Sunday, January 09, 2011

Eleven Years Today


So, I'm thinking maybe if I write about it, I can put it to rest.  It's going to be long and sad, so you may chose not to read it.  I will post happier tomorrow I promise.

One year exactly before my grandmother died, I had the day off and took a nap while the kids were in school. I dreamed I was about eight years old running through the fog and misty rain to my grandparents house desperate to get to my grandmother.  When I got to the screen door I was an adult 31, thinking I should ring the bell, however, I just opened it an ran in like I would a kid coming home from school.

My grandmother's house was set up that the back door opened to what she called the summer kitchen and that was where the stove with the oven was. Around the corner from the stove was the open doorway to the kitchen.  Across the room from that doorway is the living room. I ran around the corner to the kitchen doorway and saw my grandfather standing in the living room doorway asking me what I wanted.  He had passed on just before Christmas 1992.

Out of breath, quite frantic, I told him, "I have to get to grandma, she needs me. Where is she?"

Very calmly he said, "Why she's right here with me safe.  She's safe, she's with me." He then stepped aside and I saw my grandmother sitting in her rocking chair crocheting.

She said, "I'm all right. I don't need you for anything."  She waved me on, like it's ok, go about your business.

I woke standing in my bedroom doorway staring down the hall, still out of breath. I still remember that dream like I just woke up from it.

Later I called my mother and told her I was worried that grandma wouldn't last the year.  I tried to get Life Alert for her but failed in my attempts. She had been having blackouts, TIA's for awhile. (mini strokes)  In my defense, I had quite a bit on my plate with several side dishes.  The year before I found myself  quite suddenly a single mother.  Three special needs children, two of which were 12 and 14.  Trying years under the best of circumstances.  Then a house fire that we lost 80 percent of our stuff.  No renters insurance as when the payment came due, it was that or groceries.

That July my grandmother was found having been on the floor for three days in the heat with no ac. Her nephew lived next door and told us he checked her paper box every evening to make sure she got her paper. Well, he didn't notice until the papers had built up three of them and were falling out. My mother and I had taken turns every Saturday to take her shopping.  She was found on a Friday.  So that is how she ended up in a nursing home.

On Sunday, January 9, 1999, my alarm clock didn't go off.  Luckily, my pregnant cat didn't let me over sleep too late as she wanted to be fed.  I made a call to the agency letting them know what happened and that I might be late.  I think I might have been 15 minutes late and the supervisors at this particular nursing home were very nice and joked with me about my cat.  This was a new experiment contract I was on, as this nursing home was tired of requesting me only to find out I was booked out 2 months in advance.  They requested my agency for a six week auto-renewing contract and I was the first one on their list. I took the contract just to have regular day shift hours.

Right after lunch, my mother paged me 911.  When I returned the call she said she came home to a message from the nursing home that my grandmother had taken a sudden turn for the worse and they needed her to come down and sign paperwork to put her on hospice care.  Mom asked if I could leave work and meet her there to see what was up.  Luckily, the super nice supervisors let me go.

During my years of working geriatrics, I've seen a lot of things working staff and agency.  I held many hands and sat at many bedsides, watched many of deaths.  I preferred working agency because I didn't have to get caught up in office politics, so to speak. I came in did my job efficiently, professionally and at the end of my shift, I went home. That's how I like to work.  Nothing could have prepared me for what I saw when I arrived that afternoon.

Two weeks before when I brought grandma to my home for Christmas, she was in the advanced stages of dementia.  I don't believe she knew who I was, other than a kind face from her past.  She kept patting my cheek and smiling.  Dinner for the most part she left untouched, but when I brought the fudge out for desert she ate that with much delight.  I thought, she's 88, advanced dementia, to hell with her diabetes for one night. I just made sure to inform the evening nurse to go check her sugar when I brought her back.  The evening nursed laughed and was glad my grandmother enjoyed herself, thanked me for telling her and said she would check her sugar right away.

In those two weeks, I guess they switched her to a different floor.  This floor was between nurse managers, as in nobody was running ship.  Apparently, my grandmother had not eaten or taken fluids since Friday.  Her CNA told me she had reported it to the nurse on duty.  My grandmother had lost quite a bit of weight since Christmas, her face gaunt and her eye were sunken in.  Much like those pictures you see of concentration camp victims.  She had the death rattle, Cheyne Stokes breathing it's called medically.  Many times before I've seen this in many patients.  It's really quite different when it's your own family and you know what's going on.  I gasped and almost burst into tears for a second, then the nurse in me kicked in.  I did a quick exam.

The very second she saw me, I could see the recognition in her eyes.  She became highly agitated and frantic, like she was begging for my help.  All she could say was, "Oooo, oooo, oooo."  Sort of like an owl hooting and I realized she had lost her speech.  All my life, I noticed when my grandmother was upset about something she would thump her right thumb.  Much like finger tapping only with just her thumb.  Depending on how upset she was her thumps would be more purposeful.  She seemed to not be able to move her left arm or leg at all, but her right thumb was thumping on the sheet. I assessed that she probably endured a stroke on Friday and that she wasn't eating or drinking because she might not have been able to swallow.   During this, I attempted to comfort her as best as I could.  Unfortunately, my mother brought my baby sister who is the same age as my daughter, then 15.  They were both traumatized by what they saw, to say the least.

Back in nursing school, I had some of the best instructors.  Often the students from the other group of teachers would come to ours with their questions.  Mrs. W was the best.  She often said common sense was not all that common anymore and to expect idiocy.  Sadly, she was all to correct in her observation.

I stormed down to the front desk, and requested her nurse to speak with the supervisor immediately.  I went back to the room to wait and sadly the floor nurse came in to try to appease me before the supervisor showed up.  Her total incompetence only made things worse.  I have very little patience when I see gross neglect and incompetence.  She informed me and supervisor coming in minutes later confirmed that they had straight cathed my grandmother several times that day because she had no urine output and they couldn't figure out why she had no output on catheterizing her.  (That's putting a tube in the bladder.)

If your still with me, most of my readers I know aren't medical professionals.  If someone were to tell you that this person has not taken fluids since Friday, would you expect  them to have urine output on Sunday?  I hope you said, no.

They said it took the two of them because my grandmother fought them.  I just hope the old lady gave it to them but good.  I probably should be embarrassed by some of the things I said that day, but I'm not.  The supervisor requested the nurse to leave and I began grilling her as to why we were not notified sooner. I really didn't get a good answer and pretty much she kept referring to the fact that they now had my grandmother on comfort care.

I looked around the room and saw the tray table five feet away from the bedside with a Styrofoam cup of water with the previous days date.  How was she supposed to reach that? Also, one of my pet peeves I see all to often in nursing homes, the water out of reach of bed bound patients.  I wanted to clean house.  I wanted to be Jesus in the temple with the fish mongers.  So I asked her just what exactly did they consider to be comfort care, because I wasn't seeing it.

She said they discontinued all her medications and put her on the waiting list for a hospice aide which could take up to a week.  What medications?  Ativan (which is a sedative that would have provided comfort) and her diabetes meds. On comfort care, they discontinued her Ativan which would have provided comfort.  My head nearly exploded.  I did however, verbally explode and started making my demands for comfort medication and cup of water with a toothette to moisten her mouth. The very minimum of comfort that should have already been provided.

That's when the floor nurse came back in with gloves and lubricant stating she needed to do a rectal exam as she just noticed my grandmother hadn't had a bowel movement since Friday.   She went to the bedside and began preparing for this procedure.  Why I didn't just have an apoplectic fit at the moment, I do not know.

"You want to do what? Do you not realize that if a person has not taken any input, food or water for three days, they won't produce any output?"

Right in front of the supervisor, the nurse began to argue with me.  Determined she was in accomplishing her task.  I leaned over my grandmother in protection and told her if she came one step closer she would go out that seventh story window behind her.  I would NOT allow them to engage in torturing my grandmother any further with their stupidity.

"This woman is laying here dying and all you can think to do is shove your hand in rectum to check for fecal matter?"

The supervisor said, "Well, we don't know for sure that she is indeed dying."

"Just look at her.  Or you blind or complete moron?"

The supervisor just stared at me, I stared back and repeated, "Well, which is it? Are you blind or complete moron?"

That's when the supervisor shoved the nurse out the door and she would contact the Dr. for the medications I requested.  Minutes later a CNA came in with the toothettes and linens.  As I washed my grandmothers face, she grabbed my hand and proceeded to suck the water out of the washcloth she was so thirsty.  Thirty minutes later, the supervisor came in with Roxanol that I requested. (Liquid morphine given to patients in the end stages of death.)  I knew that they had to have borrowed if from another patient, which is illegal in New York state, as the pharmacy they used was closed.  I didn't care, I just wanted her comfortable.

My mother wanted to take my sister home and wanted me to ride with her.  Luckily, the evening nurse was someone I had worked with a couple years before at another nursing home.  I knew she was competent and that my grandma would be in good hands.  So we took my sister home, grabbed a quick dinner and went back.  During this time we had been going up and down the elevator to the basement to call family members and keep them updated.  This important for the end.

While we were away, her regular CNA had washed her and changed her gown.  We sat there talking quietly while Grandma seemed to be resting comfortably.  She was much more relaxed when I stroked her face to comfort her.

They, medical professionals, nursing homes will you they don't euthanize people. They do.  Up until that very moment I had never taken part in it.  According the drug information book all nurses must go by, morphine should not be given for breaths under 11 per minute unless otherwise ordered by a Dr.  Who would then write in cases of severe pain medication can be given for breaths 8-11 per minute.  When I gave morphine I always made to sure document the breaths per minute.  If they were under, I would document why I withheld giving it.  It was my license, and I was protecting it.  Most of the nurses I worked with didn't do this. Many supervisors would become shocked and upset when I would inform I was withholding the medicine and why.  They would demand I show them in the book where it was written.

When the nurse came in for my grandmother's third two hour dose, neither of us counted her breaths per minute. She was resting comfortably, in no noticeable pain and to tell you the truth if I had been the nurse and not the family, I would have counted and probably withheld that dose.  However, I made no attempt to stop her.  Really, I didn't know for sure if that would be the dose that would be the final one.  I've watched patients live for three or more days on one breath per minute.

It wasn't until her breathing became more shallow that I began to count. Three breaths per minute. Then one. Finally, two minutes went by and no inhale.  I got up and got the nurse to call the supervisor.  When we came back my mother looked at us and said she thinks she's gone.

I never participated in euthanasia before because I didn't know the patients wishes and I didn't feel it was my right to decide.  My grandmother was my closest and best friend.  We had many conversations about such things. When my grandfather said on his 90th birthday he wanted to life to 100, my grandmother said, "That's all well and good if you're able to take care of yourself, but I'm lying in a nursing home dependent on others send me on."  You can't get much straight forward than that. I can only hope that when my time comes, I have family member willing to put me to rest.

The evening supervisor came up and called the funeral home.  My mom and I just sat there for a bit.  I was trying to time things.  Knowing what was coming, I didn't want my mother to be there and see them put her in a body bag.  We stopped at the nursing desk to let them know we were going down to the basement lounge to call family.

 The elevators had been working perfectly all afternoon and evening until that moment. We got on the elevator, I pushed the button for the basement and the doors started to close.  The doors suddenly bounced back open, like someone was trying to get on at the last minute.  So I pushed the button again.  The doors closed and we went down to the basement.  When we finished making our calls and I pretended to want to a pop out of the vending to stall for more time. Back on the elevator, I pushed number 7 and the doors began to close. Again, they bounced back open like someone getting on at the last minute.  My mom and I looked at each other, and asked if other saw what we thought we saw.  Confirmed, I pushed the button again and we went up.

Good stalling me, when we arrived on the floor the funeral home was just leaving with the gurney and the big velvet blanket covering everything.  We made arrangements to come back later for her personal effects and proceeded to leave.  On the elevator again, I pushed lobby and the doors began to close. Yes, they bounced back open a third time.  My mother and I just stared at each other for a long moment.  My mother then pointed at me and said, "She's going home with you."

Back at home, I had an amaryllis from Wal-mart that had bloomed over Christmas.  On Saturday afternoon, I had noticed a small shoot appearing after it had appeared to go dormant.  That Monday morning, I woke up to a full shoot and bloom.  I like to think it was my grandmother sending me a sign, as we both shared a love of flowers.

They gave me a weeks leave at work, unpaid of course, it's agency.  When I got back to work, the supervisor that day I left and I had a long conversation about what happened.  She was both shocked and appalled and what I described.  She didn't think and hoped that would never happen at the nursing home we were both working at.

Well, if you made this far to the end, well, wow, just wow.  Thank you for reading sticking with me.  I do feel a bit better.  You see right after my grandmother passed everyone around me had a melt down.  They all leaned on me, like I was suddenly crowned the new matriarch of the family instead of my mother, who had her own melt down.  I don't think I ever got the chance to properly grieve.

Tomorrow, cross stitch and wait til you see Herbie.


Anonymous said...

I can't say anything helpful so I'll just offer my love and virtual hugs.

Rudee said...

In my experiences, I routinely withheld opiates when the respiratory system seemed depressed. However, this is not how I treat my hospice patients. I never take vitals in a dying person and only look at what they're showing me when I treat pain and anxiety. If they're grimacing, moaning and or dyspneic, I treat with both an anxiolytic drug and an opiate. This is not euthanasia, it's comfort care for in the end, it's not medication that takes the life of our loved ones, it's they're underlying medical conditions--in your grandmother's case, advanced dementia.

I'm sorry for your loss and sorry for your experiences in the end of life care of your grandmother. When hospice is done correctly, dying can be a peaceful process for the most part. Moreover, I'm sorry that the memories of your grandmother's suffering seem to continue to haunt you.

Vinita said...

I'm sorry for your loss. I don't know what else to say, but I'm sending over good vibes to you to give you the strength to shoulder your family's pain and especially yours.

Julie said...

A very emotional post Denise, i too was very close to my maternal grandmother and still miss her so much. She was the lady who taugh me to knit, stitch and sew, she passed away Christmas Day 16 years ago.