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?

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.

Gardening for Mom

Today I'm going to Mom and Dad's to do some weeding in their flowerbeds. The dandelions were waist high last time I visited, and while I have some time off work, I'm going to pitch in. Manual labor is the easiest way to help Mom these days. It's so hard to take her on outings or spend time chatting because I lose patience after a few hours. I find myself avoiding eye contact because I don't want her to see how hard I'm trying to hold back tears or biting my tongue.

Mom has her support group meeting today, so I'll be able to garden uninterrupted. Last time I worked in the yard, she came outside to help, but needed constant supervision.

I tried to make it as simple as possible, by piling all the weeds I'd pulled on the lawn. Instructions like "put these weeds in the wheelbarrow" baffled her. She lifted the handles of the wheelbarrow.

"No Mom, put the weeds in the wheelbarrow."

She lifted the handles again. It must be the order of the words, I thought.

"Pick up these weeds right here, the weeds."

She lifted a handful of weeds out of the wheelbarrow and started putting them on the lawn.

Sigh. It's painful to see her try so hard and fail. I try not to think in terms of pass or fail.

Once we finally got a wheelbarrow full of weeds, I asked her to take the load to the backyard. She was gone for a long time. I ran into the house to use the bathroom. When I came back, she was in the front yard again, but no wheelbarrow.

"Where'd the wheelbarrow go?" I asked, without impatience.

She pointed to the backyard and muttered something about needing help (her speech has gotten harder to follow; sentence structure is a tough one for her these days).

We walked to the backyard together. Still no sign of the wheelbarrow. I asked her to show me where she went. She was at a total loss. We walked up the neighbor's driveway. There was the pile of weeds, near a lilac bush. It was out of sight until we were standing right above it.

Mom laughed at herself and tried to diffuse the awkwardness by saying, "Oh, your poor mother."

"It's OK," I soothed. "I'm sorry you had to go hunting for the brush pile!"

My mind raced. How the heck did she confuse our backyard with the neighbor's driveway?

I feel guilty about "avoiding" her today, by going when I know she won't be home. A family friend is picking her up at 10:30 this morning and I'll have about four hours to make some headway in the garden. It feels like the best I can offer right now. We both love gardens and flowers and I think it will mean a lot to her to be able to see her flower beds again. Maybe I'm just justifying my choice. Especially after all this recent blogging about her and reading books on AD (which I will review here), I don't have it in me to be emotionally available to her.

Hacking at weeds and getting dirty and uprooting overgrown shrubs seems more appropriate, at least today. The negative emotions need an outlet.