Tuesday, January 16, 2018

Are You in The Right Room? BB Update January 15th

"Opera House" by Jenny Andrews Anderson
 (of MFAMB fame)

I haven't posted an update because there isn't much to post. I am headed up to Asheville this weekend to see BB and for a baby shower. I am trying to shake the guilt that I am not up there more often but I need to remember these two little crazy children are my main priority. And my job, and my life here.

We received an email from one of Mom's amazing Jazzercise buddies. These women visit her regularly and helped us so much in those beginning stages. They brought Mom home from class, took her out to dinner, they even hosted a class for all the patients when Mom was in the Alzheimer's wing.

They stated that she was sitting up in bed watching TV (something she has never done since moving to Aston) and told them she loved them. I jokingly asked Dad, where they in the right room? Laughter.......you have to try to keep a sense of humor throughout all of this. I love that the TV was on. She doesn't look at it but I would imagine it would be comforting to hear the familiar Hoda in the mornings. I get lonely working from home and sometimes put on Friends episodes as background noise in the afternoon.

I'm guessing this recent stability is from her either being leveled out on her meds or hanging out on the "up" part of this seesaw phase. I love that those incredible Jazzercise ladies got to see her looking so good. I'm hoping for a smile this weekend.

We received an email from our hospice team over the weekend and she is down 8 more pounds, after losing 17 in three weeks. She is eating around 25% of her pureed breakfast and lunch with a little liquid.

Dad and Beau and I are doing okay. We all spent my father's birthday together and that was so needed. I'll post a recap tomorrow. I honestly didn't want to go on this trip for fear Mom would die while we were gone, but hospice urged us to go. It was so good being together and getting away.

Now we just wait. I am still trying to trust in God's timing. I am trying to move forward with life here in Charlotte. I still find it so difficult with my Mother's death looming on the horizon. Waiting for your Mom to die while trying to maintain some normalcy for young children (or your marriage) (or your job) is not for the weak.

I want to thank you all for commenting on my posts, instagrams, sending me texts, DM's, tweets, facebook messages and just following our story. Lots of people eyeroll social media but since I sit in this home office M-F with not much human interaction it really really does help. I love you all so much.

Tuesday, January 2, 2018

Update on BB-December 23-January 2nd

Hello everyone,

I'm sorry I didn't post an update sooner. I meant to post an update after seeing Mom on the 23rd but I was shocked at her decline and didn't have it in me with Christmas looming.

When we went to see BB she was asleep in her new chair and made no response to us being there. Seeing her in that state was a shock. The Priest that married us, Todd Donatelli, was there along with our best family friend Alice Myer to give BB communion and pray over her. It was a beautiful and therapeutic moment as Todd prayed over Mom and we all held each other. Alice had her hand on me, I had my hand on Dad and Mom, Dad had his hand on Mom and Todd had a hand on Mom and Dad. It would have been a beautiful picture.

After communion our Hospice nurse and social worker came to visit and give us an update on Mom. She has slowed her fluids/food and has lost 17 pounds in the past 3 weeks. She would most likely become bedridden in the imminent future. I asked if my brother should try to change his flight as he was coming to visit on January 5th and they said yes....

After the Hospice nurses left Mom's music therapy began. We hadn't planned on staying for that but I'm so glad we did. We sang "I will", and "I get my with a little help from my friends", "Carolina in my Mind" and ended with "Away in a Manger". It was beautiful. Mom started moving her feet a tad and we weren't sure if it was to the music or just one of her muscle jolts. Here is a short video (don't laugh, I didn't know all the words)

At one point I was standing above her and talking to her and she opened her eyes and forced a tiny smile. I think she knew I was there.

On Christmas day we went as a family to visit BB and she was in bed and didn't respond much at all. She briefly opened her eyes as Ford snuggled up to her but that was as much as we experienced that day. Ford has been very emotional about BB. I think because he and I are so close so he sees me get sad. Any recommendations on books/readings for kids would be helpful. 

The day after Christmas I went by with Dad and we met with another Hospice nurse. BB was in bed again that day but we did hear that she was drinking a tad more and ate some pureed breakfast.

I held Mom's hand when Dad stepped out to speak with the nurse and told her I was okay if she wanted to go. I had several friends tell me this was a good idea and I wanted her to know I would be okay. 

I came back to Charlotte heartbroken but with a purpose of planning in my head. We worked on her obituary, I made checklists, set out to find a size 6 navy blazer, made sure Max's dark suit was clean. I have had my dress for awhile, (I think) and Amelie will most likely wear the Skylar Bee Dress from The Proper Peony. It has three Bee's..... for our Barbara Brown Boylan.

But on the following days BB has showed improvement. She began opening her eyes more and smiling for visits. She is still taking a few bites of pureed food and drinking about 100 cc's of juice.

If I don't sound thrilled I apologize. It is confusing. I don't want her to go but this roller coaster is an emotional storm. While most have been celebrating the "new" year with a "fresh" start, I have been thinking that I will be planning a funeral in the coming weeks. There is a great article that can possibly explain this confusion/pain on Scary Mommy called "Watching your parent die is absolute hell". 

I wish I had better words to describe where I am. And what this feels like. I'm also mentally spent with school being out and a long weekend full of solo parenting duties. If that makes me sound like an asshole I apologize again, but good Lord 3 year old girls are crazy. CRAZY. Irrational, moody, nap dropping potty training failing adorable crazy little people And I always always want to remain authentic. I'm not going to paint a rosy picture. BB will die soon, and just when you think you have everything figured out it switches paths and gears. I need to trust in the Lord's timing. I am trying to. But because I see no quality of life for her.....experiencing and watching her die this slow death is awful. She looked like she was dying on the 23rd. And now she looks like she did back in October. I just don't understand.

I know that I should be living my life right now. I want to put Amelie in Ballet. I need to find an indoor soccer league for Ford. I need to plan my father's 70th birthday in 6 days. But I feel handicapped and frozen in place as I wait for my mother to die. I feel like I cannot move forward until then.