You WILL
need tissues…
Friday 7th
of August and we have Julie settled back into her comfy bed with its airflow
pressure relieving mattress, we’ve got visitors again tonight, Tara and her
partner Pete are back again for their second visit in three weeks, both are
amazing in the support they’ve shown us as a family, I met Tara for the first
time on Xmas day and I met Pete for the first time two weeks ago, we’ve bonded
incredibly well, it’s sad that we’ve only just met. Tara and Julie worked in
the healthcare sector together so it’s been a big help to have her support in
helping us care for Julie, Maureen is amazing and it’s like Julie has her own
personal gourmet chef and patissiere though Maureen goes beyond that, way
beyond, she’s slight in build and is 'no spring chicken' and she just gets on with it but to
me I see a slight and slightly frail lady who shouldn’t be attempting to ‘hoick’
Julie up the bed even with me in attendance, she feels put out that I deny her
doing such tasks but I truly fear for her health, we’ve both lost Henry this
year, we are both going to lose Julie, I do not want a hat-trick of deaths so I
make no apologies for my actions. Tara is more experienced in moving people in
their beds plus we’ve been able to hoist Julie as it’s needed to get her on the
commode or in and out of her chair.
Talking of
Maureen, as amazing as she is and she might say I am we were never destined to
live together all of our lives, we have different ways of operating and we have
different personalities and, when you’re pretty much together 24/7 and with a
terminally ill patient to care for things can become strained, mum is still
trying to come to terms with Henry’s loss plus she’s abandoned her own home and
life in Warwickshire for almost twelve weeks to care for Julie now, thank goodness she has
amazing neighbours in Heather & Dan who safeguard the house for her. She
does need to go home though a) for a break, b) for us to have our own cool off
period and c) she needs to handle her post etc so it was agreed for her to go
home Friday and whilst I suggested she came back Monday, Maureen was adamant it
would be Sunday evening.
Julie is
excited to see Pete & Tara especially as Tara has brought Grimsby fish with
her! Julie knows her fresh fish and she’ll be eating it this weekend. Tara had
also brought a spag bog with her! Friday night was quiet,
Saturday
morning and it’s my birthday, I started to open all the post aka my birthday cards then Tara ‘rebuked
me’ for keeping my birthday quiet, lol it’s just another day to me, on hearing
Tara mention my birthday, Julie got really upset, she had forgotten it. I told
her, her being here was my birthday present plus only recently as I’d dropped
my brand new phone and shattered the screen on it she had kindly bought me a ‘man
bag’ and that too was present enough.
We decided
to go out for lunch though, we were going to New Brighton after the previous
aborted attempt though in its own way this almost didn’t happen!
Tara & I
got Julie into her wheelchair successfully, I called for a Taxi, we need a large cab
these days a model called a Peugeot E7 can take a wheelchair as large as Julie’s.
I called to book one for thirty minutes time and I needed to book a return too
after the farce of not being able to get back last time, the response from two
cab companies was nothing short of appalling, both saying I couldn’t just call
and book one or a return, one suggesting best to call when I needed it and if
they had one available they’d send it! The upshot is despite being told none
were available in the end we set off for the town centre thankfully only 300
yards away to a taxi rank outside Asda where there were 8 yes EIGHT E7 cabs on
the rank two of which carried the phone number of one of the companies I’d just
done battle with! I’m sure, knowing me by now you’ll be aware that formal
complaints have been submitted to the council and the cab companies and I am
still seriously considering whether to push this further under the disability discrimination
act. As I explained to the operators who refused to take even an advance
booking (on the grounds they might not have any 7 seater E7’s available then)
that had I wanted to book a seven seater for an airport run they WOULD have
taken the booking, by definition discrimination against a disabled person, I
explained on this basis a disabled person would not be able to plan an evening
out to the theatre, the movies or for a meal for they might end up stranded! It’s
simply appalling.. Any lawyers reading wanting to make a name for
yourselves?....
Anyway, we
got to New Brighton, we had a great meal and time in The Marino Lounge Café but
per usual Julie got fretful and we came home slightly earlier. Pete works out a
lot and he tackled the hill with Julie to the train station, soon we were home,
Julie was wiped out.
Most weeks
now Julie’s anxiety and agitation seem to outstrip the controlling medicines
doses, bizarrely her pain management seems to be constant. Over the coming week
on speaking and meeting with Jayne our amazing Macmillan Nurse it was agreed
that Morphine and another drug called Levomepromazine would be added to Julie’s
Medazolam in her syringe driver, the dose of morphine even as I write this hasn’t
moved up. We also agreed that following Julie’s last hospital admission that
these are just too stressful for her to contend with and truthfully nothing
more can be done for Julie now, we need to keep her stress free not have her
fretting about hoisting on to stretchers and blue light journeys. Julie’s
medical file here at home contains all her drug information and with these let’s
call them ‘end of life’ drugs there is a chart that confirms what the daily
dose should be but it also includes a range where if the Nurses or other
medical professionals believe an extra dose is needed to top up the existing
drug level then they can without delay and don’t need to consult a Doctor at
the time. Jayne & I agreed that if Julie had another seizure not coming
under control that by all means I should dial 999 and the attending paramedics
can administer a top up dose under the same ‘rules’ Well that’s the theory, the
practice as you’re about to hear is a different ball game…
Throughout
the following week (w/c 9th August) Julie was showing further signs
of deterioration, she comes out with the quirkiest of things, it’s a combination
of the tumour on her brain and her medication, the one morning she told me she
was uncomfortable in bed I asked “Do you want me to move you (up the bed) hunny?”
“Yes please” came the response followed by “Can you make me heart shaped
please?”… I’ve also been asked to “Park those two cars by the bottom of my bed
on top of each other please”, there are many more but bless her; this is just
to give you a flavour of what is occurring. Her deterioration to those that see
her less frequently such as our night sitters or Jayne or friends & family is more obvious than the
slow daily creep that occurs and is perhaps less obvious to Maureen & I, we
do notice the change though, these days it is significant.
Maria
travelled from down south, I run a private face book group for Family and had
informed them Julie was ill, Maria was here a few days later for an overnight
stay, Julie truly appreciated the gesture and seeing Maria as did Maureen and
myself.
I messaged
Bob & Emma, I was going to suggest if they wanted to see Julie/Mum now was
the time to be visiting… By chance they had already decided they’d make a
flying visit on Sunday (16th). It’s difficult for friends and
families from afar but I’d rather everyone knew just where we were with Julie,
the last words I’d ever want to hear after the event from anyone friend or
family are “We didn’t realise things were so bad or so close to the end”. I’m ‘fortunate’
I see Julie daily I know it’s going to hit me like a ton of bricks when I lose
her I don’t think every close family member or those who have been close
friends appreciate the grief they will have to contend with on Julie leaving us,
it’s difficult, I recall when my dad was dying and my first wife hadn’t been
able to see him in around four weeks, at that stage he’d gone skeletal and I
told her whilst I was happy for her to see dad anytime for she doted on him
that his physical appearance had changed so much it could be distressing and
sometimes it’s easier and it’s better to remember a loved one as they once were
not what medicines and illness have turned them into, from my perspective Julie
is and will always remain my Julie whether it was the fun loving prankster who
certainly gained admiring glances when we were out or as the bedbound woman she
is today, my love for her is unconditional.. Anyway back on topic..
Saturday afternoon
and Julie started to have a seizure, the most recent ones are presenting
themselves in her right arm from her shoulder to her fingers, we have a tablet
that we drop under her tongue that is meant to alleviate the symptoms and relax
Julie, it’s a far lower dose of Lorazepam, this is the drug they used to sedate
Julie in hospital you may recall. Over twenty five minutes three tablets never
touched the seizure. I called our GP out of hours service explaining about the
need for someone to get out and sedate her with the Medazolam, I was told a Dr
would call me back, within five minutes so just on thirty, the seizure faded as
fast as it started. I called the out of hours service and ‘stood down’ the GP
call but five minutes later he called, he suggested next time it might be
quicker to call for a paramedic. Little did I know just 18 hours later I’d be
doing exactly that. Sunday morning and Julie went into seizure, this one was
slightly different, it was causing her pain and at the same time line as
yesterday three tablets was clearly not going to bring it under control, I
dialled 999… Within two minutes there is an ambulance here, despite explaining
the need to give Julie a ‘hit’ of midazolam he was having none of it, the
seizure was still occurring and he was going to blue light her into APH again.
There is no point in arguing the toss at this point so I get Julie into her
sling harness and operate the hoist and we get her onto their trolley. Maureen
went in the ambulance with Julie, I’d love to but I’m more use if I have my car
to hand. I gave the paramedics the Do Not Resuscitate form that Julie had
requested be in her file since her blood clot hospital visit. From an
educational point of view, a Doctor will complete the form after discussion
with the patient and family. Either way the outcome can be distressing,
sometimes in resuscitation patients can suffer broken ribs and horrendous pain,
without this document paramedics are legally obliged to attempt resuscitation
and cannot/will not stop if family members look on seeing their loved ones in pain, this DNACPR form is clear and cannot be over-ridden by paramedics or Doctors, equally I can only imagine the stress of seeing a loved one in this situation and being upset that no one is doing anything, in this instance it is Julie's will and I support her decision on this.
In Julie’s case right now such treatment would be cruel and pointless other
than to keep her alive in pain and suffering, knowing she is close to death now
these are the harsh realities of being ‘this ill’…
The paramedics
blue lighted Julie in, I followed shortly after (remember do not chase
ambulances under such circumstances) I gathered Julies box of medicines and
headed for A&E. The seizure lasted 75 minutes before it subsided!.
I’m not
going to labour on this visit for it’s fair to say I’ve seen the best of APH
and this day I witnessed the worst, yes I’ve already raised it with Jill
Galavani the Nursing Director, she was ‘incandescent with anger’ at what I
shared with her, these are not the standards Jill expects her team to work to.
Sorry I have to interject with some live humour, I’m sat in ‘Julie’s
bedroom’ typing away, I coughed once and this voice say “You’re noisy you are”
lol I said “Sorry hunny, why am I noisy?” response “I don’t know you are,
sorry..” I asked “why are you sorry?” response “I don’t know, what are you
having for breakfast?” lol its all so abstract, not worrying and in a quirky
way it makes me smile..
So back to
APH A&E department, Julie was finally sedated and an ambulance was called
to get her home. At home as we moved Julie from the ambulance crew’s trolley to her bed her syringe
driver tubing was caught and accidentally the needle was out of the insertion
site (I say needle it’s very hard plastic). Julie was sleeping by now and I called
the community nurses out to re-site the driver, as a precaution because of
issues at the hospital with Julie’s syringe driver needing to be refilled there
Angie and Terry today’s Nurses did in my view the right thing and emptied the
driver contents and replenished them their selves.
On Monday
Jayne our Macmillan Nurse came out I explained my frustrations at the traumatic
day Julie had, it could all of been resolved in minutes if only the paramedic
had been prepared to administer the sedative. I explain I’m now torn if this
happens again, hospital can do no more for Julie she needs to be comfortable at
home, Carolyn the head of our community nurse team is here too preparing Julie’s
syringe driver, I suggested surely it would make more sense if we have a future
occurrence to call the community nurses out and they know they can administer the
emergency dose of Medazolam and thereby ease Julie’s suffering, the three of us
agreed this was the best way forwards now. These are tough decisions and it’s
trying to work out what is best for Julie. The A&E Doctor had asked me what
if any investigations she wanted us to conduct (for Julie is all but out of it
during here seizures) after I described all of Julie’s symptoms for in addition
to the seizure she was complaining of shortness of breath, this is how the earlier
blood clot was found. The harsh reality here is nothing will save Julie and
putting her in a hospital bed where she doesn’t want to be for more invasive explorations
and to what benefit and end? I suggested what would be best is for Julie to be
sedated as she should have been at home and then return Julie to her bed at
home, the Doctor agreed, I bent down close to Julie holding her hand and asked
if she was comfortable with what we’d discussed, I explained it all again to
her, Julie was accepting of what we’d agreed.
To add to
the tension, Emma, Bob, Chloe, Abbie, Olivia & their cousin Adel
were on
their way, should they come to the hospital or to the house, it was a close
call and they came through the Birkenhead tunnel just as Julie was being
transferred to the ambulance men’s trolley, I suggested they wait by the house
and fifteen minutes later they were all reunited, these are such emotional
times in particular for Emma and Julie, it’s truly heart-breaking. Adel
bizarrely asked for a Teddy to cuddle, the house is full of them so I found her
one and told her she could look after him whilst she was here. Julie although
appearing to be asleep (this is a particular party trick of hers – beware what
you say in her presence even if she appears asleep for an hour lol!) Julie told
me to fetch the Stieff Bear Collection down, she had tagged up all the bears
back in hospital, they were to be grandma’s gift to them after she had passed
away. I queried her timing but no she wanted them to have them today. I went
upstairs and brought the large bag containing them all in, I took one last look
in the bag, these I’d bought for Julie for special occasions in our lives, it was
going to be hard handing them over and yes, again I cried but at least I was on
the top floor of the house. I dried my tears and headed downstairs and we
fulfilled Julie’s last wish and handed the girls the bears all with a
personalised tag. The girls all had huge smiles and thanked Grandma, I looked
at Adel with the bear I’d ‘loaned’ to her, bless her I couldn’t send her home
bear-less so she went home with a bear too.
The kids had
barely left & Julie was pretty much out for the count immediately and for the
next four days! She slept at least 22 hours a day.
On the Monday
evening our Marie Curie Nurse/Night sitter who had been with us on the Friday night before on seeing Julie asked for a word
with me in our lounge away from Julie. He explained that the obvious
deterioration in Julie in just four days tied in with his experience in the
palliative care sector brought him to the view that Julie has just days left…..
I’d already
been working on the basis of four to six weeks because of the rate of decline,
but hearing these words hit home. He just suggested I prepare myself for the
worst. It wasn’t the easiest of conversations but it was necessary, I’ve never
dealt with death this closely and intimately before, what do we need to do when
the time comes? Yes it’s a given that you need a Doctor to certify a death but
then apparently my next call will need to be to the community nurses who will
need to remove the catheter and the syringe drivers, then it would be time to
call the funeral directors, sadly this is the harsh reality of where ‘we are’ /
‘Where I am’.. I went in to the kitchen where Mum was, it was obvious that it
wasn’t good news, we’re not particularly tactile but we hugged.. Maureen headed
to bed just giving Julie her kiss goodnight first. I went back into Julie’s
bedroom and held her hand, she looks peaceful, I don’t want to leave her but
the whole idea of the Marie Curie sitters is to give me respite, I stay for
five minutes longer then I am heading to bed, I’m not going to sleep much tonight,
my head is in a spin… It was also suggested we needed more support than the two
overnight sits we were having this week, a submission would be made to add
more.
I find it
very difficult to be away from Julie right now, I know this situation can
change in a matter of hours; I need to be with her as her journey moves on, she’s
never alone but she’s my world for my own sanity I need to be with her no matter
who else will be. It’s not so bad at home, ‘my bedroom’ is immediately above
Julie’s now bedroom, I can be down in seconds, my dilemma revolves around work,
It’s a 90 minute drive in of a morning, it’s a forty-five minute drive home at
night, it’s 43 miles away, if I get a call will I make it home on time? Equally
I’m being told days but what does that mean? We are only four months into the
holiday year and I’ve already used half of my holidays and my employers have
been supportive with some compassionate leave, I’ve even taken some days as
unpaid leave for I know I’m going to need a holiday when this chapter of our
lives closes. What if I take the balance of my leave now and I reach the end of
it and Julie is still fighting on? I’ve still got bills to pay, I cannot be the
only person in the world who faces this additional dilemma, I’m sharing it not
out of a cry for sympathy but it gives you an insight into the additional
pressures someone faces on top of the daily uncertainties, Julie’s situation is
as she described before almost like a daily game of Russian Roulette, the
tension is so, so cruel on everybody not just those of us here at Shute Manor.
For the next
few days Julie has barely woken, she hasn’t eaten, she’s barely drank anything
either, she has a catheter in and the night bag hangs off the edge of the bed
frame, in three days there is barely 200ml of fluid in it, it doesn’t take a
rocket scientist to tell you lack of food and in particular fluid causing
dehydration that Julie’s time is short…
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