The Path.

There are two paths in this hospital.  One leads to the birth center, the beginning of life, where my son was born.  The other leads to the ICU.  In the last 24 hours, I had to take the path to the ICU.  Next to me laid my mother, alternately nodding off and coming back looking frightened and helpless.  She flailed her arms.  She gagged.

She is non-verbal, mostly.  She does come back at times enough to reach out with her arms and mumble her love for me and my dad.  She holds our hands tightly.  She hugs us so strong.  Just enough to break my heart.  She is shaking all around her mouth and hands.   That is Parkinson’s.

Deep inside her face, I can see my mother.  The strong, resilient and domineering woman who raised me.  But the hollow, frail shell from which she is trying to reach me is wounded.  I do not know how much longer, the body which houses my mom inside can last and it makes my heart sink into my stomach like I’ve been socked in the gut.

I can see her fear.  I can hear it.  I’m less stressed when she is sleeping because I know she is less conscious of the pain and discomfort although her moans penetrate my very being and cause me to tense and shake as well.  At least here, in the ICU, the nurse is attentive to her every move.  The nurse is strong, commanding, confident.  Everything my mom used to be.

This nurse explains things as though everyone knows how to speak her language.  She is blunt.  She attempts to remain detached but I have caught her soft side.  She has given us kindness and honesty mixed together with the look of knowing sadness. Flowers are not allowed here in ICU but some angels that call themselves Jonathon and Lisa brought them by for my mom.  The nurse let her keep them.  My mom, in a moment of coherency today, said how pretty they were.

In the afternoon, a gray-haired man wearing a peach colored shirt and khakis introduced himself as the physician.  He told me my mom had suffered acute kidney failure but that her kidneys had regained function.  He said she had E-coli, anemia and had been profoundly dehydrated.  She had a fever and then her temperature dropped so severely, she was placed under an air blanket of warm heat.

Her Parkinson’s symptoms have increased due to the trauma and assault on her small and frail body.  He advised that she may be able to be discharged in 48 to 72 hours but I do not see this as realistic.  Unfortunately, a few conversations have been like harsh slaps across my former reality to wake me into the one in which I now reside.  This is yet another path – one I do not want to walk but which I am being pushed down nevertheless.

On Friday night in the Emergency Room, as I watched the horrific devastation unleashed on Japan, muted, on a monitor near my mom’s bed, ironically an Asian doctor seemingly oblivious to that reality and to ours, appeared chipper as he “joked” that maybe my Asian mom just need to “poop”.  After joking like that, he then asked me if I knew what CPR was.  “Yes,” I answered not understanding what he meant, but the next sentence made it clear.  “Do you know what a DNR is?”  he asked.  Of course, I knew.  That is one of the perils of the area in which I practice law.  I know what some people do not until they experience it themselves.  DNR is “do not resuscitate” and refers to a choice of not taking measures to save a life if someone is not breathing or the heart fails.  Yes, I told him, I did know and he was instructed to take every effort for my mom.  He said my dad and I should discuss it.  Slap #1.

Next, in the early afternoon, I was walking out of ICU to get my dad some Tylenol.  Upon walking out the door, my way was blocked by a thin woman in her 30s who identified herself as a “substitute” social worker.  She held a clipboard and started asking me questions.

Overnight, my mom was refusing treatment.  She was tired of fighting, tired of being poked, tired of the tubes and, because the ICU prohibits family from staying overnight, we could not be there to support her.  Because of my mom’s refusal, the social worker was notified.  She advised me that my dad and I need to make some “decisions”.  In order to make decisions, sometimes, she advised, a “family conference” is necessary.  She said that she was a mere “substitute” so she did not want to start the process, and have someone else take over.  She said she’d have the “regular” social worker call me and arrange a meeting tomorrow.  Slap #2.

As I sat my my mom’s bedside, another woman, older, with short, almost beehive like hair, walked in smiling, again holding a clipboard.  She had a badge.  She said she was a “Discharge Planner” and had come to discuss what would be best for my mom on discharge.  She then advised me that she wasn’t shoving my mom out the door of the hospital but that me and my dad had to consider that she may need some “physical therapy” upon discharge at a skilled facility to assist her in returning to her best mobility.  She said it would be about 45 minutes of physical therapy a day.  Did we have any questions?

Yes, I had questions.  What did she mean “skilled facility” – was she talking about a nursing home?  Yes, she said, she was, but only temporarily.  What did she mean “temporarily”?  She said 7-14 days.  She volunteered that a physical therapist would come by to perform an assessment on my mom to determine what she needed.  I asked if the physical therapist would then meet with her and the physician to create a discharge plan.  No, she responded, she was act autonomously.  Really?  She’s not a physician and not a physical therapist but she was going to plan my mom’s future.  Maybe this is my anger stage, but I think that’s wrong.  At this point, I felt the whole approach she exercised in revealing this information, was a lie.  I did not believe her.  I still don’t know what to believe.  Slap #3.

Finally, the physician advised us that my mom would be transferred up to “the floor” because she had stabilized.  This does not mean she is “better”.  It means, she is how she is.  She is back in a room with my dad as I write this.  He’s staying with her overnight.

I have come home to a very understanding and very loving 4 year old son.  Was that last sentence contradictory? He greeted me with his standard, “Mommy, go away!” which I get whenever I’ve been gone for some duration as punishment.  This was immediately followed by, “Mommy, stay.  Mommy, I love you.  Do you love mommy?”  I told him I love him.  I held him tightly.  I needed that hug.  It was the best medicine ever.

My son has been asking to call his po-pos.  No, they aren’t the police.  This is just the name they’ve been given as grandparents.  My son has missed me.  His routine is disrupted.  His father is taking him places only mommy used to take him before.  His amazing and loving nature has shined throughout this ordeal.

On Saturday and Sunday morning, he went to the hospital. He saw his Grandma Po-Po there.  He tried to push buttons on her bed.  He pushed buttons on an elevator.  He hugged his grandpa.  He told his grandma he wanted her to go home.  He said he wants to be a doctor. (If there is any elevator operating involved in a doctor’s job description, problem of career solved.)

On Sunday night, after my dad and I were kicked out of the ICU by staff policy, I brought my dad home with us.  He spent the night.  My son was thrilled that his grandpa was there.  Then, because my dad stayed upstairs and my son was downstairs, that was the end of the conversation, which was just as well because my dad needed the rest.

On Monday night, my son was incessantly asking to call the “po-pos” and telling his Thomas Train phone, “Hi Grandma Po-po.  I hope you are feeling better, grandma.”  This almost made me break down in tears but then, of course, it turned into a chant.  The record was stuck and he kept repeating, “Let’s call the po-pos.  Who is going to call the po-pos?  Daddy, call the po-pos.”  Every last one of my fragile nerves was shattered like glass listening to this until my husband took him upstairs.

I’m tired now.  Too many thoughts running through my head for any type of measurable sleep tonight.  I did want to show you how I saw the world tonight as I exited the hospital to go home.  It’s a lot like I feel now.

A glimpse of sun.

There is deep, dark gloom in the clouds.  The street is already wet from the afternoon rain.  I know spring is on the way.  Fruitless plum trees left a flourish of a beautiful display as I walked the parking lot in search of my car.  Far away in the distance, behind some well lit orange clouds, was the warmth of the sun.  I wish I could get there from here.  Doesn’t seem possible right now…

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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16 Responses to The Path.

  1. Tam says:

    *hugs!*

    I wish I could just offer a hug and prayer leave it at that here, but after what I watched my best friend go through with his father I feel I have to say the following…

    The scenario with the ‘social worker’ at the hospital? I think you’re absolutely right to be doubtful about the whole thing. These days, most hospitals are run by the insurance companies, which also run the nursing homes. Their goal is to get as much money as possible as quickly as possible, while spending as little as possible to do it.

    With elderly patients, the trend seems to be to get them stabilized in the hospital and then move them on as quickly as possible, preferably to an understaffed, insurance-run nursing home where they can pull in massive amounts of money for an extended period of time. But they don’t move them on until they’ve tried their best to goad the family into a DNR order. One even sent the hospital chaplain in with DNR papers to try to force their will on my friend’s family, via their religion, after the family had made it clear to at least 5 hospital workers that that was NOT what they wanted.

    I’ve watched time after time as friends and family with elderly parents are told by the hospitals that they have no choice. They strong-arm people into sending relatives to homes, when skilled nursing at home would be far less traumatic and much more likely to succeed.

    In my best friend’s case, the hospital even went so far as telling them they would not discharge his father unless they agreed to take him to their nursing home. The first time they agreed. When that nursing home neglected him and caused a situation that put him back in the hospital, in much worse condition, the hospital threatened them repeatedly, insisting they had no choice but to send him back to the same home. They knew better that time and refused, bringing him home instead, where he lived much longer than the life expectancy they’d been repeatedly told.

    It’s not just your imagination… there doesn’t seem to be an end to the deception some hospitals will use these days to get what they want. They don’t seem bothered by the fact that they’re preying on people in their most vulnerable states, and it really ticks me off.

    I want to make sure you know that you DO have options, despite whatever crap the hospital may throw at you. Pray it out, weigh the options, and then do what’s best for your family, for your mother. If that ends up involving a nursing home, then just watch over them like a hawk while she’s there.

    I’ll be keeping your family in prayer, for strength, comfort and healing.

  2. Lynn says:

    So sorry that you and your family are going through this Karen. I have spent the past 6 mos almost full-time in nothing but nursing homes, hospices, hospitals, rehab centers, and their waiting rooms for various reasons, so I completely sympathize with you. There is nothing harder, and it doesn’t help when you are dealing with people whom you have reason to believe do not have your family’s best interests at heart. Thinking of you….

  3. KWombles says:

    ((())) Thinking of you and yours.

  4. I am so, so sorry. This must be so hard. ((hugs)).

  5. Flannery says:

    Despite the emotional trauma you are going through, that was very beautifully written. I was very touched by your words. It’s a terrible thing to go through, especially when you already have your hands full with the challenges our children give us. Sending you warm wishes, peaceful thoughts, and calm strength.

  6. Julie says:

    Your entire family is in my prayers.

  7. Lizbeth says:

    Karen—I’m thinking of you and your family. Nothing can prepare you for the bluntness of reality and sometimes the harshness of those delivering it. Its ironic that you’ve been advocating for your son and now you have to start advocating for your mother. Know you do have a choice and ultimately you have the final say as to what happens with your mom’s care upon discharge. Be strong, be firm and work with the physicians to get what you think is best for her.
    Thinking of you–L

  8. This is so hard and painful for you all. I’m angered by how “the system” treats our elderly patients too. It is never okay to give up on humanity and compassion when somebody is suffering, or dependent on care.
    You are amazing, and resilient, and your beautiful boy gets that from you too. Hoping you get to feel that warm sun soon. ((Hugs)).

  9. Karen, my heart continues to go out to you and your family. Be strong and we will continue to be strong for you.

    My mom and I often analogize someone sharing their troubles to making soup. Tell us your worries, your troubles, your fears. Unburden yourself. I will put them in my soup pot and stir them around. Their edges will become dull and they will blend together. And then, when we are done, I will pour them out for you.

    I am here for you.

  10. Kelly says:

    Karen, like that sun poking through the dark sky, the love you have for your family shines through your writing. Wishing you strength and peace, surity and hope.

  11. eof737 says:

    Thinking of all of you and sending hugs, healing light and prayers…
    Eliz

  12. I am so incredibly sorry for what you’re going through. The bedside manner of health professionals is so difficult sometimes. I’ve had plenty of experiences where I’ve actually yelled in the middle of grieving at medical professionals for their behavior.

    Look into your sons eyes and get lost in them. Hug him, hold him, cherish him. Life is SO fragile and you’re unfortunately seeing face to face. He’ll be your strength in all of this. Kids always are. Thanks for the comment on my site. You are beautiful.

  13. akbutler says:

    Thinking of you. There is nothing harder than watching your parent struggle. I’ve been there. Sending hugs and hope to you.

  14. Broot says:

    **hugs** health professionals “what!” sheesh. Good thoughts coming your way.

  15. Big Daddy says:

    Hang in there Karen.

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