Tuesday, March 21, 2017

Who?


When Mom was first diagnosed with Alzheimer's and we started telling friends the most common question we received was, "Does she still know who you are?". And if we answered yes they would respond, oh great! 

Well yes, she knows who we are but she also wears depends and drinks hand sanitizer and washes her hands in the toilet if you aren't looking but.....great?! 

I don't mean to sound like an asshole. Anyone that takes the time to ask how we were doing is a Saint. And now that we are in the end stages I feel like that question is one I now ask myself before every visit with Mom.

The Alzheimer's Association is putting on the very first Memory Gala this weekend in Charlotte. They emailed me a few months back and asked if I could do a video interview with Michelle Boudin talking about my experience as a long distance caregiver and as a daughter of an Alzheimer's patient. This video will be aired at the Gala. I of course said yes. About a week after we had our video interview Michelle reached out to me and asked if there was any way that I was going to Asheville anytime soon and if they could film me with Mom. And I of course said yes. I literally would do anything to reach more people and get our story to a broader audience.

I just happened to be going up to Asheville for a girls weekend so the timing worked out perfectly. I stopped by to see Mom on Friday morning and she was ecstatic to see me. She smiles and cries and says I love you. She says that the most. She also tried to ask me where I live and I explained in Charlotte. She asked about 8 more times within the 45 minutes I was there.

On Sunday morning my sweet friend Anna spruced up my hair (I cannot figure out beach waves for the life of me) and my friend Adelaide poured me some champagne (for nerves...and for my hangover) and off to the facility I went.

The facility knew we were doing something special so they had parked Mom's wheelchair in the main hallway, her hair freshly washed and put her only dress that will fit on her. I wheeled her into the lobby since we have to be very careful of other resident's privacy.


Dan the cameraman is probably the nicest and easiest person on the planet to work with. I parked Mom in front of a window with good natural light and just spent time talking to her, brushing her hair, holding her hand. Conversation is difficult but I can typically figure out what she is trying to ask me. I knew she was trying to ask where my Dad was and I said "Beano came yesterday, and he will be here Monday with coffee". 

Who?

Beano. nothing.
Dad.    nothing
Your Man. nothing

For the past two years she has called my Dad "my man". I am "my girl" and my brother is "my boy". 

Your Man Mommy, Beano, your husband. nothing.

I'm  not sure if Dan got this on audio, I don't think I had been mic'd up yet. My heart broke. I pulled out my iPhone (thank you Steve Jobs) and found pictures of Mom and Dad. And she looked at me like the light had been flipped back on and said Oh YES, my man.

This happened twice more. 

I left my time with my Mom that day sobbing. I called Max and just cried for five minutes. My Mom was declining rapidly. I just cried and cried. The girls back at the house had texted that they had headed down the mountain and wanted me to meet them for a few last shopping spots. I cried more. Having those girls in Asheville and eating, drinking, laughing with them was the best medicine in the world.. And then they were leaving and my goodness I didn't want them to go. I wanted to have lunch at Corner Kitchen and then go back to the house and light another fire and sit around and talk. I wanted to hold them hostage. But daylight savings robbed us of our time that day and we all had to return to our individual worlds of laundry, bills, life, kids and work.

I can't thank you girls enough for being with me that morning....and throughout this entire journey. And a huge thank you to Michelle and Dan for capturing these fleeting moments with my Mother.


Tuesday, February 7, 2017

7 Days Until Valentine's Day

Here is my official Southern Bourbon Mountains Valentine's Wishlist


Listen, I love jewelry as much as the next girl but you can't drink it and it doesn't coarse through your veins and send you to happy town quite like a nice red does. Massages are great but as soon as you get home and smacked in the face with a hot wheel the relaxation is over. Flowers are WAY overpriced (but not on any other day of the year) and I don't think a BMW X5 is in the budget this year. Wine is the way to a woman's heart. (Or at least an almost 37 year old working mom of two crazies heart)

The Leese Fitch Cab is my go-to Monday-Friday. For $9.99 it's perfect to take the edge off the witching hour and to settle in watching The Man in the High Castle. (Don't know what that show is? WATCH IT!!)

Waccamaw and Willowlake are from the Banshee family and at $14.99 and $24.99 are a nice bottle to bring to a friend's house so they think you are in the upper middle class instead of living with wall to wall carpet. 

I wrote a LONG blog post way back in the day about Chateauneuf du Pape. We visited there when we went to France in 2008 and Vieux Telegraphe was a favorite. You can read that post here.

Most of these wines can be purchased from my dear friends at the WineStore in Charlotte. They have several locations but we typically buy from Matt at Blakeney or Matt at Southpark. They ship too!

So Max, here you go. I'd like a case so you can mix in 8 Leese Fitch with a Telegraphe, a Willowlake and 2 Waccamaws. 

Have any new favorite reds I should try?


Friday, February 3, 2017

Visitor Parking

I apologize for the lack of posts and updates about Mom.

The holidays were tough. Tougher than I expected. 
I sat in Mom's spot on Christmas Day. We have all of our place cards that she wrote in her beautiful handwriting.

This Christmas we had EVERYONE. Those are the absolute best. We had my stepson, my brother and his family and every Myer/DeBlasio family member. I felt like were were insulated with family and friends, somewhat protecting us from what a holiday without BB would be like.

On Christmas morning after the presents, after the craziness, we all loaded up into two cars and headed to Mom's facility. We stopped for her favorite Starbucks drink and got her a special decadent treat. 

We pulled up side by side in the Visitor Parking.
We filed into the building and took over one of the private dining rooms and found BB hanging out behind the nurse's station in her "lounge chair with wheels". She is restrained in a chair due to her broken foot and her attempts to try to walk around.*
We smiled, looked at old pictures, told stories, opened presents, hugged her. She doesn't know our names, she knows we love her and that she loves us dearly. I don't think she recognized anyone in the pictures, not even herself.
Mom far right in the adorable bathing suit.

That was our Christmas with BB. That is the reality of a holiday with a 68 year old Mom who has advanced Alzheimer's. When we left I could see the anxiety and fear in her eyes. When we used to leave the Alzheimer's Wing she would walk us to the door and kiss us goodbye. Now she is stuck in an area with none of her buddies. It makes leaving so incredibly hard.

*The latest on BB is that they do not think she will learn to walk again. In the short months she was restrained in a chair she has forgotten she knows how to walk. They are concerned because she doesn't even attempt to get up now. Not out of bed, not out of a chair, she is sedentary. If they do get her up it is a very broken shuffle and she has to be assisted. There is no motivation or understanding that she could walk again.

She has also been having increasing anger in her sundowning episodes. She is stuck in this chair and sometimes just hanging out in the hallway and yells at people to come talk to her. "Hey you!" "Get over here". "Come back". I don't blame her and can completely understand the frustration. They have tripled her anti-anxiety/mood elevator medications hoping to combat this behavior. A bright spot is that a dear family friend is now working at her facility and can sneak me pictures from time to time. Here is one I received last weekend.

When you go to the facility you see the hallway of the very old. The ones parked in their chairs outside their rooms, staring into another dimension. I see my Mom headed for this phase and it is heartbreaking. I miss her. I find myself struggling to find joy in the holidays without her. I am thankful I have children that can keep the magic alive. She decorated for everything, Valentine's, Mardi Gras, Easter, St. Patty's Day. I'm trying to celebrate the way she would, because I know my kids would love it just as I did.

Ford signing her Cast before Christmas

She will remain in the Skilled Nursing unit if she cannot walk again. The Alzheimer's Unit (where all her friends are) will not take someone in a wheelchair.

I pray she learns to walk again.

Thursday, December 8, 2016

Seizures, Falls, and the Move to Skilled Nursing - An Update on BB

This past week makes us realize how lucky we have been for the past six months. 

BB has started having seizures and her falls have increased. She fell Friday and then again this Monday. Monday she rolled her ankle and then put all her weight on it and she ended up with a broken ankle.

Going to the hospital with Alzheimer's is difficult. She cannot alert people when she needs to use the restroom. She has no idea why she is there. Dad had to remind her every few minutes why she was there, where she was, etc. The surgery was successful and a plate and screw were put in for the time being.

With her broken ankle she will need to be moved to Skilled Nursing. The issue is there are no skilled nursing beds available. There is a bed in short-term skilled nursing which is available for 100 days. 

Headed to Skilled Nursing

The big BIG issue is we have to now give up her bed in the Alzheimer's Unit. Her home for the past six months. A place she is comfortable and has friends and routines.

100 days seems like a generous time for somebody to rehab from an injury but Mom cannot use a walker, she has lost most of her ability in he right arm. She shakes too badly and cannot grip anything. And forget about teaching her how to use a wheelchair.

Dad just called me saying they found her wandering the halls. On her broken ankle. This unit is not familiar to her and she is in a big room all alone. 

They want to put her in restraints. That news is a gut punch.

How can you help? I never know how to answer this question. All I can ask is that you pray that BB finds peace and comfort in her new spot. Pray she can rehab and walk again. Pray that there is a bed available in the Alzheimer's Unit when she CAN walk again. Pray for Dad. Visit her, send cards, stuffed animals, etc. 

I honestly didn't realize it could get worse.

Please Lord, Don't let my beautiful vibrant sweet Mother be one of those comatose people in wheelchairs in the hallway. 

I hate this disease.