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. 

Thursday, December 21, 2017

Pillows for Christmas-An Update on BB-December 21st

I posted an update on Instagram but since I keep that private I wanted to do a post here for family that is following our journey along.

Dad went to visit Mom last week and she was sound asleep. We both assumed it was the ativan (for her outbursts/myoclonus) and dilaudid (for her osteoarthritis) making her sleepy. She didn't wake up or realize Dad was there visiting. 

Hospice has ordered her a new reclining chair and it should be there by this Friday. Her current new chair does not support her head and neck enough so she ends up being slumped over. I am leaving first thing tomorrow to meet her new Hospice team.

They have requested we buy pillows, as many as we can to prop her up, keep her comfortable, etc. So, this year BB will get pillows for Christmas. 

Concerned over her increased sleeping I reached out to our team and while the update isn't wonderful, having a team in place to answer all of these questions is....

Mom is sleeping more due to the overall neurologic decline. Her mind is dying, and it is tired. It is partially from the drugs but mostly from her body and mind signaling a slowdown.

Tuesday we were informed she is no longer eating or drinking very much. Thickened liquids are just as difficult to take in and she is not opening her mouth for bites. They will try  pudding and ice cream to see if that works. We will not do a feeding tube because there are so many adverse reactions to that type of supplement. You can read about that here and here.

Most of Tuesday Dad and I called each other crying. Of course this is what needs to happen, but it doesn't make it any easier to comprehend. On Wednesday Dad went to one of her meals and she did take a couple bites of food and had some apple juice. So maybe not as imminent as we had thought the day before, but possibly soon.

Our amazing Dean Todd is coming Friday with us to give BB communion. We will sit down with her incredible team of caregivers and try to ask questions that they might not have answers to. 

I will try to update more frequently as this process happens. Mainly for family but also for the friends and friends of friends that message me weekly going through the same thing. I cannot tell you how often I receive an Instagram DM, twitter DM, facebook message, email about someone that knows someone that just got diagnosed. I am flattered they come to me as an expert, (which I'm not sure that I am) but I want to do all that I can to help people going through this disease. 

Beginning in 2018 I am going to post on her journey from the beginning, as requested by a dear friend. The warning signs, the differences between ALZ/Dementia, how we got diagnosed, what we did after...etc. 

This is a difficult time of year for so many. Please show each other grace and love. I think I got half of our Christmas Cards out and I'm missing gifts for so many, just know I love all of you very much and have thought of the BEST gift ideas ever, my execution is just off.

Thursday, December 7, 2017

Southern Bourbon Mountains Christmas Wishlist 2017

The best gift ever. Pictures of people we love. *already framed is key
(Scene from The Family Stone, a fantastic Christmas movie)
My number 1 gift? Old pictures of my Mother I have never seen. Or an email with a great story.

I have read dozens of gift guides and quite frankly they used to be my favorite types of blog posts. But after the explosion of the holidays what are you left with? Junk? Stuff? Another pair of silly earrings? (Mignonne Gavigan are serious earrings and do not fall into the silly category...hint) Here are a few things that are more of boring practical needs than wants that have been on my wish list. This is probably because I am approaching 40 and am trying to not be a hoarder of cocktail napkins and candles. (Both always welcome still while I have cabinet space)

I am -5 and -4 in my eyes and HATE my contacts. I have tried everything and they have me on dailies now and I feel like they are too flimsy...anyone else? I wear my glasses M-F and only put on contacts if I have plans. My current glasses are Tory Burch from my eye doctor and I think insurance covered part of them. The issue is they are BEAT UP. Toddlers, hair dye, zit cream...I have no idea what but they are losing their tortoise shell in places so I would love to have one or two new pairs since I wear them constantly. I visited our local store recently and (apologies for so many pictures of my giant forehead) and here were the ones I liked. My brother said I needed round so I didn't look like a secretary...thoughts?

 I have so many things to be framed. (And no wall space I might add) But I have been sitting on at least 7 favorite things for awhile and would love to take them in. Question, what is your opinion on frameless paintings? They have a store right up the street at the corner of Quail and Carmel and the NICEST and most helpful woman runs the place. And I'm an ass and can't remember her name. 

I own this in blue and it is the most comfortable sweater ever. I might just go ahead and order it today and apologize to our credit cards later. Thank you to Caycee for posting about this last year. It is my favorite!

Sams doesn't have my Fuggs (Faux Uggs) this year and I've had these for 5 years and it is time to get a new pair. I think Uggs are seriously hideous but so were my Merrells and I loved those. I work from home so I live in these things from November - March. I wish I didn't. I really wish I got up and showered and put on make up and did my hair but.......ain't nobody got time for that. I just cannot handle spending almost $200 on glorified slippers. So if anyone has seen them at Sams text me! (Also Reese's hair would be great too thanks)

I started following Lindsey on Snapchat and fell in love with her honesty and humor as she struggled with fertility. We have met several times and are still trying to get our boozy dinner date with Kate planned. She offers makeovers where she shows you how to use make-up. Because at 37 I still don't know how. She has to promise me no brushes though. I'm a fingers on the face girl because make up brushes......ain't nobody got time for that.

Family photo session
This is impossible to plan for us because my stepson is only with us certain times of the year. We got a great picture at the beach but I have lost a significant amount of weight since then and as a vain human being would love new pictures by a professional. We never do this....in fact I have done this twice in my years as a mother and if I could I would have pictures taken every season!

I will finally feel like an accomplished adult if Leontine, Biscuit or D.Porthault ever grace my mattress. Oh and Amelie needs too. I'm a King, she's a double. 

Let's do 6 bottles of Leese Fitch Cab, 3 of Waccamaw, 2 of Banshee and 1 of Willowlake. I would do the reverse but I'm being considerate to my gift givers. 

New Laptop
 I wish I had space for another desktop but my double monitors for work take up my only working place. I have finally started using LightRoom and all the old floating laptops around the house don't have the right encryption for that type of software. This is a huge present and I don't like my husband's tiny surface pro so it would need to be something significant. And I'm not a Mac girl, I prefer Dell/HP/etc. 

I would also love hardwood floors, monthly facials, a garage, a BMW X5 in Carolina blue, a stylist to get me out of my fashion rut....you know the basics.

Merry Christmas you filthy animals!