Taking Care Further – Hospice at Home

So much has happened in the last week that I would like to blog about but one of the side effects of grief that I hadn’t fully appreciated is my complete inability to concentrate on anything for more than two minutes! Given this current affliction, that I’m confident I will recover from in time (probably about the same time I start sleeping through the night rather than waking up and listening for noises) I am not going to blog about Dad’s death just yet, not in detail. I’m also not going to blog about how I’m left feeling, not yet, but I promise I will in time.

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The one thing I didn’t want to wait too long to blog about was the absolutely amazing and life changing support that we received as a family from the Hospice at Home service provided by Rowcroft, our local hospice. I’m going to try to explain a little about Hospice at Home, how we came to meet these phenomenal people, and the difference it made (all in spurts of two minutes concentration). When Dad received his terminal diagnosis I suspected that we’d be involved with Rowcroft in some way, but never could I have predicted quite what a difference it would make.

Dad had a two week period as an inpatient at Rowcroft towards the end of his life, this happened once he actively decided he wanted no further treatment from the medical team at the local hospital. Before that he had met a number of social workers from the hospice and the one that made a lasting impression on Mum was Lynne (she never stops talking about how lovely she is) and he had also been receiving support from a specialist nurse, Tracy, who did a great job of coordinating the different aspects of Dad’s care, of coming out to the home to visit my folks, and of generally managing to focus on what Dad wanted and how we could all work together to achieve that. It was Tracy who arranged his inpatient stay and it was following her visit to see Dad at home a couple weeks later that the Hospice at Home service arrived in our lives. We’ve a lot to thank her for.

The Hospice at Home service does it exactly what it says on the tin. It is available to patients in the last two weeks of their lives, and it provides them with invaluable support to enable them to remain in their own home. It was only after Dad left the hospice that he decided he wanted to die at home. When we had discussed it previously he wasn’t too keen, I think both him and Mum (and I would have been too if I was asked) were a little scared about how it would work, and I know that Dad told me he was worried about having bad memories associated with our family home which has always been such a happy place. I can reassure you that our family home has only been enriched by the memories we have formed in the last two weeks, and the people who we have met and who became a part of our family for that short period; I believe that Dad had a fantastic death, there were ups and downs and some scary moments, but Dad wouldn’t have had it any other way. Dad lived his death much the same as he lived his life, and his illness – with a stubborn determination, a sense of humour and a positive mental attitude – all in his own way. The Hospice at Home service* enabled that to happen.

Dad died on a Thursday morning and we had someone from Hospice at Home with us 24-7 that week. We nearly bit the Sister’s hand off when she offered us someone to do a nightshift that Saturday. Dad had been getting worse since the previous weekend and we were all exhausted from lack of sleep, we had brought a baby monitor which meant we didn’t need to be sat in with Dad all the time, but by this point it was beginning to be a mixed blessing because it meant we were constantly up in the night when Dad was coughing or dreaming! The first night Mandy stayed, she came with her own hot water bottle and blanket, she walked into our home having no real idea of what she’d find and she just fitted in. She was professional and polite but had no airs or graces. She was amazing with Dad (who was still awake some of the time then), patient and interested with Mum and myself, and friendly with the dog and cat. That night I was on my best behaviour and went to bed intending to keep out of her way….but it didn’t last, I was awake twice in the night and popped in to check Dad and Mandy were ok and I can’t tell you how ok it felt to be wearing my PJs in front of someone I’d met less than 12hours earlier!

That was a theme that continued really, both me in my PJs and the comfort and ease at having these people in our family home. Mandy covered the first night, Mum and I managed Sunday day time on our own but were relieved when Tracie arrived for the second night. At this stage Dad was declining quite a lot and it was a big relief to goto bed knowing there was someone with him – nights and weekends have always been the hardest and it made such a difference to know that there was someone there looking out for Dad and to provide support for us if we needed it.

From Monday we were lucky enough to get 24 hour care and support. Monday morning saw Jane come, Monday afternoon-evening was Elaine (that was the Spotify night but that deserves a post in its own right another time), Monday night was Lisa. Tuesday morning Jane was back and she persuaded me to goto work for my leaving do (with Mum’s encouragement too) as it was what Dad would have wanted (he’d told me as much the week before) – at this stage I was fairly convinced that Dad wouldn’t die if I was with him so I completely expected he would have died by the time I got home (I was out for 90 mins – another blog post required for my amazing send off – another time) but he hadn’t and that felt like a huge weight had lifted.

Tuesday afternoon-evening saw Chris come into our home, by this stage I was seriously frazzled and couldn’t believe Dad was still with us – it was my cousin’s birthday the next day (Dad’s favourite niece – not that he ever had favourite’s you understand) and I was desperate for him not to die on her birthday; Chris was very patient, almost zen like and she simply pointed out that Dad would go when he was ready. I felt ridiculously guilty at the time, thought she must have thought I was some awful daughter wishing him away, but it really wasn’t that. Dad surprised us all anyhow because he lived past her birthday. Tuesday night saw Mandy back again after a few days off, Wednesday morning was Karen’s turn, Wednesday afternoon-evening Chris was back again and Wednesday night Mandy completed her hattrick. Dad died at the end of Mandy’s shift, she was due to leave at 7am and he died just before with Mandy and (blonde) Sister Sue with us. Lovely, lovely Elaine was due to be back with Dad on Thursday morning, she had shared our playlist hijinks and I think she had seen our little family at it’s most mad, and she made him respectable for the undertakers and kept us all company.

In addition to the people I’ve mentioned above we also got to meet the two Sister Sues (one blonde and one brunette), Sister Anne and the legendary Sister Clare whose reputation preceded her. Clare’s staff raved about her, I’d done some internet digging and knew that Clare was special, and most importantly Clare was on the poster at the bus stop outside Torbay Hospital – Mum have regularly seen that poster but never had we appreciated what a difference the service would make. When Clare visited she told us a little of the history and that she had been involved with Hospice at Home since it’s inception, we have a lot to thank her for. Night sister’s have drivers and the whole service is coordinated by Teresa during the day and I’m sure there are lots of bits of it that we don’t understand but we are grateful for none the less.

This post doesn’t even begin to tell the full story, it doesn’t really speak about what these brilliant people did, they gave him medication, kept him comfortable, changed his position, washed him, joked with him, spoke to him, calmed him, held his hand….the list goes on. What they also did was support his family members and friends and share the experience with us, by being part of it but also by sharing themselves. We learnt about their families and friends, previous experience, reasons for doing the job they all do, bits about their childhood and upbringing – it could easily have felt like an onslaught of strangers in and out of our home, but it didn’t to me, these were people who were sharing in our journey and sharing themselves with us. Really, really special.

I’ve raved about the support we received to a few people and most people respond along the lines of ‘Glad to hear it, but wouldn’t you expect that from a hospice’? Quite simply no, there is a world of difference between what you hope for or what you expect and then what you experience. So often since Dad has been ill we have had our hopes and expectations dashed – usually by a poorly under-resourced system rather than any individual – but no, I couldn’t have hoped or believed that the support we received would have been as good as it was. Rowcroft’s support, and particularly for us the Hospice at Home support, really did take care further. I really couldn’t have wished for a better death for my Dad, or better support for us as a family.

We’ve requested donations in lieu of flowers at his funeral for the Hospice at Home appeal, and watch this space I can imagine there will be a few more attempts to raise funds or awareness over the coming months.

*I’ll write a blog post another time with other people who played a pivotal role such as the Community Equipment Service, the District Nurses and Dad’s amazing GP (and his equally lovely secretary) – it really was a team effort.

JANUARY 2013 Update: I’m delighted to share that the retiring collection at Dad’s funeral raised £911.03 for the Hospice at Home Appeal.

I’m also honoured that Rowcroft Hospice have featured an extract from this post in their newsletter to help raise awareness of the fantastic work that they do.

If you would like to know more about the hospice, their amazing services, or would like to make a donation yourself please visit their website by clicking here.

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