Wednesday, May 11, 2016

The Last Birthday at Home

BB, 68, not knowing what to do with candles.

I sent my regular check-in email to our case-worker on Monday morning after a very wonderful, albeit emotional, Mother's Day weekend in Asheville. No News.

And then an hour later there was news. A bed at an assisted living center (memory unit) was available for my Mom. She had been on the waiting list for four months and we knew a bed was coming available just didn't know the exact date. I had prayed it wasn't before her birthday or the wild Christ School 50th Reunion for my Dad and it wasn't. It let us have a huge celebratory weekend with my father's classmates, all of whom love my Mom to pieces. 

She moves in less than two weeks.

I sobbed at the email. My brain went numb. We are taking her from the home she has lived in for 33 years and leaving her some place strange. Some place cold. Without her beloved husband who she has massive separation anxiety from. Without her beloved Boykin, Gumbo, who she has even more massive separation anxiety from. Away from her plants, her birds, her gardens, her bed and her closet. From her bubble baths, her make-up and her jewelry. From all the comforts of her home that she loves so much, to a place that looks like a hospital and where she knows no one. 

This is the gut-wrenching part. And if I seem like I'm being melodramatic it is well deserved. 

We are concocting lies "therapeutic lies" as Dayna Steele so wonderfully emailed me yesterday morning. We are going to use the approach that she is getting rehab for her arm that has myclonus (jerking and moving on its own). We are making a packing list. I'm creating collages in plastic frames because no glass is allowed. We have to make an appointment to cut her rings off (her arthritis is so bad in her hands they are stuck) because apparently nursing homes are like a bad neighborhood in Detroit. I need to write her name on all her clothes we send like I'm packing her for summer camp.


And then there comes the moment my father, brother and I say goodbye and walk out of the facility and get in the car and look at each other. Will she scream? Do we redirect her like my friend Erin's parents did and had her go look at horses at summer camp while they drove away? Will she be scared? Lonely? Hate us? What do we do with ourselves then?

Or maybe she will thrive? Become the mayor? Dazzle everybody with her warmth? I received a comment on the blog from last week from one of her friends at Jazzercise and it could not be more true about my mother. 

Beautiful pictures. Barbara looks so happy. In fact she almost always is happy at Jazzercise. Even when she comes in a litlte serious, all it takes is the music to start and she is happy and singing along again. She still loves to say HI to everyone and spread her love and thanks for every little thing we might do to help her. She brings a smile to our faces even on days that we do not feel like smiling. Her love is contagious. 

Are we taking this broken bright light and placing it in a dark cave? I know that is not true but that is how it feels. We are ending her reign. Silencing her. Imprisoning her love. 

It is time. We can all admit that. We are well aware that most people would have done this ages ago. Being an Alzheimer's caregiver is taking away the Robin everyone knows and loves. And if I'm brutally honest it has done some work on me too. We know this is the best thing for her safety and health. But knowing it is time does not make this step any easier. 

Please pray for us, specifically my father. I'm treading water in this deep pool of emotions only by making to-do lists and emailing family and trying to create a room for her that she will love. I'm in project mode. I can collapse the day after.

I know we are not the enemy. Alzheimer's is the enemy. But that does not make these next two weeks any easier on our hearts.

Tuesday, May 3, 2016

Book Review: "Surviving Alzheimer's: With Friends, Facebook, And A Really Big Glass of Wine"

I read this book in one sitting. I could have written this entire book word for word. 

Not many people understand the heartache, the long drawn out goodbye, or the need for support...even if it comes in the way of a Facebook comment. Dayna Steele understands all of this too well.

Dayna chronicles the journey of her Mother's Alzheimer's diagnosis as she goes from Assisted Living to Memory Units to Memory Homes through her facebook updates and the corresponding comments she received. This is exactly what I love about Facebook and social media in general. In a Q and A session Dayna was asked: 
How did the support of your Facebook community impact you through this hard time?

Facebook became my support group. My Facebook community gave me ideas, information, suggestions and laughter and love. And, once I wrote a particularly hard post, I would let go of the negative emotions. It was very cathartic to write and share.

Facebook is also my support network. Between Facebook, this blog and the Alzheimer's Association I have been introduced to so many women, moms in particular, who are going through exactly what I am. It helps you feel less alone and what she said about it being cathartic could not be more true. I can post about Mom and it is a release, I am getting it off my chest and out of my heart. She used Facebook to keep her family up to date the way I use this blog. Because when asked 1000 times how is your mom you start to run out of good explanations for what stage she is in. And if we kept quiet about this disease it would be a disservice not just to our Mothers but the whole End Alzheimer's movement.

I wanted to highlight a few parts that really got to me.

December 13, 2013: "A simple explanation of this horrific disease: You go from beginning to infant to toddler to teenager to adult. When the "long goodbye" starts you go from adult to teenager to toddler to infant to end". She uses a conversation with her Mom where she is refusing to put on her shoes and drink her water but then offers her candy, and gets a YES please. We are in this exact phase with my Mother. My Dad walks her into daycare every day. He purchases depends. He hires babysitters. He is doing all the same things I am doing with a 5 and 1.5 year old.

April 25, 2014: "There are a lot of firsts and lasts with this. The first time you realize you will never get your special birthday cake from her ever again. The first time she forgets your name. The first time she asks how she knows you. The first time you tell your son to be sure to and get a picture because it might be the last. Yeah that one was hard". Holidays are the hardest. Last year I celebrated my birthday at their house with some of my girlfriends from Charlotte. I was hanging a birthday banner when Mom asked what it said and who was it for. I had to tell her it was my birthday all weekend. 

May 13, 2014: "Mom was just over for dinner. My aunt and uncle were over as well. After they all left it hit me, I can't hear her old voice. It is so overwhelming; I can't remember what she was like before this. Sad. Very sad." I told one of my friends this the other day and she said of course you can..but the truth is, I can't. I can't remember what she was like. I just remember this. This infantile shuffling person that has stolen my mother's mind.

I want to thank Dayna Steele for writing this book. And I want her to know I love her for sharing her story and for her love of wine. If you or someone you love is dealing with Alzheimer's I urge you to order this book today. I'm not saying that to make money, I'm saying that because not everyone can be as public as Dayna (and myself) have been about this disease. Some people mourn quietly. But this book and the comments on her posts will make you realize you are not alone in this tragic and brutal battle against Alzheimer's. And just for Flo's sake, I'm going to buy a Lottery Ticket.

(special thanks to Erin Carroll for forwarding me this opportunity!)