Catheter
bypassing in bed - On the morning of 26th July the carers came
in and had do a complete change of night clothes, although there were 800 in catheter
bag, but when all’s well it’s normally between 1000 1300. Then on the morning
of 27th virtually nothing in bag, but all night clothes saturated - I
passed urine numerous times and was aware of each occasion - a horrible feeling
to say the least! This is all in spite of having a super absorbent nappy on. Plus
of course Jean had extra night clothes, sheets and pillows to wash -
fortunately the special ripple mattress has a rubberised covering.
I had a new
catheter fitted on the 27th July - it’s now the 12th of
August and to date it’s been working perfectly. When operating satisfactory I’ve
no recollection or no sensation of urine going into the bag.
DNR- (do not
resuscitate) – it was instigated about 3 years ago, but time has
change, and I’ve now reached a stage of disability that I’m virtually reliant
on carers for help with all my needs. But I still feel life is precious and I’m
not yet ready to die, so I requested if my GP could reverse my DNR. He has now reversed the order.
What set off my change of thought regarding DNR was
I’d a week in hospital mid-March. That was a bad experience, with nurses working
flat out they had little time for a person with no communication and I needed
someone to feed me - so consequently I was bypassed at meal times. I’m sure the
family thought I was sent home to die.
New head
rest on motorised chair - congratulations to Alan the engineer from
wheelchair care and Janice our Occupational Therapist for their interest,
perseverance, and welfare to getting me reasonably comfortable with the new adapted
head rest. To try and stop my head slumping down onto the right shoulder. Most
days I can get up to 5/6hrs with the rest in place - longest stint at any one time
being two and a half hours. The Physiotherapist says I can now hold my head up
longer without help since it was fitted.
Swallowing
– I’ve no problem with this procedure, but even with my porridge, which
Jean has perfected to a smooth solid consistency I’ve got to roll it around the
mouth 3 or 4 times before swallowing- its as if the message is being delayed
from brain to action, but then I
suppose that’s what MND is all about.
A hard
thing to give up- is ‘my controlling nature’ which has been a strong
personality feature for as long as I can remember. But now comes the
realisation that I can no longer be in control of my own life, with Jean and a
number of carers tending to all my needs. All will say that if I am not happy
with any of their procedures I can still get my point across - yes it appears
I’m not going to give up till the very end!
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