“In post-modern culture there is a deep hunger to belong. An increasing majority of people feel isolated and marginalised. Experience is haunted by fragmentation. Many of the traditional shelters are in ruins. Society is losing the art of fostering community.” – John O’Donohue, Eternal Echoes. 

A few days ago here in Ireland, an elderly man was found dead in his house. He had been dead for 7 months…and no one noticed. Just over a year ago, a similar situation happened, actually in the same city, where another elderly man lay dead in his apartment for 6 months before anyone noticed. This tragic story reminded me of the same happening just down the road from a school I had worked at years ago in the States when an elderly lady was found by a utility worker as he looked in her living room window and found her dead on the couch. She had been there about 9 months.

As it did all those years ago when I heard about the old woman down the road from the school, the story this week upset me terribly. I think it should upset everyone, to be honest, but I don’t think it does. Maybe because I travel along this journey’s road isolated from that increasingly rare sense of community, I can empathise with the situation of being no one else’s priority. (Not dramatic. It’s just the truth.)

Let me explain that.

I can’t remember the last time a friend called me just to chat and check in on me. I can’t remember the last time I sat around a dinner table hanging out with friends, laughing and joking and not having a care in the world at that moment. I can’t remember the last time I knew I was someone’s best friend. I now go weeks without talking to anyone other than professionals related to Brendan Bjorn’s care. And if it wasn’t for the fact that I have an 11 year old son who would see me if something happened to me and be able to call for help, I would end up like one of those tragic stories above.

I don’t write this to gain pity.

I write this to help others gain understanding at just how truly isolated so many carers are in their homes. 

“The hunger to belong is at the heart of our nature. Cut off from others, we atrophy and turn in on ourselves. The sense of belonging is the natural balance of our lives.” – John O’Donohue, Eternal Echoes. 

Personally, I don’t feel a sense of belonging. I don’t have family and a community that I’ve been rooted in for life. I am generally cut off from others, as are many full time carers who are predominately housebound. As described in the quote above by John O’Donohue, I feel like I am atrophying and turning in on myself. Again, it’s isolation. It’s lack of being able to socialise and connect with peers on a regular basis. It’s about not being able to be anything but a carer, yet wanting to be something else, too. It’s about having to leave behind those activities that gave me the outlet to express who I am, to centre myself, and to nurture within me that natural balance that comes with a sense of belonging.

Maybe that’s why I’m no one’s best friend or priority: Because who I am has atrophied to the point that I’m no longer interesting enough to anyone to prompt those calls and invitations, that connection which brings the sense of belonging. I have to wonder.

Carers often lose many other aspects of their lives, except that of being a carer, as each year of caring passes from one to the next. 

I think about those elderly people who lay dead in their homes for months on end, undiscovered, and clearly unmissed. How lonely they must have been. They weren’t anyone else’s priority. It shouldn’t happen. What does it say about society when this happens? And, for those who had family and friends, where were they? Busy with their own lives. I know. I’ve heard it more than once myself.

No one should be left isolated until they no longer feel a sense of belonging. 

 

“Everyone longs for intimacy and dreams of a nest of belonging in which one is embraced, seen, and loved.” – John O’Donohue, Eternal Echoes. 

 

 

 

 

 

 

It’s been 7 days since Brendan Bjorn got his new custom moulded wheelchair seating after having waited 9 months since his spinal fusion last October 2018. Waiting, in bed, housebound. We have been out a couple of days since he got his seating. The second day we were out, finally getting my haircut and doing a bit of shopping, he became fussy by the end of it. We had been out too long. Just 3 hours – the maximum time length he can be in his chair at this point in his life because he’s grown that fragile. 3 hours.

And while I am truly thankful to have this bit of freedom now, it is just a glimmer of freedom – and it’s a glimmer whose light can be quickly extinguished with one pressure sore opening up, again forcing him to be bedridden.

I’m not being negative. 
I’m being realistic.
It will happen again.

I was chatting on Twitter with a friend of mine yesterday. He said something that has stuck with me. We were actually chatting about the upcoming hurling matches and I sent a couple photos of the boys in Cork gear from the time when we lived down there. It was 10 years ago and Brendan Bjorn was a different boy altogether. The conversation went from hurling with this one short message to me: “I can see the journey you’re on. It’s not just BB as he is, it’s BB as he was.”

Yes. A thousand times, YES!

In that one message, it showed me that someone finally understood how, despite being happy to finally have limited freedom with Brendan Bjorn’s new seating, it is – and always will be – bittersweet because the boy he was is always present in my mind as I watch the boy his is now grow more fragile each year. 

That is something that most people can’t understand. Dare I say, it’s even something that many newer parents on this journey can’t (yet) understand as they are just starting out, still full of hopes that their child will reach milestones; still working with therapists weekly so their child can meet their full potential. And rightly so. They should be.

But you see, I’ve been there with Brendan Bjorn.

The physio twice a week. The OT/speech once a week. The stander daily. The walker – yes, a walker! The special needs bicycle. The AFOs and botox and serial castings. Watching him be able to grab things out of my hand, bring a biscuit to his own mouth, hold his head up for a few minutes at a time. Seeing him accurately trigger BIGmack switches to relay messages. The travel and adventures taken. And so much more. 

But it’s all gone now. That time is past. The hope of milestones and met potential no longer exists. And for me, it hurts like hell to watch my child regress and decline each year despite having worked so hard and having had such faith that the work would make a difference and somehow save my beloved son from the challenging and very restricted life he is now leading.

As I washed his hair tonight, carefully and tenderly holding his head in my left hand as I rinsed with my right hand, it all came rushing at me. The feelings of what it used to be like when he’d lay in his special bathtub laughing, kicking his legs to make the water splash, and laughing with abandon. Yes, beautiful, precious memories I shall treasure as long as I live. But like my friend said about this journey, It’s not just BB as he is, it’s BB as he was. 

Before I had my sons, I was a professional child and family therapist. During my graduate studies, we often discussed burnout as a therapist and tools to try and avoid it as best as possible. Today, as a full time lone carer to my severely disabled teenage son with profound medical care needs, I am experiencing burnout. 

What are some of the signs of burnout? 

Here’s the way it was described in one recent article in the Irish Times:

• There is no such thing as a good day
• You’re constantly exhausted
• You’ve unexplained aches and pains
• You’ve lost interest in all the things you used to enjoy
• You feel helpless, trapped and alone
• Nothing lifts your spirits
• Loss of motivation
• Isolating yourself from others
• You feel constantly angry, frustrated and resentful
• The future looks bleak

As I read over that list of warning signs, and tick pretty much every single box – as I’m sure many full time carers can do, too – I feel compelled to write this blog piece as a way to get more conversation started on what can be done to help carers like me continue with the work we do every day.

A recent study by Family Carers Ireland showed the following from their survey:

• 2/3 feel their health has suffered as a result of being a carer
• Over 2/3 suffer with physical ill health
• 1 in 3 have a diagnosis of depression
• 4 in 10 have a diagnosis of anxiety
• 71% have no access to respite

There has also been discussion in the press recently of burnout amongst the medical professionals in Ireland due to our failing health system and the appalling shortage of consultants. Last year it was revealed that 1 in 3 hospital doctors experience burnout.

Burnout amongst the caring professions – and I include those of us who are full time family carers of our disabled loved ones – is an extremely serious concern that must be addressed.

Carers like me are the first line of care to keep our fragile children out of hospital. Our work is crucial. We literally keep our child alive with the medical interventions we do.

We are entrusted with complex medical care, often on a 24/7 basis for days, weeks, months on end, which including measuring and administering life saving medications, clearing airways, seizure rescue, monitoring of heart rate and oxygen, care of open wounds, and so much more.

If we burnout, what happens to that intensive, daily care we provide and what happens to the one we are caring for? (please re-read that all-important question)

As with the physicians who are experiencing burnout, there is only one answer to that question: The quality of care ultimately suffers. 

A perfect storm, as it could be called, is brewing in Ireland. One where full time carers like me are burning out and the doctors are also burning out. What saddens (and angers) me most about that fact is not the list of burnout symptoms above which I go through on a daily basis, but knowing that, at the end of the day, it is the patients, the loved ones, the fragile children, whose lives depend on the best care possible to remain healthy and indeed alive, that are most at risk because of burnout.

It is past time that the government listen to all of us crying out for reforms.

It was just 2 weeks after Brendan Bjorn’s first birthday when I drove him from Tucson to Phoenix for a second opinion from a Paediatric Neurologist. You see, I still had hopes at that stage. I was still holding on to those dreams of the future…his future and mine.

In his first year, Brendan Bjorn had been diagnosed with congenital CMV (cytomegalovirus) at 4 weeks old. The week prior to that diagnosis it was confirmed that he was profoundly deaf in his right ear. I remember thinking that was such devastating news; unilateral deafness!

What’s that they say about hindsight?

Anyway, after the cCMV diagnosis came a CT scan at 6 weeks old which showed moderate brain calcifications, decreased white matter, slightly widened ventricles, a portion of his brain’s left hemisphere not fully developed, and of course, microcephaly – a word I learned when he was just 2 weeks old.

At 4 months old, on Valentine’s day, his neurologist diagnosed him with quadriplegia cerebral palsy.

At 6 months old, in April 2005, he had his first EEG. I can’t even tell you how many he’s had since, it’s that many. He had been experiencing severe infantile spasms, or myoclonic jerks, so the EEG was ordered. It was the only EEG he ever had which read as normal.

It was just 2 weeks after Brendan Bjorn’s first birthday when I drove him from Tucson to Phoenix for a second opinion from a Paediatric Neurologist. You see, I still had hopes at that stage. I was still holding on to those dreams of the future…his future…despite what all of the tests that first year told me.

Journal entry from October 15, 2005. 

“I don’t know where to start. Yesterday I took you to see a neurologist at Phoenix Children’s Hospital. It was terrible. He was terrible. You were so beautiful, as always, smiling at me, at the doctor. He asked if I was always so happy. I thought he was asking you, so I answered, “Yes, he’s a very happy boy!” He said no, he meant me. Max [my step mother] said I do deal with depression over the diagnosis of CMV. The doctor then said he wondered why I was so happy because CMV is nothing to be happy about. He was abrupt and didn’t even examine you. He didn’t even attempt to interact with you. He just told me that CMV with microcephaly is a bad prognosis…that I can expect you to surely develop seizures, that you will only have an IQ of 40 to 60…that you will most likely never walk or feed yourself, therefore your lifespan will be shorter. I was devastated. A piece of me has died. I feel like I got your diagnosis all over again. If he is right, you will never read this, you will never understand any of this, you will never have a life of your own to discover. I feel so sick; beyond sick. You are my heart, my life, and I feel as if my heart has stopped, my life forever damaged, changed, painful.”

Yesterday, July 2, 2019, I sat at my desk while looking for some papers, and picked up the old journal containing the above entry. It’s priceless to me. I began it the day I found out I was pregnant with Brendan Bjorn. It’s a roadmap to the early years of our journey together. I’m not sure why I share this here now. Possibly because that pain has never left me. In some ways, it’s grown. And lately, it’s been weighing very heavy on me yet again. I try to hide the pain of this journey, and the inevitable outcome, but sometimes I just can’t.

This journey, and the years of fighting and struggle, do take its toll. So remember, even those who seem strong outwardly may actually be crumbling inside.

I posed a question on Twitter the other day asking carers what they thought was most fair when it came to allotting overnight respite: Each family receiving the same amount of overnight respite per year, or, each family being assessed on an individual basis considering such factors as: do they receive overnight respite through another facility, do they receive in home nursing and/or respite support, do they have a support network of family and friends, the size and age of child, the complexity of care, does the parent have any health issues themselves, and so on.

All of the answers supported the idea that overnight respite allocation be done on an individual, needs-based assessment to be most fair. 

There were also some replies from other countries which are worthy noting. For example, in Australia and Canada, funding is given directly to the parent/carer to determine how, when, and where to best obtain the respite that best suites their family’s individual needs. It could be in-home nursing respite is best for them. It could be that in a respite facility works best for them. But at the end of the day, they are free to tailor their respite based on the unique needs of their own family.

Can Ireland be this progressive when it comes to respite funding?

Will the current respite centres, many of which are charities, consider changing how they allot respite nights to families?

We have plenty to discuss regarding reform to carer and disability services in Ireland.

We need to get government, charities, carer organisations, and families around the table for this discussion. To be absolutely clear, these type of decisions should not be made without consultation from those that are most affect – the families who desperately need the respite. Unfortunately, the way it stands now, many of those decisions are made in just such a way.

What reforms would you like to see regarding respite services in Ireland? And to go back to my original question at the beginning of this blog, which way of allotting respite nights do you consider most fair? Let me hear from you.