Great to see you back here again, hope you’ve been keeping
well? Our family have all been suffering with colds this month – it started at
the care home and spread like wild fire with patients, staff and visitors all
passing it around, inevitable at this time of the year. Poor Dad got through a box of tissues in one
day with the constant dripping of his nose.
I know I felt rubbish when I had it, so he must have felt really miserable.
So how was September? Well we started the month on a high
when we received the news that Dad would get 12 weeks of social funding to stay
at JC whilst the works at Mum and Dad’s house are completed. Fantastic! I could hear the sheer relief in Len’s, Mum’s
and Dan’s voices when I phoned them one by one that morning to give them the
news - I admit I shed a few tears of joy in the middle of the office as I too
was so relieved at the unexpected, but very welcome, news.
Unfortunately for Mum, when she has been at home, she’s been
living in the middle of a building site.
The plan is to have the wet room completed in October and we are still
waiting for the lift work to be started with a lead time of six weeks. Ramps
have been built at the front and back of the house to enable Dad to be pushed
in and out in his wheelchair. There are
many more adaptations and changes to be carried out around the home and we are
trying our best to work through these and get them done – all very difficult
when Mum spends half of her life at JC.
One Saturday during
the middle of the month we brought Dad home for the day. We had been saying for the week prior that he
had started becoming aggressive again and the swear words were being reeled off
more regularly. Flagging up the possibility of yet another UTI - we were
advised ‘it’s all part of the stroke’.
Dad was pretty harsh with us when we were changing him at home, accusing us of
not being careful enough – as a family, we couldn’t be any more understanding
and responsive to his extensive care needs.
During one pad change it became apparent that he most definitely did
have an infection as the pad, having only been changed 30 minutes earlier, was
covered in a discharge. I kept the pad
and took it back to the care home for the nurses to witness. A urine sample had to be taken and sent for
testing - three days later a UTI was confirmed and antibiotics were
prescribed. Thankfully this time it was
treated by oral antibiotics and another admission to hospital was avoided. However, we have not yet had confirmation
that the infection has cleared.
After a four week
wait the day finally arrived to take Dad to his appointment at the Assisted
Living Centre (ALC) to trial the vertical lift.
Ha…but guess what?! We received a
call on the morning from the ALC advising that the Occupational Therapist (OT)
who would carry out the assessment had phoned in sick and that we would have to
re-book. Thankfully during Mum’s
response of pure anger and frustration at being let down yet again, she had a
bright idea and asked if the care home’s OT could accompany us with the visit. Dad trialled the lift and, as we thought,
there were no issues and he was able to transfer from one floor to another
smoothly and safely. We’ve now been
given the green light for the vertical lift to be installed in our home – result!
Shame we had to wait so long for what was a 60 second trial.
Following an email
to PALS where I raised our concerns about the late November appointment for Dad's spasticity review, we received a positive response from them notifying
us that it had been agreed to be brought forward to September. Once again, it was left to the family to be
proactive to get the appointment moved forward by two months.
Dad had another
classic sneezing moment as we pushed him in to the room to face the Consultant.
I saw the sneeze coming and put my hand to his nose to shield the spray…but
alas, some of Dad’s snot escaped shooting across the room and landing in a
thick gloop on the Consultant’s trousers!
Typically nobody could get a tissue quickly enough. As the Consultant returned to the room with a
wet patch on his trousers and brushing down his jacket, Dad apologised and we
continued with the appointment.
We were in there for
well over an hour with the Consultant and his team as they assessed Dad’s left
arm and leg. The positive outcome was
that Dad received two injections of botox in to his left bicep which will aid
the stretches we do with his arm and benefit his hygiene routine allowing him
to wash with more ease under his armpit.
Of course if you’re
a regular reader, you will have an inkling of how this appointment went…On went
the music for distraction, we held Dad’s right hand to keep him calm and
reassure him and to prevent him from punching the Consultant who Dad was
letting rip at for causing him pain - ‘You f*cking b*stard you’re f*cking hurting
me’ he shouted with a face full of rage.
The nurse in attendance antagonised the situation by telling Dad that
this was ‘no way to speak to a Doctor’.
Yes she was probably right, but there is no reasoning with Dad when he’s like
this and in a few minutes we knew he would calm down, move on and not recall
any of it– but she kept on. ‘Show the
Doctor some respect’ she said. ‘The
b*st*rds not f*cking hurting you is he, he’s f*cking hurting me, so f*ck off’ was
pretty much Dad’s response…and how did she react? She laughed in his face. ‘Don’t
laugh at my Dad’ I could feel my heckles rising, ‘he’s got dementia from a stroke’…and so we had a little confrontation
of our own whilst Dad continued shouting.
Shortly after, Dad
had forgotten about the painful injections the Consultant had administered and
continued with his singing, serenading the nurse with James Blunt’s ‘You’re beautiful…you’re beautiful’….mmmm
not the song I would have chosen on this occasion but hey ho, we got through
it.
Dad’s leg was
discussed in detail, though I am none the wiser what was agreed as a future
plan to aid Dad’s mobility. The consensus
was that his hamstrings were ‘not that tight’
and therefore did not require botox.
They requested to see Dad take some steps which was pretty difficult in
the crammed consultation room with six people squeezed in to it. Dad didn't do the
best walk, but they could see that he is unable to place his full left foot to
the floor which results in him walking on his toes.
I was able to show them some footage on my phone of Dad being supported doing
a better, longer walk. A phone call was going to take place with the
physiotherapist at the care home to discuss the next steps (excuse the
pun). As I say, we are still waiting to
hear of any decision going forward.
Also that week, we
took Dad for an appointment with an orthotist to review equipment that could
assist his hand, wrist and arm. We took with us the two
splints Dad had been given over the last 15 months that he has worn on and off,
now and again, without any consistency.
‘Why hasn't Alan been wearing this
splint?’ – the orthotist referred to the one given to Dad last November.
Well…either staff at the care home have not bothered to put it on Dad or more
recently we have been advised that Dad is better off without a splint on his
left arm. ‘No – this is the splint that Alan needs to be wearing and he should be
wearing it several times a day and should have been using it since November last
year’ we were informed. It is
frustrating to know this and even more frustrating after feeding it back to the
care home, that we still arrive to visit Dad to find him without the said
splint on. Admittedly it is a
little awkward to put on and Dad can be quick to tell you that you’re hurting
him – but if you work with him, and explain what you’re doing, there shouldn't be any problems. The splint is never
going to get Dad’s arm or hand functioning again, but it will prevent his arm from
clubbing (coming permanently in to his body) and his hand from becoming a claw
(fingers permanently clenched). From the
botox injections and wearing the splint, we can already see an improvement to the
straightness of Dad’s arm and hand.
Unfortunately I do
not have much to report on the physio side as I’m not sure what Dad’s been up
to. He has been for a couple of sessions during the month on the cycling
machine but we just wish he could do this more often to help keep movement in
his left leg, as his tolerance levels for us stretching his left arm and leg are pretty short at the
moment. When Dad sits for 99% of the day – his leg stays in that 90 degree
position and it becomes harder and more painful to stretch it out, this in turn
restricts him from elongating his leg allowing him to place his foot flat to
walk.
Dad has played a
couple of games of bingo at the care home with Mum – apparently he’s very quick
at putting the counters over the ‘correct’ numbers – which is good, and he’s
also very quick at calling out the bingo nicknames to the numbers! Perhaps
we’ll be taking a trip to Mecca very soon!
Well I think that
captures the key events on Dad’s progress this month. Please don’t forget that
Dad’s nieces Helen and Katie will be running the Birmingham Half Marathon on
Sunday 20th October in honour of the legend that is ‘Alan Skett’ and
to raise money to support research by the Stroke Association. Again I attach the link to their Just Giving
Page and hope you will help motivate them by donating to this cause that has
become so close to our hearts:
Other carers from
around the world have been getting in touch with me through my blog and offering
their support and advice on caring for loved ones. Some have asked that I help raise awareness
of their campaigns; therefore I attach a link to information about mesothelioma
which is a preventable deadly cancer caused by exposure to asbestos:
I always end by
thanking our loved ones for their support and every month I mean it. The same few people have been with us right
from the start, whether it’s helping Mum get home at night, visiting Dad for an
hour even though he ends up sleeping throughout the visit, or lending me an ear
while I rant and offload the frustrations of the day or week – we value what
you do. As the number of texts dwindle
and the visits become less and less we have to continue to stay strong and do
everything we can for Dad to have the best quality of life that we can give
him.
Thank you to those
that are still with us on this journey that rocked my world…and if you’re
reading this – thank you too. Please share this link to spread our story and help with the fight to prevent strokes – I wouldn't want any other family to
go through what we are going through right now.
Love You Dad x
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| Mum, Dad and me 16/9/13 |
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| Put your arm round Len Dad - show him some love! |
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| Enjoying the September sunshine. Dad with his brother and sister-in-law. |
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| The hand splint that Dad will now wear daily. |
