Tuesday, March 6, 2018

An Update on BB-March 5th, 2018

Hundreds of minutes on the phone and countless texts and emails and we came to the decision. Prayer and faith led us here, along with what we knew Mom would want. She would not want to be in this state. She would not want to be force fed baby food. She let us know this when she filled out her advance directive.

Yet is is still so hard to say out loud. To tell your hospice team, we want you to stop feeding her.

But the bottom line, and the thought that keeps me from a guilt avalanche, is that we need to do what BB wanted. BB would want you to stop feeding her. That is why her body cannot swallow, why her body is slowly turning off the computers, dimming the lights, closing the door.

And she did not want this.

As of yesterday Mom is no longer receiving food or water. They will keep her  mouth moist (maybe with Dewars?) and keep her completely comfortable. Being the court jester I have been for the past 7 years I told my Dad, "I'm the one that brought the morphine Mom!" Her doctors are all in agreement, they have seen this before and this is not agony for them, they know where she needs to be. And it is not on this Earth riddled with this horrible disease.

To Ford and Amelie and Max, please be the one to rush to this decision. It has been agony for us. But I'm telling you now (and updating my paperwork at Northwestern Mutual) that you SHALL withhold life prolonging measures if I have a terminal diagnosis. And especially if I am in depends, in a hospital bed, and away from my loved ones.

Alzheimer's is the cruelest way to go. And it is our duty to let her leave with as much dignity and comfort as humanly possible.

We don't know the timing of this. I'm a basketcase because I'm worried about the Alzheimer's Gala this weekend (we still have spots at our table!) and how I don't want to let them down. Or let my friends down that have bought tickets.Or let Ford down on his slime themed birthday party wishes. But truth be told I want to curl up in my childhood room and sleep while we wait.

But....I'm a Mom, and in this sandwich generation..... so I need to forge ahead with daily life.

I want to thank you all for continuing to read these updates. They are hard to write at this phase but I don't want to let any of my ALZ followers down. There is no manual for this and I want to be as honest as possible about how this all unfolds. If you think our decision is wrong, and that we should let her lay motionless in a bed all day, please keep those thoughts to yourself; especially if you have never witnessed a visit.

All of my love,

**Family I sent an email yesterday morning regarding this. If for some reason you are not getting those updates and reading here please send me your email.

Tuesday, February 20, 2018

What I Want to Remember

One of the worst things (and there are a LOT of them) with Alzheimer's is that your most recent memories of your loved ones aren't the ones you want to keep. I'm talking about the bathroom trips, the screaming, the irrational behavior. And of course you know that it's not their fault, and not them, but that is what is freshest in your mind. You have been losing this person for so long you don't have voicemails, texts, even emails from when they were themselves. 

A good friend told me that once they die, that all the good memories come flooding back. Both for them and for you. I certainly hope this is true. The other night I was up working late and poured a glass of wine (bottle) and forced myself to think about each phase of my life and to try to remember how Mom was back then.

Birthday Parties-My cakes were always over the top. Not the crazy confection productions of today, but Doberge from Gambino's, Pink cursive writing and sugar flowers from Ingles, where ever they were from they were always gorgeous. My parties had themes (not like today's Pinterest, but in a totally 80's way) and were always a big production. Scavenger hunts (for either gold coins because St.Patty's Day or for eggs b/c early Easter). Doilies for snacks, the silver would be polished, flower arrangements on all tables. She always made birthdays a big deal. Even as a teenager. She took all of my girlfriends and I to Joe's Crab Shack (this was Asheville in the 90's, and this place was LIT) and then to a Matchbox 20 concert. My freshman year of college we went down to Palm Beach and bought so many goodies from C.Orrico and Loehmann's. (Remember that place?) Sunbathed and ate too much. I wasn't spoiled rotten but she knew how to celebrate people.

Ballet and Tap-She would take me to Fletcher School of Dance every Saturday morning and help me get my hair up and always packed this parachute material blue bag with a white bear on it with all the perfect goodies. She would sit up in the waiting room and read while I took dance, sometimes watching through the window. Every Saturday for YEARS this was our routine. (Until our Nancy Ball visits at the Hendersonville Farmer's Market) And when I no longer enjoyed dance I tried Cheerleading and the coach was so mean she yanked me right out of there. She was my guardian and my protector and if she didn't like something she showed her teeth. I remember (very vaguely) swimming lessons when they just threw you in the deep end. I remember staring at the black line on the side of the pool (where they make the T) and she grabbed my hand and got me out of the water. I still to this day cannot freestyle swim and have a legitimate fear of the black lines. 

Sick-When I was eight years old I got so sick and nobody could figure it out. I was rushed to Urgent Care and they tried to make some horrible accusations and she and my Dad let them have it. They were the best health advocates and because of them my Dad's buddy finally took me for an X-ray and realized I had a kidney stone that had become lodged and my kidneys were shutting down. I was in the hospital for three weeks and she spent every day there only leaving to take walks down Biltmore Avenue. In College I got the flu and it was so awful, she came to Chapel Hill and put me in a hotel room (she worked for a chain of assisted living centers and they had one there) and nursed me back to health with movies and the only type of care a mother can provide.

Hostess-Most of you know that Dad was the Chef, but she was the behind the scenes beautifier. While he made the most delicious food, she made the most beautiful flower arrangements, the most inviting house a home, and greeted any guest as family. My friend Sallie from High School has the best comment on how coming over to my parents' house was and I'm trying to track it down so I can update it here.

Mom-Above everything else she was my Mom. She wasn't June Cleaver. She didn't bake and wasn't head of the PTA. She brought Pizza and diet coke as Tennis Mom when clearly bananas and Gatorade were more needed, but that was her. Irreverent and exquisite. The day I told her I had had sex she wasn't mad, she was excited for me. And if I felt guilty over it she said sex is like hats, you put them up in the closet and forget about them. Hysterical...only BB. Her responses allowed us to have an open conversation about anything in life. Oh the things I wish I could talk to her about now. 
She came to visit me in College and would always take me to the store to load up on food, and then the liquor store to stock my bar. She knocked on doors of my guy friends and offered to buy them beer and pizza if they would help us with furniture. (Remember this Phil and Pat?)

Proud-The day I got into Carolina she must have bought the entire section of UNC gear at Dick's along with 30 balloons and decorated my room while I was at a Rotary Meeting. They called me (on my car phone) to say I needed to come home right after my meeting b/c my room was a mess and they had company arriving. She loved surprises like that. 
She would scream Smoke Em Smoltz at my tennis matches. I wasn't #1 but she made me feel like I was. Not in a participation trophy kind of way, but in a way that I knew she believed in me.

That is what I want to remember. And just typing it all out brings back so many wonderful memories. She was a card sender, a note writer, a care package sneaker, a flower giver, a flower arranger. She did the little things, the things that mattered. As I got older she would offer me the shirt off her back if I complimented her on it, if I liked her earrings?? She would send me a matching pair. She would do anything for anybody. She was an includer, a lover, the ultimate giver. I never went to Disney as a kid, but I didn't need it. I had my own magical fairytale in my mother.

Friday, February 9, 2018

Tough Questions-An Update on BB February 9

I have debated posting about this but I want to stay true to my mission of being transparent about this disease and the process around it.

Mom is being spoonfed baby food, as she has since her swallowing issues began last Fall. Dad sent me a picture on Sunday that really just hurt my heart. She was almost asleep but still being fed her entire meal while wearing an adult bib. (see below)
This is nobody's fault. This is standard protocol. It is a horrific gray area in the course of this disease. Should she be being fed like this? Should she even be being fed? Does she feel hunger? Thirst? We know that if she stops eating she will die.

So making decisions about this directly affects when she will die. 

These decisions are hard. And guilt ridden. I have lost sleep. I have had dreams about these decisions. 

But we need to remember the most important thing. What would and what did she want?

It wasn't until yesterday that we looked up her advance healthcare directive (something we all need to have) and she specifically stated that if she has advanced dementia her directive is that her healthcare agent may withhold life prolonging measures/supplements.

And then you have to put yourself in her shoes. My parents used to joke that they wanted the pillow. If they were to be put in a home, just give them the pillow instead. It's a horrible and cruel saying but Mom worked in long term care for years and she saw. She knew. 

So at this point by feeding her what are we prolonging? She no longer recognizes us. She is in pain sometimes from her osteoarthritis so she has to be on pain medication. Smiles and "I love yous" are a rare occasion. I am so damn glad my kids got a smile from her last visit. She would not want to be like this. 

Hospice has been incredible. I reached out via email to ask them what they thought and they have this way of wrapping you in comfort with their words. They know these feelings, they have seen families beat them self up over even uttering these words. But they know in their hearts what is best for the patient.

I am thankful that my brother and father and I are so close throughout this process. We have a sense of humor that is helping us lighten the load. You should see how horrifically ugly urns are these days. If you can't laugh at a tacky airbrushed urn and how she would curse us for the rest of our lives if we picked one of those out........ then you aren't going to make it through this.

I am also thankful her sisters and brothers all agree that she wouldn't want to be like this. She is their baby sister and it hurts them just as much to see her incapacitated and frail.

I love you Beau and Dad. We have been planning quite the celebration. And there will be Cheetos and Scotch for all.

If anyone riding in Iris can send me some Iris beads I would be forever grateful. She rode with her sister-in-law, Jennifer Boylan, and said it was one of the most fun things she ever did. (It's on my bucket list)

All Hail BB, Queen of Aston Park.

Tuesday, January 16, 2018

Are You in The Right Room? BB Update January 15th

"Opera House" by Jenny Andrews Anderson
 (of MFAMB fame)

I haven't posted an update because there isn't much to post. I am headed up to Asheville this weekend to see BB and for a baby shower. I am trying to shake the guilt that I am not up there more often but I need to remember these two little crazy children are my main priority. And my job, and my life here.

We received an email from one of Mom's amazing Jazzercise buddies. These women visit her regularly and helped us so much in those beginning stages. They brought Mom home from class, took her out to dinner, they even hosted a class for all the patients when Mom was in the Alzheimer's wing.

They stated that she was sitting up in bed watching TV (something she has never done since moving to Aston) and told them she loved them. I jokingly asked Dad, where they in the right room? Laughter.......you have to try to keep a sense of humor throughout all of this. I love that the TV was on. She doesn't look at it but I would imagine it would be comforting to hear the familiar Hoda in the mornings. I get lonely working from home and sometimes put on Friends episodes as background noise in the afternoon.

I'm guessing this recent stability is from her either being leveled out on her meds or hanging out on the "up" part of this seesaw phase. I love that those incredible Jazzercise ladies got to see her looking so good. I'm hoping for a smile this weekend.

We received an email from our hospice team over the weekend and she is down 8 more pounds, after losing 17 in three weeks. She is eating around 25% of her pureed breakfast and lunch with a little liquid.

Dad and Beau and I are doing okay. We all spent my father's birthday together and that was so needed. I'll post a recap tomorrow. I honestly didn't want to go on this trip for fear Mom would die while we were gone, but hospice urged us to go. It was so good being together and getting away.

Now we just wait. I am still trying to trust in God's timing. I am trying to move forward with life here in Charlotte. I still find it so difficult with my Mother's death looming on the horizon. Waiting for your Mom to die while trying to maintain some normalcy for young children (or your marriage) (or your job) is not for the weak.

I want to thank you all for commenting on my posts, instagrams, sending me texts, DM's, tweets, facebook messages and just following our story. Lots of people eyeroll social media but since I sit in this home office M-F with not much human interaction it really really does help. I love you all so much.