Update

Mom's condition continues to deteriorate, but she is being cared for and loved around the clock by myself, Kirk, her flow of friends coming to visit, as well as nurses' aides. Currently, we are trudging through a very uncomfortable issue with mom's catheter, which appears to be blocked. We are awaiting the arrival of the on-call nurse which is (quite literally) painfully slow. We are holding her hand, stroking her forehead, giving her kisses, and trying to make her as comfortable as possible in the meantime.

She spends most of her day either sleeping, laying in bed listening to Kirk or myself read her a book (Harry Potter or Janet Evanovich), watching a movie, or sitting with a visiting friend. She can no longer walk. There are many tears from her throughout the day; a symptom, from what I've read and heard, of the tumor. I can only imagine the deep sadness and confusion that comewith such a terrible illness, and how frustrating it must be for someone as verbal and articulate as mom not to be able to explain to herself or anyone else.

I would like to take this opportunity, my first post in a long while, to express my and Kirk's deepest gratitude, thanks, and love for everyone who has helped mom, and us, through this time. Your kind words sent by email, "snail mail," and phone calls touch us all every day. The visits, flowers, food, gifts, and ongoing emotional support make it impossible for mom, Kirk and myself to forget how surrounded by love mom is. It means everything to know you are here with us.

Please continue to call, visit and send your love and good thoughts this way. Every word and every sentiment is deeply appreciated, and returned to you, even if we have not yet had the time to express it.

For my part: my greatest thanks to you, mom's friends and co-workers; I have hardly had a chance to speak to any of you, as many of us have never met. I will never be able to express my gratitude for the love you give her in these impossibly hard times. You are her family as much as I am; it gives me such pride and comfort to know that she is so wonderful, as I always knew, to have made such truly spectacular and good friends in her life.

-Dani

*As a side note: I deleted a comment from the previous blog because it was inappropriate and inaccurate. I will not tolerate passive aggressiveness toward myself or anyone in this house, especially on a blog that is meant for love and well-wishes for mom. Mom is not invisible, and there is not "only one" keeping her loved ones informed about her state of health - she has a stream of visitors, phone calls and mail all week. All anyone who wishes to see her need do is call and help us find a time that will work best for theirs and mom's routine. Mom's is tricky these days, and her windows of opportunity are few, so sometimes it takes us a few tries. But no one should be shy about calling, writing, or working on setting up a good time for a visit.

Thank you all, truly, for your love, positive thoughts, and support.

sending stories?

Jon and I each had a chance to see Alison this past weekend. Her condition is slowly deteriorating as she becomes weaker and with more debility. While I was there, she mostly slept. When she was awake, she could participate a little in conversation, mostly with one or two words to interject or react. Word-finding is so hard that she can’t complete a full sentence most of the time. But she clearly understands well what is said – she takes in language just fine, the problem is in getting the words out.

Kirk has the downstairs set up as her room. She has a hospital bed, and hospital-type amenities as she really can’t get out of bed except with a lot of help. She seems to prefer her eyes being closed –she listens, but it seems like it’s a lot of work for her when her eyes are open. Her appetite is OK, though not as robust as it was even three weeks ago. Kirk has arranged for home health aides to be there for both a day shift and a night shift, so he has that kind of on site support for Alison’s care, light housekeeping, etc.

Sometimes she seems so terribly sad (frightened? Unhappy? Frustrated?), though she doesn’t have the words to really explain why. Some nights are good and she sleeps well, some are fraught with restlessness or agitation. She does like a good laugh, and will chuckle away at a funny story.

I have the idea that she likes to hear the “old stories” – things that happened some years ago, that make her laugh or smile. I wonder if those of you with a good “Alison story” could jot it down and send it to her in a card, so that she can share a smile with you about something that made you laugh or pleased you both? Alternatively, if you want to post your story as a comment on the blog, I’m sure someone will read it to her. While her short-term memory is massively impaired, she has great long-term memory. If you have the inclination, I think your stories might really cheer her up. Thanks so much.