Hospice

The new word this week is "hospice." The nurses are going to find out what kind of help they can get to make sure Mom's not in pain.

The new medicine Mom is on to keep her subdued is working, and she's been in bed for days. She refuses to eat, not even smoothies. 

The end is near.

My heart breaks a little more each day, whether I spend any time thinking about her or not. Every day is time and space since we had an actual conversation and connected as mother and daughter. She's already gone. But her body lives, somehow, infuriatingly incompetent. Her mind and mannerisms and tender heart are national treasures, but she wastes away in a hot, stuffy nursing home.

Mom, I'm so sorry. I wish I could make this better. I wish I could relieve you from discomfort and confusion. I don't want to let you go, but I want you to be at peace. I love you. I want more than anything for you to know how much we all love you. I just wish it was enough to rescue you from this hell.

Now what

Mom's been in a nursing home for 17 months.

I just found out that the nurses have called my Dad 5 times in the last week because Mom's been having episodes where she repeats the same nonsense words over and over again and gets worked into a frenzy and screams. Dad said she becomes inconsolable.

How much worse can this get?

When will this misery end?

I want her to be free from suffering, but I don't want to say anymore goodbyes. We've lost her piece by piece until I'm sure there's nothing left. And then I get news like this and I'm grieving over something new.

If an animal was in this much distress, I'd put it out of its misery. Is that a terrible comparison? I feel like a monster for thinking it, but it just seems inhumane for Mom (or anyone trapped in a body overtaken by dementia) to be stuck in this debilitating state.

I've always believed that life is a gift from God and that only God is qualified to determine when it ends.

But "qualifications" are all mixed up for me. Nothing makes sense anymore. Bad things happen to good people. There's no fail safe against suffering. If comfort and peace could be earned, my mother certainly qualifies. From my perspective, Mom got overlooked in the blessing category.

I feel so alone.

I'm mad.

I'm abandoned.

I can only imagine the magnitude of those same feelings in Mom. God, if you're anywhere at all, let my mom know she is cherished. Not forgotten. The impact of her life far outweighs the damage done by Alzheimer's. Please let her know that, even in some small cavity of her brain. Let her soul be content in knowing.

May she be at peace. 
May she be free from suffering. 
May she be healed. 

September, 2012

Just when I get used to the new “normal,” the rug is ripped out from under me again. I've written an update on Mom here.

This weekend marks one year from her move into the nursing home.

What do I do with this ulcer of sadness? I know it’s not honoring Mom to be mopey and depressed, waiting for people to ask what’s wrong and how she’s doing, polishing the rocks of worry and grief, carrying a rain cloud over my head like an umbrella.

Bloom where I’m planted, that’s what she’d tell me.
Smile.

Love the people around me.

Let the experience shape me, make me emotionally deeper (like hose water in the sand box, when we used to build sand castles with moats).

Be kind. That's what she'd do.

I don’t know if I’m sadder for Mom or Dad or Olivia or Ian or Alex or Elliot. Or myself.

I miss Mom. Our friendship is a memory; what’s left is surface level and prescriptive. Friendship still provides context for our interactions, but we can’t share what we used to, like girlfriends. I miss that. I miss her input. I miss her insight. I miss her perspective. I miss her jokes.
I feel the sadness in my sinuses: pressure in hollow places. My head aches. I remind myself to exhale big breaths. I need another good cry.

Is this what a brain tumor feels like?

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.