How did we get to a point we’re visiting a hospice? What does that mean? Is Jaxon okay?
Jaxons diagnosis has not changed. His prognosis is still unknown. His syndromes affect his quality of life hugely; he is fed with a feeding tube, has multiple medications throughout the day, has numerous appointments a week. His brain, kidneys and development are all affected. Yet non of these, as far as we’re aware, limit his life. It’s his huge heart that threatens us.
In February 2018 I filled out a personal resuscitation plan for Jaxon and that lead to end of life services and support such as a team of bereavement nurses. It was called ‘parallel planning‘ – planning for the best and worst case scenario.
We were still in hospital when it was suggested I look at a hospice and it took a long time for me to give the okay to sending off an application. The bereavement nurse assured me it would be of great help and that it was a great place for support – not just for end of life care. It took me a while to call back for the assessment to be done. It wasn’t until July that someone visited in hospital and sat down to go through the assessment.
The criteria for our hospice has changed to solely life-threatening diagnosis, excluding life-limiting diagnosis, due to capacity. After the assessor left I found myself worrying we may not be accepted. She had asked about his prognosis and I had explained the unknown. The assessor expressed her opinion that Jaxon fell into a grey area – he didn’t have a terminal illness with a date, he may live for another 20 years but he also could pass away tomorrow. She explained she would put it all in front of a board of commissioners who would make a decision and I would hear back in around two weeks.
Two weeks later I got a phone call from the same lady telling me Jaxon had been accepted and they would like us to book a visit to the hospice. I didn’t know whether I felt happy or sad about this. I was glad he was accepted, it’s a strange thing to celebrate but he deserved all the services that could open doors to a better quality of life for him. On the other hand, it also said yes we agree your child may die soon.
I left it a couple of weeks to call back. One of the struggles was logistical – I don’t drive and google maps tells me it would be quicker to cycle than it would be to get public transport – I’m not even joking. Sigh. The other struggle was, I guess, the subconscious thoughts and feelings.
I’m trying to get my degree done. I have one final 12 week placement left to complete to be a qualified nurse. However, I’m aware it’s not going to be easy and I will be getting home from 10 hour shifts to my main job that is Jaxons care around the clock. Therefore I called the hospice to arrange a visit in hope of some respite midway through the placement. I’m not sure that without this nudge I would have faced the music.
I was intrigued to visit the hospice, I had no idea what to expect and wasn’t nervous until we were en route that morning. All of a sudden I felt sick. I clung on to the positive feedback my old housemate, a children’s nurse, had shared with me during our uni days of how much she enjoyed this particular placement. I can’t say I ever thought I’d have a reason to see it myself.
On arrival I was greeted by a family support worker and a student nurse. Both very kind faced (is that a word?). They showed me around. It was like a hospital, but not like a hospital. The layout was all ground floor, similar to an elderly care home; lots of windows looking out onto gardens. I’m not painting a great picture here am I – it was fresh, new, bright and colourful. There were a lot of facilities; a sensory room, a soft play room, a large lounge, a hydrotherapy pool with a jacuzzi, a complimentary therapy room, a music room with every instrument you could think of and huge gardens. It was almost what I’d imagine a private children’s hospital to be like (do they exist?).
The major difference from any hospital I’d experienced, was my involvement and my respite. Throughout the tour everything revolved around Jaxon and me. Complimentary therapy for me. I could use the pool and jacuzzi whilst they had Jaxon. I was told they could do all of the fun stuff with Jaxon whilst I relaxed knowing he was taken care of. This was new to me. In hospital you’re frowned upon if you go home to wash your clothes never mind actually look after yourself. Here they seemed to understand I was on the rollercoaster with him.
It was clearly well organised. They explained for Jaxons first stay I must stay too (I wouldn’t have had it any other way). During this stay I could chose to stay in his room with him or in a flat on the 1st floor above him which had easy access to the floor below.
I don’t know what I expected, I knew they did respite yet having been driven an hour away from my home to an unfamiliar area, discussing Jaxon staying there when I don’t drive evoked mixed emotions. They seemed great, the best childcare I could ask for, and I could get a break. I could be human for a weekend, or more if I wanted after this first stay. That was scary. Although we could also stay here together and I’d be relieved of home chores, able to enjoy music, the pool, the sensory room with him, without the chores of medicating and tube-feeding him. OR I could get a massage whilst they did messy play with him. So many options. So much for BOTH of us. I could enjoy myself whilst HE enjoyed himself with people that are trained and experienced in both medical care AND play therapy. So many plans could be made with access to this amazing little peace of heaven.
Why did I feel so emotional about it? Why did I want to cry? Was it happiness, relief or realisation of what state your life has to be in to be granted these services? I felt so lucky and appreciative yet so confused and overwhelmed.
The end of life option was briefly and gently broached as a topic for future conversation if needed. It was dropped in the tour tactfully and with compassion. I expected it, I’ve had many conversations about the possibility of my son dying, it wasn’t anything new or shocking. Paperwork meant I’d already heard there was the option of hospital, home or a hospice. The three H’s. Even before visiting the hospice I’d decided that would be the place. Home would be traumatising, hospital was associated with negative experiences, hospices were built for that purpose. Now after viewing it and feeling the support from a one hour tour, I knew that would be the best option for both of us. I also knew I shouldn’t have to think about such a thing.
The tour ended and I was sat down to go through any questions. I was informed that each family gets allocated a number of hours/days/nights per year. Many families are on the ball and book way in advance so planning was key. I would be allocated a family support worker. They were going to look into any funding for travel for me, it wasn’t the norm but they understood the difficult position I was in. They put in a request for a massage for me at home (yep, the therapist would come to me!) and music therapy for Jaxon at home!
I left overwhelmed by how amazingly supportive this place was.
Later that afternoon the lady that showed us around left me a voicemail that they had allocated me a family support worker, it was her. I was happy with that. She also offered to put in a request for baby massage, informed me she had applied for funding for transport and let me know she’d booked us in for our first stay at the end of October, smack bang in the middle of my final placement – perfect.
This life is not easy but services like this give parents like me a small peace of happiness and some very needed support. If you can, I would be very grateful for any donations to the hospice. They only receive 15% of their funding from the government meaning they rely on donations to be able to give a little life to some very deserving families. You can donate here.
Thank you for reading.
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