Good to see
you back here again - grab yourself a cuppa and even a biscuit, I’ve got a lot
to share with you this month.
So August started
pretty much as July ended, with Dad still in hospital receiving intravenous
medication to clear the recurring UTI. To knock us down a little further when
we were already at a low point seeing Dad back in hospital, we received a
letter from the PCT – or Clinical Committee Group (CCG) as they have now
rebranded themselves.
The letter
advised us that ‘Mr Skett no longer met
the criteria for Continuing Healthcare’ and that they ‘have therefore requested Social Services involvement in your Father’s
care’, leaving us with more work to do if we are to appeal their
decision. No indication of an end date
to the funding was provided in the letter, we had to find that out for
ourselves. We have since heard verbally
from other sources it ended on Thursday 29th August.
So the CCG
requested Social Services to get involved…well they didn't do it very well, as
I, along with others involved with Dad’s care, tried for the whole month to get
a social worker allocated. So much for a smooth transition from Health funding
to Social funding, neither social worker from either department got in touch
with us (and haven’t for over a year for that matter).
Eventually I
was informed the previous social worker from last year had been allocated, so I contacted him to arrange to meet - which we did on the 29th. Following the meeting, we are now waiting to
hear from yet another ‘decision panel’ as to whether Dad gets funding from
social services for the transition period of approximately 12 weeks before Dad
returns home permanently. I will let you know the outcome next month.
Yes you did
read that correctly ‘before Dad returns
home permanently’! We are now making
plans with immediate effect to get Dad home where he belongs. The works to build a downstairs wet room have
started – if you recall, works were due to start in March but were stopped when
we listened to the GP’s opinion that ‘Dad shouldn't go home’. It is frustrating, as had we stuck to our original plan,
the wet room would have been built by now and in place for Dad’s return.
A lift
company also visited us in August providing a quote to install a vertical lift
in Mum and Dad’s home to aid Dad getting upstairs. We were advised in March that a stair lift
was not an appropriate method for a stroke patient to use as there were a high
number of health and safety risks.
Therefore, the vertical lift is our chosen solution taking Dad from the
living room up to his bedroom and vice versa.
The lift will
minimise disruption to Mum and Dad’s home allowing Dad to keep some normality
and dignity by keeping his bedroom upstairs and keeping the downstairs as
familiar as possible. Their living room
and dining room is one through room, therefore having the bed downstairs would
result in a complete lack of privacy for Dad.
We were
informed any home construction works requested through the Local Authority has
a waiting list of approximately two years, so the quickest and most effective
option has been to do it ourselves.
Unfortunately
we have not yet been able to order the lift which takes six weeks to install,
as we have to wait for Dad to trial it first.
It was frustrating to hear that Dudley Social Services have an
assessment centre with a vertical lift right at the top of the road he
currently resides in at the care home; an appointment has been made to attend
mid September. Had anybody informed us this facility was there we could have
trialled it weeks or even months ago and we could have been in a position where
the lift was now well on it’s way to completion.
So that’s the
background to getting Dad home. We are
not naive as a family to think that it will be easy, our lives have been turned
around following Dad’s stroke and new challenges will present themselves when
Dad returns home and Mum becomes his full time carer. I’m sure we'll all need your support more
than ever.
So what about
your Dad’s health? I hear you ask. Well,
Dad left hospital and returned back to the care home on the 6th
August. As soon as he left in his normal
clothes and was safely in my car he appeared to be so much better, but from my
recent experiences, I think hospital has that effect. I’m pleased to say Dad’s
doing ‘alright’ - we know he’s never
going to be the same man he was before the stroke. There have been moments of the old Alan Skett
shining through this month, a bit of quick wit here and there and the ole
chinks of his intelligence still amazes us, but there have also been moments
when we see the new man that the stroke has created, the confused, frustrated
and vulnerable man. I write each month
and explain there are good days...and there are not so good days.
A side to Dad
we have experienced since he has returned from hospital is a ‘touchy, feely’
side and not necessarily in a good way.
Dad has taken to wanting cuddles and affection. He has become tactile stroking legs and backs
and even looking down the front of female’s tops – please take note ladies when
visiting and dress appropriately! There
have been a couple of reports put on his behaviour chart from care staff, but
we are hoping the frequency of episodes has reduced as the month has ended. I’m not sure if it’s to do with me playing
numerous ‘love songs’ to Dad this month…? You know how he enjoys his music, well
following a chat with friends about the ‘power of love’, it prompted me to play
Celine Dion’s version of the said song, which led to many more ballads. Dad certainly enjoyed singing to them ‘Listen to the words’ he told me, ‘Listen to the emotion in her voice’…Perhaps
it’s triggered a connection in the brain with thoughts of love...??
One evening
Mum, Dad’s brother and sister-in-law and myself were sitting with Dad at the
table after his evening meal, listening to music I was playing for him (love
songs again I think), when Dad started making innuendos with a banana. Sometimes you do have to laugh, so whilst Mum
and my Aunty tried to stifle their giggles, I sternly told Dad that he was
being very inappropriate and uncouth (one of his words) – his response ‘Well it makes them laugh down at the Scouts’
– ‘Yes Dad’ I said…’but you're 69 not 14’ – ‘Oh!’ he said. I hasten to add; I've eased off playing the
love songs and am now sticking to more upbeat songs!
There are
days when Dad is more tired than others, and occasions when all the
conversations going on at once get too much for him that he shouts at everyone
to ‘shut up’ or switches off from it
all and closes his eyes. But there are
also the days when he is more engaging and interactive ‘more relaxed’ Dad tells me. Over the Bank Holiday weekend I gave up
the invitation to two family celebrations with Len to spend time with Mum and
Dad in their own home. On each day I
collected Dad at 12 pm – mind you, even that wasn't straight forward. On Saturday he was just eating his breakfast
when I arrived and on the Sunday he was still in bed due to
insufficient staffing levels – the reason I was given ‘three carers hadn’t turned up to work’. At least by the Monday he was ready and
raring to go when I got there at 12 pm.
Each day
spent in his own surroundings Dad improved a little bit more, which made it all
worthwhile and gives us hope for Dad’s permanent return home. He appeared quiet and subdued on the Saturday
but enjoyed a day of sport on the TV. Sunday he was a little more engaging and
by Monday he was at his best joining in conversations and laughing with us. Now whether Dad had had enough of mine and
Mum’s company and appreciated a bit of male companionship from Len I don’t know,
but it was good to see Dad laughing with us!
It was good
to be eating at the table together like we always used to as a family – it felt
normal. Mum and I were with Dad for one
of his lunchtime meals at the care home between appointments, when his lunch
arrived. He was presented with a full roast and we both thought ‘he’ll never eat all that’ – sure enough
he ate and enjoyed every last bit, even using a spoon to get the last of the
gravy off the plate. ‘Delicious’ he said! It’s good to see he still has his appetite.
Whilst Dad
was at home with us it highlighted how often he asks to use the toilet. One of the days, we put Dad on the commode
nine times in seven hours which is due to the high volume of water feeding in
to his stomach through the PEG. Although
realistically the toileting couldn't be sustained on a daily basis, it’s
evidence that he will need the maximum package of care provided by social
services, which is two carers four times a day.
Mum and I have both received PEG training now as it will be our
responsibility to administer the water and care of Dad’s PEG and pump machine
when he is at home and we will be responsible for the hygiene and cleanliness
of the PEG around Dad’s stomach.
Having not
done any walking whilst in hospital, I was keen for Dad to keep acquainted with
his ability to walk. One evening, I
supported Dad as he walked out of the quiet lounge, along two corridors, before
walking across the big lounge to his ‘comfy chair’ - no mean feat I tell
you! Mum was right behind with the
wheelchair which Dad made use of a couple of times to rest, but when asked if
he wanted to continue walking it was very encouraging to hear that he did. It was a pleasant surprise for the nurses as
he walked passed the window of the nurses’ station and they could see his head
and shoulders going by – a little cheer went up. Usually they don’t see Dad as he is pushed by
in his wheelchair.
However, it
was disappointing to go in the next day and see Dad sitting without his splint
or shoes on. We were informed Dad had
another open red sore on his big toe as a result of the fantastic walking he
had done with me the night before. We've bought Dad seamless shoes and seamless socks, but still his toe rubs against
his shoe due to the foot drop
he is experiencing. A big help for this
would be botox in his foot or hamstring muscles. Unfortunately we have just received an
appointment with the Consultant to review Dad’s spasticity and it is not until
the end of November. Extremely
disappointing and frustrating when at the appointment in April, the Consultant
reassured me he would review Dad in three month’s time. It should have been in July not
November. A conversation and a bit of
support from the Patient
Advice and Liaison Service (PALS) may be required.
As I
mentioned earlier, the social worker met with us at the end of the month. He hadn’t seen Dad since he was back at NG
over a year ago. He was quite amazed at
Dad’s progress and told him as much ‘I am
not patronising you Alan, but I never would have thought you would be doing as
well as you are now after the last time I saw you at NG’. Mmmmm and isn't that because the NHS team had
written Dad off for any further rehabilitation?? Anyway – it was encouraging to hear and
especially as he himself is in his 14th year of recovery after a
stroke.
He asked
about Dad’s anger and told us it was difficult to shake off a reputation once
you’d got one. ‘Oh’ I was surprised –
‘so you’re saying Dad’s got the
reputation of being an angry stroke survivor then’? It appears he has – but maybe it has more to
do with the recurring UTIs he has experienced over the last year that leads to
the anger and confusion. This might be
the reason why the Consultant we saw in August documented in his report ‘this pleasant gentleman’. Yes Dad can still get angry, but only if his
left side is hurt or he is not listened to when he is experiencing pain. I have witnessed him go from happy Dad to angry
shouting Dad in 0.3 seconds and witnessed him throw his slipper across the
floor, but on the positive side, he reverts back to being calm just as
quickly. The social worker advised Dad
about thinking before he acted – advice he says he still needs to refer to 14
years on. Although Dad listened and
agreed, as with everything else, it was forgotten about pretty much straight away.
Each month I
end my blog thanking people for their support, that sentiment is especially
true in the case of my ‘new friend from America
This
demonstrates that all around the world families are suffering from the effects
of stroke. Awareness and research must
be supported – which brings me to my final point and I hope you are still with
me and that your hot drink has not gone cold!
Two of Dad’s
nieces – Katie and Helen will be running the BUPA Great Birmingham Run on the
20th October to help raise money for Stroke Awareness and Research. Celebrity supporters of the Stroke
Association who all have first hand experiences of stroke in their lives
include Karen Brady,
Adrian Chiles, Dame Vera Lynn and Jools Oliver to name but a few. It affects so many people from all walks of
life – so please help us to raise money for the prevention and treatments of
stroke. The research will aid survivors
to make the best recovery they can to improve their quality of life so that no
other family has to go through the experiences that we have faced and the
challenges we have yet to face. Please
support us by donating on their Just Giving Page:
I will be so
proud of them doing this for my Dad, their Uncle, and I will certainly be
cheering them on as they cross the finishing line after their 13th
mile.
Thank you all
so much for your time and for your support and for the strength you give my
family and me to keep going.
Love you Dad
x
Update 4-9-13: We've just heard Dad's been successful in getting social funding for the next 12 weeks at JC. Fantastic news, the pressures off and we can get everything in place for Dad to come home xxx
Update 4-9-13: We've just heard Dad's been successful in getting social funding for the next 12 weeks at JC. Fantastic news, the pressures off and we can get everything in place for Dad to come home xxx
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| Singing to his golfing friends! 14-8-2013 |
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| Regular visitors - Dad with his brother and sister-in-law. 19-8-2013 |
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| In the comfort of his own home. 24-8-2013 |
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| Dinner with Mum and Dad at home. 25-8-2013 |
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| Trainspotting! We take Dad outside to get some fresh air as often as possible. 31/8/2013 |
