Making Some TOUGH Decisions...

This week has been like a giant roller-coaster ride.  Wednesday - DAY 1 of Post-op, was a painful day.  Mam-ma's pain was never controlled, even with morphine.  Part of the problem was that the nurses got busy, and through a series of circumstances, she did not get any pain medication from 10:30 a.m. to 4:00 p.m., which caused her pain level to spiral out of control.  Knocking it back down was a daunting task.  She moaned and cried out in pain almost continually - even when she appeared to be dozing.

DAY 2, the pain was not much better, and as Mam-ma began to drink more liquids, I noticed she was not having any output.  I asked about this, and the nurses said, "We changed her at 9:00 a.m."  I asked again.  At 4:00 p.m., I went to the desk and said, "She HAS to be wet... can you please check?"  The nurses came and changed her... and declared her "Just a little damp."  I questioned... how could this be?  She had been drinking... Coke, sweet tea I brought from home, a Miralax "cocktail"... and she had been given TWO doses of Lasix!  No real answer.

When the shift changed at 7:00, I asked the nurses to please check again... surely my grandmother was wet now.  These nurses changed my grandmother, and again she was "barely damp."  However, this time, they noticed that her bladder was distended and tender.  She had told me her "belly" hurt.  The nurses did a scan of some sort that told them Mam-ma had at least 400 cc's of urine in her bladder.  They inserted a catheter, and almost immediately, Mam-ma's pain left, her whole body relaxed, and she has been like a new woman ever since!  Apparently the bladder muscles never woke up after surgery, so her body didn't know to relax and "go!"  I'm still not sure that is corrected completely.

I wish I could say the confusion is clearing.  Mam-ma looked brighter yesterday and has not moaned out in pain since Thursday night - except when they move her in bed or from the bed to a chair.  She still can't tell me my name sometimes - or hers - but she knew my husband yesterday afternoon.  He walked in, and I asked, "Who is this?"  She grinned and said, "GREG!"  Then she knew my cousin Amanda by name.  We thought maybe the anaesthesia was wearing off and she was clearing mentally.

Today, she is back in a fog.  I arrived at 9:00 a.m., and the aides said, "She drank her juice, but she wouldn't eat.  We got a couple of bites down her."  I looked at Mam-ma... she was not wearing her dentures.  I told them, "No wonder she didn't eat... she doesn't have her teeth."  "But she drank her juice!" they countered.  "Yes, but she can't chew without her teeth!"  So I put in her dentures.  The ward clerk retrieved Mam-ma's breakfast tray from the meal tray cart and re-heated her eggs, biscuit and coffee.  Mam-ma ate ALL of her scrambled eggs and half a biscuit with jelly... and she drank half a cup of coffee.  This is the most she has eaten all week. 

I told my husband a couple of days ago, "If I ever have to be hospitalized, PLEASE DON'T LEAVE ME THERE!"  If you or a loved one has to be hospitalized, be sure you have an advocate.  I have left my grandmother for a few hours... and these are good nurses... but I would not leave her there all day unattended - and I am there for both shifts, so all of the nurses know me.  My name and phone numbers are on the white board, along with the reminder that "Polly is DNR."  One nurse told me, "It is so much faster to pick up the phone by her bed and read your numbers off that board than to go search for her chart and look up your contact info."

Yesterday, given the lack of progress and my grandmother's inability to put her feet on the floor and stand, I asked one of the R.N.s (who calls my grandmother "Aunt Polly" and knows her well) what she thought about the possibility of putting Mam-ma in Hospice care.  Her eyes welled with tears, and she said, "I think that's a wonderful idea."  She said that she would call the Hospice coordinator and get the ball rolling.  I know many of the Hospice staff well.  My brother worked with them as an R.N., and then when he was dying in 1998, they cared for him.  They have cared for other family members since then, and the coordinator attends church with my mom.  They all know Mam-ma Polly well...and love her dearly.

The R.N. friend returned to Mam-ma's room soon to tell me that the coordinator was not in agreement - she wanted us to try therapy at the nursing home first.  I could not see the point in putting Mam-ma through the pain of therapy if every doctor and nurse are telling me she probably won't be able to walk again.  She can already sit in a chair - we don't need to go to the nursing home or get therapy for that!  So after I talked with the coordinator myself, she said if Mam-ma's facility physician would agree to Hospice, she would agree.  The facility physician agreed 100%. 

As it stands now, we will move back to my grandmother's apartment on Monday, where she will be placed on Hospice care.  A hospital bed, wheelchair, oxygen and bedside toilet chair have already been placed in her room.  I have paper work to complete on Monday, and the hospitalist heartily agreed to keep Mam-ma in the hospital until Monday.  Everyone tells me, "You are doing the right thing."  Based on this and how doors have continued to open at every turn, I believe this is the right decision.

This morning, the therapist came in and helped set Mam-ma in a chair (with the assistance from an aide), and she mouthed to me, "You are doing the right thing." Her own grandmother is in her late 90s, and I asked, "What if this were your grandmother?"  She answered without hesitation... "Oh, absolutely, I would do the same thing!" 

Mam-ma Polly - November 2009

A few have questioned me, or hung their heads at the mention of Hospice and said, "I'm so sorry."  But I just smile at them.  Today, my grandmother is exactly 6 months from her 100th birthday.  I have two goals for her for the rest of her days on this earth:  1) to be comfortable, and 2) to be happy.  The best shot she has of accomplishing this is to go back to her apartment at Southridge ALF and be among staff who love her and her many friends.  No more sorrow, no more pain.  My sister works the weekend nights at Southridge as a nurses' aide, so she will be there to keep an eye on Mam-ma, adding another layer of comfort for both of us.

Was this an easy decision?  Absolutely not!  I told the Hospice coordinator, "You know that my family is not eager to expedite things for Mam-ma."  She replied, "Of all the people in the world, I know that you are all the last people who would do this!" 

According to http://www.longtermcarelink.net/, "Hospice is a range of health and comfort care services that are delivered to patients who are nearing the end of life. In most cases, these patients have refused or otherwise are ineligible for receiving curative measures such as surgeries or advanced medical treatments. They are expected to live for 6 months or less after their admission to hospice care. The foremost consideration in hospice delivery is providing increased comfort care services."

As a friend who visited Mam-ma yesterday said, "People need to realize that Hospice care is not an immediate death sentence!"  We love my grandmother... this was a hard decision... but I believe it is the best for her. I don't know how long Mam-ma has left, but I want each day to count - and be a good one - as much as possible at this stage.

As I fed Mam-ma this morning, I thought once again of the many times in recent months that I have fed Timothy.  For someone who has never actually been a mother, I have certainly done my share of "mothering" in recent years - at both ends of the spectrum.  At the same time, one of the physical therapists who came in the other day was talking about how so many of their patients trip over small dogs or cats at home and fall.  I told her that my 86-year-old mother-in-law keeps dogs, and we worry about this happening to her.

The therapist said, "So in addition to your grandmother, you check on your mother-in-law?"  I told her yes, and until recently, we were helping to care for our 2-year-old great-nephew.  She replied, "WOW!  Your life is so RICH!  That's wonderful!"  I certainly don't hear that very often!  But she is right!  In so many ways, we are rich - and blessed - to have been given this opportunity... even with its challenges, rough patches, and tough decisions.  With God's grace, we're keeping all the balls in the air and making good choices...and I pray that this continues.