Tuesday, May 9, 2017

Sixty-Ninth Birthday: An Update on Mom.

I haven't blogged in forever. As I said, Christmas was tough. My birthday was tough. Easter was tough. And now, like several of my dear friends dealing with the same, comes the double whammy of Mom's birthday and Mother's Day.

I have always tried to go home for either one of these events. Mom's birthday always coincided with Christ School Alumni Weekend which is by far one of my favorite weekends in Asheville. Or it used to be. There is just such a missing piece for me when I go home now. I know that will heal over time.

I set off early on Wednesday with sparkler candles, plates, napkins, presents, a scarf to dress her up, a lighter, the most gorgeous cake from a Rockbrook friend, pictures and a birthday hat. 

We took advantage of this day and set up an appointment with the staff at Mom's facility. At this point there isn't much to discuss. They have increased her Divalproex from 150mg 3x a day to 500mg 3x a day. It is an anti-seizure medication but it is also being used to calm her down. Being stuck in a wheelchair and being almost non-verbal is (as one can imagine) insanely frustrating and she yells out in the hallways just wanting someone to come talk to her. She does this even when we are there. If she sees someone she recognizes she is determined to make eye contact or get their attention. You can read a great article discussing this medication therapy here. She is on prn Adavan for her outbursts, Namenda (which I believe is useless) and citalproam to keep her moods happy. 

She is on a mechanical soft diet and while we visited I noticed she would wince when she swallowed food and refused her Coke Zero which she usually inhales. I just got off the phone with Dad and they are going to get a speech/swallow therapist involved as the nurses have noticed the same. Swallowing issues usually happen in the late/end stages of the disease.

End stages.

Dad and I walked over to another hallway and set up the family dining room for her celebration. We didn't see her yet but could hear her in the hallway upset and angry. She was kicking another woman in a wheelchair because she felt her space was invaded. She was happy to see us. Said she was "_____ to cry." (Going to cry...but she couldn't say that).  There were less of her famous "I love you's" and more frustrated partial words. We facetimed my brother which we probably won't do again. It confused her and she would look past the phone and was confused as to why Dad and I were carrying on a conversation with someone not there. I am thankful that he and her siblings are all visiting for Mother's Day.
We sang and ate cake and she did not eat much of hers. Normally she devours  her food. Our dear friend Alice came and brought her goodies. When we left Mom got agitated again because someone she knew walked by. It was her group's lunchtime and I think she was frustrated she wasn't in there.

It was by far the hardest visit yet. I saw her 6 weeks ago and she was much more lively, happy. I know that we might have been there on an "off" day. But there are so many off days now.

We ended the day at my parents' home having an intimate round table conversation with Dr. Dean Hartley who is the Director of Science Initiatives at the Alzheimer's Association. It was a fascinating conversation about how to approach Alzheimer's disease. A Vaccine? A three pronged attack like HIV drugs? Trials? Amyloid PET Scans? There was another ALZ daughter there, also Katherine, and she and I were like sign us up. We will sign up for any drug trial we can.

I dread this Sunday. I am thankful that I am a mother myself and can hold my two babies tight all day. My therapist suggested I do something to honor my mother. I believe this blog is a way to honor her. To not sugarcoat this disease. To help other people in my position. 
And I will arrange flowers. Just as she did. Just as I did for the ALZ gathering. Flowers and family and friends and her beloved dogs. BB's favorite things.

BB at 69 up top, below 65, 66, 67, 68. 

Alzheimer's is NOT normal aging. 

Tuesday, March 21, 2017


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". 


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.