Events

Dad told my twenty-year old sister, and she told me, that a nurse is coming to the house to interview the family and determine whether Dad's medicaid application is fraudulent or not. Apparently, Dad said to Sister, "I told Mom she's getting worse, and a nurse is coming. She's sad about it."

Dad wins the prize for insensitive announcement of the year. As Sister told me about this conversation, I got angrier and angrier. He doesn't realize (or doesn't care) that she and I have to compensate for his rudeness and be extra kind and patient with Mom. It affects Brother #3, too, but Mom doesn't rely on him in quite the same way. He has the excuse of being a teenage boy, and escapes the house more easily.

Apparently, Mom left the hose running (overnight?) and Dad discovered it in the yard. He sighed really big, turned the hose off, and went into the house to talk to Mom about it. Mom came outside a little later to dump garbage. She was deflated, and said to Sister, "I got in trouble." She came to her daughter for refuge, or at least to vent. Sister had to be the compassionate parent. Apparently, Dad thinks that negative consequences will teach Mom. He's still in parenting mode.

Sister feels like Dad is asking her to betray Mom, and all the covering up she's been doing to make Mom comfortable is about to be ripped away. I've emailed Dad and asked for an explanation of this meeting with a nurse, and what the expectations are for the family's participation.

I haven't seen Dad grieve, or pamper Mom out of unbridled love, or even call on his kids for help. He's been very stoic about the whole thing for the last 2 and a half years, but cracks are beginning to show up (and have been evident for a while now) in his mask of self-sufficiency.

Stuff I wish I could say to Dad:

1) My heart BREAKS for you. This has to be hardest for you, losing your best friend, your teammate, your right arm. At the same time you have to increase your functioning and compassion and critical thinking in order to take care of the person you've lost.

2) STOP ACTING TOUGH. Your life is dissolving before your very eyes. You're not fooling anyone with this tough-guy routine. We are all in excruciating pain, but you are unapproachable because you're concentrating so hard on not being incompetant. We are ALL incompetant in this scenario. Let's fling our arms around each other and help each other stand and gasp for breath together and draw strength from each other. To me, that option makes more sense than trying to stand alone and be independantly strong.

3) No more family meetings. Lets do something fun together, lets re-forge an umbillical cord of compassion between us. Relationships with your sons are already shit. Instead of making things worse, lets try and use this common pain to bring us together. We miss Mom too. Don't withhold yourself now, when we need more parental love than ever (even if it's imperfect parenting). We all want things to go back to the way they were. We're all stuck in a rut as a result, which makes it that much worse.

Snapshots

Mom washing Dad’s glasses. He never noticed when they were dirty. She'd ask for them, clean them, and return them.

The first joke I remember sharing with Mom (10 or 12 years old?), instead of a teaching moment: drinking loudly and seeing her staring at me with wide eyes and crazy eyebrows, realizing how loud I was being. She said, “I feel like I’m sitting next to a camel who’s been in the dessert too long.” I laughed for an hour.

Before every family photo, Mom would brush my bangs all to one side with her fingers, palm up, pinky first, no matter how long I had spent centering and distributing them.

Her singing to me at bedtime: “There’s just something about that name.”

GNF day camp when I was in middle school, helping to teach 5 Day club curriculum. I introduced her as “My friend, Mom.” Dad commented on it later, because she told him how happy it made her to be introduced as my friend. I tried to clarify for her later, and she told me it was okay if I didn’t mean it. She was embarrassed Dad mentioned it. I wish I had reaffirmed it instead of “clarifying” my compliment as just trying to be witty in front of my friends.

The only time I ever heard my parents fight was behind closed doors. Mom was crying. Their voices were raised, but only enough to be heard through the bedroom door. I never knew what it was about.

I asked Mom if she and Dad were both virgins when they got married. Mom said yes, “but just barely.” She giggled and started to tell me something Dad had told her about himself when they were dating, but stopped herself. She said, “I’ll tell you when you’re older” (I was probably 14 or 15). I’ve been curious ever since.

Mom would tell me when my slip was showing under my skirt, or when my shirt was really wrinkled. As Mom, that was her job, and I appreciated her pointing out something about my appearance that I had missed, but it always made me mad. I’d feel picked on and singled out for ridicule. The hypersensitivity lives on.

When SV married his wife, Mom and Dad and I attending the wedding. A few months later, when they announced they were pregnant, I said sarcastically, “Boy, they didn’t waste any time.” Mom’s way of counteracting my criticism was simply, “the Lord bless them” as if a reward was in order for being fruitful and multiplying.

When the real estate agent showed us the house Mom and Dad bought in 1986, Ian and I locked ourselves in the shed in the back. We screamed out the windows because we were so scared, and the real estate agent thought we were being stung by bees. We were just afraid of being left behind. We played in the house after that, with a marble we found on the floor (were we that desperate to be entertained?). A houseful of fleas, left behind from the previous owners pets, were ravenous and soon covered Ian and I. The small slab of concrete outside the sliding glass door was crooked, and that’s where we sat as Mom and Dad picked fleas off of us. I wonder what the other houses were like that Mom and Dad considered. I’m amazed we moved in with an introduction like that. The big shed in the back yard was filled with junk (old toys, mattress, a syringe). We weren’t allowed to help Dad clean it out. Eventually, that’s where our goats and rabbits lived.

Before Alex was born: the back bedroom of the “new house” was the nursery and library. The crib shared space with bookshelves. Eventually, the bookshelves lined the hallways, but the thought was nice.

A few confessions

1. I resent any women over 50 who dress stylishly, balance their own checkbook, or manage their own schedules. They are less deserving than Mom in the equation of my snap judgment.
2. It's embarrassing to be with Mom in public. You can’t tell by looking that her brain is working against her, but her actions are increasingly child-like.
3. I wish Dad would cut her some slack. He gets impatient really quick and seems to resent her dependence. I get that; I feel it too, but I don’t think he realizes how harsh he comes across, nor how timid Mom is around him compared to being with me or Olivia. I think she’s constantly aware of not living up to his expectations.
4. I'm terrified of "catching" Alzheimer's. Anytime I forget something, I feel a shiver of panic.
5. I miss her living vicariously through me. She used to ask about my life and was able to track with events as I anticipated them, experienced them, and relived them with her. Now, she asks, "what else is new?" without remembering the story I just told her.
6. It's exhausting to be upbeat around her all the time. She is always so happy to see any of us kids when we spend time at home or take her on an outing. But the whole time she and I are together, I'm earmarking evidence of her decline, and grieving on the inside. She sets the emotional tone of our time together (maybe that hasn't changed much over the years), but it's hard to keep up with her and hide the fact that what I'm actually feeling is the exact opposite of what I'm expressing. I can't help but wonder if she's acting too.

Things Mom can do best

1. Spread peanut butter on bread (sandwiches I make are always messy).
2. Fold sheets (how did she get the fitted sheets to lay so flat in the linen closet?).
3. Peel apples (no waste, no excess).
4. Scratch my back (no one else uses the right pressure).
5. Sing harmony, even to songs she's never heard before (how does she know?).
6. Color inside the lines (Can we trade crayons? Yours seems to work better).
7. Mend a torn seam (her stitches disappear. Mine look like I've used yarn instead of thread).
8. Listen.

Where do I start

It's hard to know what to say. What my family is dealing with is so fiercely personal, it seems like a violation to write anything down. But at the same time, I'm desperate for feedback, to know I'm not alone, to hear from other people who are dealing with something similar or at least can share a burden of pain with me. I'm giving this format a try: an anonymous, public forum. Seems counter intuitive, but whatever.

I don't feel like I can write about what my Mom is going through right now until I bring you up to speed on who this woman is besides the Alzheimer's. Like an author, I want you to know the main character of the story and value her and all her uniqueness before the plot thickens. I want you to be invested in this story, to give you a taste of just how hard it is that all the things I love about my Mom have been stripped away. Okay, not all. I can't say that. I love her because she's my Mom, but her identity is definitely wrapped up for me in actions and behaviors. Slowly, those descriptions no longer apply.

She was born in 1953, to 33 year old parents, a salesman and a bank teller, and a 5 year old brother. She lived in WA state her whole life, attended school here, and grew up in a cocoon of love and support. My grandparents were very conservative people and Mom was sheltered from most of the cultural and social changes of the 1960s and early 70s (unlike my Dad, who describes himself as a "wannabe hippie"). As a young adult, she taught Sunday School, played the viola, traveled to France on an evangelistic trip with her church, and wrote poetry. She lived at home with my grandparents, studied education in college and graduated with a bachelor's degree in English and a high school teaching certificate. I hate to say it, but Mom's stories about her childhood are boring. As kids, my brothers and sister and I would ask her to tell us what she remembered "when she was a little girl." She sewed clothes for her dolls, collected anything to do with horses, and stayed out of trouble. Compared to Dad's stories of childhood mischief, teenage drug use, and wayward tales of barely making it to his twentieth birthday in one piece, Mom's stories weren't as dramatic and we would lose interest. I picture her childhood to be a lot like my own, but less exciting.

One of my favorite stories of all time is my parents' courtship. My Dad did an unusual and chivalrous thing by asking Grandpa's permission to date Mom. Grandpa said, "Sure. But don't even think about marrying her." This threw Dad for a loop. He was trying to take things slow in deference to my traditional and religious grandparents. At 22 years old, Dad had recently joined my grandparents church and noticed Mom right away. He thought he had already made significant progress toward adulthood but Grandpa said, "You have a lot of things to work on; you won't be ready to marry anyone for at least five years."

Surprisingly, this didn't scare Dad off. He and Mom dated for several years, while Dad worked on that long list from Grandpa (get a job, get a car, get a haircut, etc.) Grandpa gave his blessing after only three years since Dad demonstrated such good progress, and my parents got married in the fall of 1977. The pictures show an awfully happy couple and lots of smiling family and friends. It was a simple event: my great uncle took photos, Grandma baked the cake, Mom sewed her own dress, the groomsmen wore their best suits instead of tuxes, and members of the church decorated the fellowship hall.

I was born four years later, followed by four siblings in the next 10 and a half years. Mom stayed home with us kids while Dad went to seminary and pastored a small church. Since Dad had endured a terrible 12 years of public education, graduating in the third percentile of his high school, while Mom excelled in academics and had training as a teacher, they decided to home school all five of us. I still remember the first day of school when I was 5. Mom said, "We're going to have a visitor today!" I got really excited and wondered who would come to our house. I was disappointed when I learned the visitor was "Mr. A," and the introduction wasn't to someone who would play with me, but the alphabet.

My parents played the primary adult roles of my childhood, establishing connection with me as an infant, meeting basic needs and reassuring me that I was loved and protected. They also taught me my place in the world as part of a family. They demonstrated and required respect for others, appropriate public behavior, kindness toward animals, stewardship of Earth. They also taught me the practical knowledge I use daily: language, writing, and mathematics. It's hard for me to separate what lessons from my parents (Mom in particular) were academic and which were social or moral. I feel very fortunate to have been raised and educated by such emotionally in-tune, intelligent, creative people.

I put both Mom and Dad on pedestals of respect. That elevated position has been rattled and challenged more often, the older I get. As an adult myself, I recognize weaknesses of my parents and can see where their best efforts were misguided. But a safe place for me has always been the role of obedient daughter. I think the separation of moving out of my family's home and discovering my own identity, and now being married and re-aligning myself to form a new family unit has been especially hard for me. On top of that, the loss of my mom has been that much more painful. If grief can be quantified, I feel like I've been dealt a double blow: I've lost my mother and my favorite teacher. It feels like twice the loss. On the other hand, I think I'm pretty well equipped with patience and grace and affection for my mom precisely because she taught me each of those traits.

Alzheimers' a bitch

If Alzheimer's was a person, this is how I would describe their personality:

1. Inconsiderate
2. Disorganized
3. Fickle
4. Demoralizing
5. Helpless
6. Pitiful
7. Neutralizing
8. Needy
9. Corrosive
10. Debilitating
11. Passive-aggressive
12. Indecent
13. Selfish
14. Demanding
15. Lazy
16. Aimless
17. Sluggish
18. Stubborn
19. Loner
20. Chaotic
21. Homewrecker