live your life, that you will regret nothing.

She is no longer here but I have her memory to hold on to.

The words sound so absolutely lovely. Endearing. In greeting cards, said by other people "In our memories, she lives on". Tear, weep, sob, sniff, tissue.
The problem that I have is that my memory of her is not the same as everyone else's. I see her screaming and flailing in bed. I hear her moans and her cries. I live with the last face I saw, one gaunt from dehydration, wincing in pain, and distraught from not being able to communicate anything; her world dark and disturbed, unable to see clearly or hear more than the muffles of too many background sounds making audible soup. The smell of death in my nose and on my skin for having spent over 30 hours at her bedside during the course of her last 3 days.

"Where are her sons? She has two, right? Where are they?"

My last week with her was the worst. Obviously. She was dying. Everyday, it was as though she fell off a cliff, into a new level of pain, discomfort and expiration. Monday she was eating. Tuesday, drinking. By Wednesday, nothing.
Well. That was the case once I intervened. We'll back up.

Prior to Wednesday, my visitation consisted of a 3 hour block around lunchtime. At first it was to delight her palette with the fanciful wants someone who knows the end is near desires. Lobster. Popsicles. Ice Cream. Salty french fries. We would joke at the nursing facilities version of food and enjoy imbibing together. A particular favorite of mine to pick up was sushi - not for her but because she enjoyed watching me eat with chopsticks. It amused her that I could use them skillfully and she was fascinated by this disgusting brand of rice wrapped fish.
"Eel, Julieann?"
"You going to try some today, it's super yummy, come on, try the eel."
"Bleck," she made a face to mock throw up.
And then she would giggle as I consumed yet another roll, "You are so good at that."
I had fought the week before to get her onto Hospice Crisis Care, a 24 hour bedside assistant assigned to help her with anything she needed, especially when no family members were around. By this time I felt it was a requirement, as she had no longer been getting out of bed to walk, sit in the wheelchair for strolls, or even use the bathroom. Her reach was limited and if there were not ice chips by her side table, or food placed properly for breakfast, I am not really sure of what she could have done except yell for help. Which she did on several occasions with no response. In a nursing facility, she is not the only patient with needs. Take a number, wait your turn. Combined with the increased pain in her stomach and the definition provided to me by Hospice, I stomped my foot, they stamped the paperwork and off we go.
I hadn't even wanted a full time person there, just one present during the hours when my sister and I were unable to visit, in the morning, before I arrived. After that it was smooth sailing, my visit around noon carried into my sisters visit during dinner. Nighttime, I felt was taken care of by the Ambien, which was another battle all its own, oh lawd call me Sheena for the dragons I slayed. How it is a bad thing for a dying cancer patient to be sleepy is beyond me. I will never ever understand this fucking logic no matter how many times it is explained to me.
They put her on Crisis Care for 24 hours, reevaluation taking place daily, to assess the continued need for such a status and for the staffed person bedside. Since she had been qualified under the term "pain" she was reassessed daily under this term as well. The problem being here is that she doesn't tell people she is in pain until it registers 9.6 on the Richter scale. So everyday, aides asked the question and every day, she denied the need. "I am fine, you can go," she would say, translates to "I can face this on my own, why don't you go bother someone else and take care of those in real need". A proud independent woman, stubborn as the day she was born, insistent to the end she could do it all by herself.
As she was in good health from the vast amount of exercise received prior to hospitalization, mixed with an active response to stimuli, it wasn't long before Nurse X deemed her fit for removal based upon the following things:
1. Good blood pressure reading.
2. Consummation of food and fluids.
3. Ability to stand with assistance.
I know this only because after I hip tossed a Hospice Aide into the hallway, I took her file, copied every piece of paper in it, and read that evening through every report written, to include the one about my grandmother being forcefed on three occasions, to include the one I was privy to. Which brings us back to Wednesday and why I will either: commit suicide before ever being admitted to a facility or crawl in a cave to die alone when no one is looking.
Never. Ever. Go to a hospital or a nursing home to die and make damn sure you have a competent advocate on your side with Power of Attorney and a will to make sure your wishes are carried out, dot your i's cross your t's.

"Where are her sons? She has two, right? Where are they?"

So we are back, to Wednesday.
I got the call in the morning that they were removing her from 24 hr Crisis care. After the update my sister gave me the night before, relayed through the nurse, of my grandmother flailing and fighting having been given a suppository. In this case, not every one shits. She was bucking so much in bed (remember, one week bed ridden at this point, feet swelling, mottled blood from poor circulation that system shutting itself down quickly) she was in danger of being on the floor possibly with a broken bone upon impact the aide relayed through words. They didn't believe in bed rails here. Confusion as to this conclusion one head Nurse X came to, I rushed down to the facility to not only see my grandmother for our normally scheduled visit but to advocate once again on her behalf. You see, unless she has her hearing aides in, she nods yes to almost everything. Yes, shut up. Yes, stop talking. Yes, get out of my face. Yes, I have no idea what you are saying but please find a way to bust me out of here.
When I walked into the room, she was alone. I didn't question but sat down to say hello. She was in and out of sleep. I let her know I was there and food had been delivered, did she feel like eating.
15 minutes later the Hospice aide comes in apologizing for having been on her break. She sees the tray of food and loudly begins to yell at my grandmother, that it is time for lunch. She grabs the bed adjustment controls, sits it full tilt up (my grandmothers preggo belly full of liquid, hurts with even the slightest elevation) and then starts chopping up ham, ignoring the moans and waving arms. And the no's. Also, did I mention, this was done from a dead sleep?
She began to approach my grandmother with a spoonful of chopped ham, even though she hadn't eaten anything remotely solid in days, probably more than a week.
I came to. "What the fuck are you doing?!"
She explained she had fed her this morning and the morning before just fine, she was even able to get her out of bed.
"You did WHAT?! She hasn't been out of bed for over a week and you got her out for what?! Just to see if she could use the toilet? Did you bother to look at her feet?! Do you not see the diapers? Do you not see the wipes because I see them, I see them plain as fucking day!"
This aides assessment the only positive one in the file, everyone else reporting a refusal of food and water, down to the only intake accepted - ice chips.
And that is how it begun.
Phone calls ensued, me to my sister, my sister to Hospice, me to her sons, me to Hospice demanding that she be seen again and evaluated while I was in the room. Amazingly, no one called me. They called her son in Boston, who had been gone since Sunday, the nurses justification explained to him; he relaying to me nothing more than, they are taking her off the 24 hr crisis watch.
Fuck that, fuck everyone. My sister called after-hours and rose all hell for another reevaluation; the new nurse taking one look at her condition and asking me "Why did they take her off?" A question to this day, I have still not gotten a logical answer to. I did not leave her side again, until I met the new shift nurses, aides and anyone else who would be touching her at any point in the night. I instructed them all. She gets this pain medication at this time, she needs this dosage at this time, dont touch her, dont roll her, dont dont dont dont dont fucking fuck with my frail grandmother you paperwork pushing, by the book, she must be woken up at midnight for a bath, fucks. I slept little, back before the sun was up to meet the new staff shift, make demands, instruct and ensure no one would hurt her ever again.
I was there until 10pm that night.

"Where are her sons? She has two, right? Where are they?"

Thursday presented a whole new set of issues and burned into my skull a set of images I am not sure how to get rid of. I was there from 7am to 8pm. Shift to Shift.
Friday, 8am to 4pm, my sister taking over sooner, that day having gone through much worse to stabilize her for the weekend when staffing was at bare minimum and changes to medication much harder to push through. I decided I could no longer stay and needed sleep. I went running down the hall at one point, finding her nurse, but unable to get across what I needed done due to the tears and undecipherable words falling from my lips. Ok. Time for a tiny break. MY sister is here, I can detach and try to store up enough energy for what might come the next time I was there before sun up.
I think she knew. I think she knew my sister left at 8 and that we would be back in the morning. I think she let go, to spare us anymore heartache. At 1:30am, she passed away. Before we could get to the hospital, having been called when she began puking bile from her stomach. She saved this last image from me and I will forever be grateful that when we did arrive, she was cleaned up, quiet, laying still, and most importantly, no longer alive.

"Where are her sons? She has two, right? Where are they?"

She shouted a word in Iranian once the ability to speak English finally left her. I later found out through research the word meant regret. But she did not regret anything. She might have been confused about how so much effort her entire life was put into helping her youngest and his continued inability to straighten his own life out. She might have been confused about how little she felt she heard from her oldest son up north, a subject she repeatedly brought up over the course of hours spent together when she was well. But she did not regret what she had done for them. When she was shouting, it was as though issuing a curse. Momma, she began. Momma regret. You will regret, what you have done to me. You will regret what you have done to your mother.
On countless occasions, with every visitor that arrived, with every new nurse, aide, doctor, always the same question:
"Where are her sons? She has two, right? Where are they?"
Boston and MIA became my standard answer.

This was not my job. This was not my responsibility. This was not my role as her granddaughter. To make these decisions, to be sitting at her bedside nonstop, to be advocating and fighting the system with my hands tied behind my back; while other enjoyed going to shows, going out to see the coast, distance making it tolerable, absence an easy pill to swallow.
But this was my conviction; to do everything in my power to take care of her in these last days, to be sure she was in no pain, to ease her suffering in any way possible.
I shouldn't be the one with the nightmares. I shouldn't be the one who cannot sleep, who tastes and smells death still.
If I knew last week what my journey would entail, what it might leave behind, the way in which it would not only affect but change me, you bet your fucking ass, I would accept the task again.
It might not have been my job, responsibility, or role but somewhere, somehow, I was the only one who could do it.

I forgive you both for what you have done to her.
I forgive you both for what you have done to me.
I hope one day, forgiveness finds you as well.

Grandma, I love you.
After a lifetime of love you gave to me, I fought hard to make your transition peaceful and pain free. I did my best for you, things I did not know I was capable of. I know you love me. And I know if you were here, you would thank me.
Let peace be finally with you, where ever you may or may not be. Let the burdens of a long, hard life, melt from your memory. Let the love we shared radiate through the centuries.
For if I am able, I will find you again.
Always and forever.
Your granddaughter,


  1. Simply breathtaking. ~A.

  2. Oh, Julie. I completely understand. How awful, but at least you know she is now at peace and pain free.

    My parents, to this day I don't know what they were thinking, left me home alone the summer I turned 16, for a week with my delusion, 98 year old great aunt. They had decided to pull her out of a nursing home a couple months before when, through "negligence," she had gotten out of her bed and broken a hip. My father decided to have her stay at home where she would be "better" taken care of, besides, it was explained that she felt guilty spending her $300,000 still left nest egg on a $5000 a month nursing home that had round the clock care, grand pianos, and a plush atmosphere.

    She took up residence in a drafty, back bedroom in our cluttered house that did not accommodate her walker. It went well for a couple of months. My mother became her main caregiver, but she remained 90 percent of the time in her room.

    Then summer came. During that week I was left to care for her, she stopped eating, drinking. She wandered at nights and fell so many times that unbeknown to me, she re-broke her hip. I tried to catch her before she left by sleeping close by to her room, but several times I heard her screams at 3 AM and she was writhing on the floor in the kitchen.

    At 16, I was trying to change this poor woman's diaper that I grew up seeing as a grandparent closer to me than my maternal grandmother. She seemed more lucid and aware at these times and the horrific diarrhea she was experiencing left her without dignity. At 16, the roles were so extremely shifted and I felt the pleading and indignity and embarrassment in her eyes and was helpless to respond. I broke eye contact. I lifted her legs like a baby, oblivious to her broken hip, and only knew there was something very wrong with her incoherent moans.

    My older siblings had moved out and pretty much were uninterested in helping. My parents and younger siblings were incommunicado on a family vacation. My Dad is a paranoid type that will avoid hospitals at all costs, sure insurance would fail and we'd be left with insurmountable debt. On their last visit her, it was I who insisted my elderly mother go the ER for a bad kidney infection that left her incontinent, vomiting, and bedridden the entire visit. He tried to insist she was fine and it could wait. I dealt with the insurance and paperwork and his ire with the Er docs' questions.


  3. So back to that summer, but only a teenager beholden to his temper and under his control, I was faced with physical fear of his Irish anger,but still I searched everywhere for some medical card, called an older sister in her early twenties who shrugged and left it up to me, got her in my car with excruciating pain, and drove her to the ER.

    At the ER, a medical assistant and a nurse yelled at me for bringing her in the car as it became too very obvious the pain it took to extricate her out. They shouted at me that I should have called an ambulance. Did they not realize I was 16 and should have been worrying about boys rather than fearing the wrath of my Dad by daring to call a wasteful ambulance for my dying aunt?

    They took her medical card, but there were pages and pages of forms to fill out that I was too ill-informed to complete. She was so dehydrated, they couldn't find a vein anywhere to insert an IV, but her neck. They needed consent. She never had children, living next to my grandparents for 50 years, pseudo-adopting,and caring for her brother's children instead. Her husband died 10 years before. Her nephew was all she had.

    Where was my Dad, her nephew? Incommunicado. What were her wishes? I didn't know. Medical directive? I looked helpess, pleadingly at them. Did I realize her hip was broken? They treated me like I was useless and I was pushed to the side. As an adult, I understand their frustrations. I could not get in touch with my Dad. No message machine. No cell phones.

    With a lump in my throat and after 8 hours in the ER in which I remained useless and in tears, I left the hospital. I hoped I had done the right thing. I left her alone, with no family member and no advocate. The guilt was all consuming and to this day, still is.

    She never left the hospital. She never regained consciousness. My parents came home three days later. Three weeks later, she died. My parents never addressed what happened. Never said they would have made different choices. Never said sorry. No one in the family visited her--what use would it be with her unconscious. Never had a funeral. And I have never released the guilt of what happened to her when she was in my care.

    My adult mind says I was ill-equipped to deal with the situation. Reading your post, I realize it is a challenge for adult to deal with such a situation. But the 16 year old in me indicts myself on how much physical pain I caused, how inept I was, and how I was not there with her to the end.

    No closure. I regret.

    Your experience sounds horrific, but Julie, you were there for her to the end. You know in your mind, you honored her by fighting for her. I hope beyond hope she realized how hard that was and loved you for it. Regret? Perhaps for her sons, but she was very fortunate to have had such capable granddaughters. No regret there.

    Sorry for the long comment, but I've found blogging through the years has become my therapy and this post struck a nerve. Thank you and I am so sorry for your loss.


  4. Let it go, Heather. You have to say goodbye to it, you did all that you could reasonably do and even more than that. At 16 you should have never been put into that position, your mind cannot handle nor is it skilled enough to react to that sort of thing like an adult would.
    Major parent fail. Major.

    I don't regret anything but I am having a hard time releasing my anger. But eventually that will go too I suppose - time a wonderful thing. Thank you for your story though heart wrenching. Peace to you.

  5. Dear Julieann and Heather,

    I am speechless and saddened and grateful to you both.

    Thank you for reaffirming my commitment to care for my mother in law. Two of her sons are mia, living their own lives, while she slowly deteriorates - but we're here, sharing her life and bringing her joy while we still can.

    I wish I had the words to comment, but I've been there in one form or another and your posts are relevant to many.

    take care and sleep well...you earned your peace.

  6. My grandmother died in palliative care in '09. I am so grateful that the care she had there was mostly, exceptional. It may have had something to do with the fact that she was dying of cancer and it was a private hospital. Maybe.

    I am so sorry. Nothing makes it easier, not at this point. They tell me time helps, but 14 months on I'm not seeing any of that yet.

  7. I really don't know what to say. Not only did I read the post but also the comments, everything was heart wrenching and overwhelmingly touching at the same time. I'm sure your grandmother is at peace. Bless your heart for being such a wonderful granddaughter.

    Heather - perhaps you should have a small memorial in honor of your aunt? That might help you release some of the guilt you carry.