeting, I have been thinking long and hard about what I really want…and don’t want.

First of all, readers need to understand that what I want and/or need can be and likely is somehow different than any other full time carer. We all have unique situations.

Home supports, therefore, should all be tailored to meet those unique, individual needs.

Back to the meeting last week. The discussion of in home nursing help arose. Do I need it? Do I want it? My initial reaction was an immediate yes, but that quickly changed as I was made aware that Co. Wexford is following the terrible Loco Parentis clause where the parent is not allowed to leave the home when a nurse is in to provide respite. In other words, the parent is to take respite in the home.

THAT IS NOT RESPITE. NOT AT ALL. 

What that is – in my opinion – is inhumane to the carer.

Just think of it this way: A nurse works a 24 hour shift 7 days a week with no sight of any time off. She does get to sleep at night, but is on call during those hours and undoubtedly is beckoned back to work at least once during the night at least half of the time. Enter time off: The nurse can get 5 hours break each week, but the catch is that the nurse may not leave the hospital. She must take her break there while another nurse tends to her patient. She is not allowed to go meet friends for a coffee, to run errands in town, or even to take a casual stroll in the local parklands to clear her head for those 5 hours. No, the nurse must remain in the hospital (the hospital she is in 24/7, remember) just in case her patient has an emergency that she, instead of the relief nurse, must tend to.

That, dear readers, is Loco Parentis. And for parents like me who are lone parents, no family or friends to step in with respite help, and a child who is again bedridden leaving me housebound, that makes Loco Parentis inhumane. If the above description of the nurse was the reality, you can rest assured it would never, ever be allowed to happen. Unions would never allow it. The public would be in an uproar in support.

But no, we are *just* carers. We have no union. The public don’t walk in our shoes so can’t completely understand. Maybe the nurse analogy will help?

So, what do I want? 

I want to be able to have at least 5 hours a week, free to go wherever I want or need to go. Alone. Without my son whom I love more than life itself. There is an amount of guilt that comes with saying I want to have time without him. Trust me. Yet I also know that for me to be all I should be for him, I need that time to recharge, to unwind, to remember who I am as Tracy.

I don’t need help dressing him or changing him or doing his medications. I don’t need help giving him a bed bath. Now once the housing adaptations have been made and there is a wet room where his shower trolley can be used, I wouldn’t mind help hoisting him to and from for a shower. Otherwise, I don’t need help caring for him while I am here. I need help being able to leave for a respite break.

There are so many reforms that need to be made. Here are some on my mind today:

  1. Loco Parentis must be axed immediately.
  2. Respite must be made available for families like mine but tailored to suit their unique needs.
  3. The Dept of Social Protection and the HSE need to review their policies regarding when a family like mine moves from one county to another: Carers have enough to do without being made to reapply for your disabled child’s Long Term Illness card, reapplying for Household Benefits, and having to call into the local Intreo office to provide proof of the new address because we can’t simply email that proof in (and as is clear from this blog piece, I can’t call into their office).

12 days since the boys and I have moved into our forever home. We are blessed beyond belief to have a home. But to be sure, I will continue advocating for positive reforms for carers and our children with life-limiting illness and disability. Tomorrow is another day and I will then pick up my sword to continue the battle. For now, there are more boxes waiting to be unpacked and a beautiful boy down the hallway who wants some kisses.

20190119_133917

My hopes for 2019

Standard

It’s that awkward week between Christmas and the start of a new year. The big holiday is over and we get ready for everyday life to resume in 5 days time. Of course for carers, we are still working daily caring for the loved one whose life we are dedicated to saving. Still, I think this time between Christmas and New Years Day has always been one of reflection…at least it is for me.

Reflection and looking ahead.

As I reflect on 2018, I can honestly say it was one of the most challenging years I have ever had in my life. The year started with Brendan Bjorn being bedridden due to a pressure sore, and the year will go out with the same. In between, he saw the complications of cruelly delayed scoliosis surgery. Then post op, he saw 2 and a 1/2 months in hospital fighting various infections and trouble with his intestinal system not accepting PEG feeds again. Somewhere in that extended hospital stay, I found myself in the Stroke Unit at another hospital wondering if I’d ever see my boys again. Thankfully, it wasn’t a stroke. And while another health issue was discovered, it is one that I should be able to control (if I can control my diet, that is!). Yes, this year has been hell in many ways: Being apart from Declan for so long; Living in an unsuitable rental home that has restricted me from being able to use a hoist for Brendan’s care; Emotional, physical and financial struggles; and more.

As I look ahead to 2019, I have realised there is something I must do, not only for myself, but in turn for the boys as well. I need to forgive myself. I need to let go of some of the things in the past that continue to bring me guilt, self-disappointment, and regret. It won’t be easy, but it’s dawned on me lately that if I continue to beat myself up for bad decisions I’ve made in the past, I won’t be truly free to enjoy the future. You see, I’ve trusted and believed certain people when I shouldn’t have and I made life decisions based on that trust. It resulted in struggles the boys and I certainly didn’t need. I paid the price, but worst yet, the boys have paid the price…and that has been tearing me to bits inside.

So here I sit today, seriously contemplating what good it will do to continue berating myself for those regrettable decisions. It’s not fair on Brendan Bjorn and Declan. And frankly, it’s not fair on me, either. My heart was always in the right place and I based decisions on love in my heart, and that is what I need to hold onto – and remind myself of – when I reflect. I am going to work on simply letting that negativity toward myself go.

The boys and I have SO MUCH to look forward to for 2019.

We will soon be moving into our forever home, a bungalow for Brendan where his complex medical care can be safely managed. Where Declan can grow up in a small village setting and learn what community spirit is all about. Where I can finally let go and breathe knowing this will be it – our final move in what has been a recent history of far too many moves. And to be sure, it is all thanks to the kindness of friends and strangers and indeed the person who has anonymously helped me beyond belief.

I will never be able to find the words to capture my gratefulness.

So here’s to 2019.
A new start.
A new life.
A new home.
A family on the mend.
A family mindful of the blessings.
A family full of love. 

 

20181216_125600

Sjokolade og honning og familie

Standard

There was a knock at my door today. The postman handed a box to me. Straight away I saw the word “posten” on the box and the stamp marked “Norge.” It’s been a hard couple of days for me emotionally for a number of reasons, so this was truly perfect timing. Serendipity maybe. I couldn’t open the box fast enough.

Norsk sjokolade og honning fra familiens gård.

Norwegian chocolate and honey from the family farm.

As much as I love chocolate and honey, seeing the beautiful photo of my cousin’s baby on their Christmas card was the best gift of all. What joy at seeing how much she’s grown just since July when I saw her last! And to see the happiness in the faces of her parents, whose journey as parents has just begun, made me overwhelmed with emotion. I cried (easily done, I know). That is family, I thought. That’s my family. Sure, they are my third cousins, but as I don’t have much family to speak of, these wonderful people are the closest family I have. I truly look forward to seeing them all again soon.

It’s an unusual situation to be without parents, without extended family, without siblings that you’re close to, and being basically a family unit alone in the world. It’s just me and the boys. That’s us. Our little, loving, family. So, I treasure the relationship that continues to grow with my cousins in Norway. They provide me with a sense of connection; a feeling of grounding; a reminder that there is a place in this vast, crazy world where there is a familial homeplace going back generations…a place I am always welcome. That brings me some peace of mind.

It’s not just sjokolade og honning. It is familie. And that means the world to me.

20181221_105140

Caring for a carer at Christmas

Standard

Do you know someone who cares full time for a disabled child or loved one and are unsure what to do for them for Christmas? We carers can, after all, be a tough lot to know what to do with when it comes to the holiday party invites or gift giving. As many of us can tell you, invites out often stopped years ago. We just can’t get out unless there’s either a family member who can care for our disabled child or a nurse available to provide respite. Some of us, like me, don’t have a partner, family or in home respite nursing available, so friends tend to just know an invite can’t be accepted – so it’s simply, sadly, never given.

Don’t give up on carers. There are a number of ways to show them you care at Christmas.

Here are some ideas:

  • Drop in for a visit, especially if the carer is homebound the majority of the time. Loneliness at Christmas can be especially difficult for a carer.
  • If you can’t drop in for a visit, pick up the phone. Chat. Ask them how they’re doing. And listen. Really listen.
  • Send a card with a gift voucher to help with expenses. Carers of a disabled child or other family member have expenses out of the norm which most people don’t realise – extra heating oil; extra electricity used in the amount of daily clothes washing, running motors on beds and equipment, etc; paying for groceries to be delivered; higher insurance costs for accessible vehicles; and much more. If relegated to social welfare as a full time carer, that adds to the financial strain with the extra expenses.
  • Time. Are you willing to learn how to help care for the carer’s disabled child so to give them a break on occasion?
  • Gift basket. Many of us run on coffee, tea and chocolate. How about putting together a lovely little basket filled with the carer’s favourite drinks and goodies?
  • Offer to run errands. If you have the time (or can make the time), consider asking the carer you know if there are any errands they need to have run, but they can’t get out to do themselves. Remember, we’ll probably say no at first, but there’s bound to be something that needs done.
  • Connect with them. Be it in the Christmas card or in a letter or on the phone, let them know that you see what they do every day and provide that recognition. Not patronisingly, but genuinely and compassionately let them know you are there for them while they are there for the child they are caring for around the clock. In short, simply letting them know they are being thought can be just what they need to make their often isolated day a bit easier.

 

20181220_100318

 

The Emotional Blackmail of Carers

Standard

I was just chatting with a new follower on Twitter. A fellow full time, unpaid carer parent of a disabled child. In our brief chat, I said this:

“I’ve often joked (can it be a serious joke?) that carers need a union. Then maybe we’d be heard.”

Honestly, it is a good idea. But I just realised there’s a problem with my good idea:

WE HAVE NO LEVERAGE.

What would we, as carers, do if we did have a union? Our union reps could go to the bargaining table with the State and demand the desperately needed supports for us…but what would our bargaining chip be? We don’t have one, do we?

Government leaders (those who have the power to actually make our lives and the lives of our disabled loved ones fair, manageable and dare I even suggest a positive life experience by being properly and fully supported in the 24/7 work we do) know that we don’t have any bargaining chips…or do we? 

We have one: Bringing our disabled child (of whatever age, that is) to our local A & E department and saying, “Here, I’m on strike. You take him/her.”

*And yes, I’ve seen this discussed in carer groups on more than one occasion. This is how in crisis so many of us truly are*

Here is where the emotional blackmail of carers comes into play. Government leaders know full well that the vast majority of us would never do that. Even though we’d collapse an already overburdened hospital system and surely we’d then be heard, they know we wouldn’t do that. Why? Because we love our child too much to do it…they know it and count on it. 

They have us right where they want us: Emotionally tethered to remain in the home caring 24/7 with little to no respite help; barely making ends meet; being housebound for weeks on end at times; often fighting depression and/or anxiety; no retirement; no pension; often no social life at all; all while many of us are destroying our own physical and mental wellbeing for that of our precious, beloved, child. Because we love our child that much.

Yes, they know most of us would never place that one bargaining chip of the A & E drop on the table, and so they play their hand in advance of us even taking a stance – a hand which is surely nothing short of the emotional blackmail of carers. 

Carers union, anyone?

emotional blackmail of carers