A letter I wrote to Virtual Hospice:

My mother is 89 years old. She has extreme scoliosis from polio as an adolescent, macular degeneration and glaucoma. On 29 June 2010, she had a stroke which made it impossible for her to communicate for 2 days. She was in the local hospital for 16 days and improved significantly over that period of time. Our family: my sister, brother and I fought to have her live at home instead of in a long term care facility. I have been fighting MS for the past 16 years, but 3 weeks prior to Mom's stroke, I was treated for CCSVI by angioplasty and my MS was eased greatly. I am now my mother's caregiver and get help from my 66 year old sister when she's able, from Red Cross for 14 hours a week, and from three nights of VON PSWs who allow me to get full nights' sleep. She is at risk for a fall, so we have a motion sensor that alerts me when she sets foot on the floor, as well as a nursery monitor which lets me be aware of her condition in bed at night so I or a VON member can be there if she needs us during the night, and to ensure that she remembers to use her walker on her trips to the washroom.

Prior to her vision failing, she read books constantly. Then talking books were a wonderful way for her to keep up with her 'reading'. We intend to try them again soon, but her attention span and concentration are lacking since her stroke, so we fear that this too will fall by the wayside.

Our days are basically spent in silence because music or radio bothers her, and she can't see the TV well enough and has no patience for it. I purchased a laptop computer in November so I'd have something besides crossword puzzles to do and to still be near her. I would try to engage her with easy crossword clues to stimulate her, but it was not something she enjoyed, but rather found it annoying. Most of the time she stares across the room or at the ceiling, and conversations are laboured.

Mom's language has not fully recovered, and she struggles and is frustrated with trying to find words that elude her. Sometimes we are able to finish her sentences when she asks, but concepts are difficult to grasp when attempting this.

She was in hospital in October with renal failure due to dehydration. She has since started drinking more, and everyone is vigilant in making sure that she takes in plenty of fluid.

She has been assessed as being in a palliative state, but does that really mean anything for someone in her state? When my father had cancer and was palliative, it meant something because we could see that he was dying and knew what to do to help him die with comfort at home. We assume my mother is dying, but is that a relative term, or is she dying in the sense that really we're all dying? During her stay in hospital in October, her blood pressure was at times in the 180/XX range. Last Thursday it was 100/60, two weeks ago 120/65, a month ago 110/60.

Mom has bad dreams on the nights when it is just the two of us here. They are more like hallucinations sometimes, and they seem to linger for the whole night, easily remembered the next day in spite of the dementia and memory troubles. I get called back to her room two and three times after a trip to the washroom some nights, having to reassure her that all is well. On the nights when VON is present, there is never an issue for her. Each of the three women report a 'good night' when I get up in the morning and can't understand why they never see any of the 'action'.

Another issue is eating. She is slowly narrowing down what she will eat anymore. Part of the trouble here besides the taste, texture, etc. is that she is sure that all fruit and fruit juices cause her to have bowel movements too often. She is extremely
focussed on her bowels and how they move, but they've never been much of a problem except that they're a bit messy to clean up.

At times I feel as though I'm slowly losing my mind and am amazed at how much patience I have for all of this.

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