If you’re ever in hospital I’d ask you to
remember that Nurses are human so be nice to them, none of us like being
shouted at or demanded of, they’re Nurses not skivvies nor servants, they’re
highly trained professionals and they’re there to make you comfortable and
hopefully aid your speedy recovery so they can get you home. If things aren’t
right then fine raise your concerns but ask for a discreet word and have it
away from the patient’s bedside where just you and the nurse can hear each
other, you are both entitled to that level of dignity and privacy & remain
calm also, please not as we occasionally heard, please do not swear at them. We
always find ‘working with the team’ pays dividends. A good example is why start
ringing your buzzer when you can probably reach for that cup or plan your next
trip to the loo and not wait until you are so desperate. Julie would often say
to the nurses, “When you’ve finished handing out the lunches could you please
sort me out the commode?” Not rocket science but amazing how many seem to
appreciate this and I never thought I’d say it but it seems it’s the elder
generation that have suddenly lost their manners….
So back to Monday and I’ve headed to the ward early as we
don’t have a precise discharge time, things have to be done, a supply of drugs
to go home with, final checks, in Julie’s case a catheter fitted and then there
is arranging an ambulance to bring her home, amazing and despite my previous
blogs criticisms of the discharge process this worked perfectly with Jan from
the discharge team informing Julie & myself we were ‘good to go’ and the
Ward 26 team were so slick in making everything happen and keeping us informed.
So many Nurses were coming to see Julie giving her hugs, lol I got in on the
act too, felt rather spoilt by all the attention but there is a sincere warmth
and friendship with this team now, such was the bond tears were falling and it
was emotional all round. Julie’s ‘partner in crime’ Hannah, she’s clearly been
hit quite hard knowing Julie is ‘deserting her’ so much so she’s heading down
to the Cafeteria and Hospital front with Mum & Chris and I’ve agreed to let
them know when the ambulance crew are collecting Julie and where the ambulance
will be located, neither of the girls want to get emotional on the ward bless
them. I’ve made a couple of trips to the
car with Julie’s personal belongings and on hitting the ward there is suddenly
a flurry of activity, more Nurses appear “Julie the ambulance crew are here for
you”, more hugs, Kisses all around, Nurse Kim W is determined to see Julie
right down to the ambulance, such is the bond she’d have come home with us too
if she could. It’s fair to say it was a very emotional time as we left the
ward. I’d already messaged Hannah for Julie wasn’t being discharged via the
front door there is a discharge suite at the rear of the hospital. We got down
there and no sign of Hannah, Andrea & Chris, I’m under the threat of death
if Julie leaves the hospital without them saying goodbye. The ambulance crew
were brilliant and said they’d hang on for a few minutes and they had to secure
Julie and her stretcher. Kim & I legged it around the front of the
hospital, no sign of H,A & C! I ran into the front of
the hospital and they
were in the coffee shop, being an overweight out of condition asthmatic I was
like a wheezing knackered old greyhound as I barked out “quick Julie’s ambulance
was around the back and ready to leave. ‘Thankfully’ Hannah was in her
wheelchair and I think Chris and Andrea were considering entering the 100 metre
dash in the next Olympics, lol I jumped in my close by car and drove around. I
got there and Hannah was being wheeled into the back of the ambulance for a
most poignant goodbye, these two are now friends forever however long forever
will be… Andrea & I hugged, Chris & I did the bloke thing and as Hannah
exited the ambulance I bent down to hug her, I felt her tears on my cheek I’m
not sure if she felt mine; it’s daft for it’s just the moment, we will all meet
again but this day is charged with emotions.. I followed the ambulance calling
my Mum Maureen (yes I have a voice activated hands free kit) who is patiently
waiting at home for us.
 |
| Hannah & Julie in the ambulance |
I’d already warned the ambulance crew that no way would they
get a stretcher through our door; there are two steps into a small vestibule
and then a right hand turn with two steps through our huge front door. I
suggested they’d need one of their special chairs. On arriving I bought them
into the house so they could see their route, the dining room cum Julie’s new
bedroom had been cleared, I’d removed two sections out of our huge (12 seater)
dining table and relocated it. The guys were comfortable with it and within
minutes Julie was in bed. I called the community Nurse team to let them know
Julie was home, they were on their way.
Disaster time! Julie is ‘panicking’ at the lack of cot sides on the bed,
there are large triangular wedges that Velcro to the mattress to prevent
patients rolling out of bed’, I’d previously been told that cot sides are now
banned in community nursing, comes down apparently to health & safety as a
patient had caught their head in between the bars and strangled themselves. It
was clear this was something Julie was going to panic about, she has become
quite dependent on everything in the hospital and with her condition
deteriorating and her mild agitation even with her drugs she is still severely
fretting about this, I spoke to the nursing team about it and the only solution
they could come up with was moving Julie’s bed out of the window against a
wall, despite the room being around 20 feet long including the bay, no section
of wall is long enough to accommodate the bed, besides that Julie wants to be
in the window, there were one or two other concerns that Julie was ‘mithering’
about, one of the Nurses (Jan I think, forgive me if I’m wrong I’ve seen so
many new faces in the last five days) & myself said to Julie that its early
days, we need to let things ‘bed in’ and
see how she copes and we could make changes as necessary but right now, nothing
is that important it needs fretting over, well except the cot sides and this is
an issue. I’ll say at this point again, I cannot fault a single Nurse, Sister,
Carer or the professional visitors I’ll tell you more about shortly, I truly
cannot fault them they are amazing but again the system seems to be the issue,
its rigid almost black or white, well we shall see… I was also prepared to
leave it twenty four hours to see how things went, despite what some may think
I am ‘considered’ I do not act on impulse. Ooooh it took a few minutes to
register but the newly painted window frames went down well but hahaha ‘Mrs
Bouquet’ had picked up on the paint that had run on to the glass or had sneaked
under the masking tape, it’s too wet to scrape off yet. Julie is delighted that the black paint has
gone!
It’s fast apparent too that it’s going to be hard work
looking after Julie, hard only in the aspect of getting in to the routine. It’s
worth any sacrifice though to have my wonderful wife back in the house even if
we can no longer share our bed, at least we can still hug and cuddle to our
convenience. We won’t leave Julie alone now, at night someone will be sleeping
in the room with her now, tonight it will be me! Julie had just treated herself
to an all singing all dancing chair that has two electric motors on it, it
tilts it raises, I swear if it had a gearbox and steering wheel you could ride
it in to town! This will be my new bed tonight. We are getting three community
nurse visits a day, we are so grateful for the service and these truly amazing
people/team.
Night time came and we settled down for the night, it’s so
good to have my princess home, I watch her from my ‘bed’ as she drifts off to
sleep, I follow suit, it seems though I have gathered a sixth sense of being
able to sleep but also hear every time Julie moves, I reckon every mum reading
this is saying “Yep, we know what you mean”…
Tuesday morning & by six we were both awake and I was
making tea for the lady of the Manor not long followed by breakfast, porridge..
yukkk even with Manuka honey and blueberries. I had to go in to work today, I’d booked the
rest of the week off, we were meant to be at dear friends Andrew & Beci’s
wedding in County Durham which was spreading over two days, we’d long accepted
Julie couldn’t go but she was insisting I went on my own. I hadn’t made my mind
up and our hotel room was still reserved but with Julie’s fretting and just
being home I was struggling, as I drove
in to work I realised I’d have to sacrifice attending the wedding despite
desperately wanting to be there. Reluctantly I cancelled the hotel room and
then called Vince, Andrew’s dad and broke the news to him.
Work as you would expect was taken up with a lot of enquiries
about Julie, I’m touched by the concern, late in the day I saw my boss who
expressed surprise I was in but the last week of the month is my busiest and
being off the rest of the week I needed to put in a week’s worth of work in a
day, I worked slightly beyond ‘normal hours’ but I’ve achieved what I needed
to, I’d even had time to check out cot sides; the saying is
#WhatJulieWantsJulieGets, I value the work that the nursing team are doing but
Julie is stressing about her cot sides, she deserves better and with the above
mantra, well I don’t care who it pees off Julie is getting them, I called the
company and they’re ordered for next day delivery. I got home and our dear
friend June (aka Scousebabe) who had volunteered for ‘Julie sitting on Wednesday & Thursday had
arrived, she was staying over for tonight & Wednesday, she and my mum were
entertaining Julie, then friends Richard & Sharon from the Isle of Man and their 3 children arrived, they're heading to France & as the Isle of Man Ferry comes in to Liverpool/Birkenhead they kindly called in I was so thrilled to see all of them. I slept on the
reclining chair again with Julie..
Wednesday arrived and we are into something of a routine now.
Early on the cot sides arrived, Julie although she wants them up is fretting
about what the nurses will say to the point of asking “What if they stop coming
because of them”, I reassured her, I told her they will be fitted and if
necessary I’ll remove them for every community nurse visit and then drop them
back on the bed on their departure, I assured her the nurses were too committed
to a care programme and they would not stop coming to her, to you and me this
is a very irrational thought process but we aren’t stuck in a bed 23/7,
extremely poorly and a beast called fluff now marching on unchecked.
We’d been referred to
a palliative care support team called Hospice at Home, two of the team came out
to see us but whilst here the community nurses arrived and of course they take
priority, the two nurses from Hospice at home and myself retired to the lounge
to continue our chat. The team can supply support to the carer(s) in the home
by supplying a dedicated team that sit with the patient to allow the carers to
go out, go rest, whatever you want to do for a couple of times a week mornings
or afternoons, this makes an amazing difference to the carer’s ability to
conserve their energy and lol remain sane, let me tell you this journey is
stressful in so many ways so any help we are being offered I/we are accepting.
The Hospice at home (HAH) team also enquired if we would welcome ‘overnight
sits’, they arrange this via The Marie Curie Nurses, this will make a big
difference to my ability to do my job without falling asleep at my desk lol,
that feeling has hit me many times over the last few months, I remain exhausted
but the requirement to ensure Julie is cared for overrides my need for sleep,
I’ll be able to sleep to my heart’s content in the near future…. Later in the
day I had a call saying that Marie Curie would support us with up to four night
visits per week, the Hospice at home team added they would do their best to
fill the other three nights as Julie’s condition deteriorates, as I write this
on Saturday afternoon we’ve already experienced two night sits and tonight is a
third, the teams around us are amazing and
obviously see the urgency to arrange and start supplying this level of
support and yes, I will remain eternally grateful for the support.
Julie told me after the HAH team left that the nurses had
asked Julie if the long box with the image of the cots sides on asked “are those
the cot sides Andy has ordered?” Julie answered yes, nothing else was said but
Julie noted the less than impressed look on their faces. We had lunch and yes I
fitted the cot sides. late afternoon and the
second Nursing team arrived, I
explained about the cot sides, I told them I didn’t expect them to use/handle
them and if they were a problem to them, well I’d drop them down or out the
brackets and refit them after they left but empathised they were staying in
situ, this team had no issue with them whatsoever… The evening shift and the
same again, this team had no issue with them; I have to say it’s a relief; I do
not want to be in conflict with the teams visiting and professionally caring
for Julie.
Later that night and our first night sit Nurse is here, Lynn
called around 9pm to confirm her visit and was planning on arriving at 10pm and
staying until 7a.m. I suggested she come at 10.45 pm so I could show her round
the house as Julie currently doesn’t settle down to sleep until around 11pm.
Upon her arrival I showed Lynn around and explained whatever she wanted food or
drink wise to help herself, its least we can do is offer refreshments to these
teams. I headed to bed and I can tell you I went out quicker than a light. I’d
said I’d be up for 06.30 to facilitate a swift departure.
Early Thursday morning and Lynn was calling me, I shook my
head and got out of bed in a panic, Julie unusually needed the commode but as
that involves the hoist Lynn was looking for the slipper bed pan, these aren’t
the most dignified of things and well, they lack dignity although in an
emergency they are useful. Lynn and I discussed the hoist, as a former hospital
Nurse she had experience of them, I’d previously been shown how to use it so we
decided we would hoist Julie out of her bed and on to her commode. We worked as
a great team the three of us and within two minutes Julie was sited on the
commode, she told us we were as efficient as the nurses, high praise indeed, we
left Julie to have her privacy until she called us and then after ensuring she
was refreshed and cream applied to an area on in her groin that was sore bless
her, again we returned her to the comfort of her bed and Lynn was still out of
the door by 07.00. The princess deserved her first cup of tea of the day.
Mid-morning Jan from the community nurse team called to
discuss a few points about Julie’s care plan and to check how we were getting
on and how I felt Julie was coping and about the support for me, we are so
grateful. I think I am currently viewed with a degree of trepidation, the team
know I was not happy about the discharge debacle and they know I’ve dug my
heels in over the cot sides, I can understand their wariness but I am not the
ogre I am probably coming over as, the reality is I’ll bend over backwards to
work with them and anyone else BUT Julie’s wishes come first and so long as I
consider what we are asking for as reasonable then I feel duty bound to ensure
Julie has whatever she wants in her remaining days, if that offends anyone then
sorry, that’s just going to be tough. I took the opportunity of the call to
discuss the cot sides with Jan for it was her who had explained they are not in
the community now and why, as she hadn’t seen them though I expect it had been
reported back that I’d installed them I explained as above I’d remove them if
required so the team did not have to handle them but they were staying on. She
was lovely, she explained hers and the team’s concerns on the basis that if
Julie had one of her infamous seizures she could get her left arm or foot
caught in them and cause herself injury but she confirmed she had discussed
this with Julie as part of a risk assessment and Julie wanted them so they (the
nurses) were fine with them as we understood the risks. The reality is the team
have yet to see Julie have a seizure also whilst I accept they could happen
again that a) as Julie is all but left side paralysed now the seizures are only
presenting themselves in her left shoulder, her neck and head, b) someone is in
the room with Julie 24/7 and c) Julie sees them as a comfort and added security
if she were to have a seizure, her fear of falling out of bed is too great to
ignore. It seems the potential storm has blown over. We have to be guided by
healthcare professionals but where we know our family and loved ones better and
we are aware of the risks well my view is and I will always insist on things
being done our way. I know Julie better than anyone, I can see a certain look I
know something is wrong, I am not going to do or allow anything that jeopardies
the love of my life’s remaining time with me/us, I’ll add again my battles are
against a system not the excellent, amazing people who work within the framework.
It’s Friday morning and things are a little ‘testy’ Julie is
fretting about things that normally she wouldn’t but even a few things on the
dining room table are becoming an issue, she thinks they’re in the way of the
soon to arrive nurses who have to mix up Julie’s controlled drug sedative,
despite there being only two of them and our much reduced in size dining room
table which can still seat six these
things are still an issue, these are small things that suddenly become much
bigger, this is funny writing it now but at the time it wasn’t, Julie’s
frustration was at the point that she snapped at me and the words ‘getting
divorced’ and ‘Well I’ll go and live in the shed then’ came out of Julie in
pure frustration (lol we don't have a shed…), I can understand her anger but
it’s no fun being on the receiving end of it
and jumping forwards a day I had to say as more conflict ensued, “You
are not going to get an argument out of me over this” lol Julie disagreed she
thought an argument would be a good idea so I ended up walking away to calm
things down. These are very testing times for us both…
The hospice at home team are coming to spend time with Julie
this afternoon, ha, we’re commandeering everyone in to voting for Julie in the
Merseyside Women of The Year Awards, to be honest once they read just part of
the blog they’re thrilled to vote for her. An In blog plea… Please, Please
#VoteJulieShute all you do is go to www.merseysidewomenoftheyear.co.uk/vote
If you are on twitter please use the hash tags
#VoteJulieShute and #MWOTY not only vote for Julie but raise the profile
of this fantastic event and its organising
team, the judges and all sponsors especially Michael W Halsall
Solicitors who are sponsoring the only public vote award.. There are some amazing
women in the final; you’ll be less than surprised that I’ll add but none so
amazing as my battling wife.
On arrival of the hospice team my mother & I popped out,
we had the hospital’s syringe driver, the community nurses had replaced it with
one of their own, these things are expensive so I took it back to the ward (26)
where I was greeted with yet more hugs and everyone wanted to know how Julie
was, some of the gang wanted
me to take a picture to show to Julie, happy to
oblige, here it is, a selection of the Ward 26 ‘Angels’ we also needed to get
some shopping from Sainsbury’s and as Julie loves watching the wild birds in
our small front garden, I popped in to Homebase; we’ve already got a feeding
station plus ‘fat blocks’ (not blokes) dangling from the small trees, the view
immediately in front of Julie is quite barren so I thought if I get a 10ft
length of timber and a couple of hanging basket brackets and attached the 2 by
2 to the wall she would have a great view of the bird equivalent to a Michelin
star restaurant. Bizarrely for an urban garden we’ve had great tits, blue tits,
sparrows, doves, Robins (Julie’s favourite) Blackbirds, the odd pigeon, the
occasional unwanted Magpie and we’ve had two Woodpeckers in the garden too.
Bird Watch a la Birkenhead. So after a
quick ride out, out came the drill, rawlplugs, screw driver and hammer and 30
minutes later a new bird feeding station is up and open for business.
Tonight we have a lovely lady called Cathy as our Marie Curie
‘Julie Sitter’, she’s lovely, a slight glitch tonight, the community nurses are
running late, normally they’re here around 9pm, the clock ticks on and at
midnight with Julie fretting as she needs to be hoisted out of bed on to the
commode, I called the out of hours service and explained our concern and hoped
Julie hadn’t been forgotten, about five minutes later we had a call saying they
were running late but would be with us shortly, much to Julie’s relief they
were, once Julie was sorted and settled this was around one a.m. I headed to bed;
my head barely touched the pillow and I was asleep.
Saturday, I’m downstairs for six forty, Julie is awake and
ready for her first cuppa, Cathy sets
off for her own bed with our sincerest thanks, I’d had just over five hours
unbroken sleep which is more than most nights in the last 21 months. The time
seems to just speed by, its soon lunch time and Julie thankfully has her
appetite back, she often raves about my cheese omelettes, lord knows why but
today I made her in fact all of us cheese omelettes, I sautéed some Jersey
Royals and we had sweetcorn too. As I was mid-way through Julie’s fondest
friend Letty aka Olive arrived, she’s been trying to visit for a few weeks but
a combination of work or illness has (Sensibly) kept her away. Julie tucked in
to her meal and announced she could have eaten two of them so I put her to the
test and passed her my plate which had around 40% of my meal left, Julie made
short work of that too.
I keep saying #WhatJulieWantsJulieGets the latest example is
she loves a malted drink from her childhood memory bank called Milo, I’ve
previously bought it in Tesco in Horwich but it’s not sold in our Tesco I
discovered on a recent hunt for it. Its popular in the southern hemisphere also
in the Caribbean, I had a feeling that the huge Tesco in Toxteth would stock it,
they did so one for now lol happy Julie.
Julie had been mentioning to the district (community?) Nurses
that she felt when in the hoist/On the commode that her catheter was being
bypassed she also explained she had an ache in her groin, the mid-afternoon
team felt she may have an infection but as getting a urine test done at the
weekend was a no go they would keep an eye on things, she may need antibiotics.
When the 9pm team arrived the lead nurse said he’d check the urine with a stick
test, his opinion was that there was an infection and he’d get the out of hours
GP service to call us, by the time they’d left and the GP called it was pushing
10.45. I chatted with the Dr acting as a go between for her and Julie, she too
felt Julie had an infection and luckily they had a supply of antibiotics at the
out of hours centre at APH, I drove up to collect them lol I was at the reception
desk before the drugs were. Anyway pushing 11.30 I was walking back to the car
when I stumbled across Hannah & her Nurse, Steph, ‘getting some fresh air’
we obviously needed to chat, they were surprised to see me and feared Julie was
back in A&E, I explained all. I was home in five minutes and Julie had her
first antibiotic, I spent 15 mins writing the blog then exhausted kissed Julie
goodnight and hit my bed & pillow. Around 01.00 Cathy called me , there was
a problem with Julie, her bed was soaking and smelling none too pleasant, It’s
clear the catheter has been bypassed bless her, I called the emergency out of
hours number and was informed a district nurse team would be with us soon and
they’d change the catheter. I suppose it was around forty minutes after the
original call and the team were here and got straight into sorting Julie out,
Cathy was standing by with a bowl of water, flannel and soap & glory, it’s
a pleasure to witness these teams at work, the care & compassion is amazing…
Cathy had even given Julie a bit of a foot pamper!
So I think I got back to bed around 2.15 – 2.30 and I have to
be up for around 06.45 as Cathy leaves at 7.00. I made Julie a cuppa and snuggled
up under a faux fur throw on the recliner, I would catch more Zzzzzs.. It’s a
good job ‘sleep is for wimps’ hahaha, more like it’s a good job today is Sunday
and the plan is to cook Sunday lunch and do bugger all except rest and run
round after my Princess.
Finally… You may not have heard but Julie’s blog burst
through the 35,000 views mark yesterday, so 35,000 thank you’s to each and
every one of you. The most read blog to date with over 1,100 views is the
#VoteJulieShute I’m hoping each view equals a vote, please ask your friends,
family, work colleagues to vote, vote, vote, we have until 6th June
to vote. And Thank you.
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