Trigger warning: Mentioning of death, end of life, palliative care. Though intended to be a positive and happy post, I understand that some of the subject matter may be triggering for some. I appreciate this is a sensitive topic, however I feel it is an important one to discuss and may resonate with others in a similar position to ourselves.
A hospice. What does the word hospice mean to you?
Prior to having Amy I think I only had negative associations with the word. You don’t want to need a hospice. A hospice meant dying, death, illness, or even missing out on the “real world”. And I suppose to a degree that’s all still correct.
Being plunged into the world that we are in has forced me to reassess what I previously thought about so many things. I had been grateful that a hospice wasn’t something I thought we would need. I had assumed that you only went there is gravely unwell (and still, this is the case for many, and I hope not the case for us in the future but a very real possibility that I try not to think about).
When Amy was born extremely unwell, we were taken to one side by a doctor and advised that she may not make it through the night. Still in complete shock and still dosed up on strong painkillers from the emergency c section, it was all a confusing haze. It was inconceivable to me that she may not survive, she had been perfectly “healthy” and well up until I went into labour, after all.
The doctor mentioned to us a “rainbow room” at a local hospice that they were considering she would need to be transferred to so that she could pass away peacefully in a less hospitalised setting. (The rainbow rooms are rooms kept at a cooler temperature so that the person can remain at the hospice until funeral arrangements are made. It is also for families to be close together in a homely environment surrounded by support).
Discussions were made about if she were unable to come off the ventilator. It pains me also to say that the doctor said if she did survive she would be a “vegetable”. It still sickens me to this day that someone could describe any living person as a vegetable. I understand that the doctor was giving us a worst case prognosis and trying to manage our expectations realistically, but to me, you can never presume someone’s level of cognition and no matter the severity of a disability we are all human and all deserve compassion, love and life.
My heart goes out constantly to those around us who have had to go through the journey of loss with their child. I think about them and their children daily. I cannot begin to comprehend how that feels. As I have been writing this blog I have shed a few tears in memory of those we know that have had to make those hard decisions, or indeed had those decisions taken from them. It shows why hospices are needed, and why we need to help these charities as much as we can.
Fast forward seven years and we have a lively, active, thriving child. Yes there are many challenges she faces daily, yes her condition is at times life threatening. We don’t know life expectancy. We take each day as it comes. But since those days, for 6 years at least, I had closed my mind to the idea of a hospice. To me it was something to be avoided at all costs until talks of end of life start to emerge.
I was wrong. The definition online for a hospice is “providing care for the sick or terminally ill”. But I think in reality it is so much more than that. It is providing all members of a family with emotional and physical support. It is creating valuable memories, experiencing new things, meeting new people. It’s about allowing everyone to recuperate in a positive, warm and welcoming environment. Yes, there is bereavement support, palliative care, loss. I am not here to sugarcoat the reality, but to explain that there is more to all of this than you may initially think.
We were referred to the hospice when I was struggling with carer burnout. The respite package we had at the time was great, but the lack of sleep at night and the tough winter we had experienced had rendered me no use. I worry constantly about burn out… which is ironic. I worry about not having the strength or ability to be what Amy needs me to be, and indeed the rest of those around me that I care about. It was something we considered deeply. Did we want this? Did we really qualify? I didn’t really like that we qualified for something that sounded so severe. Our little girl shouldn’t be entitled to these things. It felt unfair.
She doesn’t go to the hospice because she is currently very poorly. She goes as a place to be independent from her parents and be pampered and nurtured. It allows us as parent carers to have a much needed rest knowing that our precious child is in safe hands.
The first thing I will tell you about the hospice we stayed at is that everyone is SO friendly. We had the warmest welcome from everyone we met. Amy continually gave what we call her “royal wave” to everyone we met. We stayed for two nights. Amy had her own bedroom and we stayed in one of the flats for the parents to stay in. In future visits we will be able to stay at home whilst Amy stays there. The hospice is a home from home. Yes a lot of medical stuff happens here, just like it does in our own home. But it isn’t medicalised. It isn’t clinical. It is clean and practical, but without being like a hospital. There are nurses, and sometimes doctors, but there are swings, toys, soft furnishings and more.
The coronavirus has meant that our local respite centre still isn’t open. By this point we hadn’t had any overnight help for at least 18 months. Amy’s sleep at times can be bordering on non-existent. The prospect of a full nights’ sleep sounded too good to be true!
On the first night, we spent a few hours signing in all of Amys’ meds, going over her care plan, checking if the bed was safe for her and so on. Packing had taken me a few hours and I was worried I would forget something vital. I checked and rechecked labels on everything, wrote lists, triple checked.
I felt a nervous twinge in my stomach. At her usual respite centre they have known her for almost 7 years. These people are all new to us. What if she’s scared? What if something bad happens like a seizure or aspiration? What if they struggle making up her keto feed? No one else has ever made it other than me. The parent guilt set in. So often we crave a break, and when that break comes we are riddled with anxiety and guilt. I need her as much as she needs me. We kissed her goodnight and treated ourselves to a meal out locally.
It was our first meal together as a couple in almost two years. It was strange when we left, walking in the dark. We don’t really experience the dark. We stay home and watch TV most nights! Usually our attempts at a meal out involve a loud ipad, Amy becoming agitated as she doesn't like being in one place for too long, and indigestion from eating quickly so that we can leave! We sometimes joke at how us oral eaters are inefficient.. Amy being tube fed makes her much better at multitasking and she has more important things to do that eat!
During Amy’s stay she had two school friends with her who happened to be there at the same time. There are always different people mulling around and she loved watching them and meeting them… she’s very inquisitive!
She enjoyed the sensory room with its lights and projectors. She listened to music, watched TV (a huge one in her bedroom!), went for a walk, enjoyed the beautiful gardens, and most importantly - a bath! We don’t have a bath at home. It’s one of my biggest wishes for her. The bath had jets, bubbles and lights. I had made sure to send in bath bombs and bubble bath so she could feel truly pampered and enjoy a sensory treat. We met her downstairs after her baths and she smelt amazing, looked refreshed, and was full of smiles when greeting us. Her athetoid movements were notably calmer from the warm relaxing nature of the bath. It was beautiful to see. This is why we deserve to go to the hospice. So my child can be as pain free as possible, pampered, and cared for whilst we regain some energy so that we can continue to be what she needs when we are at home.
I now can’t wait for her next stay, and I bet she can’t either.
Thank you everyone at Francis House hospice for making our first stay so wonderful.
Thank you to those in our community that helped me to see that this will be a positive and valuable part of our lives going forward.