On a Dark Desert Highway

Hi everybody,

Thank you all for your responses to my earlier posts, particularly the ones regarding the Advanced Directive debate.

I have been thinking about this and all the other associated issues quite a lot over the past week as I have had an unusual amount of time on my hands. The reason for this is that last Friday I was kicked out of home and left to free-wheel down Forest Lane until I was taken pity on by the driver of a flatbed truck who craned me onto the back and kindly dropped me off at the local Salvation Army.

OK but what really happened was that I started a two week period of respite care, and so this post is brought to you from the comfort of my room at St Michael’s Hospice in Harrogate. Since moving from London to Harrogate at the beginning of April this year Louise, our families and our friends have worked tirelessly to look after me, and as a direct result are all now completely knackered! After discussion with our care team we all agreed that a short break for my non-professional carers would provide an opportunity for them to re-energise, whilst at the same time providing the necessary care for me in a friendly and comfortable environment.

I originally viewed the thought of entering any institution with trepidation and a certain degree of fear. These feelings were entirely baseless, having had no previous experience of a hospice or care home, but were primarily born out of the stigmas that such places carry. I am delighted to tell anyone in a similar position that the reality for me has dispelled those preconceptions and fears as my room is very comfortable and the staff friendly and helpful.

The level of care is meeting my needs far better than I could have hoped for. It has also allowed me time to spend with family and friends in a way that otherwise would not have been possible. For example yesterday was our wedding anniversary, and for the first time in a long time Louise and I sat and watched a movie, shared a bottle of bubbly and held hands for three and a half hours, it was like being somewhen else.

I will let you know how my next week goes, but until then please keep your comments and questions coming.

Much love, Neil


'Trepidation' was an understatement. Neil had been digging his heels in for weeks about the hospice as several health professionals had been suggesting it. He was scared of going to the place where people go to die. I think anyone would have the same feelings, and Neil wasn't ready yet. He had also become so reliant on the people close to him, that knew how to look after him, he was understandably terrified of trusting new people to cover all his needs and keep him alive.

He knew that his loved ones at home would listen and feel for the slightest gap in the seal of his mask against his face. He knew that we would come in to a room just to move a hair from his brow or lift a pillow by just an inch to ease some pain, and how to have his chair tilted and adjusted to exactly the correct angle for the hoist to lower him in comfortably, but most importantly of all, he knew we were listening and listening only for him. It took a lot of courage to put that trust into strangers.

I had been almost as nervous as Neil the first night he was in the hospice. The staff had admitted to us that they hadn't seen someone with Neil’s level of care requirements for ten years. They had done as much as possible to make sure Neil was accommodated properly, and we spent most of the day getting him there and settled in. His brother Matt and I packed everything we could think of that he would need, but we were still nervous that we may have forgotten something vital.

I hadn't had time to realise that it would be so quiet at home, just me and Oscar. The normally hated sound of the ventilator wasn't there, and I couldn't relax without it. The respite was there so that I could get some rest, but I hardly slept at all that night for worrying about him. I had given the baby monitor to the hospice so I was worried about Oscar too, I think I eventually slept on the floor in Oscar's room, just to relieve some anxiety.

The next morning I bundled Oscar in the car first thing and drove straight to the hospice. I didn't want Neil to wake up without us. I remember the road being really quiet, it must have been a Sunday, and autumn leaves were blowing across the road. I don’t know if it was the leaves or just my sheer exhaustion, but I didn't see the rabbit run until it fell under the wheels of my car, I just couldn't hold any of it back any longer. I must have sat in the car and cried for five minutes, not about Neil but about the rabbit. It felt so unfair, that I killed something on the way to the hospice, I couldn't quite make any sense of it, and there was my beautiful baby asleep behind me in his car seat, oblivious to all the emotions of the day. The hospice staff calmed me down, no emotional mess that came through their doors seemed too much for them to care about, they were a relief.

Neil, despite being an animal lover, laughed at the mess I was in, told me to 'man up', and asked me what the hell I was doing at the hospice instead of resting at home. Our friends arrived later that day and one of them gave me a 'circle of life' talk, said the dead rabbit will have provided much-needed food for another animal, and it was only then I could put the whole thing into perspective, and separate the emotions of killing a poor rabbit from the emotions of having a dying husband.

I know I won't be alone in experiencing these outbursts. Your own emotions get buried when you're caring for someone and it's always an unexpected trigger that draws them back out.

I'm not sure 'celebrate' is the correct word for having a wedding anniversary in a hospice, but we did manage to have some time alone. For a couple of hours I felt like his wife, as there were nurses within shouting distance and I could lift a bit of the responsibility from my shoulders.

I pushed his chair across the room so I could sit in it next to his bed and joined him in drinking champagne through a straw in the bottle. I wasn't going to sit there with a champagne glass if he couldn't. We had a good couple of hours to watch a film before Neil got exhausted and we turned the baby monitor back on. My friend came to pick me up, and I think I managed to hold in the tears till I shut the car door. – Louise (2013)

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Showing 5 reactions


commented 2013-04-11 15:55:47 +0100
Comments on Neil’s original blog post:

Michelle Htun-Kay
November 7, 2008 at 11:19 pm
Hi Neil Tony here.

Michelle, Maia and I follow your amazing blogs with admiration and interest as you know. We’re so glad you’re comfy in your new surroundings, and that the gang are getting some good R&R too. However I half preferred the Salvation Army story!

As for your conundrum, the law is an ass if it prevents you from taking a course of action that you and the family elect. I hope a pathway is found soon that means you get what you want. I’d love to offer some sort of insight or direct line to Jack Straw, but I’m a bit impotent on both. If we can help, shout.

As for us, we’re good. Maia’s godfather taught her how to kick/punch me in the bollocks, which she now does whenever she can accompanied by uncontrollable laughter. Her aim is impressive – London 2012 comes a little too soon. Though I suppose I have an easy target(s)!

We’d love to see you soon, but it is entirely up to you guys what you can manage. Let us know, however and whenever.

All the best mate – and keep the faith

Tony

Al & Jean
November 8, 2008 at 12:27 am
Hi Louise & Neil

So glad to hear that your break in the hopice has worked out OK and that you managed to spend some “quality time” together. I’m sure it will help everyone to cope better having a short respite.
I did remember your anniversary but only after sending two emails already and I thought if I sent a third Louise would think I was having a brainstorm – like Edinburgh buses you wait months and then three come together!
I read your blog regularly with admiration and despair and think about you all the time.
Love from us all
Jean

Vivien and Dave
November 10, 2008 at 2:29 pm
HI NEIL AND lOUISE.
I HOPE YOU DONT MIND US PUTTING OUR TWOPENNYWORTH IN, AS WE ARE ONLY lORETTAS PARENTS, AND NOT FRIENDS AS SUCH. HOWEVER IT DOESNT STOP ME READING THIS SITE WITH GROWING AWE AT HOW YOU TWO ARE COPING.
WE BOTH FEEL VERY STRONGLY ABOUT DYING WITH DIGNITY, AND THE APPALLING INTERFERENCE OF DO GOODERS ON THIS WHOLE ISSUE. ALL WE CAN SAY IS THAT WHEN THE TEST CASE LAST WEEK WAS LOST IN COURT, THE REPORTER MADE A POINT OF SAYING THAT NO RELATIVE HAS EVER HAD CHARGES BROUGHT AGAINST THEM IN A EUTHANASIA CASE.
ANYWAY ON A MORE POSTIVE NOTE, WE HAVE A FRIEND WHO IS SUFFERING FROM PARKINSONS (I KNOW IT DOESNT SOUND VERY POSITIVE !), AND HE HAS BEEN READING YOUR SITE AND IT HAS BEEN COMFORTING TO HIM AND HIS WIFE. I WILL STOP WAFFLING NOW, AND SIGN OFF WITH ALL OUR BEST WISHES FOR WHATEVER HAPPENS, AND YOU ARE IN OUR THOUGHTS, AND MY PRAYERS (DAVE IS AN ATHEIST !!!)
KIND REGARDS
VIV AND DAVE

Brian
November 10, 2008 at 2:48 pm
Hah! Even during all of this, you still manage to make me laugh out loud with your intro. Hope the rest does you all the good. On another note, my arse STILL hurts from that hedge bouncing incident outside Potterrow in ’95. Hope Louise got my printed email to you.

All our love,

B&G

Jane and Brian
November 14, 2008 at 2:19 pm
Hello Louise and Neil,

Remembering very fondly the great fun we had at your wedding, and the fantastic family reunion opportunity you gave all us ‘oldies’! What great memories. And so touching to hear how you celebrated and enjoyed your anniversary together. Life in all its challenges still gives us wonderful moments to be embraced and cherished.

Just wanted to let you know that the tea is in the mail (with the cheque….! ) and should be arriving ASAP if the Swiss and UK mail systems can be trusted. Hope you think of the fun we had together here as you sip away at it.

Stay strong, keep your wonderful sense of humour and fantastic outlook on life – you are inspiring an awful lot of people!

Hugs and love from all the McElligotts across the Channel,
cheers
Jane and Brian (and Kayleigh and Jennie and Bud)

cash & scoob
November 14, 2008 at 3:18 pm
I am sooooooo sorry we forgot to send you a card for your anniversary guys!!!!

Bubbly & a movie sounds nice! (hope you didn’t subject her to Under Seige again Neil?? Theres a time & a place for Casey Rybeck!!!)

Belated big love to you both for the day anyway. Looking forward to seeing you all next weekend.

All our love

Scoob/Sniff/Alison xxxxxxxxxx

auntie sue
February 6, 2009 at 7:31 pm
Well my wonderful nephew neil it has taken some courage to go into
your very heartbreaking story you are such a very special nephew we have had some good laughs and special moments of fun together a specially when you were a little boy.
You are always in my thoughts you are such a special young man who myself and uncle john are proud to tell people you are our nephew.

Love you all the world and always will.
your AUNTIE SUE X X X
commented 2013-03-14 19:00:48 +0000
Here goes to adding more comments-I found this a difficult one today to read as I am sure it was to write- with additional small animal trauma! The daily re-blog from Neil with the added comments from squeeze Louise is a really inspired way to lead up to 21st June and there feels a really good energy being created here. Also, I thought that film-maker’s, Emma’s comments on Sunday gave new perspective to the reliving of this compellingly open, often heart-breaking, consistently inspiring story. Ps loved the fizz with straw straight from the bottle imagery!
commented 2013-03-14 18:16:13 +0000
I’m so glad you found the Hospice movement when you needed it. A close friend of ours was in a hospice last year. Their expert medical and general care made her so much more comfortable she was able to enjoy a large birthday party in the hospice complete with champagne and indoor fireworks (who cares about health and safety!!!). She said at the party that hospices are not somewhere you go to die but somewhere to go and live. They enabled her to really live her last few weeks with comfort and dignity and cope with the record number of visitors she received.

On a lighter note, what’s one rabbit? Our mean lean feline killing machine had 30 confirmed bunny kills last year. Unfortunately his slightly larger rounder idler mate ate the majority of them! Such is nature.
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