Friday, January 24, 2014

part seven

you can read the first six parts here.

i know it's been a long time since i wrote about my mom.  i don't know why.  after i posted part six, my cousin (the one whose mother was mentioned in that post) left a lengthy comment about what i wrote.  of course, she only knew her mother's side of the story.  and i only know my mother's side of the story.  i've seen the emails, i spoke to my mother about it.  i can only write my truth.  and i responded to her comment on my blog with that basic sentiment - i can only write my truth.  after a day, i decided to delete both her comment and my reply to it because this is my damn blog.  this is my place to say what i want - to speak my truth - and i'll be damned if i let someone else tell me what i can and cannot say here.  

i'm sorry that what i wrote upset her.  through everything between her mother and me/my brother, my cousin was supportive and caring toward me.  we didn't discuss much about our mothers, but we still had a relationship.  after that blog post, we no longer do.  and that was why i waited so long to post that part.  i knew that she would read it - i knew that there was a huge possibility that the aunt in question might read it - and i knew that i would have to deal with fallout.  so along with losing my mother, i lost an aunt and cousin during this process.  all part of life, i suppose.  but that doesn't make it any awesomer - it just makes it 'life'.  

i woke up black friday at my in-law's house, sleeping on a fancy air mattress and entangled with awesome husband.  we had another long day at the hospital because mom was to be moved from icu to the palliative care unit.  this was in the regular hospital and had a much different ebb and flow than the icu.  i had already proven myself to the nurses in icu, and they were already used to me sitting by mom's bedside all day long.  now i had new nurses to deal with.

and it did not go well.

mom was very sleepy at this point.  she would wake up if we prodded enough, but she spent most of her time resting with her eyes closed.  i asked her if she wanted water or broth or anything from time to time; the answer was generally no.  awesome husband and i were at the hospital early, wanting to be there a soon as she was moved.  we went up to the palliative care unit, where she was in a double room - i don't recall if the other bed was occupied.  i was faced with a new set of nurses that i had no existing relationship with and i was not happy from the get go.  for those not familiar with palliative care, it's about just treating symptoms and keeping someone comfortable.  palliative treatment does not cure anything.  my brother, husband, and i had decided the day before not to feed my mother any longer.  we knew it was a matter of days, and we were waiting to hear from the hospice.  we offered her water, which she sometimes sipped at.

icu nurses are different.  i don't know how to explain it.  my mom was in icu for a few days; my father's been in icu a few times as well as the 'regular' part of the hospital.  icu nurses move faster and seem to smile more.  everyone knows how shit's serious in the icu; these nurses seem to exude a ridiculous level of confidence and compassion while not taking any bullshit.  i don't have nurses in the family, i don't really know what the difference is between nurses.  but i've always felt a much different vibe from nurses in the icu than anywhere else.  when i've had a parent in the icu, as long as i stayed out of the nurse's way and made myself useful, visiting hours didn't matter.

i've had nurses in the regular hospital units try to shuffle me off at the end of visiting hours.  i've usually not listened to them.  i'll apologize to nurses now for ignoring them.  i stay out of their way and make myself useful by getting broth or water, or helping my mom with her bedpan (i think that's what endeared me to the icu nurses, tbh).

so.  we get to this palliative level.  at first there was a male nurse that seemed okay.  he told me when my mom had been moved, that she hadn't really woken up or responded when breakfast came.  WELL.  then this other nurse came up at me, and this chick rubbed me wrong from the get go.  i felt like she was rough with my mom and i didn't like it.  mom was moving her mouth and i thought she might be thirsty, so i was kind of bugging her to see if she wanted some water.  this nurse walks around me and sits next to the bed, opens this applesauce, puts it on a spoon, and PUTS THE FUCKING SPOON IN MY MOTHER'S MOUTH, telling me something along the lines of 'this is how you have to feed her, you have to put it in her mouth for her and then she'll know to eat it'.

this was probably the single most upsetting and angering thing that has ever happened to me in a hospital.

we weren't force feeding my mother.  we weren't trying to get her to eat.  we were trying to keep her comfortable.  she was practically comatose.  and this bitch was force feeding my mother.  for one of the very, very few times in my life, i was speechless.  i didn't know what to do.  i think i may have started crying.

friday night, all of my mother's family came.  her brother and his wife, her sister and her husband, and at least three of my cousins (i think all four may have shown, but i can't remember for sure...).  this was the first time we were all together since i told them she was dying, that there was nothing we could do.  this was the first visit during mom's 'end of life' phase.  i remember one of my cousins really helping me feel better: she's a social worker and works with end of life cancer patients.  i always wondered how she did that; it must be so sad, everyone dying.  but talking with her, i realized it wasn't all sad - it was an opportunity to support a family and help them be strong.

black friday night.  everything was happening so fast, and each day passed so slow.  i don't think mom had opened her eyes in two days at this point.  but it was the last night we spent at the hospital.

saturday i got to the hospital fairly early and parked next to mom.  there was a nurse on this unit who had been talking to use about hospice inn, this wonderful unit on the grounds of a nursing home/assisted living compound.  there were like 15 beds for end of life care.  because we had *just* filled out my mom's medicaid application, she technically had no insurance or anything.  this woman, this liaison, had been working on getting my mom accepted as a charity case.  this woman, i think her name was marianne, along with the social worker named sharon and a medicaid liaison named ken, helped make everything so easy.  sharon helped us fill out healthcare proxys and taught us about the law, ken helped me fill out medicaid applications and told me exactly what we needed to gather for mom's medicaid application, and marianne helped pull whatever strings there were to get my mother a bed at hospice inn on saturday.  when the ambulance company said they wouldn't transport my mom without payment ($600+ of payment), she worked something out between ambulance companies and the hospital and i don't know who else and got it done.

i think it was early saturday afternoon when we followed the ambulance to hospice inn.  it was amazing.  she had her own room with a large hospital bed.  there was a little radio with a cd player, a television with a dvd player, and a comfy reclining chair.  there was even a cot that i could use if i wanted to sleep in the room with her.  there were extra pillows and blankets.  she had her own bathroom in the room (not that she'd use it, but we could - even the shower).  there was a kitchen area where they had coffee, tea, and hot chocolate.  the fridge was stocked with things for us and the patients, and some people brought in their own stuff and labeled it.  apple juice, little ginger ales, water and milk.  and we were told we could have any of it if we wanted.  every day, someone brought in cookies or coffee cake or some kind of sweet treat.  there was a common room with a computer that had internet access, a big screen tv with a video game system, board games, and books.  they had a prayer room and a masseuse came in a couple of times a week to give the family members - the caregiver - neck and shoulder massages.  at the other end of the unit was like a solarium.  it was all windows with cushioned wicker furniture.  the doors closed and it was big enough for an entire family (we once went to sit out there and saw just that - an entire family eating a take out dinner together.  we went to sit somewhere else.) and it was always so warm in there.

it was november 27, 2010.  my mom had reached the place she would spend the rest of her life.  and it was a beautiful, wonderful, caring, supportive place.  i could cry and the nurses would know.  the had social workers to help.  bereavement counselors called me to check in for almost two years after my mom's death.

in lieu of flowers, we had asked people to donate to hospice inn.  they did all this for my mother and did not charge us a penny.  they accepted her as a charity case and made the last week of her life comfortable and dignified, and gave us - her family - a supportive, loving place to be with her.

i was thrilled to see how many people donated to hospice inn in my mother's name.  if you want to learn more about the place that took care of all of us when we needed it most, click here to learn about hospice inn.

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