I was reflecting this morning on my role as Leah’s main carer for the last year of her life. For our loss of Leah is not just one loss, it comprises many separate losses that come together to make up the whole loss.
I miss caring for Leah.
My first experience of caring for Leah 24/7 was when she was admitted to our local oncology/haematology ward in February 2013 and subsequently had an appendicectomy.
I adapted to my role as carer quickly and easily. I recorded in my diary that Leah “is so uncomplaining and is at all times thoughtful and considerate.”
I took one more day off after Leah came out of hospital and then I returned to work and left her in the care of her devoted daddy. Horace says that no matter what wee thing he did for her, even if it was just picking up a page of school work that had fallen to the ground, her immediate response was “thank you daddy”.
“The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes”
Horace says that the two lines “Whatever may pass, and whatever lies before me, Let me be singing when the evening comes” really affected him at that time. Although Leah was undiagnosed, he was quite convinced that this wasn’t the end of the story. On hearing the words of this song he became overwhelmed with emotion and had to leave the room and go outside so as not to cause Leah any anxiety or distress.
When Leah was diagnosed in April ’13 I tried to continue working, but it quickly became apparent that Leah was going to need me at home full-time.
I love my work and initially I missed the “escape” that work provides. However I soon settled into my new role of accompanying Leah to her many appointments and providing her with emotional support.
Once we got to Bristol, my input became “hands on”. Leah gradually became too weak and ill to do anything for herself. She needed me to help her to the toilet, wash her in the shower, dry her, dress her, put cream on her face, help her with mouth care etc. Leah was very good natured and I loved caring for her.
Only once during our time in Bristol did Leah get annoyed with me, it was in October and it was regarding her GCSEs. We were working together on an email to send to her school about the help she would need in order to catch up with her studies on her return home. Leah studied as best she could, while in Bristol, with the help of the lovely hospital teachers, whom we both adored.
However Leah was very stressed about how far behind she was with her studies and she wanted me to put a lot of this detail in the email to the school. I felt that at this stage her school just needed an outline of the basic facts, like what date we were likely to be home and when she needed the home tuition to start.
I then wouldn’t send the email because we weren’t in agreement. Leah accused me of not understanding how far behind she was with her studies and how important her school work was to her. She stormed out of Sam’s House and headed into the Royal Fort Gardens next door.
This left me in a total quandary as her carer. I appreciated that Leah needed some space and cooling off time. She was 15 years old and needed a break from her mother’s constant presence. I was also very aware that she was quite weak and ill.
High dose steroids had left Leah with severe muscle weakness – if she tripped and fell she would have been unable to get up again. It was also starting to get dark. After 50 minutes of anxiously praying for her safety, I went after her and silently escorted her back to our bedroom at SAMs.
Thankfully the X Factor was just starting and she loved that programme.
By the time the X Factor was over, Leah had calmed down. At bedtime she wanted me to tuck her in and kiss her goodnight like every other night. This endearing bedtime ritual had started shortly after we arrived in Bristol.
Sometimes I would be exhausted and I would forget and get into bed without tucking her in and kissing her. Then I would look over and Leah’s big doe eyes would gaze reproachfully at me from across the room. I would get straight back out of bed and pad over and kiss that smooth bald head and tuck her in with the furry blanket brought from home and tell her once again how much I loved her.
By the time we returned to Ireland after 14 weeks in Bristol, I was emotionally depleted. I loved looking after Leah, but I had put many of my own needs on hold and now they were clamouring for attention.
Once I arrived home, after an absence of almost four months, the needs of my family, my domestic responsibilities and a small mountain of mail also clamoured for attention.
I received an appointment almost immediately and I’m still attending. The support has been invaluable. I’ve also received a course of aromatherapy massage appointments from Action Cancer.
The latter have helped my sleeping pattern, which was very useful, as I’m very reluctant to take any medication for sleep or mood. I’m already on very strong daily medication to control my migraine and I feel that’s enough for my body to cope with.
In December ’13 I was summonsed to a work related meeting to look at the feasibility of me returning to my job. A provisional date in March 2014, pending an Occupational Health interview in January ’14 was agreed upon, for me to return to work.
I’m the primary bread winner but I wondered how I was going to combine my caring responsibilities with working, even though my basic contract is only part-time. Leah’s consultant assured me that Leah was getting better and would hopefully be returning to school in March 2014. I wasn’t convinced.
I’m now returning to work part time in September 2014. I’m very pleased to be returning to work – and I’m looking forward to it – but I somehow never imagined it would be under these circumstances.
As a nurse, I have worked over the years in the areas of mental health, learning disability, physical disability, special needs and with children who have life limiting conditions. I have had a lot of contact with parents who are carers. Some of them have cared for many years for children and young people who are very severely disabled.
Nevertheless I don’t think that I ever really understood the emotional complexity of being a mum whose child needs 24/7 care, until I experienced the situation first hand.
On the one hand there is the exhaustion that comes from caring for someone 24/7. Then there’s the guilt that comes from knowing that you are neglecting, or at the very least short changing, your husband/partner and your other children.
If you aren’t looking after your ill or disabled child, you are probably thinking about them, talking about them, shopping for them, or else catching up on your sleep.
On the other hand, there is the total and utter love and devotion that you feel for your ill/disabled child or young person. There’s the closeness, the bond, the tenderness, that develops between the two of you. It doesn’t matter how much help they need – you carried them in your womb, you gave birth to them and you love them unconditionally, in a way that only a Mother can.
So although at times I did struggle with the 24/7 commitment of being Leah’s carer, I really miss the extraordinary closeness that we shared because of that.