Giving
up things outwith my control
To avoid frustration, agitation,
and ultimately turning to panic in a still alert mind - believe me, this is not
a road any sane person wants to go down!!
To expand on the above comment - it’s not life I’ve
gave up on, but on daily things that happen to me now as I get more disabled
that can very easily fester and become monumental.
Use
of the ‘Lightwriter’
With the ongoing disablement I
really miss the machine, which turns the printed word into speech for the quick
response to every day conversation.
Whether the Speech Therapist may be able to solve the
problem is in the lap of modern technology and the dedication of those involved
in my welfare.
Upped
fluid intake
We decided to up fluid intake through stomach
via PEG from 2litre to 3litre, because of fairly frequent bladder infections
resulting in having to change the catheter on each occasion.
Adjustments
to bed position
Over the past 6 weeks I get carers when
putting me to bed to put me hard to the left hand side of the bed with only enough room
for a pillow between the safety rail and my body.
I now line this up with the open curtain - and to my
satisfaction.
I’ve never had to call the carer in attendance - unless
they come in on a voluntary basis to check up on me. This makes me feel good
having not disturbed the carer, specially when Jean is on duty.
Regarding drawing attention of the carer on night
duty and the deterioration of my voice, it’s difficult to draw their attention with
my now feeble audible screech.
Marie
Curie nurses
I can’t say how much we appreciate the
overnight attention they give us.
