My Homecoming, Spaghetti Carbonara & the Starship Enterprise...

emergency_320.jpgGood afternoon all,
I am speaking to you directly via the computer today, so hopefully there will be fewer interruptions and less backchat than when I use the wife/typist! She’s a good girl really and she is right about the tsunamis that occur occasionally in the otherwise still waters of our relationship caused by the current predicament. I will however leave it to Louise to tell you about these as I feel she is far better placed to do so, also if I tell you then every dispute will obviously be her fault!

I thought I’d tell you a bit about my last few hours at the hospice and my homecoming of yesterday. Before I do that, I would like to say an enormous thank-you to all the staff who took care of me at St Michael’s [Hospice – Ed.]. Of course I have my favourites but it would be unfair to name them, besides they know who they are! Whilst people may wonder how I tolerate the washing, the toileting, the feeding and the dressing, I could not ever be the one to give such cares, day in and day out, to terminally ill people and not become emotionally shattered. But not these nurses: they are professional, kind and act as emotional punch bags for people such as myself and come back to work the next day, every day.

After a morning spent sleeping, Louise arrived with my brother and friends, Simon and Rhona, to swiftly pack up my room. Until this point all I felt was tired. Then the ambulance arrived and I was hoisted onto a stretcher and strapped in. It was only then that it hit me, I was going home. The tears welled up as I was pushed past the first member of staff, however I managed to hold them back. It was only as I was pushed through the front doors and I scrunched up my eyes against a brilliant blue sky that they began to flow freely down my face. This continued until the ambulance stopped outside our house. Then began the series of shenanigans which culminated in my being settled in my armchair in its usual place in the front room. After the dust had settled, about 20 minutes later, my emotions got the better of me as I surveyed the familiar surroundings which had felt so distant just hours earlier. However, Louise put paid to my behaviour by mopping my face with a tissue and pointing out my boy cavorting in the background. You know the rest.

Strangely, throughout the above I had a craving for my wife’s spaghetti carbonara. It is undoubtedly the best in my world and probably yours too. A bit of a daft thing to crave as I can’t have spaghetti unless it is chopped up, and even if it is the cheese will stick to my throat and try to choke me!

So, I’ll leave it there, as I sit in my profiling chair, cantilevered table hovering over my legs, on which sits my laptop and microphone. I feel a bit like Captain Kirk!
Much love,
Neil x

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When Neil had started his two week stay at the hospice it had crossed all of our minds whether he would make it back home again. I was so sad for Neil, that he was only able to experience being outside by being strapped onto a stretcher now, and only to travel between hospice and house, in the back of an ambulance, not even able to look out of a window for the journey. It was no wonder the daylight and fresh air hit him physically and emotionally.

For so long I had been feeling like this house was not our home and just somewhere we had landed for Neil to die. It was not a natural feeling of home, it was a situation with no privacy, with care workers and health professionals as part of our daily routine, and as much as I loved having friends and family around, they were there because they were working as a tag team of help. We had packed up the fourth member of our family, our cat Harry, she had gone to live at my parents house, she was too much for the situation and the volume of people was stressing her out. I wouldn’t see her again till Neil had died. I cried uncontrollably the day I sent her way, seeing her packed up in the car, not because of how much we would miss her, but because yet again, the disease was taking away choice and something we loved. Lifestyle choice is part of what turns a house into a home – it didn’t feel like we had much choice about anything left.

Seeing the relief on Neil’s face at crossing the threshold of this house once more was enough to make me realise that home was wherever the three of us were together. I knew that definition would soon change, but while we still had Neil and despite the intrusive equipment, the emergency numbers on the fridge door, the mountain of medication on the window sill, the sticker on the front door to alert ambulance crews there was a DNR instruction on the fridge; despite all of this and the constant sound of the ventilator.... this had to be home. – Louise (2013)

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These were the comments on Neil’s original post:

Andrea Kler
January 29, 2009 at 7:14 pm
Hi

Just got back from my day trip to Bedford and as usual, getting my dose of ‘plattitude’.

Neil, you sound so much chirpier now you are at home again, I am so pleased.

Hope it will be ok to come and see you at home sometime.

Take care and love to you all.

Andy xxxxx

Peter
January 29, 2009 at 7:26 pm
Glad to know you are safely back home and you are enjoying the home comforts and home cooking.

Perhaps as an ex DT specialist you could devise some type of spaghetti chopper which would help people like you and me. I find it such an anti-socialable food, hanging out of peoples mouth, dropping back onto the plate, it’s like eating string! Quite rightly as you say it needs chopping up. Ann can never get the quantity correct- either we have mile upon mile or we are still hungry. She also has similar problems with pasta (mentioning pasta, have you been watching your favourite musical recently?)
Perhaps a starting point would be spaghetti sold on a reel!

Keep smiling Neil,

Best wishes
Peter

buddy
January 29, 2009 at 9:01 pm
Well beam me up scotti..lol ( sounds like fetish instructions to ………I digress)
“Welcome home”, must be fantastic to se your family again.

(I hear its hard to get comfortable in your chair) there are a lot of people out there that think they can change the world from the comfort of there chair,
(“ hi send this email to everyone you know an we can “stop, “change”, “help”,)
this or that person etc etc etc BULL –IT!

There are web sites with lists full of all those fake emails. Sending crap emails like that does nothing for nobody!!!
(double negative infers it does something for some one, yeh keeps those idiots happy)

Comfortable or not, people with your courage and strength, can change the world from their chair, “THANK YOU”.

On a lighter note. Good to know you have willing help at hand when you need your arse cheek moving.
I know that dark haired helper that pops in 3 times a week “she could beam me up” any time she wants. I’ve heard she does a wicked sausage casserole.. “on my life.”

Love Neil, Neil love x

Brian
January 29, 2009 at 10:02 pm
Welcome home, mate.

Set course for Guiness. Warp 8.

Lu
January 29, 2009 at 11:34 pm
Evening Neil,
Love to read your blog.
You, Louise are an inspiration.
I love the tail about the desire for a spagetti dish. A little bit of what you fancy does you good.
When my dear and precious mum had Mnd ( bloody darn thing) she once said i would love a macdonalds. To my surprise and horror i said a meal that you always said wasn’t even food! Mum had decided to have a peg fitted early due to her having ms for 36 years and her health wasn’t too good. Anyway she devoured the disgusting burger, very slowly. I was ready for the abdominal thurst. But with due her care and attention in swollowing the burger it managered to hit the spot. I hope i am not boring you but Mum had a wish list and on it was to go away as a family to a Warner hotel Niddhall. We had so much fun devising and attending to this list. When we arrived at the hotel Dad my sister had our evening meal. We were putting Mum to bed, not in the professional manner it was very much heave how and in. When Mum had lovenly landed in bed i took the belt from around Mums waist, to my horror not only did the belt come away but i had Mums peg and ballon in my hand. Well Mum just layed down and laughed, we had been feeding her Gin and T’S down her peg all night, which was fortunate . My sis was like a head less chicken. I rang receptionist and she was sent to Harrogate a@e to have new pag fitted at 12midnight. At three oclock i went with Dad to pick her up ( i was heavily pregnant at the time)thats why my sister went with her. Well this was the highlight of the holiday. The next eveing at dinner we laughed about the incident and how mum had filled a little hole at a@e the night earlier. I do hope i haven’t bored you and its not a tale that “you have to be there to have enjoyed” What i mean to say is enjoy every last minute of the experiences with family as you appear to be doing. Lifes shit but making the best of it makes it somewhat bearabble. Excuse my spelling I could do with a Louise to type for me.
Night god bless Look forward to my next installment on your blogg
Love Lou xxx

Stephen
January 29, 2009 at 11:45 pm
‘I cannae Hold her Any more Captian- she’ll blow!’
That was meant to be Scottie from Star Trek, though having just typed it I realise one can read anything into that they want.
Glad to hear that you’re successfully back at the Helm, Matey. Reading of your feelings on returning home really hit home, there is after all no place like Home (God what awful prose due to repetition- that wouldn’t get close to the smell of print if there was an actual Publisher involved- the beauty of Blobs!).
Seriously though, with my eternal optimism I never had a doubt that you were at the hospice for another break, and would be back with your family when your stint ended. It is so easy for the rest of us to forget the boredom, the relentlessness and the pain you feel when being away from those you love more than anything. When I’ve left your house after my trips to see you Squeeze and Oscar, I have always felt mixed emotions- the unavoidable sadness, happiness that you have so much love and support from the ever present and rotating cast and crew, fatigue (nothing compared to that of others) and that odd feeling of not wanting to leave. However, when I left you in your room alone after my last visit at the hospice, I was deeply affected…you were alone.
In other words, I can only say how glad I am that your back where you belong!
Stay strong an ever.
See you soon on the Good Ship Platt!
Love as always- 2nd Mate Murphy. (Or is at Cabin boy?)

Kathy Turvey
January 30, 2009 at 1:46 am
Hi Neil, Louise & Oscar,
Glad to hear you are safely installed back at home. You sound much happier. Louise if you ever fancy a holiday in Australia let us know as it would be great to meet you and Oscar and maybe taste some of your carbonara! Speaking of which would you be able to blend it for Neil or does it lose something in translation? I know so little about these things.
I wondered if you had heard anything on the interview that was done in the hospice, i.e when it will be published?
I think the idea of bathtime at home is a great one as it would allow you and Louise some more private time. I just wish we lived closer so that we could help out a bit. Although it does sound as though you have it well covered.
I read Ricky’s entry it is amazing what the human spirit can endure isn’t it? I am not sure I could be as brave as either of you.
My biggest challenge in the health stakes so far is Post Natal Depression (not much of challenge compared to either yours or Ricky’s.) Which I developed after having our second beautiful child Carys and am still being treated for. I am not a very open person when it comes to this and so consequently even most of my family don’t know. I am only telling you (and the millions of others who read this blog) as it is part of the reason why it blows me away as to how open and honest you both are. It is truly appreciated. It’s also how I know I wouldn’t be as brave as you. PND is nothing like MND but in the early days before I really knew what was happening I spent a lot of time feeling sorry for myself and not wanting to get out of bed. Fortunately I have a really good GP who has picked me up, dusted me down and set me off again to enjoy life and my very supportive husband and two lovely kids.
Nathan wasn’t in the least bit bothered by his two injections that I was stressing about he didn’t even cry. Oh well you have been saved by Carys coming in to me on all fours woofing like a dog. Demanding my attention. Not sure if Oscar has reached this stage yet? but it is a beautiful part of their development when they start the role playing.
Sorry to have babbled on a bit.
Love to you all
Kathy x

Jane
January 30, 2009 at 10:55 am
Hi Neil and Louise,

You won’t know me but I’ve come across your website in my trawl of the net to find MND blogs. My husband, Richard, died last August (aged 48) of MND and we too maintained an on-line blog during the last 21 months of his life, to keep our friends and family informed of what was happening and to spread awareness of this awful disease, just as you are doing. (Richard wanted me to publish his diary, so I’m just seeing what other books and blogs are out there).

I have just read right from the beginning of your blog and so much of it brings back memories of the love and strength that you get from the friends and family around you. Richard, like yourself, loved me to read out all the comments we got and I managed to do this right up till the day before he died.

Neil – I read your entry about ventilation with some horror – Richard was “lucky” (if you can ever call anything about MND lucky?) that he was well-informed about ventilation and so chose not to go go down that route. But it has bought you time with your lovely little boy, so maybe it’s not all bad? My two daughters were 18 and 15 when their father died.

Louise, I know only too well the endless pressure of being wife, mother, carer and general all round dogsbody and the “never-endingness” of it all. Keep strong and face the future with courage. It is surprising, actually, how much I miss the blog now and the daily close contact I had with so many people from all over the world. I still dip into regularly and it brings Richard “back” to me for a few moments.

God go with you, my friends.

Jane

Aunty Pau’s & Uncle Mel
January 30, 2009 at 12:35 pm
Hi Neil
You do sound a lot brighter and good to know you had a fancy for something to eat. Just keep having everything chopped smaller and hopefully it will be easier for you.
Have you tried having spaghetti broken up into small pieces, cooked well, drained and then put into Heniz tomato soup, it is really nice, this is a recipe from my school days – god years ago!
Have good weekend all,

Love and hugs to all
Aunty Pau’s
xxxxxx

Amanda
January 31, 2009 at 2:40 pm
Welcome home Neil! Sara and I send hugs at the whole family, and if Fiona will stop drooling on her doll, she’ll send some drool your way too. Her favorite gift these days. Thanks so much for the blog.
XO
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