And then all hell breaks loose

I posted this on my happy blog yesterday:

Grief has widened my perspective. I feel like a funnel, taking in more than I have the capacity to contain. I move forward with open arms, vulnerable but receptive.

A few hours later, around 4pm, I got a voice mail from Dad, saying he was taking Mom to the emergency room. They had gone grocery shopping and he left Mom in the car for 10 minutes. When he came back, he thought Mom was having a seizure. She was crying and complaining of back pain. He asked if she wanted to see a doctor and she said yes.

They were stuck in the ER waiting room for two hours (my husband and I met them there to pick up the groceries from Dad's car...he was worried the meat would go bad). I kept saying prayers asking for strength,  patience for Dad, and comfort for Mom. So grateful I'd had a reflective moment earlier in the day. I know it kept me from being completely sideswiped by panic. I wanted to help, and a cold fridge was all that was needed from me.

A CT scan, X-ray, blood work, and urine test later, it turns out Mom has another bladder infection. What Dad thought was a seizure was just squirming in pain (and the totally disorienting feeling of not understanding the pain or being able to describe it to him).

I can't imagine how hard it must have been for Mom to describe her symptoms, or for Dad to bring the doctor up to speed on Mom's medical history (doesn't dementia trump all? How can anyone tell the difference between physical pain and emotional bewilderment?). Dad said the staff was great and took really good care of Mom.

It was 11pm when Mom and Dad got to our house to pick up the groceries on their way home. Mom had been given pain killers and Dad was eager to get some dinner and go to bed.

Just another day in the life of Alzheimer's: total upheaval.

Need to vent

• I have one friend, a co-worker, who also lost a parent to Alzheimer's. We talked today at lunch, and it helped. People who understand are hard to come by. 
• Seeing my mom-in-law and sister-in-law interact makes me jealous. I'm grateful to be included in the sisterhood on my husband's side of the family, but nothing replaces the friendship I had with Mom.
• It frustrates me that I can't be the "strong one" all the time. Sorrow feels like being out to sea with a half-inflated life ring. 
• I simultaneously love and hate visiting the house I grew up in. It brings back so many familiar sensations: safety, comfort, definition. But seeing it in such disrepair is heartbreaking. The house, Mom's domain, has been out of her care for almost five years. There are no pens or post it notes on the kitchen counter. The cupboards are all disorganized. Nothing is how it should be, even in the junk drawer. It's those realizations that kick me when I'm down. 
• Mom's been having a hard time falling asleep. She can't get comfortable. Dad said she needed him seven times the other night before finally getting to sleep. She's terrified of hitting her head on the headboard or wall (legitimate fear? I don't know). She was panicked, even just describing it to me and my sister. She feels like she's drowning, or falling, or sinking. I think she really believes that her life is in danger. She's completely overwhelmed and bewildered. She leaned on my sister's shoulder and sobbed. I've never seen her cry so bitterly. My heart broke, obliterated, smashed to a million pieces. My sister and I both rubbed her back and cried with her. She looked like a very old, lost, frightened woman. She cried like a child, completely overtaken by her circumstances, with no ability to step back and look at a bigger picture. She is loved. She is safe. She is being cared for. But her 30 and 22-year old daughters couldn't convince her. 
• Dad told me that she woke up the other night, asking what the people outside her window wanted, and why they were giving her something sweet in buckets. ????????????? I don't know if it was a hallucination or a really vivid dream. Dad told her, "there's no one outside your window." She burst into tears, angry and frustrated that Dad didn't believe her. It made me angry, just hearing the story. Why wouldn't Dad reassure her? Why not just go with it, and soothe her? Why not pretend the people outside her window are harmless, chuckle about buckets of sweetness (how odd!), kiss her forehead, and tuck her into bed? It sounds like a battle of wills. I wonder how much longer Dad can be her caregiver. 
• I'm afraid for Dad's health. What if he finally loses his patience, his temper, his cool? What if he breaks an arm trying to keep Mom from falling in the bathroom? We're all sunk without Dad. Is putting Mom in a nursing home the final victory for Alzheimer's? We can't lose sight of what's best for Mom, just because it doesn't look the way we want it to.
• Are my brothers grieving? They haven't visited Mom much lately. Do they notice huge changes when they see her? She's changed a lot even in six months. How can I be the best big sister possible to them? I feel the weight of first-born responsibility heavy on my shoulders, tight around my neck, aching in my heart. I want them to know how much Mom loves them. Somehow, I feel responsible to tell them but I don't know why or how. 
• Too many tears to keep typing. I need to go to bed.

Question

Today is my parents' 34th wedding anniversary. I just called my Dad to tell him Happy Anniversary, and I felt myself getting tongue tied and choked up leaving a voice mail.

It's probably best not to say anything to Mom. I don't want her to feel bad for forgetting. She was always card-maker-extraordinaire, thoughtful-gift-giver, and made every special event in our family meaningful with her attention and special words of appreciation.

What is a daughter supposed to say in a situation like this? "Thanks Dad, for holding up your end of the bargain, even when you've lost your best friend, partner, lover, and confidant." My heart breaks to even think of it.

It's an important day to celebrate, but painful in it's own way.

The message I want to give my parents most is this: I know what unconditional love looks like, sounds like, feels like because of you both.

A Realization

Things that Mom taught me have become sacred.

My hands remind me of hers: folding laundry, cutting vegetables, watering my garden, hemming a pair of pants with needle and thread. I even see her handwriting in my own.

I feel sad when the memories trickle in, but also very very grateful. I honor her by doing the things that she taught me to do. She was my earliest role model and my first teacher.

Alzheimer's has stolen so much from us, but it hasn't swallowed her completely. I still have the opportunity to express love to her.

This weekend we shared blackberries as I picked them in my parents' backyard.  I brushed her hair.We went on a picnic and I helped her dip her Dairy Queen chicken strips in ketchup. I held out my arm to steady her in and out of the car. I buckled her seat belt.

Even though these mundane things can push me to the brink of frustration and I feel short tempered, I wouldn't trade those little exchanges for anything.

I love you, Mom.

Loving Mom

I posted on my regular blog some of the things on my mind lately regarding Mom and Alzheimers. I'm more selective about what I say there, but wondering if it's time to combine these two blogs.

Do any of you keep the Alzheimer's stuff seperate from your other writing? If only it were so easy to categorize the hard stuff in other areas of life.

http://emuf.blogspot.com/2011/06/loving-mom.html

Mother's Day 2011

I posted photos from Mother's Day on my regular blog: http://emuf.blogspot.com/2011/06/mothers-day.html.

Try as it might, Alzheimer's can't steal our joy.

Raw

I found this in my journal from last summer.


Dry, emaciated, thirsty heart

despite a deluge of tears.

No oasis to gather strength.

Just enough time to

catch my breath

lower my eyes

move on in the sandstorm.

"You're so strong."

It’s bitter in my ears.

It's vinegar on a sponge.

'Strong' isn’t worth this.

'Strong' isn’t a package delivered on the doorstep.

'Strong' is footfall after weary footfall when
the destination is too far away to be seen and too far away to imagine.

"You're stronger than you know."

I know how lonely I am.

I know how much pain warrants a comment like that.

I know that headaches and heartbreaks

hurt like hell.

"You'll be such a comfort to someone else in a similar circumstance."

Not if I run the other way.

I want nothing to do with this much grief.

I don’t want to prolong the pain.

I want to distract myself

to avoid the guilt of enjoyment,

the self-conscious gratitude I feel,

knowing not everyone is still able to

write

read

remember 

dream.

But what can I say?

I cock my head.

I smile knowingly.

I change the subject.

I'd like to shout.

“Oh, you noticed?

It's not just me?

It's shitty, right?

What do I do?

I'm terrified.

I'm not strong, just bullied into silence.”

I'm maintaining.

I’m keeping my balance.

I’m remembering to breathe.

But it takes so much energy.

Don't ask me for an update.

Don't act like you know how it feels.

Don't tell me a story about someone who went through something similar

(it makes you less credible, not more).

Don't reminisce about the old days.

Don’t use past tense.

If you say, "She was such a wonderful person," I'll scream.

You don't know the half of it.

Allow me a wide berth.

Let me not explain my mood.

Forgive me if I'm abrupt.

Silence is a good gift.

Let me sleep. It's the only thing I do well.

Learning Patience

Mom’s 58th birthday was last week so my sister and I took her out for lunch. There’s strength in numbers. I told my sister recently that I wish I was as patient as she is with Mom. Sis takes it all in stride and smiles and soothes and makes Mom feel comfortable. I cringe and avoid eye contact and bite my tongue to keep from crying.
Mom needs help getting in and out of the car. She has a hard time with steps and moves slower than she ever has. She fumbles and can barely feed herself. Her speech is broken and often trails off into nonsense as she loses track of what she was saying. She’s easily distracted and comments on odd things.

The amount of patience it requires to spend time with her is excruciating to me. It’s hard to distinguish the pain of seeing her struggle with the frustration of having to help. Bottom line is that I’m angry. Being around her churns up all my anger over the unfairness of her disease. I try to make Mom laugh and stay light hearted but often it’s a false happiness I model. She can no longer tell that I’m faking it.
My sister told me that her patience took practice.
So I cut myself some slack on our outing and allowed myself to be out of practice. We had fun! Mom is still in such good spirits. She LOVED seeing us and said repeatedly, "My girls! I miss you!" We fussed over her and helped her change into a fleece jacket. She put on her new slip-on shoes with gel soles which she loves. My sister fixed her hair. Mom told us that Dad said to let us help her style it after he blow-dried her hair that morning. It still looked like she'd slept on it.
We said goodbye to Dad around 2:30pm and I said, "don't wait up!" Mom was all smiles.
Mom got into the car without any help, probably because she was excited and didn't over-think the mechanics of maneuvering into the seat. We buckled her seat belt and pulled out of the driveway, commenting on the new neighbor's changes to the property next door. There were backhoes and trucks in their driveway. The lilac bushes I loved as a kid were all gone. Mom said, "I worry about Zelda [the cat] getting out. They have lots of dogs."
We had a late lunch in one of our favorite restaurants. We took a bunch of pictures of each other at the table while we waited for our food. We joked and told Mom stories. She loved listening, like any mother would. Her sense of humor isn't gone and she laughed over our exaggerations, miscommunication with our husbands, cooking foibles, and adventures at work. And when we repeated stories, she enjoyed them just as much the second time around.

My sister and Mom



Me

 We were talking about headaches and I told my sister, "Maybe sneezing really hard would help; you could just shoot it right out your nose."

Mom frowned and said, "Oh, goodness" with the exact same inflection I'm used to. That's always been her indirect way of saying, "Ick! Stop it!" It was nice to hear that familiar phrase, as if she was good-naturedly scolding me like she did when I was a kid.
After eating, we did some antique shopping. I was worried Mom might break something, but she followed us around the store without help and gently touched the things that caught her eye. I felt like a parent as I supervised her. We laughed over the weird things we saw and pointed out the dishes and fabric that reminded us of family friends or grandparents.
I caught Mom looking at me a few times and when we made eye contact, she smiled really big. It was obvious she missed us and was happy to be with her daughters for the afternoon. It was really healing for me, too: relieved the guilt I was feeling about avoiding discomfort. I genuinely enjoyed myself.

It was a really nice time. I love and admire you, Mom.