Laurie's health since the last update two weeks ago does not
appear to have decreased very much. It seems that her significant decline a
couple of weeks ago has now levelled out. This "stepwise" decrease is
associated with her disease. Apparently, the next step of decrease could
involve her ability to eat or to walk. Her eating is generally fine
now but her walking is very challenging. She does have
physiotherapy each weekday to help with walking and to do some isometric
exercises from her chair in the room. I have spoken with two other doctors
about their views on Laurie's situation and both indicated essentially what I
have been hearing from other doctors who have treated Laurie. That is, nothing can
really be done for Laurie except make her as comfortable as possible. Laurie
was to have an MRI in December and I need to make a decision on whether this
should go ahead. She would travel in an ambulance from Kemptville to Ottawa for
the MRI scan. Although this is my decision to make I did ask the doctors for
their thoughts. Collectively, they feel that the MRI would cause Laurie anxiety
and stress and that there really is no real value in having one done.
I feel that I should be doing as much as possible for Laurie but the
doctors say that I already have. The issue of "quality of life" has
been discussed and having Laurie undergo another MRI is not adding to this
important element.
There is a local hospice in the community and three weekday
mornings we have a volunteer coming to the room. They come about 08:45 and will
stay up to a few hours. They have some training and seem very nice and caring.
While they are visiting I can head out and do errands. Once Laurie is out of
bed and sitting in her chair it is important that someone be there with her. I
am now there before 08:00 and stay to between 21:00 and 22:00 although I can
leave for a few hours in the afternoon if Laurie is sleeping. Laurie has two
very nice baths each week. There is a special room with a highly
engineered bathtub. The tub looks like a bob sled or some type of
interplanetary travelling vehicle. It has a various features such as a tilt,
whirlpool and water temperature controls. There is a shower head on a hose that
is used to wash the hair. I saw this function for the first time today. Laurie
is somewhat anxious about getting into the tub. She requires
the assistance of the nurse of course. Once she is in the tub she seems to
enjoy the session. It would be nice to think that Laurie could have more of
these baths each week but nursing resources being what they are not all wishes
come true.
There are many nurses in the ward. My estimate is between
eight and eleven. I now know most of their names and also their approach to
taking care of Laurie. The majority are very good but I feel that there is some
room for improvement with a few. At least once a week I take in a box of
Timbits for the nursing staff. They seem to appreciate this and it is the least
that I can do besides bestow my thanks when they do help Laurie with the
daily requirements of washing, toileting, giving her warm blankets
and fresh linen and getting her pills to me. There is a nursing call
button in the room which usually results in the appearance of a nurse
within a few minutes. There have been some occasions though when I
have had to ring the button a second time since no one came
after ten minutes. This is something that I find frustrating and hope will
improve. The nurses find Laurie to be very likeable. They like her warm
smile and her naturally curly hair. They must also appreciate the fact that
Laurie is not a demanding patient. Laurie continues to pocket some fluids but
not as much as last week. She is not able to spit out the toothpaste and water
after having her teeth brushed which is a source of frustration. I usually
brush her teeth and give her some water to rinse, which she does, but she
simply holds everything in her mouth. It has taken 15 minutes some nights
before the water is released using the toothbrush as a sort of probe.
December 1 2012
We had a few visitors over the past two weeks which was
nice. There are now two nice sun catchers of the crystal variety hanging in
front of Laurie's large window. She does like these things and I have noticed
her watching them. They look especially nice in the sun but this has
disappeared for the past few days. As well, Laurie and Darwyn have a new
24/7 friend. It is a very soft and cute bunny who came to us as Aesop. However,
Laurie had a very difficult time pronouncing the name so the bunny is now named
"Hazel". Hazel was one of the rabbits in the book "Watership
Down" written by Richard Adams in 1972 that we have both read. Hazel
is also the colour of Laurie's eyes. Although Hazel was a male rabbit in the
book, he was very brave and a very good thinker. I believe that most of
the rabbits in the book were male except one. Thanks to Wikipedia's listing of
characters in the book, the only female rabbit was named
Hyzenthlay....hard for most people to pronounce so Hazel it is. I think that up
until today Laurie was able to say the name "Hazel" when she played
with her. Today, Laurie spoke very little - perhaps only five or six words. I
think that the warm bath makes Laurie more tired and this may have accounted
for her being quite quiet. However, it could also be the tumour that is further
impacting her ability to talk.
The week ahead should bring some warmer temperatures in the
high range of 5C to 11C. This will give us an opportunity to go outside in the
wheelchair for a little while for fresh air and the sounds of outdoors. Laurie
really seems to enjoy these outdoor stays and is watching everything that is
moving. Her curiosity is still there but I really wonder what is comprehended
from her eye movements. Laurie continues to watch television but I do not know
what she is perceiving from this. Is there any difference in her cognition
between watching a cooking show and a football game? I know that she has
watched, as I have, the same cooking show three or four times. She seems
equally interested in them all which seems to indicate that she is simply
watching movement and hearing sounds but not understanding the dialogue or
content.
Although the days seem to be very much like one another I
look forward to the next morning when I go and see her. Sometimes she is still
sleeping or is in bed playing with Darwyn or Hazel. On occasion, the nurses
have gotten Laurie up, washed her and she is sitting watching television when I
arrive. There is very much a routine to the days but that does not mean
they are not special. Each day, each hour and each minute is special whether
Laurie is awake in bed or sleeping, watching television, eating, sitting
outside or listening to some music. I do not know how Laurie feels or what she
is thinking with my being there by her side. This is all that I can
do for her - to touch and hold her and to do whatever I can to give
her as much quality to her life as I can. This is something that I tried
to do over the last 18 years being with Laurie but it seems much more meaningful
now.
