We're the Only "Normal" Ones Here...

Mam-ma Polly and my niece
Jasmine (Timothy's mom)
about 1992 - Mam-ma
would have been 80.

Last week, I went to visit Mam-ma Polly one evening just before 5:00 p.m. She was in the dining hall, dressed in a winter sweater - and pants.  In case the full impact of this statement has eluded you, let me remind you that I removed ALL of my grandmothers pants and pajama pants from her apartment (or so I thought) a few weeks ago.  I couldn't get the aides to stop putting pants on her (I felt dressingand undressing in pants would be cumbersome and painful) so I bought a half dozen house dresses for Mam-ma to wear and brought all the pants home with me.

Somehow, I guess I missed three pair of pants in the laundry.  An aide had reorganized the closet and matched these pants up with what blouses she could find (or in this case, a sweater) and dressed Mam-ma in an "outfit."  I explained that we are not wearing pants.  The aide apologized profusely.  The nurse rolled her eyes and said, "You have signs everywhere that say 'NO PANTS!'"  I assured them both that it was okay, and I gathered up the pants and all of Mam-ma's blouses and sweaters and brought them home.  I told my mom and the rest of the family, "Now all she has is her house dresses, some cardigan sweaters and jackets, and her winter coat.  If you go to visit and Mam-ma is dressed in her coat, you will know why!"  It shouldn't be this difficult!

Mam-ma with Timothy (Jasmine's baby)
Thanksgiving 2010

I did not go to the ALF on Tuesday or Wednesday - I was not feeling well.  However, my mom went on Wednesday, and she thought Mam-ma talked well and was doing okay.  On Thursday, I stopped in to see Mam-ma, and she was in bed. Some former neighbors from my childhood stopped by to say "Hello," and she seemed glad to see them.  That afternoon, my grandmother's three cousins in Oklahoma (who are more like nieces), called to say they wanted to drive over for a visit on Friday.  This is at least a four-hour drive for some of them - and one cousin and her husband were coming from Oklahoma City.  They promised to arrive after lunch and only stay about an hour.  They really wanted to do this, and I told them that I felt Mam-ma is as good as she is going to be - so come on over!

Friday, I went to the ALF about 1:30 p.m. to greet the cousins and make sure Mam-ma was doing okay.  They had just arrived.  I had some questions for the facility owner, so I left them visiting with Mam-ma in her apartment.  I ended up spending quite a while with the facility owner.  She was really pushing for Mam-ma to get physical therapy.  She explained to me how much she and the others love my grandmother - and how inspired and impressed they are by Mam-ma's "oomph" to get up and go.

I thanked the owner for being so caring toward Mam-ma... I truly do appreciate how they adore her and spoil her rotten.  But at the same time, I explained that Mam-ma's "oomph" is innate and belies her cognitive abilities.  She appears to be physically capable, to some degree... but mentally, she does not recognize her limitations.  I explained that rehab to get her walking again could possibly set her up for a bad event.  I believe she would not be able to comprehend her limitations... and she would try to do things she cannot and possibly fall and hurt herself badly.

Additionally, rehab would mean leaving Hospice.  This would be considered a "get-well" measure, and Medicare would not pay for rehab for someone on Hospice.  My grandmother is incontinent, she doesn't eat well, and most days, she is not mentally clear.  I feel she needs to remain under Hospice care.

Once we talked through all of this, the owner agreed that I was probably on the right track.  I agreed to keep an open mind.  Should my grandmother show improvement, I would have no problem removing her from Hospice in favor of rehab.  But we are a long way from this... and honestly, I don't think it will ever happen.

The cousins stayed about 2 hours.  I think they had trouble leaving and probably realized they might not get back to Arkansas to see Mam-ma again.  When I visited Mam-ma on Sunday, she did not even mention the cousins' visit.  She was in the dining hall, and I visited with her there while the aide fed her a roast beef lunch.  We returned to her room, and I showed Mam-ma some sewing projects I had brought.  She seemed to understand that I had made the pillows and dresses, and she fingered each one.

For several weeks, Mam-ma has mentioned one of these cousins named Patsy... to me, her aides, and one of the Hospice nurses. She has said more than once, "I want to call Patsy."  I assured her that I was keeping in touch with Patsy, and we all knew that Mam-ma could not talk on the phone well enough to have a conversation with Patsy... so I would do the communicating.  So when Patsy visited and Mam-ma did not even speak her name afterward, I was even more convinced that therapy is a bad idea.  My husband said, "Your grandmother has not said much in months.  Why would you think she would talk about the cousins coming?"  I agreed, but as I told him, I thought she would at least say, "Patsy," or "the girls came," or something about Oklahoma.  But it's like it never happened.  I do not think she remembers it at all... nor do I think she remembers her neighbors visiting on Thursday.

Yesterday, I visited late in the afternoon, and Mam-ma was asleep.  I rattled my car keys, and she roused.  Instantly, she reached for me and was visibly upset.  She said, "They've confined me to my bed, and I don't know why."  I asked if she had been up, and she said, "No!  They've confined me to this bed!"  The nurse overheard this and said, "She's been up a LOT today - she was up for breakfast and lunch, and they just put her back to bed after lunch."  I also knew that the Hospice aide had been there to bathe her during the morning hours - and the Hospice nurse had made a visit.  Mam-ma was mad.  She insisted "I'm confined to this bed, and they won't tell me why!"  "Confined" was the word she used over and again.

Finally, I rang for Mam-ma's aides and asked them to change her and get her up.  By this time, it was about 4:15 p.m.  I said, "We'll just let her sit in her wheelchair for a while and I will push her out to dinner."  I thought getting her up might prove to her she was not confined.  It didn't.  She sat in her wheelchair and said, "I don't understand why they have confined me to bed."  I told her... "Mam-ma!  You are sitting in your wheelchair.  You are NOT confined.  You can get up any time you want and sit in this chair or your recliner."  She looked at me like I was from Mars, and then she said, "Well, since I've been confined to my bed, I've not been able to get my kidneys to work."  She followed this with, "I've got to go to the bathroom!"

I realized Mam-ma was not mentally on the same planet with me, and I was wasting my breath.  After the aides came once again to change her, I wheeled her to the dining room.  We were very early - it was only about 4:30 p.m.  But drinks were already on the table, and I offered Mam-ma coffee, which she declined.  We sat in total silence.  Mam-ma stared blankly at the table.  A few more people entered the dining room.  In one corner sat a woman and her gentleman companion.  There were a few other ladies sitting at various tables throughout the dining room.

At the table nearest us, a lady sat sorting silverware.  She seemed to be in the throes of dementia as she unrolled the silverware at each place setting and combined them, then rolled them again in a napkin, saying, "It's just one thing after another."  At one point, she looked toward Mam-ma and me and said, "How can you kill someone if he's already dead?"  We did not respond, of course!

Then I heard the lady sitting with her gentleman friend say, "Look! These people are all crazy.  That one is rolling silverware.  That one is doing what she should... so is that one... and that one (gesturing toward me) is just sitting there staring at her mother!  We're the only normal ones here!  I think we should leave!"  It was all I could do to keep a straight face.  My worst "fears" have been confirmed... I am no longer "normal!"  At least it added a little levity to an otherwise depressing visit!

I found out later that when the Hospice nurse had visited yesterday morning, she found Mam-ma curled in a fetal position in her bed, very blank and sad.  Mam-ma cried, and the nurse asked her, "Are you hurting?"  Mam-ma said no, she wasn't hurting.  The nurse asked, "Then what's wrong, Polly?"  Mam-ma replied, "I'm tired."  The nurse was very upset... she loves my grandmother dearly, and as she told me today, "I think she is so tired of this life."  I agree... but we all know we cannot change this.  I'm touched that the nurses care so much.

Today, my mom visited and found Mam-ma a little better.  She was able to visit some - even asked a few questions, like when my niece's next baby is due.  But Mom didn't think she was "great" by any stretch.  And...at one point, she said Mam-ma told her, "I prayed and prayed and prayed that I would never be this way."  We think she meant being incontinent and dependent on others to change her and keep her clean and dry.

On a happier note, we talked to Timothy this week, and he sounded great.  He told us all about swimming and Toy Story 3, and his birthday cake.  He also told each of us that "I love you," and that made our day!  And... I was told by my cousin Natalie that her three-year-old, Owen, wants to wear the "Toy Story" shorts I made him every day - she can't keep them laundered enough for him!  Owen and his 8-year-old sister, Olivia, visited us last Tuesday, and I gave him the shorts.  I also gave Olivia a denim skirt I had made for her.  Sewing for them is great therapy and gives me a reason to smile.

So every day is still different... and Mam-ma's decline continues. I have asked my family and friends to pray for peace for my grandmother. I am trusting God's will and His timing... and I know if Mam-ma is still here, there is a reason. But she is truly miserable... I am convinced of this... and it's heartbreaking. I try to do what I can for her when I visit... and not to think about it too much when I leave. I feel like the best thing I can do for her and everyone else at this point is to try to preserve my own sanity, and - despite the assessment of the other ALF resident - maintain as much "normalcy" as possible!  Wish me luck!

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.