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With Dad in the ER

He is on the hospital bed. The nurses have dimmed the lights. It must be night…We arrived hours ago. He was stashed in a booth. The ER is crowded on this summer Monday. A nurse comes with questions. Then leaves. Then a doctor. He leaves. Time passes…

My brother, David, stands and I sit. We listen to Dad, almost accustomed to his aphasic communication. He is starting to wind down. He must be hungry as it is well past 5pm when he usually eats. It is also well past 4pm when he is due the anti-anxiety and anti-psychotic meds that have kept his rocketing post-stroke emotions mostly level. I go on a food hunt and scare up a plastic container with a turkey sandwich, a dish of pears, and a packet of Lorna Doone cookies. He wants ‘coffee coffee coffee coffee coffee’–he says it just like that, like a little machine gun. David goes in search of this. Dad eats. He is so hungry. It has been a grueling day. David returns with the coffee and Dad lets out a long grunt of pleasure. Ah coffee! We all have a moment of happiness…

 

BLOG-quill-penLOGOsmEscape
Earlier today, after breakfast—it seems such a long time ago—Dad escaped from his long corridors at the nursing home and was discovered by alarmed staff sitting quietly outside on a bench under a tree enjoying the summer air. The drama began. Staff sitting with him under the tree. Staff trying unsuccessfully for a long time to coax him back upstairs. Staff finally getting him back inside. Staff sitting guard with him to keep him from escaping again. By the time I arrived at 11 he was haunting the elevator door, ready to bolt.

He and I sat together. David arrived. The administrator and case worker arrived with the solemn news that he will have to leave this nursing facility. They don’t have staff for this. Our hopes for Dad being settled into a supportive place were dashed. Again. The afternoon was a round of calls to to facilities, paperwork, packing his belongings (Where were all his slacks and socks and that little painting of the countryside? He seemed to shed items every time he moved…) while he went through an array of mournful, adamant postures. Lying on the floor. Curling into a ball on the sofa, holding this head in despair.

We finally  heard that his former facility, where he had spent six rehab weeks, would love to have him back and everyone did a victory gig. Disaster averted! David and I packed him into a car and took him for a long drive. Dad was ecstatic as the air tossed his hair and streamed over his cheeks. He exclaimed with joy. He gazed everywhere as if newborn. We arrived at his old facility where everyone recognized one another, a homecoming of odd sorts, and David and I were happy. A good placement for Dad. There was only the distance between the front door and his room to cover. With an elevator. And a locked unit door…

A very unlucky thing happens. An administrator asks us to stop by the front desk. Just a little paper work. Oh no. He has no idea what evil he does. Stopping the momentum just now is the beginning of an unraveling because Dad remembers it all very very well, and No! He won’t go up the elevator. He will NOT!!!! Not to be locked inside away from the summer air, away from the grassy bank, away from a sweet smelling breeze…

An hour and half passes. Dad leads a growing group of therapists and nurses around the parking lot. He won’t go up. David and I do what interventions we know. Finally the administrator says no, they will not cannot devote more to this man. There are limits to every institution. They like docile patients or those in wheelchairs, patients they can control. Dad is too much trouble.

 

BLOG-quill-penLOGOsmAbandoned
David and I are with Dad outside the facility. It is getting late. Dad lies down on the grass. He asks what is wrong with this? And it’s true. There is nothing wrong with a man who has always loved to lie on the grass in summer continuing to do so. Except it is against the rules for him now. He is not free. He is not free.

Clouds gather and sprinkle. He sits up. Now the rain falls. David helps Dad stand. Dad wants to go in, of course, and he’d like some dinner, but we tell him it is too late, they won’t let him. No, Dad says, and he conveys to us that now he will go up to the locked unit. But it is too late. David and I stand with our frightened, confused, tormented, ill father outside in the rain, all his medical records in our hands with no idea what to do next.

 

BLOG-quill-penLOGOsmDecision
At long last the falling rain and gathering evening gloom convince Dad to climb in the car. Off to the ER. Everyone knows my father there. He has been admitted far too often this past month. For pneumonia. For chest colds. For agitated behavior. We request that he be sent to the geriatric psychiatric unit—called the Senior Behavorial Unit—where he’d had a recent stay, since we cannot calm his agitation  either.

David settles himself on the chair by the head of the bed to wait. I sit near bed’s foot. Dad has drifted to sleep. We pull covers over him as he struggles onto his side. They’ve taken blood–I held his hand as he gazed into my eyes with such misery because it hurt and he is so tired of this. I cried. He squeezed my hand as if to say, don’t cry, daughter, and as if to say, thank you for being with me and empathizing with my pain. They’ve taken X-rays. When he came back he reached for my hand again. My heart is aching and aching…Now as Dad sleeps, David and I, in the hush of the night hospital, decide that this is a turning point. We want to stop the blood taking. We want to stop the hospitalization. We want to stop the life sustaining meds. We know and Dad knows he will not get better, there is no hope. Not wanting to die and not wanting to live are two different things. He has entered a slow death. Dad hates this. It is time for us, his children, to help him move with as much comfort as possible to an organic end.

 

 

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    26 Comments
    1. Yes. yes.

      And as your dear father would say “What is wrong with this?” Hard…and sad…but not wrong. May you all find the resources and support you need to midwife him out of this life. And may there be sunshine and green grass whenever possible.

      With love,

      Lesley

      July 4, 2013
      • Thank you, Lesley. And thank you for your beautiful blog about being with your mother through to the end.

        July 5, 2013
    2. Thank you, Lesley. And thank you for your beautiful blog about being with your mother through to the end.

      July 5, 2013
    3. valentina #

      oh Dunya, what a moving , beautiful, heartbreaking piece. I will think of you and your family often.

      July 6, 2013
      • Thank you, Valentina ~

        July 6, 2013
    4. Deborah Rubin #

      I know it’s hard… You are in my thoughts.

      July 7, 2013
    5. Marjie #

      This is so moving and beautiful … There is nothing wrong with lying in grass nor with desiring a peaceful passage for those you love. It is very right. Very.

      July 7, 2013
    6. dear dunya,

      you so convey how the pathos and agony. not wanting to live is not the same thing
      as not wanting to die.
      my heart hurts with yours.

      i send you and your father and your brother my love and compassion,
      lynda

      July 7, 2013
    7. Here, too, you dance life.
      You express with clarity
      this embodied path.

      May you and David
      feel the support of strength prayers
      sent from Atlanta.

      July 7, 2013
    8. Anastasia Blaisdell #

      I feel sad with you….and your father….and I wonder how your mother is these days…I’m sorry…..my heart is with you as much as it can be not being in your shoes. .. My heart feels your pain …
      May the sun shine on your faces and warm your heart, and sweet summer breezes soothe your lungs. In Chinese Medicine sadness is stored in/connected to the Lungs…..
      love, love to you and your family, Dunya….

      July 7, 2013
    9. karleen #

      ah….the dance toward death…..twisting and turning, moving backward instead of forward to its door to the unknown…..I take my Mother to a house of death next Saturday…..a place where they hold old people until they die…..I understand little of this, except that we as a society have no idea how to transition our dying or even accept dying…..may your dad find his blue skies and summer breeze…..I enclose this…..

      On the day I die, when I’m being carried toward the grave
      don’t weep,
      Don’t say “he’s gone! he’s gone!”

      Death has nothing to do with going away.
      The sun sets and the moon sets
      but they’re not gone.

      Death is a coming together.
      The tomb looks like a prison 
      But it’s really release into Union.

      The human seed goes down in the ground
      like a bucket into the well where Joseph is.
      It grows and comes up full of some unimagined beauty.

      Your mouth closes here
      and immediately opens with a shout of joy

      there………

      Rumi, Sufi poet

      By a Sufi, of course, who understands we live to die…….much love to you and your family…..I’ll dance with you in August…..Karleen

      July 7, 2013
      • Receiving this, Karleen…All the way.

        July 7, 2013
    10. Dunya,
      As always my heart is with you and now your family also. I so wish society would look at leaving this plane as something other than negative. To transition with dignity and as much joy as possible. You are doing such a beautiful job even though I am positive it is not at all easy. All the beautiful words written to you from our family of sisters will help you along the way. Much love to you and your family.
      Carly

      July 7, 2013
    11. I truly feel everyone’s kindness and wise words and support. This is quite quite hard. It hurts. And your company helps.

      July 7, 2013
    12. Dearest Dunya, I can only send Love, and Love and more Love; and huge gratitude for all you do.
      Mary

      July 7, 2013
    13. So, so sorry…. I remember your strong, handsome, articulate father on his porch surrounded by beautiful nature. I hold him in this memory and in his new phase, wishing him green dreams and good air, and wishing you all peace.

      July 7, 2013
    14. Ann Miller #

      Oh Dunya, what a hard passage. But none of you are alone.

      July 7, 2013
    15. David Hammond #

      no more needles, no more poking and prodding and x-rays, no more not being able to eat what you want when you want it, no more NO LYING ON THE GRASS RULES. Yes to comfort and ease and peace. Sending you love, — David H.

      July 8, 2013
    16. Shakeel A. Chauhan #

      All is sad & painful, may God give all of you peace & higher understanding.

      Osho have said many great things about death & his vision on it, search it
      on osho.com
      All societies teach to accept the good & reject the bad, failure, poverty, illness, death etc.

      A person should have the right to die too ! we don’t have it yet but we can
      at least think of it.

      My mom remained in bed, her last 6 years of life… until she passed away, few years back.

      I have faced that helplessness, for years along my mom, she & I both knew
      she is going down & will not heal .

      Sometimes she said I had enough of pain & bed soars & wanted to die, with
      the help of poison . And everyone was just not listening & saying that now
      she has lost her mind too.

      The last 5 years were too painful & heart breaking for some, mainly me & mom, my dad & elder sister were fed up of her & she was like already dead & they did not care.

      We need this very important & crucial Right … the right to die, when nothing more is possible, the right for the pain & agony to end !

      By doctor’s help … a high dose of sedatives in the drip, a ceremony where all
      family come to say good bye, just the way its done when some one have passed , just like relatives & friends gather for the burial of the body.

      A good bye ceremony … and a medically assisted painless & peaceful sleep … leading to death.

      I think in almost all religions, only the body dies … and its believed that the spirit Never Dies, it only moves to a divine dimension.

      Many people go in coma or sick & kept alive in hospitals for years, & not given the right to die !

      They should have the choice to die too, its their life, my mom suffered unnecessarily for five years & the whole family too, a lot
      of agony can be eliminated if there had been right to die .

      God help us … Namaste ~

      July 9, 2013
      • Shakeel, very sad and profound…yes a beautiful ceremony for this simple natural inevitable ubiquitous sacred passage…

        July 10, 2013
    17. Dee #

      A song for your Dad:
      Take me back, o hills I love,
      Lift me from this lowly bed,
      Light my way with stars above,
      curl soft winds above my head.
      Light my way with crystal streams,
      cradle my arms in bows of oak,
      breathe a scent of pine for dreams,
      wrap me tight in earthly cloak.
      Blessings to you all

      July 10, 2013
      • Oh Dee, this is so comforting…

        July 10, 2013
    18. Kathy hamilton #

      Oh Dunya Diane. Oh oh oh. Xox

      July 11, 2013
    19. My family had similiar with my Dad…he has been gone almost 2 yrs now. My empathy, light, & love, to you. It ain’t no easy row to hoe. xxx Liesa

      July 15, 2013
      • It is rugged!!! Thanks for your kind wishes.

        July 15, 2013

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