Stuck in between

It’s not always like this, right before the end.  Sometimes death is sudden, and sometimes it takes a long time.  Either way is painful.  Letting go of someone we love is never easy.

Yesterday my mom’s oxygen level went below acceptable and her breathing was labored and short.  The doctor ordered oxygen for the apartment, and told us to monitor her oxygen level every hour.

My dad wants to save her, and keep her from dying.  “She just has to suffer through this and then she’ll get better, ” he announces as if he’s the doctor who guarantees immortality.  But when I see her in such pain from severe leg cramps, unable to eat real food, lying there with bedsores and diapers, I really have to wonder.  Being stuck between life and death is where she is.  She’s alive, but the quality of life is no longer fun, enjoyable or even simply boring – to be honest, it’s crap.

I spend most of my time reading to her, or listening to her try to tell me something.  I’m not sure she understands any of what I read, but she always seems to murmur ‘yes’ when I ask if she’d like me to read her a story.  Maybe I’m imagining her say ‘yes’ because I’d rather be distracted by words than to see her in her silent scream.

Her favorite stories are the ones about the love she shared with my dad when they were young.  I like to think she’s drifting to a happy place where all those memories lie.  Her heart remembers those times well, and I can feel her heart expand,

And so I read, and listen, read and listen, and sometimes we just hold hands and cry.

It’s okay to let go

“No, I have to die first. You can’t die before I die, ”  my father cried as he held her close.

My mom has become more and more distant.  It’s harder for her to connect.  The only time I’ve seen her smile is when Odin is in her presence.  Her eyes are closed for the most part, and when they’re open they are looking into nothingness, vacant, removed, empty.

I know she’s tired, oh so tired of fighting, of living with the excruciating pain that shoots down her legs, and grabs her tight around the neck.  She’s such a fighter.  She wants to be able to see Odin, and to watch all her children, grandchildren and great grandchildren grow up.  She wants to be there to celebrate their birthdays and graduations.  But she’s exhausted.

So I told her she can watch from heaven, and that she would be with us in spirit.

“This finger means I want to keep fighting, eating through a feeding tube.”

“This finger means I’m tired.  I don’t want to live with a feeding tube.  I want to go to sleep and find myself in heaven.”

Each time I asked, she pointed definitively to the finger that doesn’t want the feeding tube.

I spoke with the doctor and he agreed to take her off the feeding tube for food.   She would continue to get her meds through the tube, but her food would be through her mouth.  There will be no forcing her to eat, she gets to decide how much she wants to eat and when.

Now my mom is the one deciding how long she wants to live this way, and not some tube or anyone else.

Maybe there’s a reason she’s sleeping a lot.

Open to possibility, life can be filled with risk and wonder

I sat there with my mom and contemplated her situation.  She didn’t have the energy to talk, and her spirits were spiraling downward.  So I gave her the words, and let her listen.

“Mommy, I know it’s no fun living this way.  Do you remember when you told me when you could talk that you never want to be on a feeding tube?  Do you remember telling me that?”

She said an emphatic ‘yes’ with her eyes.

I held up my two fingers.

“This one says, I want to have a feeding tube and not worry about choking or getting an infection.”

“This other finger says, I don’t want a feeding tube.  I would rather get to eat real food but run the risk that I might choke or get an infection if food gets in my lung.”

I asked her three times, and each time she pointed to the finger that says ‘no feeding tube.’

Something had to be done, she was lying there losing her spirit, losing her reason for living, eyes shut and mouth stuck in the silent scream.  I called the doctor and asked if there was any way we could do both, the tube and real food cut into tiny pieces along with tiny sips of water.  And to my surprise, her doctor agreed!

Sometimes you just have to ask.  Everything is possible when it comes to being creative with the universe.

As she sipped water from the teacup, you could see her eyes light up, and her spirit return.  We all wanted to cry – some of us did, and others smiled like a newborn had just arrived.

 

 

 

I ask myself, what can I do to help?

“Prayer in action is love.  Love in action is service.”  – Mother Teresa

And did I mention that she now has bedsores?  even on her ear?  Between the sores, the severe leg cramps, the feeding tube, the inability to talk or write…I completely understand her silent scream.

The nurse came yesterday while my sister Michelle was there.  Apparently my father was so anxious and bossy, that the nurse had to ask that he leave the room.  He hates seeing my mom in pain.  None of us want her to suffer, but we each handle situations differently.  In times of stress, I’ve learned that I’m most effective when I’m calm.  My father chooses to yell.  He yells at people who aren’t making her better.  And since none of us can make her better, he yells at every one of us.  I pray that our caregivers don’t quit and I am so grateful for their patience and love.  I tell them this regularly, and hug them, and my father, with all my heart.

It would be best if I could remove my father from the Village and take him on a vacation.   But he would never leave.  I can’t even get him to take a break and have lunch.  I have to bring him his soup.  The other night I was able to take him to dinner, but that was while she was sleeping and there was no evidence of pain.

“Stop her!  Can’t you see she’s in pain?,”   he yells.  Does it help for me to yell back?  Does it help for me to cry?  I pause and ask myself, can I choose a response or action that can be helpful?  I try and understand.  I try to see his goodness. He’s losing his first and only love.  He’s losing control of the situation.  Life is not turning out the way he wants it to…So he yells to control someone.  I don’t have to take it personally.  He’s yelling at life, and really death.

I have the Awareness that he and I can engage in that same old dance of the demanding father and obedient daughter.

I Accept that I can’t control or change my father’s fear.

In choosing my next Action, I choose not to be the dutiful daughter who cries when yelled at.

I choose to be strong and loving.

I choose to understand his fear, and to take steps that could improve things for my mom.

I need to have another discussion with her to see what she truly wants to do.  Perhaps it will take several conversations.  Perhaps she would rather eat food and take the risk that she could choke or get an infection when food gets in her lungs.

I need to call her doctor and find out more about palliative care and get her to a place of comfort.  I know she wants to see her great grand baby one more time, and maybe all this suffering will be worth that big smile he’s going to give her.

Maybe that love that will be exchanged across the four generations, will make it all worth it.

 

 

 

 

The love and healing of the full moon

It’s not an easy lesson to learn, but I must admit, it may be one of the most important.   I spent so much of my life pleasing others, nurturing them and fixing them.  But if I don’t take the time to love myself and care for myself, I can get to a very unhealthy place.  I can start to feel the anxiety that rules my father’s life, and I become the victim of his wrath.

So I left my mom in the hospital, with the caregiver and my dad to bring her home.  I stayed until my work called, early afternoon, and she wasn’t officially released until 6 pm.  In the old days, I would have let myself get frazzled, and perhaps frantic and victimized, and definitely wrought with guilt.  I knew I was trying my best and that I wasn’t going to be able to fix the situation.

After work, I headed over to spend time with my daughter, Riki.  The peace and calm that she and I share is beautiful.  There’s nothing about her that I ever want to change, and I have the feeling she feels the same way about me.  We accept each other just the way each is, and that is certainly not what I experience when I’m around my father.

It was full moon last night, so Riki and I headed down to the shore to watch the moon rise over the ocean.  My dear friend Cori had told me about yoga under the full moon, and I’m so very grateful she didl.  It was magical – a giant ball of gold, rising from the ocean.  It was perfectly round and seemed to grow as it rose.  We did our moon salutations under the stars as we listened to the crickets sing, and water hit the shore.  The cool ocean breeze touched our faces, and I could feel the love embrace my soul as the moon’s bright light bathed us.

Life may not be what we want it to be.  Having Parkinson’s sucks.  My mom may decide not to be fed through a tube, it’s her choice. As I sat there becoming one with the moon’s light, I could feel the many blessings that surrounded me, and I knew everything was going to be just fine.

Murmurs of despair are allowed

Is it possible that my mom was delusional? or perhaps I was?

She awakened from a deep sleep yesterday, barely able to open her eyes,

“I dreamt I had a lot of children,” she murmured in my ear.

“You do!  you have 13 grandchildren and 4 great grandchildren!”

She smiled as if still in her dream.

“I want some water.  And I’m hungry.  When’s dinner?,”  she begged, still with her eyes closed.

“oh dear,” I thought to myself, she must not remember what I had explained to her the other day about the feeding tube.  And so I told her again, as carefully as I had the first time.

And then we received the news that she wasn’t going to be able to go home, which meant another night in the hospital.

Did I tell you that she becomes a different woman at night when she’s in the hospital?  She becomes aggressive and almost violent, tearing at her tubes, ripping them off, and hitting the nurses when they try and help.  Our caregivers take turns being with her, and every night, they report the same thing.  She becomes obsessed with the idea of leaving the hospital, and can’t stand that she feels trapped.

She began her silent scream when she realized she was going to have to spend another night hooked up to the tubes of antibiotics and liquid food.  I tried my best to console her, to hold her hand and tell her to relax and accept that it does no good to try and fight the doctors.  It doesn’t help to have my dad, yelling at me to stop her and that I can’t leave until I calm her down, and then complaining that “this hospital doesn’t know what they’re doing!”

I know my boundaries.  I know I can try my best to calm her, but that it’s not up to me to make her better.  I can let her know how much we love her, but I won’t be able to stop her silent scream.  I know it’s not good for me to have my dad yelling at me to do something to stop her despair.  She’s allowed to be in despair if she so chooses.  I would be too if someone were to tell me I can’t drink water and eat food ever again.  I feel her pain, but I’m not going to let her pain drive me crazy.

I choose not to feel guilty when I can’t make things better.  I’ll talk to her about her choices today when she’s had time to think about it, and when things have settled down. Bless her heart.

I gave them my hugs, and love, and made my way home.  It felt so good to walk under the light of the nearly full moon, watching little Danny wag his tail as he sniffed the flowers along the way.

Murmurs of joy

Her hands were playing with the sheets.  They do that when she gets restless.  I asked her if she was cold, and she opened her eyes slowly.  Gooey gunk had collected along the edges.

“You’re back,” she murmured with a smile.  She can’t talk anymore, but she can murmur sometimes, when she’s had a lot of rest.  As her caked lips and dry tongue formed her tiny words, I could make out what she was whispering.  I leaned over with my ear touching her parched lips.  She isn’t even allowed to drink water.  That seems cruel.

I sat next to her and showed her Odin videos and her whole body filled with joy.  Her day brightened and eyes opened wide.  I told her about my trip and how much fun I had taking Odin to the zoo, and the farmer’s market.  How it poured and how Odin and I ran to find a dry spot under a tray of tomatoes, and how he loved the rain and putting his fingers and toes under the drops that fell from the red round balls.

I gave her the news about the tube. I didn’t want to make it sound sad, I just delivered the news like it was the next step in the process of living with Parkinsons.

“What’s this disease that I have?”  My mom has always had a great memory so I thought she must be disoriented and was asking why she was in the hospital… “You have aspirated pneumonia, mommy”

“No what’s the disease they can’t cure?”  she murmured.

“Oh, you mean Parkinson’s?”

She listened carefully, and after a long pause she murmured, “well the good thing is that we won’t have to pay the Village for my food anymore.”

We laughed.  “True, true mommy.  That’s a great way to look at it.”

“And my insurance will pay for my tubes of food.”

We smiled at each other, knowing that she was trying so hard to be positive.

She went on to murmur, “We’re lucky that the government is paying for my bills.  Tell your children to keep working hard.”  And we laughed some more.

“I’m really lucky.”  she added. “When is Odin coming to visit?”

I couldn’t believe all the words she was speaking!  I was having to do a lot of guessing, but I think I was getting most of it.

“Next week!  And Tai, and Chih, Ren and Riki…They’re all going to be visiting.”

Her eyes got big, and I could tell she wanted to dance.

“Hey, maybe you’ll have more energy now that you won’t have to be spending so much time chewing and swallowing.  Maybe you’ll have more energy to talk!”

She smiled big, and said, “Maybe I can even learn how to sing!”

“Maybe we’ll ALL learn to sing!”