I Was a Stranger

I have held off writing about this day. It shocked me it came so quickly and I don't think I really have absorbed how it felt.

Our trip to Asheville for the Fourth of July was interrupted by a stomach bug so I made the trip by myself since I needed to bring Dad a load to take to the beach for us.

That Sunday Dad and I took BB coffee like we always do. She was parked in the main auditorium listening to the Sunday Gospel singers. I don't like visiting her in there because she gets distracted by other people she recognizes and wants to scoot over to them. 

I walked over to her first and she looked up and with a blank look in her eyes said "I love you". She says this to everyone so at first I figured she was being polite and not being loud. Her typical response is to start smiling, then laughing and then crying from happiness when she sees me.

We wheeled her over to the corner and she saw Dad and her eyes lit up. She didn't take her eyes off of him. It began to occur to me that she did not know I was Katharine, her daughter. Her daughter she carried for 9 months (early baby). That she had an emergency C-section with because placental abruption. Who told her all of her crazy teenage secrets. Who she drove to ballet and tap every Saturday morning for 8 years. Who she screamed "Smoke em Smoltz" during my serve at my tennis matches. Who she snuck into summer camp and brought pizza to. Who she went to Lilith Fair with and shared underage margaritas.  

She didn't know me.

She kept looking at Dad and listening to him and taking sips (through a straw) of her Starbucks. I looked at Dad and under my breath and said "She doesn't know". And he said of course she does! BB, this is your daughter, this is Katharine, your little girl.

Nothing. She turned her gaze back to him. 

It was like I wasn't there.

He tried again, hopelessly looking for a reaction. BB, this is Kat, she came to see you, your little girl. You are her Mommy....

She looked back at my face, then my necklace, and went back to looking at him. 

I held it together because I didn't want to upset her. She didn't even look in my direction the rest of our visit.

Once we passed the double doors into the waiting room I broke down into sobs. Dad just held me and cried along with me. 

I was gone to her.

For those of you that will say, "but she knows who you are in her heart." That is nice. It really is. And I know when she dies she will get her memories back and I will be her daughter again. 

But on this day, I was a stranger. And I cannot begin to describe how that felt.

I came home and Ford overheard me talking to Max about it. The next day in the car he started crying and said Mommy, if you get Alzheimer's will you forget me? I don't want you to forget me!

I was speechless and tried to reassure him I wouldn't get ALZ. But that is a lie. I cannot guarantee that. There is no cure, no prevention, only promises of exercise and a healthy diet to try to keep this monster at bay.

Please donate here so that future generations of sons and daughters do not have to be strangers to their parents.

Depression

I can't remember if I have written this post before. I apologize if I have. I could claim early ALZ but I'm hoping (and praying) it's just stress and mommy brain.

Long story short....I have low self esteem. It wasn't helped in school by kids that made fun of my massive forehead, fat knees, or gymnast figure. I was well liked because I was funny and irreverent....but I was not well loved by my peers.

I remember a co-worker (at my gift wrapping High School job) did my make-up and straightened my hair for the Asheville Junior Assembly Winter Party (I was secretary as a Senior). People were shocked I wasn't totally unattractive. An X-boyfriend from High School asked me to dance, my lifetime crush kissed me on the cheek, it was fabulous.

But like I said, people liked me for my humor and personality...not my looks. That does something to a girl. Especially when middle school girls locked me in their attic during a slumber party b/c I wasn't cool. And then called me on a Swatch phone to tell me I wasn't welcome at the popular table anymore. Those years were horrible. And one of the few details my Mom remembered before she lost all her memories. She remembered the names of the girls that called me that day until a few years ago. I have never cried so hard.

The depression has haunted and followed me into adulthood. It was officially diagnosed in College when I thought I would again be the well-liked smart girl. Um....UNC had LOTS of those girls. And unfortunately I based my opinion of myself on what BOYS thought of me. Stupid. (Hindsight is 20/20)

I battled it in College and went on an Outward Bound Course in Mexico. Two weeks of Sea Kayaking in Baja California brings about some deep soul searching. I bottomed out the semester after that and then posted a 4.0 GPA and one of my happiest semesters after that. How? I wrote off all the boys and found good study partners (Tri Delt Anne, you were a savior)

I am now 37 and faced with this horrible adversary again. I cannot regain my former figure no matter how hard I try. I know anti-depressants make you gain weight (WTF) but I have been trying my hardest to lose it. That, coupled with the stresses of motherhood, working, and a dying mother....well you can imagine it is hard to eat kale when I just want to pour cheese on my face and have a Pinot chaser.

I know a lot of you won't understand this world. This place you listen to Fields of Gold by Sting or Midnight by Coldplay and sob. It sounds like a scene with Jared Leto from "My So Called Life" but depression is something that takes hold of you and you can't shake. It is crippling. It handicaps the most able of minds. My best protection is exercise and the damned antidepressants that make me fat.

I write this for others that are going through the same. As Robin Williams said (something along the lines of), the brightest lights sometimes have the darkest lives. I turn myself "on" at parties and social events but truth be told right now I just want to be in bed. I have to credit HSM Core for being a huge mood lifter and to social media for some of the friends I have made recently that check in on me.

Depression is a beast. It overtakes you like Asthma and you are left breathless and helpless against it's powers. It has been my adversary longer than Duke. I am stronger because of it and I know I can defeat it. I just need time. And understanding.

If you know of someone battling a mental health disorder reach out to them today. Tell them you love them. Tell them that even though you cannot fathom what they are going through that you are there for whatever they need. I have been blessed with friends like this and I attribute them to my ability to write about this today.

I also want to thank my parents for being so open minded. I could tell them anything, any feeling, and they would validate it and listen intently. They never cast aside my feelings. They were, and partially still are, the best. I think that is one of the harder aspects of losing one's mother. She could tell me what parenting young children while working is like.

(Yes, I am fine. Don't mean to scare anyone. Just wanted to write an authentic representation of what depression is like. I have a fabulous therapist, fantastic drugs, adorable children, and an incredible village.)

The Funeral Bag*

*Before you judge what I am going to type on this post, please understand this is how I react to stress. In fact, my Aunt Kathleen that died this September had a funeral binder that went over every aspect of dying so that your family members knew exactly what you wanted. (I cannot locate the particular one she had but here is one called "If I croak". Not kidding)

BB is in the end stages of Alzheimer's. She could speak in March, she cannot now. She could eat birthday cake in May, she cannot swallow very well now. These are facts. They absolutely SUCK. But this is the reality we are dealing with. And my approach to a situation like this is to prepare. I write this post mainly for myself but hopefully it will resonate with others in this same position.

I am the person that starts packing for the beach a month out. I get this from my father. (Dad this is ALL your fault). I designate the dining room table to be "Beach Central" and start collecting things we want to bring in there. That same Aunt Kathleen used to bring a Uhaul to the house they rented in Litchfield. She would rearrange the entire house. It's in my blood.

Ever since the phone call I received in December 2014 that Mom had fallen down the stairs and was in a pool of blood, well I have been on alert. I missed that call because I was taking a shower at 11pm, a thing nursing mothers do because their free time is so sparse. I had 8 missed calls from my father. I am now glued to my phone. And I would be lying if I said that I didn't wince every time I see his number.

Preparation gives me peace. It gives me some aspect of control back over this horrible situation. And for a control freak....that's a win. If I have outfits prepared, a rough draft of an obituary, an idea of catering costs, flower ordering...etc...I can sleep better. My therapist says this is insane, and I totally agree, but try telling that to my mind and heart.

I just remember that when I had my Hospital Bag packed I felt ready. Ready for a baby that came three weeks early. I was obviously not ready for everything motherhood would throw at me or the delivery of Ford and Amelie, but having that bag packed by the mudroom door gave me a sense of peace.

I am lucky that I have another mother in my life, Alice Myer, that can help me with all of this. We have grown up at the same Church and she will know all the correct people to contact. (Dad will too but I want him on the deck listening to Bob Marley).

I want to know what I should wear, my kids should wear. Do I get my stepson to travel to Asheville for this? Do little kids wear black? I'll probably need a sitter for the week just to be an extra set of  hands. Do we wear black? Green was Mom's favorite color. Parking at my parents' house will be a b*tch. I already know the bartender (Love you Tracey). I've already read the bereavement policy at work. I'm assuming we will need Jessie May's biscuits and a caterer of some sort. And again...already concerned about parking. Then when it is time to place her in the Barlow tomb in New Orleans (and the garth at All Souls) do we all fly down? Boozy lunch at Galatoire's and a small service at the Cemetery? I have no idea how to do this. All of my grandparents died before I was two so death of immediate family members is very new to me.

I know it is morbid as hell, but this is how I work. I want a binder, I need an arsenal. I'm a doer, a bullet point princess.

If you have any tips for this phase of life (Or a gorgeous black dress) please email me or comment. 

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.