Thursday, July 28, 2016

The Move to Assisted Living Part 2: Goodbye Home

I didn't sleep much the night of May 22nd. I just laid in bed and worried how Mom would react to us taking her to this unknown place. Would she become combative in the car and scream at us? Would she not talk to us the next time she saw us? The irony is that she opened several Alzheimer's facilities in her days of an Administrator for Brian Center so I was scared those memories would still be in her mind and she would know what these places are really for.

We all got up and had breakfast together. BB wandered around downstairs picking up dirt and playing with Gumbo. She typically would go to Daycare around 9 so us getting up and getting ready didn't seem to phase her. We put her in one of her comfy outfits (no buttons, no zippers, all elastic) and packed just one bag so she wouldn't get curious about all her belongings. We packed several other bags but hid those in the trunk of the car.

BB's right arm, which is mostly unused.

We all loaded up in Dad's car and headed to her facility around 9:30. On the way Dad started to explain (using our white lie) that she was going here for rehabilitation on her arm. BB's arm had myclonos which they believe is from the Alzheimer's and she is unable to bend it or use it much at all. Her further told her that her Dr. K wanted her to stay a few nights while they worked on her arm. She smiled and said okay and didn't ask too many other questions. 
We parked and got out of the car and walked her into her "Rehab appointment". The rehab area is very state of the art and her nurse/trainer came right out and introduced himself making lots of comments about the arm and took her back. We all kissed her and off she went. 

Just like that. 

We passed our beloved BB to a facility. A place that will keep her safe, clean, happy and surrounded by people at all times. But a place. Not a home. Not HER home. It was heartbreaking. It felt cruel. It felt devious. I hated it.
Beau, Dad and I then went to her room to add a bedspread, some pictures and stuffed animals. My friends in Charlotte surprised us and sent us the Bear from Orvis. He and several other items were placed around the room to hopefully make her feel at ease.

And then we left.

The three of us had a good day together as a family that day. We played in the attic and her closet laughing at some of her most recent purchases and reminiscing about outfits from happier times. Her Wedding dress, crazy 70's' clothes, presents we had given her. Laughter through tears. I would be grabbing all of her strange recent thrift store purchases but then I would come across an outfit I remembered, like this one from  her 60th surprise birthday. And I would sob. 

We ended up donating about 7 bags of clothes to our church which felt good, almost like donating a piece of who she was to women that needed it now. 

BB loves visits especially when you bring something sweet, like Starbucks. 

Dad and I went back on Tuesday and although she asked repeatedly when she could go home we just kept telling her when she got better. It was hard to see her there. Hard to see her apprehensive and scared. She didn't have a good first night because the night nurse was unaware of our "white lie". It was pretty tortuous for Dad as they called him late to say she was upset but finally fell asleep. He just wanted to go get her. (I have since updated her room with cheat sheets of what BB needs to know...and play jewelry in a bucket.)

In the days since it has been harder. Harder on us. You picture her there alone, walking the halls by herself (as Dad found her one day), laying in bed scared that she is without her "Man". You wonder what she wonders. 

And you miss her presence. I miss my Mom. I went home and she wasn't there. Her vanity was empty. Her side of the bed was made. Her flowers needed dead-heading. BB is gone from our everyday life. We can visit her as much as we want but she is not home. She isn't a text message or phone call away.

I wonder what type of grandmother she would have been. Would she go shopping with me for Amelie? Would she help me plan her 2nd birthday? Would she come to Charlotte and go back to school shopping for Ford? You see those quotes about calling your mother 20 times a day after having kids? I can't do that. 

She is adjusting well and besides an ankle injury and an attack by another resident (BB was okay, these things happen and the facility is handling everything beautifully) she is where she needs to be. She isn't where we want her, but she is showered, loved, attended to and safe. 

Please pray for the rest of us. Alzheimer's disease at this stage affects the caregivers and families more than the patient. I've been angry and sad and tired and somewhat of a hermit this summer. I don't know what to do with these feelings. It has taken my mother and grief has taken my funny father. He and I and Beau are doing our best to come to terms with our new reality but it just takes time. 

And all of this is why I continue to raise money for the Alzheimer's Association. A disease has stolen my mother. It has been doing it slowly for 7 years. 
 You can donate here.


Wednesday, June 29, 2016

The Move to Assisted Living Part 1: BB's Send Off

The weeks leading up to (and after) moving Mom have been some of the most emotional times in my life. After we got the call that there was a spot for Mom we went into action mode and started making arrangements for BB to move to her new home. I probably spent 10 hours on the phone with my Dad and brother that week going over checklists, crying, second guessing ourselves, and trying to laugh at what we would pack.

My brother flew in on Friday and I arrived Saturday Morning just as she was being dropped off by her Jazzercise instructor (and dear dear friend) Susan. They made Mom the Jazzgirl of the month and gave her gifts everyday and took her to brunch on Saturday. Susan and those women deserve their own post one day as they are truly angels sent to watch over our BB.

It sounds morbid and odd but I thought it would be a good idea to take BB around Asheville to her favorite spots so she could see some of her friends and be out on the town "one last time".  Saturday we started out with lunch at the Smoky Park Supper Club and she got to watch the geese and ducks on the river. 
This is a funky cool spot down on the water off Riverside Drive set in a building made out of shipping containers. If you can't stop to eat at least stop by for a drink and sit outside!

Next we headed over to the River Arts District Art Walk to visit two of her favorite people, Molly Courcelle and Bee Sieburg. Bee and Molly used to own Gardener's Cottage where Mom worked for years. They are now both full-time amazingly talented artists in the Wedge building! 
"Lavender in France" by Bee

"See What is Promised" by Molly

Molly and Bee both have hearts of pure gold and are so wonderful every time we see them. I actually bought my first Bee Sieburg painting on this trip and love that I will remember the day, and my companions, when it was purchased.

After that we went to Gardener's Cottage to visit Libby Endry. Libby is like family to us and is seriously the sweetest (and prettiest) shop owner. If you are ever in Asheville please stop by her shop. It is a beautiful cottage in Biltmore Village filled with the most beautiful plants, flowers and gifts. 
She carries Juliska, Bee's paintings, Nest Candles and anything for your garden or home. BB adored working here years ago and you can tell when you walk in how perfect it was for her.

That night for dinner our friends from New Orleans were in town and invited us over for dinner. 
This is where Max and I had our wedding reception and a meal out there with these friends is always always a wonderful time. They say friends are the family you can choose and that couldn't be more true about this crowd. They love BB like one of their own and it was just a special evening.

Sunday morning we cruised through the Biltmore House grounds on our way to lunch. 

If you aren't visiting the house you can drive right on by wind through the estate via car. 
I would have loved to stop and take pictures in the Garden but time is always ticking...unfortunately.

We then headed to our faux "Mother's Day Brunch" at Fig in Biltmore Village. Fig is one of my absolute favorite restaurants in Asheville. I will say that while Brunch is outstanding...make sure you go for lunch or dinner so you can order the Farfelle Bolognese. Just trust me on this one.
We had a table of 10 and all toasted to Moms (AKA BB) and just had a glorious celebration. This party then continued on to my parents' house with more wine on the deck and going through the thousands of old pictures downstairs. It truly was the most perfect afternoon. Best friends, Rose, Motown, old pictures, memories, story telling and Mom. We ended up ordering Pizza because nobody wanted to leave. 

I couldn't have imagined a more perfect last weekend for BB;  at home, surrounded by friends and doing the things she loves the most. 

Tuesday, June 7, 2016

Where is My Fucking Jambalaya*

(*Disclaimer: This post is partially meant to be comedic, but also to give you insight into how grief with Alzheimer's works. I promise I'm not "milking" this situation. As Nancy Reagan phrased it, this is the "long goodbye".)

I have two posts typed up about moving Mom into an Assisted Living Facility. Part 1 was the weekend before, a somewhat "last hurrah" tour of all of her favorite spots in Asheville culminating with a boozy brunch at Fig and an afternoon of rosé and going through old pictures on the best deck in the South.

Part 2 is the gut wrenching Monday and days following after we moved her.

But today's topic is a strange one. It feels selfish and needy and bratty. 

We have lost BB. We have been losing her for years. She has been stolen and slowly whittled down by Alzheimer's. And while she is still here on this Earth she is gone from our daily lives. She isn't by my dad's side when he wakes up in the morning. She isn't downstairs looking and calling for her beloved Boykin, Gumbo. She isn't at Jazzercise telling all the women there that they are beautiful and how much she loves them. And most recently, she wasn't with my Dad when he came to visit this past weekend. I feel very lucky to have parents that are still married at this point in life so for her to not be with my Dad is surreal. There was no trip to Polished for pedicures. No opportunities for pictures with the kids. No doing her makeup and drying her hair. She was missing and missed.

We sat down at Roosters on Friday for lunch and my father and I looked at each other and just started crying. BB would have been there and wanted a bloody just like dad and would have ordered the Mushroom Pizza and clumsily fed it to herself, possibly putting some of the onion rings in her chardonnay and maybe drinking ketchup. But she would have been there. 

We feel lost. We miss her.

We didn't get to have a big service to celebrate this portion of her life coming to an end. We didn't get a steady flow of visitors and flowers and meals. We didn't get a second line to "A Closer Walk With Thee" in Lakelawn Cemetery. What we did get was a harrowing Monday morning with two LL Bean bags full of her favorite clothes, some stuffed animals and some framed pictures. And moved her into what will be the last room she ever lives in. 

And what I really want to know is WHERE IS MY FUCKING JAMBALAYA? Where is my closure? Where is my big sobbing breakdown and then my chance to move on with my life?? The big celebration of how BB was and how we want to remember her? How am I supposed to move on while she is in limbo? In this place that I wouldn't want to be. I know she is well taken care of, hell she has already had more showers there than we could have convinced her to take. But it isn't where I imagined my beautiful mother to spend her last years. Alzheimer's is the cruelest disease I can imagine. I don't want her to become one of the patients that stares into the air. My gorgeous and loving mother reduced to a shell of her former self. 

I'm mourning my mother. I  know she is still with us, please understand that I really do get that mentally. It is just going to take my heart some time to fully grasp this life. Most people visit grandparents in nursing homes. I will now be visiting my mother. She should be in her garden. 

PS-Please don't send food. Seriously. I've gained the 15 pounds my dad has lost. Stress and grief work differently on women and men. Send some uppers and Leese Fitch. And maybe Ouiser Boudreaux so I can take a whack at her. 

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.