Living with MND-2015
Well this is my first attempt at compiling my story this
year; suddenly in May I seem to have rallied regarding typing and use of the
‘lightwriter’
To date this has been a dark and challenging year with
the left arm/hand having to be lifted and placed by someone and the right arm/hand
also needs assistance to reach my rib cage. I don’t know why after four months
of further disablement I should get this positive mind set, but long may it
continue.
Catheter
I’ve
had numerous catheters fitted but all have had the problem of bypassing the
tube until the most recent one fitted, which seems to be working fairly
consistently: fingers crossed it goes on working!
Jean
Has finally been relieved of putting me to bed on her own. Now when carers come
in at around 8-30 in the evening to change me into pyjamas they put me to bed. It
means an extra two hours in it, but if that’s what it takes to ease Jean’s work
load, then so be it. I’m virtually in one position until the carers come in at
0700hrs the following morning. It can be a long night sometimes, but overall if
I get comfortable when carers put me to bed, my sleep pattern is quite acceptable.
Euthanasia
In an earlier installment of my story I said if ever I felt that my life had reached what I
considered unbearable I’d opt for euthanasia.
In the past year my disablement is now so severe that there is no way I
could function without constant care. Make no mistake, the deterioration since
diagnosed in 2005, has been ‘a long haul’- and am prepared for death whenever,
but I’ve a stronger urge to live.
I’ve accepted, and learnt to cope with what I can’t
change, - so could it be that there are no conditions in which a person
cannot become accustomed to - or nothing befalls a person what is in their
nature to endure.
Carers overall
Jean is my main carer,
she’s on call 24/7 - although there is a person who comes in for sleepovers two
nights a week and a Marie Currie nurse who spends one night to give Jean an undisturbed
sleep. Unless anything unforeseen happens, normally, I’d call the carer once to
change my position a night.
Communication
in bed
I’m at my most isolated and vulnerable- with my only
source of communication with carer upstairs- they have a baby alarm close bye. So
if I can muster a feeble screech- hoping they hear me. I can’t position and
operate the ‘lightwriter’ in bed - plus no specks on to see letters!
My
communication frustration with carers – especially Jean
Yeah,
having been married for over 53 years it’s very hard for us both, I would say
it’s harder for Jean to cope with my condition and as I get more disabled my
needs on Jean’s time more necessary. We
both have different ways of dealing with my illness - me it’s been loss of
ability to communicate with all carers, but especially Jean on these occasions
when I get frustrated which can very easily lead into agitation which can then
very easily turn into uncontrollable shaking of the body. Called CLONUS – ‘a violent confused motion of
involuntary rhythmic muscular contractions and relaxations caused by neurological
conditions.
Then of course I’ve the Councils very capable team of
carers that tend to my ablutions, showering, toileting, dressing/undressing,
and getting me up and out of bed. I can get up to twelve regular carers all
with their caring qualities, and characters. But all are dedicated making me feel
at ease and I’m sure they contribute a long way for my still zest for life.
to be continued......
Note from the techie - Gordon is finding the updating of his blog very difficult, but he is still determined to do it. He asked me recently how many hits he had to his blog, he smiled when I told him. He is still tickled to know his musings are being read across the world, so please do continue to check his blog - each hit helps keep him going. If you cannot keep checking back, please do add your email address to the 'follow me by email' box on the main blg screen, and you will receive an email when the blog is updated. Regards
