Hazel joins Darwyn

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.