Update from Suki and family

[bunny]

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

[MsC1210]

(((Amie)))

I don't post here much any more but I do stop in and read now and then. You know I have been following your updates on Facebook so you know you and Suki have been and remain in my thoughts and prayers.

I am so sorry that you are all going through this but I am so glad that Calvary has been such a wonderful experience. I completely understand how you feel and I am sure that your post here will be greatly appreciated.

Much love and many continued prayers for you all

Christine

[fillise]

((((Aime))))

It sounds like You have found a wonderful place to help everyone with Suki's transition. I pray for peace for Suki, for you and for your whole family.

Susan

[jstdzy]

Bunny,

You've probably already thought of this. But my friend made a tape recording for me of voice mail messages from my Mom. It really helps to hear my Mom's voice now that she is gone. Would Suki like to do something like that? Record messages to you guys? Many, many prayers to Suki and your wonderful family.

Dana

[SandraL]

Thanks for writing Amie. Your words are beautiful. It is nice to hear of the great place you have found for Suki to be cared for. It sounds like everyone is making the best of it and that Suki is enjoying her days as much as possible. God bless you all and may he give you continued strength.

Sandra

[shineladysue]

(((Amie))),

I've been trying to follow your updates on facebook and I just want to let you know that my thoughts and prayers are with Suki, you and your family. You are truly amazing , Suki is so blessed to have you . Calvary sounds like a good place to be. My heart aches for you and yours. God Bless.

Hugs,

Sue

[dchurchi]

Bunny,

I do not post very much any more, but read almost daily. I feel your pain,

and understand the prayers for a quick and peaceful passing (I prayed for the same

for Alan). I only wish I had made my memory scrap book while he was still alive, but

my mom, sister and nieces made one after Alan died. It help us heal and I look at the

book often.

I will continue to keep you and your family in my heart and prayers. I have never been

on facebook, but will try so I can keep better contact wih you.

[SBeth]

Amie,

I am so very sorry. Your post has brought me to a stop in my, usually hectic, day. I can feel the pain in your post as well as the courage in your words, thoughts and actions. This is not the easy part of loving someone and being there for someone you love. Your mother is in good hands and in God's hands and I hope and pray that she finds the peace she so deserves...as you say....sooner rather than later. I am grateful that you are finding Calvary to be a positive place for this experience. I will keep you all in my thoughts and my prayers to continue to have the strength to muddle thru. Please know that many of us here understand and love you.

[Maryanne]

Amiee, your mom is a very coureageous woman. We know how hard she faught. Iam so sorry it has come to this, but so glad her pain is under control.

Please know that I have her in my thoughts and prayers. You are such a wonderful daughter and I know how proud she is of you.

You know we are always here for you.

Maryanne

[carolhg]

Keeping you and your beautiful mother and family in my prayers.

Carol

[Treebywater]

Oh Am.... I've been out of the loop. And I'm so sorry.

My heart is breaking for you my friend. I didn't want you to have to go down this road. I'm so glad that Suki has you with her. Hold her close and look for those Suki moments to cherish.