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?

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.

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.

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.

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.

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.