bunny Posted April 1, 2009 Share Posted April 1, 2009 I haven't updated because I always want to come with something positive and uplifting, and I wasn't sure what I've seen and experienced these last 3 weeks would qualify. But I see the truth here, so that's what I'll bring today as well. Suki settled in to the palliative care hospital very well. Calvary, while not fancy, is really a special place. They told us when we got here that they "admit the whole family." And they do. They have accomodated everything we've needed. The first 10 days Suki was there brought a flood of visitors from out of town and Calvary provided meeting rooms for us all to have meals together. There is a family-only relaxation-type room with a salt water aquarium that Levi talks about all the time, even when we're not there. "Blue fish! Big! Orange! Fish! Fish!" Like that. We've been provided with craft materials to workon Suki's chosen project -- taking hundreds of photos, sorting them, and getting them into scrapbooks and albums. Obviously, a bittersweet undertaking but one she loves. Mom keeps coming back to pictures of her father, who died when she was 16. She cried a lot yesterday over missing him. I have cometo believethat he will be her escort, as I have heard often happens when people die, and I am so glad. Suki has had so much loss in her life and I take heart from knowing she'll be with her whole family soon -- mother, father, 2 sisters -- who all predeceased her. Other favorites are pictures with my dad,whom she divorced more than 30 years ago, and other photos that indicate, to me anyway, a sort of inventory she's taking of her life. It is amazing and moving to watch. Her room is almost always filled with no less than 2-3 visitors, many from her years in AA as well as family. The good news: Suki's pain is well controlled by oral pain meds right now, she's in good spirits most of the day and she eats anything she wants, all day long. The bad/sad/real news: In addition to her incontinence, she has lost all strength in her legs. As of Monday, she can no longer get up to use the commode as she had been,and has found it very hard to adjust to that. She's been using what we've called "paper panties" for a while now,but she'struggling with the idea that she should really USE them now. She still gets in a chair each day and goes somewhere, either for a walk with us around the hospital (to see the fish!) or to a crafts class of some kind. But because Suki weighs almost 200 lbs,they have to move her with a hoist that she finds embarassing. We just leave the room and let the nurses do their thing. I have to say that 8 out of 10 nurses and aides at Calvary are incredible. Anyway, the worst part: her mental status declines daily. She is addled, confused, agitated and befuddled all day long now. She often forgets that she's dying, and when she remembers it's like hearing the bad news again. We go along with her wherever she is, because none of us see any reason not to, but it's so hard to listen to. "Yes, mom, of course you can come to Ireland with us this year." She takes great pleasure in planning new decor and paint for the apartment she'll never see again. She laughs heartily when she forgets a word, and loves to tell embarassing stories about me and Justin to whomever will listen. Despite everything I've said here,there is love and joy throughout this experience. So we're muddling through,as the song says. I pray things continue to move quickly and that Suki finds peace sooner rather than later. It will be excrutiating to lose her whether it's tomorrow or next month, so I would prefer tomorrow for her sake. I know this must be so hard for some of you with LC to read, and I am sorry for that. My mother has made the beautiful decision to allow her body to be used for research before cremation so some good -- any advance in how to treat, specifically, lepto meningeal mets and LC generally -- may come out of all of this. Thanks for all the LCSC love on Facebook. It's an easy way for me to keep in touch during the day while I am with Suki. Pray for us. xoxo amie Quote Link to comment Share on other sites More sharing options...
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