Home Sweet Home

Hi everybody, it’s great to be back home after two and a bit weeks in the hospice. My stay was comfortable and had perks such as reflexology, head massage and Reiki, but most importantly I had access to a bath. I would like to say thank you to the staff at St Michaels who took such good care of me.

But there is no place like home, particularly when it comes to watching Oscar who is growing ever more rapidly. A huge smile comes to my face every time he comes into the room, which is now more often than not under his own steam.

I will write more over the next few days but it may interest you to know briefly that we have hopefully resolved the Advanced Directive issue positively, more details to follow so watch this space.

Speak Soon
Neil


Imagine if you’ve had nothing but bed baths for weeks, imagine how you would feel to be submerged in water and feel weightless when you’ve been unable to lift your limbs. It was a great luxury for Neil and really lifted his spirits.

It took four of us to move him from his room. We had to have him undressed and ready to be lowered into the water, then put the sling around him for the hoist (which can’t have been comfortable for him naked) then we had to carefully position a towel to protect his dignity for the journey from his room to the bathroom.

It took two people to maneuver the hoist, a third person to stop his body and legs from swinging into the doorway and keeping the towel in place, and a fourth person to carry the ventilator and keep their attention on his mask to make sure it wasn’t slipping. There was a tense moment lowering him into the water and undoing the sling from the hoist but once we had positioned him and he was happy that he wasn’t feeling like he could slip, the nurses left and gave us a bit of time alone. I had to be careful washing his hair,  I couldn’t get water near his nose and mouth or get shampoo in his eyes. I took the opportunity to cut his nails while they were softened with the water. He was very trusting. There was an alarm button very near the bath, if I got into trouble or he started slipping I only had to take one step to hit the red button on the wall.

It was here we had conversations about the future. Being at the hospice gave us these moments. When we were at home there was always too much to do or too many people around to find a quiet moment to talk and we hadn’t wanted to acknowledge the need for these difficult conversations earlier on in his progress when we had more privacy.

He told me I would meet someone else. He didn’t tell me he wanted me to meet someone else, just told me as fact. I think it was the only way he could talk about the subject. I knew the thought of another man bringing up his child was heartbreaking for him, it was heartbreaking enough for him to watch his friends push the swing and be the ones to make Oscar laugh. He couldn’t do much to entertain a one-year-old while sitting motionless in a chair, and it was difficult to think of ways to make Oscar interact. These are the little things that make MND earn it’s title of ‘cruel’. Neil also knew that Oscar was too young to develop memories of his father or his decline. He had to trust that I would put Oscar in good hands, and I remember his words being: ‘Just make sure he’s not an arse!’ For this he managed to muster up one of his cheeky smiles, rather chuffed with himself that he knew I would remember his final words on the matter.

I phoned ahead one day at the hospice to say that Oscar had started walking properly and asked if they could push Neil up to the window to see him walking from the car. The night before Neil went in to the hospice, Oscar had taken a hand away from standing at the sofa and walked across the room to the door. Unfortunately, Neil hadn’t been facing in the right direction to catch it, and no matter how much I encouraged Oscar, he wouldn’t do it again. I had bought Oscar a little children’s rucksack in the style of a turtle shell to help him walk as he was also going through that annoying little phase of not wanting to hold my hand. The little rucksack worked wonders and gave Oscar the confidence to start walking. I’ll never forget how proud I was walking Oscar from the car with Neil watching at the window and a circle of nurses around him all smiling.

Oscar_walking_320.jpgThese two weeks at the hospice had been good for Neil. Having a doctor on site checking on him daily had meant that his drugs were now properly balanced and he had less stomach upset as a result. It had been a change of scenery for him, he had been able to put his trust in others and he had been given relief from feeling like he was a burden on his family. No matter how we treated him, he couldn’t shake that feeling away, so having a chef that would tailor meals just for him, along with the alternative therapies and the attention and conversation from the fabulous staff there meant he had been able to enjoy some of his stay. But as Neil says, there is no place like home, and although this house wasn’t our home, we were all three back under one roof. – Louise (2013)

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Showing 5 reactions


commented 2016-06-09 17:47:45 +0100
Yesterday I watched the documentary and here I thought paranoid schizophrenia was the most cruel sickness (My sister who died 2 years ago suffered from this and from colon cancer). While watching it I was crying like a lunatic. It really touched me. Now the next day I am still reading the blog and here I go again. Thanks for sharing and make people more aware of this horrible disease.
commented 2013-04-11 15:59:38 +0100
Comments on Neil’s original blog post:

Jane and Brian
November 19, 2008 at 11:18 pm
Welcome home, Neill! I’m sure everyone’s happy to be together under one roof again.

Do try to bathe regularly, though, won’t you??

Lisa Stefanski
November 20, 2008 at 10:49 am
Hi Neil & Louise,

..Glad to be home? There is no place quite like it!
Glad to hear that you have resolved your advanced directive. Do let us know what is happening. It’s interesting stuff, especially with such a delicate and important issue. Now you can enjoy every day that you have with your family without having to worry about it.

Take care all of you, Love as always.

Lula & Rick x

Brian
November 20, 2008 at 12:12 pm
Glad you’re home, mate. Hope everyone got a break.

All our love,

B&G

I’m Colin McLaren
November 20, 2008 at 12:59 pm
Welcome home love

Will trot down soon to pilfer your Bassetts stash.

best wishes

Colin of ‘And Anita’

Aunty Pau’s & Uncle Mel
November 20, 2008 at 5:49 pm
Uncle Mel & I are so pleased you are back home where you belong – thought! how about a hot tub on the patio with marquee round it, we could all join in and have a drink!!!!

love you loads xxxxxxx

Bryce
November 21, 2008 at 12:29 am
Welcome home ‘son’
Love to see you soon
Bryce ‘n Jane xxx

Jill Valentine
November 21, 2008 at 2:46 pm
Really hope you have the Advanced Directive situation sorted Neil. The prospect as outlined by you was really barbaric. Great that you had a successful break at the hospice I’m sure all of you will feel the benefit. Jill Valentine

Michelle Htun-Kay
November 21, 2008 at 11:34 pm
Mate. Great you are home. Now you can leave your socks and find them exactly where you left them (just kidding – I know Lou will tidy them, or Oz’ll chew ‘em….)

I’m off to Colombia next week. Can I bring anything back? A kilo?!

TK

Al & Jean
November 22, 2008 at 10:57 am
Hi Louise & Neil
We are so pleased to hear the situation has changed and you are more in control again. I hope this will help you to relax and enjoy being back together all the more, especially with Oscar on the move – that little boy is such a blessing.
Love from us all
Jean

aly
November 27, 2008 at 11:30 am
Glad to hear the legal side of things has been resolved and that you were able to get a rest. Just want to take the opportunity to say how much I admire and love you both. I’ll get my fund raising thinking cap on

Tim
November 27, 2008 at 11:30 pm
Lovely to speak to you tonight Neily, glad you’re home and doing good. Hope Louise feels better soon, i shall get up to see you all as soon as i can:)

Lots of love

Tim

Cousin ade
December 3, 2008 at 9:15 pm
Now then cous

Damn i didn’t get chance to throw you down the hospice clothing chute !! somewhat concerned about all the empty guiness cans i saw on my recent visit. either you havn’t changed your drinking habbits or there are some very drunk carers around. glad your home sunshine.

love always

adi
X

Auntie Margaret (ex Smith)
December 12, 2008 at 10:49 pm
Hello Neil,
Do you remember me. Ive changed lots of your nappies in my time. Hahaha!
I just wanted you to know that I am thinking of you with utter admiration, every day.
I wish you love and peace and also your lovely wife and,not forgetting Oscar.
My thoughts are with you.

Auntie Margaret xx
commented 2013-03-21 13:02:22 +0000
Well Lou, He’s definitely not “an arse.” x
followed this page 2013-03-21 13:01:12 +0000
@breathingfilm tweeted this page. 2013-03-18 15:48:06 +0000
Neil is back at "Home Sweet Home" after enjoying 'luxury' baths at the hospice... #Plattitude #MND #ALS http://www.iambreathingfilm.com/home_sweet_home?recruiter_id=2
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