Sunshine rain: a day of caring for Mom

The rain sounds so good. I hope it is still raining when I go to sleep. That is the best music to sleep to: rain.

It has rained on and off all day. I have had the window open behind Mom’s bed so she can listen to it too.

I talk to her about all the good things the rain will do. She nods as I talk, and she smiles vaguely.

In spite of the loss of her health, much of her working memory, and her sense of the world, she remembers the magic of gardens and rain. She likes to hear about it.

She slept well last night. On the day bed next to her, I did, too. I even slept late. It felt good. I almost can never do that. Mom slept soundly until past eleven.

This morning, she was so sleepy, I could hardly get her medicine down her.

The Hospice nurse, Kelly called to check on us.

She asked whether Mom had finally pooped. Mom not pooping has been a problem the last couple days.

It’s surprising how central regular bowel movements, or the lack of them, can become, in the day- to -day life of caring for a sick or dying person. They are tenuous indicators of the sick person’s state, and to the care- giver’s sense of the continuum of life.

The answer for Nurse Kelly was yes. Mom had accomplished so very much of that crucial activity, I had had to change her shirt.

As Mom slept on, I watched some Bugs Bunny, curled up in the big chair with my coffee. I felt kind of happy.

Later my step dad, Tom, came for the afternoon, and I had the chance to  pick up my youngest daughter, Rosie, from her friend’s house.

I also picked up lunch for Tom, Rosie and me. We had a quiet meal with our fast food unwrapped on the table. I fed Mom some of that good soup my friend, Jocie, brought yesterday. Mom didn’t eat that much of it but she did OK.

Eating; another big issue in the life of the sick and their care- givers.

The simple functions of having a living body become the major milestones in the day.

Tom held Mom’s hand for hours and hours. I talked to him some, between my efforts to catch up on household chores. I got him to laugh a little. It was good to hear him laugh.

Mom pooped a whole bunch again. It even got on the bed rail! Holy cow it was incredible. I told Tom he didn’t have to help me clean up, but he helped anyway.

I put on some calming music for Mom, and we got to work.

It may sound strange but cleaning up all that poop with Tom was one of the nicest parts of my whole day.

It was love and it was family. Sometimes deep connections come through especially well cleaning up poop, I suppose.

We got her all clean, the sheets changed, and she was awake for Tom for a little while. Then he went on home.

I spent some time reading Foundations by Teresa of Avila. I have had a strong urge to study lately. I think it is a good thing.

My eldest daughter, Maire, took Rosie to get an inexpensive dress for a Quincinera she was invited to this evening.

Rosie came back looking very pretty in a peach lace dress with a little black velvet belt. I would never have thought the black velvet would be pretty but it was. She looked really pretty.

Tom took her to the KC hall on Palasota, where the event was to be held, on his way home.

Sometime after he left, I was re-positioning Mom, and I got really sad and started crying. As Mom gazed at me serenely I told her what was going on with me; how I loved her, and how I missed so much when everything was OK, how scared I was.

I cried on her shoulder.

If I don’t look at her, and see how sick she is, all I feel on my face is my mom’s familiar shoulder. That hasn’t changed.

She patted me absently for a second. I tried to get command of my feelings.

Then we looked at each other for a long time until she fell asleep.

I thought of Dorothy in The Wizard of Oz, locked in the dark tower. She can see “Auntie Em” in the witch’s hour -glass. Her distraught Aunt seems to be calling her name, and Dorothy pours out her heart to her, about how scared she is, how she misses her- but it becomes apparent that Aunty Em can’t hear her- she just goes on saying Dorothy’s name and looking around and Dorothy backs away sobbing into her handkerchief, profoundly cut off and alone, her relief and sense of connection suddenly vanished as the witch’s mocking face appears instead.

When I was a little girl, that moment in the movie was the most horrifying one.

Even though I often have magical moments with Mom, and I would never want to give up the love, beauty, and honor of this time in our lives together, the horror of this disconnect, this loss of her is undeniable. I still love her and need her as a mom. And she can’t be there.

Someone turned off the sound in the hour- glass picture, and in some very important ways, we’re both alone with this destructive force that is her illness, and her approaching death.

Maire came over a while later to watch Mom so I could run and get some coffee beans since we were a bit low.

My friends had our weekly coffee night at my house tonight so I wouldn’t have to figure anything out about watching Mom or going anywhere.

When I got back, my friend Andrea was here. She was tired from work. I was feeling sort of unfocused by then and tired out myself.

We drank coffee and chatted and Andrea was about to go home when Jocie showed up with a hot apple cake and some gelato to go on top of it.

We talked, ate cake and drank coffee.

Jocie fed my mom some pureed cottage pie she had made. After a while I had to go get Roise.

On the way home Roise was very talkative about the Quincinara and its’ details.

She had also gotten some attention and kindness from her “crush.” He had taught her some of the dances. “And he even put his nose in my hair!”

When we got home my friend, Nan, was here. She was very late for coffee night, having lost track of time. Andrea had gone home so Nan, Jocie and I sat at my kitchen table and talked.

After Jocie left, Nan stayed a long while. We talked about all kinds of things- some of it a bit heavy. We talked a long time.

She went in and kissed my mom before she left.

I looked in on Roise who had fallen asleep with her dog, Flower, and all the cats on her bed.

I checked Mom up close one more time. I paused to watch her sleeping face, the slight smile on her lips. After a light touch on her cheek, I lay down to sleep with my book.

With a prayer that God would give her a night of easy breathing. I prayed in thanksgiving for the rain, for my family, for my friends, for this special time in our lives, as hard as it is, I fell asleep too, also smiling.

*My mom was diagnosed with early onset dementia, lymphoma, and COPD. At this writing, she was bed bound, and in hospice care at my house, where she eventually died October 12, 2012.