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!)


Friday, April 29, 2016

Christ School Hits for the Class of '66

My Dad and his boarding school buddies are one of the most entertaining groups of men you will ever meet. Their 50th Reunion is next weekend and I'm working on a mix for them to kick off my fundraising for our ALZ Walk.

Here's what we have so far..
(There are 33 songs total, make sure you use the gray slider on the right to scroll down)

What else? Anyone feel like shagging?

Tuesday, April 26, 2016

Kristen Lequire Photography-My Mom

Last year I asked my friend Kristen Lequire to take pictures of my Mother with my kids. Thinking about that decision now I wish I had done this yearly. I have to admit that I am frustrated reading posts about Mother's Day and what to buy them when in reality do they want anything but love from their children? I don't blame the people writing these posts but I think I have entered the angry phase of grief. You get to buy your Mom perfume but my Mom wouldn't know what to do with it.

 I think the place I am in with my Mom's Alzheimer's has put me in a position to look at my memories of and with her and realize that at this point a "thing" isn't what she wants at all. Maybe some flowers, framed photos and time. Time is the gift I wish I could give her. I will pat myself on the back and admit that I have done a generous amount of quick trips up to Asheville for her birthday or Mother's day or just to spend time with my parents over the years. Right now of course, as a mother myself, I would love a new dress or some new shoes but I think when I'm in my 60's I want time. Time with my kids. Memories. Moments. Love. Hugs and Kisses and hand-holding. Group shots on the ever present Pawleys Island hammock and bloodys with Dad's Shrimp and Grits. 

It was a rainy and dark day that Kristen came to the house for photos and she still captured the bright beautiful smile of my Mother. Thank you for these Kristen, I will cherish them forever.

BB turns 68 next week and along with Mother's Day I hope we get to have a beautiful celebration for her. 

Friday, March 18, 2016

Traveling with Alzheimer's-An Update on BB

Last month our cousins from Nashville called my Dad and offered him their condo in Marathon, FL. They had rented it for the month of February and my cousin's heart doctor wouldn't let him travel so he generously gave it to someone he thought could use it. My Dad called me and said is this crazy? And I thought, Hell no. My father LOVES the water and I know that our time with BB is dwindling. Carpe Diem I told him and he booked their flights immediately. 

Then I started thinking......you know how you are used to your kids being in daycare and then when you go on vacation it isn't vacation? Dad wasn't going to be able to do this by himself. Technically he could but he would get absolutely no reprieve. So I talked it over with Max and we both agreed I should also carpe diem and book myself a trip down there.

I arrived on a Monday into Key West and once in their rental car heard BB's familiar phrases. "I love you". "Yay". "I miss you". Those are some of her favorite things to say these days. 

We went to Blue Heaven for lunch (THE BEST!) but unfortunately since my flight was delayed we hit the lunch rush so had to wait at the bar for an hour. Mom gets testy waiting. Thinks that people are cutting in front of us, annoyed at people standing close...etc. She wandered over to listen to the live music and danced (wiggled) a bit and would get angry if we tried to get her to come sit back down. She cannot go to the bathroom unattended  and I was thankful I was there as this gets very awkward for my dad in public restrooms.
Once at our table all she wanted to do was pet the cats (which they ask you not to) and clean off the windowsill from leaves. If her food isn't finger food she needs to be fed and you will catch her doing things like drinking the ketchup to putting a knife in her drink. 
This is about how most meals went that week. I would sit with her and feed her and make sure she didn't chug her cocktails and try to keep her happy. She knocked back half a pina colada once and I said whoa BB, let's slow down and she got VERY ANGRY so I had to redirect her and point out fish or pelicans that were close by. It worked thankfully. She is much easier to redirect during the day. I am almost like a court jester to a queen. Keep her laughing and happy and she will be okay.....

Our daily routine would be Dad and I up early; he would go for a walk and I would log into my laptop and work from about 7am-11am. BB would come downstairs and have her breakfast on the couch and watch the Today Show while cleaning up specs of dirt on the floor, the table, anywhere. We would venture out everyday for lunch and tool around the different Keys and then back to our place for the afternoon and then back out for dinner. I forgot how beautiful the water is down there and we ate nonstop amazing meals all along the water. 

The entire trip had mom totally confused. Whose place were we staying in? She thought her cousins owned it, that took 4 hours of repeating the explanation to get her to stop asking. Tuesday when she woke up she had no idea I was there and couldn't figure out when she saw me how I got there. She no longer walks, she shuffles but its almost a shuffle stomp. She hangs on to her purse barely just as a kid would drag a lovie behind them. 

I was thrilled that Dad was able to go fishing one day. That made my whole trip worth it. This man loves boats and being on the water. If Mom didn't have Alzheimer's he would have rented a boat for the week and been on there every single second.

But the entire time he was gone she didn't know what to do. Where is he? Why hasn't he called? How is he coming back? How did he get there? She didn't articulate as I have typed but those were her general questions. Her way of asking is "My Man?" "When coming back"? 
Even when he would step outside for a business call or to see the sunset she would wait at the door for him, almost like a puppy dog. Her separation anxiety from my father is off the charts.

Our last day my Dad woke up with the stomach bug. Normally this would be no big deal but this was too much for mom to understand. I ran to CVS and got anything he could need and made her lunch ahead of time but I was scheduled to leave Key West (1.5 hours away) at 3pm that day......and nobody to take me there. I offered to change my ticket but Dad insisted I leave. I think this was a realization for the both of us. If Dad's health takes a turn, even for something like a stomach bug, he has no help. Mom sat there so confused and saying she wanted to leave not understanding Dad couldn't drive. I ended up taking uber to Key West but the entire situation brought new light to what we are dealing with. Dad cannot do this alone anymore. He has daycare during the week but what if something happened to him at home one night? Mom wouldn't know what to do.....

I think in BB's eyes she enjoyed Florida. She got to see manatees and dolphins and made friends with pelicans. Animals are her favorite thing right now and everywhere we went she could talk to them. 

But I don't think she loves traveling anymore. She likes to be somewhere familiar and while she uttered her other favorite phrases "I love it here", "So beautiful here", we know that this was probably her last big trip. She would get very tired just walking around a few of the resorts and went to bed most nights by 8pm. So as much as we want to take her on fun trips before the inevitable, she is the happiest at home with her Boykin, Gumbo.
We have our annual beach trip in July and I honestly don't think that she will be able to handle it. She cannot do stairs alone, cannot use the restroom alone, cannot eat alone, and typically cannot be alone at all. I can't help my Dad in the capacity I normally do because i will have two young kids to sunscreen down and chase all over the beach. If she is able to go we will need full-time help, and it would truly be her last trip. Ever. This might sound like I'm being selfish not wanting to deal with it but you have to think about them. She doesn't like the sand, the heat, the water, and when my kids are loud and crazy it sets her off. Would we be bringing her on that trip for her....or for us?

My Dad asked me how I can be so matter of fact about what is going on. He still sees the woman he has been married to for 42 years sometimes. He tells her to dip her quesadilla in sour cream and I signal to him she doesn't need it. We went to an Italian place and he wanted her to get pasta but I made her order friend shrimp (for the 3rd day in a row) because its easier for her to eat. He so badly wants her to wear the Pink Lilly Pulitzer dress her bought her last year but she can't fit in it anymore. This is so incredibly hard for me and my brother but exponentially harder for my Dad. And I feel like it is my job to put on my superhero cape and help him plan, organize, and make this transition as smooth as humanly possible. I have my moments, just ask Max, but as my friend at the ALZ Association Scott told me, "it's good that you have hardened a little to the disease. It is the only way to survive it as a caregiver."  It is brutal..... quite possibly the most heartbreaking thing I have ever experienced but for me to help my Dad take action I need to try to quiet the mother-daughter aspect of it...as much as possible...... and put on my planning hat.

Thank you for reading this. And for praying for us on this journey. I hope this somewhat enlightens people on how devastating Alzheimer's is for all.