Heaven Is My Home...Mam-ma Polly Got Her Wings!

“Polly” Chandler, passed away Friday, March 8th, 2013, at her residence in Southridge Village Retirement Center, Heber Springs, Arkansas. Born November 5, 1912, in Little Red, Arkansas, as Willie Dove Thrasher, “Polly” was the eighth child of William Floyd and Mary Caroline (Cullum) Thrasher. When Willie Dove was a little girl, a man nick-named her “Polly,” and it stuck.

Polly lived in the area of Hiram and Cooter Neck much of her life. On December 18, 1932, she married Truman Paul Chandler. They were the parents of two sons… a baby who died at birth, and James Paul, who was born in 1936. Trup and Polly worked most of their lives in and around Heber Springs, with brief stints at factories and farms in Indiana and Texas in the 1940s and 1950s. In one of those factories, Polly helped to create munitions for the war. She also worked in a dress shop, a department store, and as a cook for farmhands in Texas.

Polly worked outside the home almost all of her life. Even in “retirement,” she served as a “Foster Grandparent”… first in the elementary school and then at the Community School of Cleburne County. She was a long-time member of the Heber Springs B&PW Club, the Extension Homemakers, and a charter member of the Heber Springs Folklore Society, where she was instrumental in raising the funds to build the facility that sits at the foot of Sugarloaf Mountain. Polly was an extraordinarily good dancer!

Polly served as a chairside dental assistant to Dr. Joe N. Robbins for nearly 20 years. During that time, she was a bus driver for the Heber Springs Schools for approximately eleven years. Dozens of students can recall riding Polly’s bus… especially getting out and walking across the Swinging Bridge in its later years, because she felt it was unsafe for them to ride. She would drive across and meet them on the other end.

Polly was the oldest living member of the First Baptist Church of Heber Springs, having joined the local congregation in 1953. If anything defined Polly Chandler, it was her faith in God, which served her well through many challenges, including the loss of her first baby, a fire that claimed her home and all of its belongings in 1981, the death of Truman in 1984, and the loss of her grandson Tim in 1998, followed by James Paul’s death in 1999. Throughout all of these events and much more, Polly would say, “The LORD will take care of me”… and He did.

Anyone who knew Polly knew that she was an incredible cook, gardener, seamstress, and quilter. Polly was known far and wide for her peanut brittle, homemade rolls, and her sweet potato cobbler. She was recognized in the local paper just a few summers ago for growing incredibly large tomatoes in her backyard plot. At Southridge, she supervised the community garden and maintenance of the hanging baskets and flower beds. Polly made beautiful quilts… all stitched by hand from start to finish. She could arrange flowers on the fly and whip up a feast out of a few “dabs” of leftovers that looked like less than nothing.

Polly loved people and was happiest when surrounded by visitors to her home. Her conversations were peppered with “I tell you what!” , “I started to say…” and “My land a livin’s” galore… plus many other pearls of wisdom… some that cannot be repeated! Her first question to a new neighbor was usually, “Can you stay for dinner?” followed by “Where do you go to church?” Polly lived a rich life of service to God and others, and she will be remembered by many for her beautiful smile and her lovingkindness toward everyone she met.

In addition to her parents and nine siblings, Polly was preceded in death by her husband, Truman, her infant son J.H., her son James Paul, and her grandson, Timothy Paul Chandler. Polly is survived by her former daughter-in-law, Arline (Chandler) Smith and her husband, Lee; grand-daughters and sons… Debbie and Greg Robus, and Suzanne and Mike Linn, all of Heber Springs; her great-grand-daughter, Jasmine Gary and her husband, Jamison; and three great-grand-children… Timothy, Zola , and Nathan Gary, all of Heber Springs. Polly is also survived by her nephew, Ricky Whisnant, and his wife, Lori, of Heber Springs; nieces, Martha (Faulkner) Tucker, of Searcy, Arkansas, and Sue (Barnett) O’Dwyer, of Conway, Arkansas; and Amanda (Whisnant) Holland and her husband, Bradley, of Heber Springs, as well as many other dear relatives and friends.

Visitation will be held on Tuesday, March 12,, 2013 at 1:00 p.m. at the First Baptist Church Heber Springs. Funeral services will follow at 2:00 p.m., with Rev. J.R. DeBusk and Rev. Kathy DeBusk officiating. Pallbearers are Tim O’Dwyer, Kevin O’Dwyer, Chris O’Dwyer, BJ Stracener, Hal Caid, and Bill Baldwin. Honorary pallbearers are the staff at Southridge Village Retirement Center and the Cleburne County Hospice staff, Verlon Abram, J.R. Barnett, Joel Pilkington, and Tom Welborn. The family also wishes to offer special thanks to Dr. David Eades for his loving care of Polly in recent years.

Memorials may be made to the First Baptist Church 201 N. 4th St., Heber Springs, AR 72543, or to Cleburne County Hospice, 2319 Hwy 110 West Ste C, Heber Springs, AR 72543.

They's a Lot Worse Things Than Dyin'...

All of my adult life, I've heard my Mam-ma Polly say this... "They's a lot worse things than dyin'..."  Now, it's her turn.  I had made plans to accomplish two things today... get the laundry done, and visit Mam-ma.  I started laundry, worked at my desk, then did a workout, showered and dressed.  Somewhere around 2:30 p.m., I headed for the Assisted Living Facility.  My mother had visited Mam-ma yesterday and thought she was pretty good... so well, in fact, that she planned to take Timothy and Zola to see her tomorrow.

Today was totally different.  The Hospice aide - and a dear friend of our family - was there bathing Mam-ma.  And the oxygen machine was running... hose strung across the room and into the bathroom.  Shelly (the aide) hollered to me, "She's really wheezing!" I told her she has been wheezing for a couple of weeks.  But Shelly said, "I could hear it when I got here." And I could hear it.  Shelly said, "I am wondering if I should have showered her... she's not doing good."  Mam-ma was shaking... and she had an ashy color.

Shelly got Mam-ma dressed in some sweats and insisted she get into bed.  Mam-ma started to protest... and even had Shelly put her in the wheelchair... but then she thought better of it and agreed she should be in bed.  Shelly stayed while I checked with the facility nurse.  When the Hospice nurse had visited around 1:30 p.m., Mam-ma's pulse ox was 80.  Normal for most of us is somewhere around 95 to 100.  They start to worry at 89-90.  So this was a low reading, hence the oxygen.

Mam-ma was clearly in distress.  She and I had a long talk, as she tried and tried to tell me something, but could get out no more than an "Oh, I want... or "Oh, I'm going..."  I asked her... "are you ready to go home?"  She raised up in bed, looked me squarely in the eye, and adamantly said, "YES!"  I told her it was okay to go... that we were all okay.  Then I began to tell her how my mom had said just this morning that some of her friends had announced to their children that they were no longer to prepare a big Christmas dinner... and that "honor" would have to transfer to the children.  At least one of those children said, "Fine!  We'll eat out!"

I reminded my grandmother of my cousin Carla, who died suddenly about a year and a half ago of a brain aneurysm at age 46.  Her parents went to a franchise restaurant one year for Thanksgiving, and she had a FIT!  I told Mom, I could see Carla's eyes rolling at the very thought that we would not have a home-cooked Christmas dinner.  Then our conversation turned to Christmas dinners... and who all would be sitting at our family's table in Heaven vs. the table here.  I told Mam-ma, "There will be a whole lot more of us there than here... and you should be with them."  She began to cry.  I soothed her and said, "Now, we're not going to cry about this... this is a glorious, wonderful thing, and you deserve to be with... (and I named everyone from her sisters and best friend to my grandfather, dad, brother, cousins and aunts and uncles who have shared our table's bounty - and our lives). 

Mam-ma settled fairly quickly... at least she stopped crying.  My sister and my niece arrived to check on her... and then my mom came.  As each person came, Mam-ma tried desperately to tell them things, clasping their hands, grabbing for their shirt sleeve, or cupping their face in her hand.  The only words I understood beyond the "I wants" and the "I'm going tos" was "Greg" - my husband's name.  Mam-ma has been very worried about my husband and me ever since we moved my niece and her three children home a couple of months ago.  I smiled and said, "Greg is fine.  We are both fine... and we're going to be okay.  You don't worry about us... we are both okay."

A few minutes later, the door opened, and my sweet husband came through.  He walked over and kissed Mam-ma, and she gripped his hand.  He was just what she needed.  The Hospice nurse told me to ask the facility nurse for an anti-anxiety pill for Mam-ma.  One hour later, she was still agitated... the pill had not worked.  The Hospice nurse had arrived to see for herself what was happening, and she ordered a pain pill for Mam-ma.  The facility nurse gave Mam-ma the pain pill, and about a half hour later, she was calm and resting better.

We decided to grab some dinner, and then I would return to the facility.  We were probably gone 45 minutes, and when I got back, aides were changing my grandmother and putting her bedclothes on her.  She was coughing more, and one aide took her vital signs.  The pulse ox was normal, thanks to the oxygen, but she now has a low-grade fever.  The Hospice nurse suspects she has some bronchial "something" going on.  BUT... as soon as Mam-ma was dressed for bed and settled, she drifted off to sleep immediately.  The aide on duty offered to come back after she finished her rounds and sit with Mam-ma until she was sound asleep, if necessary.  I sat with Mam-ma for about an hour, and my mom returned for a few minutes, as well.  Mam-ma never roused. Her brow has been furrowed in a frown all day... a sign that she is not comfortable... but she slept nonetheless.

So I asked the aide to be sure that Mam-ma continued to sleep.  Give her another anti-anxiety pill if she wakes, and don't encourage her to eat.  She refused supper... I'm hoping she will refuse breakfast. She had trouble swallowing water for her pain pill, and I do not want her to choke. I reminded the nurse and aides NOT to insist that she eat... to offer food, and let her decide.  The Hospice nurse, who is also a dear friend, keeps telling me, "You're doing great!  You're saying the right things.  You did well in talking to her.  Let her know it's okay to go."  So we are doing all these things.

This is not easy, by any means.  Mam-ma is right... "they's a lot worse things than dyin'..." and watching her like this is one of them.  While we were eating dinner, I told Greg, "I don't know why dying has to be so hard."  He reminded me that even though Mam-ma is ready to go... she is incredibly tough!  This could take a while.

Tomorrow, the Hospice nurse will consult her doctor and see if anything further can be ordered at this point to keep Mam-ma comfortable.  I'm hopeful.  Tuesday, December 18, will mark 80 years since my grandmother and grandfather married. My Pap-pa has been gone since August of 1984.   I would love nothing more than for the two of them to celebrate this anniversary together... in heaven.  I know I don't get to tell God how to run things... but I do believe He hears requests.  I'm just hoping He honors this one.

I'll Make Do...

My sister and I shared a Thanksgiving lunch with Mam-ma Polly the Tuesday before Thanksgiving. A few days after Thanksgiving, Mam-ma told my mom, "I don't know WHEN I've seen Suzanne (my sister)."  Mom tried to remind her that Suzanne and I ate lunch with her the previous Tuesday.  She argued that Suzanne was not there.  I snapped pictures of my grandmother and my sister... here is one.

A few days later, Mam-ma fussed that I didn't come often or stay long enough... and that "I'm seeing quite a bit of Suzanne."  I reminded her that yes, Suzanne works as an aide at the ALF on weekends, so she is there Friday, Saturday and Sunday nights.  That did not seem to register.

Last Tuesday, I went to visit Mam-ma.  She was in the hallway near the front door.  She said, "I'm lookin'... I'm lookin'..."  I asked who she was looking for, and she replied, "For YOU!"  I asked how she knew I was coming.  She couldn't tell me.

We returned to Mam-ma's room, and nothing was right.  She needed gloves from home.  I opened a dresser drawer and produced half a dozen pair.  I left some gloves and ear muffs on her table... was she wanting to go outside?  She shook her head, "No!"  I commented that it was realy too chilly anyway, but whenever she needed her gloves, they were there.

Mam-ma cried quite a bit, and told me, "I'm so lonesome."  She then told me, "I've tried to explain that I'm working on it... not being lonesome."  I told her being lonely is not something we overcome easily or at the snap of a finger... that I was sorry she is lonely, and I don't know what to do about it.  She replied, "You don't come often enough."  I tried to explain that I have a lot of responsibilities now... new ones with my niece and her husband and three children... my 86-year-old mother-in-law who had a mini-stroke this fall... my husband and my own household to run.  She cried and said, "I don't begrudge you these things.  I'm just lonesome."  It was a really, really bad visit.  Mam-ma spent most of the time I was with her telling me how I don't come often enough or stay long enough.  She was simply miserable.

The next evening, my mother took Timothy to see Mam-ma.  She had been asking for him and his siblings, who have been sick and unable to visit.  Mom said Mam-ma was overwhelmed... and overjoyed to see Timmy.  They didn't stay long, but Mam-ma was beaming.  Mom said, "It meant so much to her."

Friday, my husband and I collected Timmy and his 18-month-old sister, Zola, and brought them to our house for the afternoon.  We played with toys, looked at the Christmas decorations, and watched Frosty the Snowman and other videos.  Late in the afternoon when the temperatures warmed, we took them to a local park to play.  We had not been there long when my phone rang.  It was the nurse from the ALF reporting that Polly was having difficulty breathing.  She and the facility owner (who is an RN) had both listened to her chest and heard a rumble.  Hospice had been contacted, and the nurse said she thought the doctor would be consulted about an antibiotic.  Mam-ma was also retaining fluid... level 3 to 4, the nurse said.  She told me, "We'll see if the doctor wants to send her to the hospital for that."

I questioned the antibiotics for someone on Hospice and told the nurse we had agreed NOT to send Mam-ma back to the hospital.  She assured me that I did not need to come to the ALF...that she had given Mam-ma an Ativan to calm her, and everything was fine.  A few minutes later, the Hospice nurse called to tell me that the doctor had ordered a seven-day round of antibiotics, cough syrup, and a steroid shot.  Again, I questioned this, and the nurse said even if the problem was congestive heart failure (CHF) and not something bronchial, the medicine might help with her cough - and in that regard, keep her comfortable.  She also told me it would be fully understandable if I refused further medication.

So I visited on Saturday.  The nurse and I talked, and we both agreed that Mam-ma is - as she put it - "ready to go Home."  Mam-ma was coughing terribly, and wheezing audibly.  She complained that her pants were too tight, so I helped her change them.  These were also too tight.  I surmised she was retaining fluid in her mid-section.  An aide came in with a basket of freshly cleaned laundry, and I grabbed a stretchy sweatsuit.  The aide changed Mam-ma into the suit, and as I put her shoes back on her, I said, "I think I may need to buy you some more sweats."  She shook her head, "No!" and started to cry.

I questioned... what was wrong?  She cried more.  I finally asked, "Do you not think you will be here to wear the sweats?"  She stopped crying and took my hands and said, "I'll make do."  I took that as her way of saying she was done, and I nodded in agreement. I stayed a while longer and got Mam-ma settled for lunch, with the understanding that she would nap in the afternoon.  She had worn herself out changing clothes and coughing... and in fact, she coughed so hard at the dining table I thought she might trigger a heart attack.  The nurse had insisted that this is CHF... and if she does have something bronchial, she indeed does have CHF as well.

I struggled with this all weekend.  Mam-ma is like a doll that falls over, and we prop her back up with medication for a while.  She doesn't want to be here any longer.  We are not honoring her wishes.  So this morning, I spoke with our Hospice nurse/caseworker, and then I called the ALF administrator and told her that this will be my grandmother's last round of antibiotics.  She has indicated that she does not want further treatment, and I am representing her wishes... serving as her advocate and speaking for her, because she can no longer speak for herself.  I will sign a "compliance" paper that says that this is what we desire on my grandmother's behalf.

Late this morning, my mother visited again and found Mam-ma doing well.  Mom said her conversation was fairly pleasant, although Mam-ma cried about a few things.  She coughed some, but Mom did not think it was all that bad.  However, my sister attended an inservice this afternoon, and the administrator told her that I had requested that no more antibiotics be administered, and she advised... "She won't last much longer."  She went on to say that Mam-ma had a serious coughing spell this morning in the lobby, and a staff member had to dash to get a drink of water for her to get it stopped.

My sister also told me that Mam-ma has suffered from diarrhea since sometime Saturday.  We agreed that we are not ready to say "Good-bye" to Mam-ma... yet we know she is ready to go to heaven.  It's been a really rough week.  I have struggled with these decisions, knowing fully that my grandmother is tired of living.  I know that we could go to her apartment and ask her point blank, "Do you want to keep taking medicine?" and she might say "Yes"... then turn right around and say "No."  Her answers are no longer dependable... but her demeanor is.  And I am ready for her to be at peace.

My mom said that when she and Timothy visited a few nights ago, Mam-ma kept looking at him and saying, "I tell you what..."  Finally, Timothy said, "Tell me, Mam-ma!"  When Mam-ma Polly gets to heaven, she will be able to tell everyone what again... and that will be the best medicine ever for her.  Meanwhile, we'll handle whatever lies ahead... and do our best to "make do."

All She Needs is a Tin Cup!

I've done some serious "textile therapy" in the last week, so I have only visited my grandmother a couple of times.  My mom has visited a few times, too - and my sister still works 3 weekend nights - so it's not like Mam-ma has not had visits from her family.  When my mom visits, she often reports that Mam-ma "had trouble holding her eyes open," so Mom ends up pulling up a chair and just sitting at her bedside for a while.  I find it interesting that I can go the very next day - or even the same day - and Mam-ma has no trouble staying awake.  I'm wondering if this "pretending to nap or be sleepy" is for Mom's benefit.  Mom thought that Mam-ma was mad at the world the last time she visited, and this was why she closed her eyes and literally shut everyone out!  We'll probably never know for sure.

I found things pretty well on Sunday when I visited.  I took more sewing to show Mam-ma, though she never even raised up in bed.  She looked it all over - twice - and declared, in a rather long sentence for her... "I said to myself, 'She's a havin' the time of her life with this sewing.'"  I heard this several times over the course of ten or 15 minutes.  My husband and I were attending the funeral visitation for a dear friend that evening, so I didn't stay long.  But I thought all was well... until I talked with my sister on Tuesday.

It seems that Mam-ma continues to holler, though she has not done so while I am there in about two weeks.  But at night and much of the daytime, if she is in her bed or recliner, she is hollering for any and every aide who passes her door.  And my sister said when she is on duty, she will hear "Suzaaaaaaaaaaannnnne!"  Worse still, when the aides to not respond as quickly as Mam-ma thinks they should... she has begun to rattle her bed rails!  I told Suzanne that maybe we should get her a tin cup, like you see the prisoners scrape across the bars of a jail cell in the movies.  She replied, "Don't you dare!"  I would never do this, and it's not funny... but I can just see my grandmother.

So on one hand, we feel like maybe she cannot help the fact that she hollers.  But when you know enough to call the aides by name and rattle your bed rails... it's hard to believe you are clueless.

I am assured that there are others who do this sort of thing... and worse.  But they are not my grandmother.  And they don't have a loved one working there.  It's a dilemma... but my sister insists that she wants Mam-ma kept in this facility - that she is managing just fine.  So we remind Ma-mma often that she must not holler... that it doesn't make the aides come any faster or more frequently to check on her.  And I'm waiting for the day the administrator calls to tell me her bedrails have been removed.

My grandmother has come so far in the last two months... farther than I ever dreamed she would when we left the hospital in early May.  Still, she is declining, in many ways.  I am prepared for the possibility that she might continue to improve enough that she no longer qualifies for Hospice care at this time.  But I feel like the far more likely scenario will be that she falls...develops an infection of some sort... or overheats sitting outside on the porch.  Every day is different.  Meanwhile, we all agree that we should keep objects that can be clanged against the bedrails at a hefty distance.  If Mam-ma figures out how to make noise with one of those, we're sunk!

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!

Waiting for "The Next Big Thing"

I don't have a whole lot to report this week, except to say that my grandmother seems to be in a "holding pattern."  She was doing fairly well when I visited her on Sunday - having lunch at her regular table with her friend, Evelyn.  She could not communicate, and she ate like a bird, but that is nothing new on either front these days.

Monday, my mom visited and found Mam-ma sitting in the dining hall, listening to gospel music by a couple from our community who come regularly to sing for the residents.  Mom said Mam-ma was doing well... singing the hymns along with the others, and apparently pain-free.  She was dressed in one of her new house dresses - a sleeveless number the aide had put on OVER her cardigan sweater!  Mom questioned the aides about how long Mam-ma had been up, and several rushed to her side right away to assure her that they were not letting my grandmother get overly tired... that she wanted to be up and out.

One aide in particular - one of my favorites - told Mom that Mam-ma had insisted on getting up and out one day the week before, and this aide had taken her to the garden to survey the peppers, squash and tomatoes growing there.  She said the planned to take her again that day, but Mom told her she thought Mam-ma had had enough activity.  She had been to breakfast, lunch, and now the singing.

I really don't know if Mam-ma went to the garden or not, but the next morning when I arrived, she had done a total 180-degree turn.  She was curled up in a fetal position in bed, moaning... and both she and her aides told me she had serious diarrhea and had required a shower just to get her cleaned up well.  The aides appeared in Mam-ma's room to tell me about Mam-ma's morning. One of them confessed that he did not know how the sleeveless dress worked - over or under the sweater. I told him under, and he apologized, despite my insistence it was okay. He began to tell me how he worked hard to smooth Mam-ma's frizzy bed-hair before taking her out of the room... and he asked if I would bring some mousse, so that he could do a better job.

I was touched by his care and concern... and later, the nurse told me that this particular aide goes to great lengths to make sure Mam-ma is presentable each day before taking her to meals.The Hospice social worker had requested a visit with me, so when she arrived, we moved outside on the porch to visit.  It was an unseasonably nice summer morning, so we sat in rocking chairs and talked about my grandmother and her care.

The social worker talked to me about moving Mam-ma to a skilled care nursing facility across the street from the ALF.  I quickly said "No!"  This has been the suggestion of several ... and I did back-pedal enough to allow the social worker to outline her reasons for this suggestion. At the forefront was, "I can tell from your conversation - and from what the nurses have told me - that you are frustrated... that you feel some of the ALF staff are not listening to you and your wishes.  You deserve to be heard."  I listened to all she had to say, and then I told her that I felt that a move at this point would be disruptive and upsetting to Mam-ma.

My mom and I had talked on Monday after her visit to the ALF.  Mom said... and I agree... "Your Mam-ma is driving them crazy.  She will not stay in bed or in her room, and they don't know what else to do except get her up and take her out for a while."  My sister confirmed that - at least on weekend nights when she is working - Mam-ma "sits" on her buzzer continually.  The "favorite" aide told Mom that whenever anyone passes Mam-ma's room, she hollers for them.  I have experienced this myself... if Mam-ma senses movement past her open door, she yells, "Hey!" until someone comes to see what she wants.  Often, she can't tell them when they arrive.  I know... it's frustrating for everyone!

So I told the Hospice social worker that I would reserve the option to change my mind, but for now, I am just riding this pony!  I fully expect that there will be a "Next Big Thing"... Mam-ma will try to get out of bed - or stand and fall... she will develop another skin tear, pressure wound, or infection like the UTI... or her overall decline will catch up with her as she eats less and less and continues to have diarrhea almost daily.  When the "Next Big Thing" happens, we will deal with it.  I know the administrator at the skilled care facility, and if it should become apparent that Mam-ma needs to move, I will

I also told the Hospice social worker that *I* have to own the frustration... that a lot of it is on me.  I have to learn to let some of this go and move forward.  These staff members dearly love my grandmother.  They are doing what they feel is best for her, based on their daily relationship with her, my input, and my grandmother's requests and demands.  I have to trust God to take care of these situations... and to give me the strength and capacity to handle whatever happens next.  After all, something will happen eventually.  My grandmother will not live forever, and something has to facilitate her demise at some point.  And the entire family - and Mam-ma - are all okay with this!

So we agreed to let this go for the moment... to try to relax and take deep breaths... and wait for "The Next Big Thing."  I don't know if Mam-ma overdid it on Monday and the result was her diarrhea and inability to get out of bed the next day - or if it was just "one of those days."  But on Wednesday and every subsequent day this week, she was up, dressed, going to meals, and she appeared to be pain-free.  Maybe the antibiotics and the new time-released medicine are working.  Maybe she just had a string of good days.  Maybe she will actually rally for a few weeks/months - and even try to walk again.  I really cannot say, and it doesn't matter.  We are taking this one day at a time... until the "Next Big Thing."

As part of my attempt to chill out and not over-manage things, I stayed home a couple of days this week and did not visit the ALF.  I sewed... made darling dresses and shorts for some little friends... I worked out, wrote, and read.  My husband and I actually went out of town to attend the wedding of our dear friends' daughter.  And the sky did not fall!  I took the outfits I had made to show Mam-ma one day - and she smiled a GREAT BIG smile and gave me several "I tell you whats!"  A week earlier I had taken sewing, and she looked at it blankly and didn't respond.  So I count this as a good week...and I will take it!

As I have said before, I'm learning to find God's goodness, grace and mercy in the little ordinary things of the day... like time to work out, a few hours to sew or write... and time spent with my husband.  In truth, these are not little ordinary things at all, but rather, wonderful gifts we take for granted.  I know one thing is for certain... in all of this "Sandwich journey," I have received far bigger lessons than anyone... and I'm still learning!

Just How Sick Are You If You're "Sick as HELL"?

This has been yet another interesting week.  Over the weekend, I found Mam-ma Polly dressed once again in pajama pants and her little pink house shoes.  Someone apparently dug them out of my hidey hole in the closet!  Beyond frustrated, I gathered up every single pair of pants and pajama pants and brought them home... along with the pink house shoes.  As I mulled this over, it dawned on me that the facility policy manual states that pajamas and robes are allowed in the dining room for breakfast... but the residents are expected to dress for lunch and dinner.  I fully understand that.

I thought about Mam-ma and her trips to the dining room in her pajamas, covered by a blanket, and I realized that this was not only uncomfortable... it was demeaning.  So Monday morning, I went to Fred's and Wal-Mart and purchased five new house dresses for her.  Since I had removed the pants and pajama bottoms, I labeled her new dresses and grouped them in the closet with matching sweaters and jackets.  I then told the nurse and every aide I saw that I wanted Mam-ma dressed in THESE outfits.  A couple of the aides got pretty excited over the bright colors... and the ease of dressing Mam-ma in something with snaps and zippers.  I showed them where Mam-ma keeps her camisoles in the drawer of her dresser and suggested they put one of those on underneath - for modesty.

Monday was Memorial Day, and James, the maintenance man, grilled burgers and hot dogs for the residents and guests.  So I ate a FEAST with Mam-ma and her friends at her old table.  Over the weekend, I had discovered that the aides were placing Mam-ma at another table in the dining room, so that one aide could help both her and another resident eat at the same time.  This was not great for Mam-ma's socialization, but I realized that she might eat more... and I couldn't count how many people came to the table to speak to her and give her a hug.  So I didn't fuss.  But Monday, we sat with her friends.  And honestly, I realized then that it didn't matter, because Mam-ma only ate because I pretty well fed her... and she did not interact with her friends and me in the least.

Tuesday was not a good day.  Mam-ma became very confused and complained of burning when she urinated... the nurse told me, "I'm pretty sure she has a UTI."  The Hospice nurse came and a urinalysis was done... with positive results.  Mam-ma saw people in the room who were not there, and she was just generally sick all day.  Wednesday, she seemed a little less confused, but I still spent quite a while with her... straightening her room, handling some laundry issues, and consulting with nurses and aides about her care.  She had not gone to the dining room on Tuesday, since she was so sick.  But Wednesday, she told me, "Debbie, I want to go to lunch in the dining room."  So I asked the aides to dress her and take her for lunch, and they did.

My mom visited in the afternoon, and she said she sat by Mam-ma's bed for about 45 minutes and read a book... and Mam-ma slept.  She said occasionally, Mam-ma would wake up a little and say, "I wish I could stay awake."  Once, she raised up and clearly and distinctly spoke a man's name.  Mom said, "Yes, he's the man who wrote 'Singing the Blues,'" to which Mam-ma said, "I don't know."  Now, this man is someone who has been dead since 2004... and my grandmother really did not know him!  Why she spoke his name so clearly is a mystery to us.  Did she see him in the room?  Did someone mention him to her in passing conversation?  We seriously doubt the latter... but we will never know!

Thursday, I did not go to visit Mam-ma, and around 6:30, the phone rang... caller ID showed it was her number.  I answered, and the aide said, "Polly wants to talk to you."  She put Mam-ma on the line, and I asked, "Hi, Mam-ma... what's wrong?"  She said, "Well... I'm sicker than HELL!"  I told her I was sorry, and she said, "I thought I'd drive over, but..." and she trailed off.  Then she started to cry and moan, "Oh... oh... Debbie... well, Sugar, I ..."  Then she said, "Call me sometime."  I told her, "I'll be to see you tomorrow, okay?"  More moaning and crying, and then she mentioned a cousin and a photo.  "Did Carolyn come to see you again?"  "Yes."  "Did she bring a picture and leave it for me?"  "Yes." 

I told Mam-ma SHE might like to have the picture, and Mam-ma said, "No... I want you to get it... I don't want anything to happen to it."  That was her only lucid comment.  Next, she said again, "Call me sometime."  I assured her that I would see her the next day - and that her aides would come soon and give her night-time medicine to help her sleep.  We hung up, and I told Greg, "Mam-ma is sundowning*."

Today, I arrived at the facility a little before 11:00 a.m., and as I entered the building, I heard throat clearing that sounded all too familiar... it was Mam-ma.  I looked around... where on earth could she be?  There she sat, in her wheelchair in the hallway, along with a long line of residents.  It was "rounding" day for the facility doctor... and Mam-ma was in line.  I have no idea how long she had been sitting there, but she was slumped in her wheelchair... her feet dragging the ground.  I went and got a folding chair from her room for myself - and the foot rests for her wheelchair.  I stopped to speak to the duty nurse, who told me that Mam-ma was really sick this morning with diarrhea.
 
I tried to show Mam-ma some sewing I had brought to share with her... she was not interested.  She was tired and weak.  The facility owner (who is also a nurse and was attending the doctor during his rounds today), came out between patients and assessed the group.  I waved to her, and she said, "Polly is next."  Sure enough, we were next in line to see the doctor.  I thought the doctor did a thorough job of examining Mam-ma.  He was gentle and kind and extremely attentive... and also assertive.  He spent a long time on his hands and knees looking at Mam-ma's pressure wound on her heel... even measured it.  The nurse asked if it should be debreded... he emphatically said no... that it should be left alone, and if it needed any treatment in the future, he would handle it personally.

The doctor also explained to me that we can expect more skin breakdown as things progress, along with the possibility of more UTIs and even pneumonia.  Even though an antibiotic was begun earlier in the week for the UTI, he prescribed 10 days of a different antibiotic, based on her lab cultures.  He also changed her to a time-release pain medication that should stay in her system all the time and prevent these hours of pain in between pills that she has experienced.

The attending nurse asked the doctor about getting Polly up and out more... did he want her more mobile?  He said that getting out of bed for a short time would help with pain, skin breakdown, and even possibly the sundowning.  The nurse said, "So we want to get her up 3 times a day - for meals?"  I mentioned that we are getting Mam-ma up for lunch now, and the doctor said, "Lunch is a good start... and then if she builds up to it, she could add breakfast or dinner."  The doctor and nurse finally agreed to write orders to get her up "as tolerated."

I questioned the nurse... "This means meals only... right?  You won't have her out playing BINGO and going to activities, will you?"  She looked at me and said, "Listen, Polly pretty well rules the roost around here, and when she says she wants to do something, she's gonna do it! "  I reminded her that lately, Polly says one thing one minute... and the next minute she is asleep!  Her "yes" is "no" and vice versa.  She replied, "Yes, well, they're all that way."  I reiterated that I did not want Mam-ma to be up and out so much that she is in pain.  The nurse assured me that "We're not going to leave her sitting somewhere slumped over asleep and go off and leave her unattended."   And I don't think they would... intentionally.  But I know how busy the aides are... and things happen... and I'm just looking out for my grandmother.

The doctor kept reiterating that our goal here is to keep Mam-ma comfortable. The nurse also asked about physical therapy.  More to the point, she asked him, "When can Polly start bearing weight on her feet?"  I reminded them that she has not put ANY weight on either foot since she fell... and the doctors in the hospital told me she would most likely never walk again.  The doctor concurred... but he said that some gentle physical therapy could help with stiffness and pain and overall well being.  The nurse said, "I've already talked to PT... she's at the top of my list!"  I later learned that there is a good chance that Medicare will not cover physical therapy, since my grandmother is on Hospice... and the doctor did not mention it in his orders.

The visit concluded, and an aide came to whisk Mam-ma to lunch in the dining room.  I had gotten her a hankie from her room, because she had a runny nose.  When I got to the dining room, I noticed the hankie was covered in something... and it looked gross.

I gave Mam-ma some paper napkins and retrieved the hankie and put it in her dirty laundry pile.  Thank goodness her apartment is only a few steps from the dining room - and nurse's station!

When I got back to Mam-ma, her lunch had arrived... spaghetti, broccoli, and garlic bread.  She was eating the bread while her aide fed another resident.  I noticed something on her dress, and as I looked closer, I realized that Mam-ma had spit up all down the front of her clothing.  I told the duty nurse who was standing nearby, and she immediately flew into gear helping pass out lunch plates so that the aide could help me get Mam-ma to her apartment and get her cleaned up and into fresh clothing.  Two aides actually came to do this, and soon we were back in the dining room, and one of the aides was feeding Mam-ma chicken noodle soup.

I gathered Mam-ma's best blanket/throw to toss into my washing machine, and headed home.  While the blanket was in the clothes dryer, ran errands and bought groceries... and more wipes for Mam-ma.  Then I returned to the facility with the clean blanket and wipes.  Mam-ma was sleeping comfortably in her bed.  She roused enough to say, "I feel a little better."  Some very dear lifelong friends popped in to say "Hello," and Mam-ma tried to talk to them, but every sentence was truncated midway as she drifted back to sleep.

I clasped her hand and wrist as I prepared to leave and told her that my sister would be there soon for her weekend night shift... and that I would see her later. I was struck by how thin and frail Mam-ma has become.  I wonder just how much weight she has lost in the last month.  I spoke with the Hospice nurse later, and she was pleased with the doctor's report.  My mom had visited while I was running errands, and she was pleased with how she found Mam-ma.  In fact, a close friend of Mom's who Mam-ma has not seen in probably a decade was with her, and Mam-ma called the friend by name and even asked her about her own sons.  Mom was amazed at that... and the friend was thrilled.

I told the Hospice nurse this afternoon that sometimes I feel like I've been through a battle by the time I get home from the facility.  For the most part, everyone seems to be on board with keeping Mam-ma comfortable and allowing for moderate activity each day.  But some are still hoping for the "old Polly" to emerge... and I just do not see this happening.  And as I pointed out to the doctor and owner/nurse today... "that's not what she wants at this stage."  I also stressed that I am not wanting to tie my grandmother to her bed... nor am I trying to expedite her passing.  But I know her... I know that she wants every minute she is alive to have quality and be comfortable... and so far, we can't say this is always happening.

Let me hasten to add that I am truly pleased with the ALF where Mam-ma resides.  I couldn't ask for a staff to love her more... and cater to her every whim.  This is not about the ALF.  Just yesterday, Mom lunched with two of her oldest friends who both expressed that "Polly should get to do whatever she wants to do."  The first week Mam-ma was back at the facility after her surgery, the other friend said to Mom, "If Polly wants to go to BINGO and other things, I think she should get to... she should do whatever makes her happy."  The trouble is... Polly doesn't always know what she wants or what makes her happy.  She is not thinking clearly... and her answers are often irrational.  It is up to me as her caregiver to discern what is appropriate... and like any good mother, that sometimes means saying "No!"

Mam-ma is tired.  Tuesday, in the stupor of her UTI, she reached out and took my hand and said, "Oh, Debbie... what would you think about me going home?"  I wasn't sure what she meant by "home," so I said, "Well... Mam-ma... you are home... you've lived in this apartment for over a year now."  She shook her head.  I asked where she thought she was, and she said, "I don't know."  I learned that earlier in the day, she had told the administrator she was afraid.  The administrator had found her clenching the bed rail and looking very frightened.  When she asked, "What are you afraid of, Polly?" Mam-ma replied, "I just don't want to go back to the way things was."  Again, the administrator didn't know if she meant the hospital.  I have had more than one person who knows my grandmother say they feel she was trying to tell me once again she is ready to go HOME to Heaven... and I suspect they may be right.

I know this is a long, and probably dull and uninteresting post for some of you.  But for those of you who find yourselves in a similar situation, it may sound all too familiar.  What is the take-away from this?  For me, it was the visit I had with a dear friend this afternoon.  She and her husband cared for his mother in her last years until she died at the age of 101.  She was by then under the care of Hospice, and her grand-daughter was living with her fulltime.  But my friend said, "Remember... this is not forever - for either of you.  It will end... and you both will get relief."  I know this, but I needed to hear it.  "This, too, shall pass"... literally.

Meanwhile, I will keep doing the only thing I know to do... being a "bulldog advocate" for my grandmother and make sure that her wishes are respected.  In her case, she really isn't too old to rule the roost... and I'm doing my best to see that she gets to do exactly that!


*(Sundowning is also known as late-day confusion, often associated with dementia and/or Alzheimer's.)

When Your "A** Is in a Crack," Does it Help to Say You're Sorry?

Last weekend was rough.  Mam-ma spent much of it curled in a fetal position, gripping her bed rail and groaning with pain.  Friday and Saturday were the worst. She would begin moaning and begging for a pain pill an hour or more before one could be administered... and then it took another hour or more afterward for the pill to take effect.  I asked if anything could be done, and the nurse did try to contact the doctor.  But he was out of town for the weekend and did not answer his cell phone.  I later learned that in these situations, I can call Hospice, and they can help.  However, Sunday was almost totally different.  The pain seemed to be far less substantial, and Mam-ma seemed clearer.  Where she had been virtually unresponsive (except for the groaning) on Friday and Saturday, she was pleasant and clearly more comfortable on Sunday.  Saturday, she flatly refused a bath when the Hospice aide visited.  Sunday, she readily agreed to the same offer from the same aide.  Every day is different.

Monday afternoon when I visited, the aides told me, "She threw a huge FIT this morning... told us that 'I can make my own decisions, and I want out of here.'"  The aides interrupted an administrative staff meeting because the rant was so bad, and the facility administrator, the facility owner, and the nurse agreed to let the aides put Mam-ma in her wheelchair and roll her around - and they even took her outside on the porch for about 10 minutes.  I was not thrilled by this.  It wasn't that this really hurt anything, but Mam-ma is not thinking clearly, and just because she says she can make her own decisions doesn't mean she can.  This weekday nurse was not on duty over the weekend.  She and the weekday aides did not see how Mam-ma writhed in pain.  They did not hear her groaning through the night and begging for more medication.  They were not there when she was virtually unresponsive...and other family members and I were wondering if perhaps this was "the beginning of the end."

To make matters worse, the aides no sooner got Mam-ma back to her room from the wheelchair ride than she developed serious diarrhea... to the extent that she soiled her clothing, the recliner, the floor... everywhere.  The aides cleaned Mam-ma and put her to bed, admonishing me to watch where I sat or stepped ... that "we'll be back to steam clean everything and disinfect."  The Hospice nurse was there, and I noticed that Mam-ma's feet were still dirty, so the nurse put on gloves and got a packet of wipes and cleaned Mam-ma's feet and legs. 

The aides said a "bug" was going around the ALF, but they were also concerned that the wheelchair ride might have contributed to Mam-ma's diarrhea.  I hinted strongly that I would prefer there be no more wheelchair rides!  Before I left, I read a couple of Psalms to Mam-ma.  It occurred to me that she never gets to hear scripture any more... and she has always spent a lot of time reading her Bible.  However, while I read, she closed her eyes and I could not tell if she was even awake.  After I finished, she didn't say a word.

I guess I made more of an impression on Mam-ma about the wheelchair ride than I realized, because Monday evening around 6:00, the phone rang... and Mam-ma's number popped up on my Caller ID.  I answered, and her aide - also named Debbie - said, "Miss Polly wanted me to call you - she wants to talk to you."  Okay... I thought... this should be interesting... and I was right!Mam-ma was actually fairly coherent, and she said, "I'm so sorry."  I asked why she was sorry, and she said, "Well... I really got my ass in a crack."  I asked, "Are you talking about the ride you took in the wheelchair?"  "Yes," she replied.  I told her not to apologize... it's over and done... but I outlined WHY we didn't want her riding in the wheelchair... and reminded her of how sick she had been over the weekend.  "We just don't want you to start hurting like that again... and every time they move you for anything, you seem to have pain."  "Well," she continued, "I'm sorry." 

I went so far as to tell Mam-ma, "You know, we have signed papers saying that we are NOT going back to the hospital!  So if you fall and hurt yourself, you will have to lie in bed in pain, and I won't be able to do anything but watch you hurt."  She said she didn't know that.  Now she does!  Anyway, she ended the conversation by saying, "I needed to apologize.  I'm sorry."  I had to laugh... even in her "in-and-out" condition, she still can do the old "pull-a-stunt-and-be-sorry-later" routine!

Tuesday was uneventful, and I made plans to stay home on Wednesday and sew for Timothy and Zola.  I was trying to get a package ready to mail to them, and I wanted to include some new clothes I was making.  Late in the afternoon, I got a call from the nurse.  She was filing a report that Mam-ma had tried to get up out of her recliner and nearly pulled it over on her.  The nurse said, "This happened while I was at lunch, and the administrator and an aide got Polly up and left me a note about it."  Mam-ma was not hurt.  I asked if she was scared, and the nurse said, "She was more mad and frustrated."  I thanked her for calling me.

By 6:30, a friend of my grandmothers was calling.  "Jerome (another friend who is a resident) told me that Polly wanted to see me," she said, "so I went to her room, and she said, 'Call Debbie.  I've never hurt as bad as I'm hurting now.'"  I told Bessie that I knew about the fall in the afternoon - I had received a call.  I debated whether to go to the ALF, but after finishing dinner and taking a shower, I threw on some clothes and drove down.  It was about 7:30 when I arrived, and Mam-ma was asleep.  I laid my car keys on her little bedside table, and she roused.  I asked, "What are you doing?" and she said, "WELL!  I'm trying to get these bowels to move!"  She said the nurse had given her a dose of Miralax.  She was complaining of pain and discomfort and said, "They won't do anything." However, a few minutes earlier she had been sound asleep!

I asked about the "fall," and she said, "Yes... I thought I could get up."  I told her, "Mam-ma you have not put any weight on either foot since you had surgery almost a month ago.  You are not able to walk!"  She said, "Well... I forgot."  And maybe she did.  However, that raised a huge concern about her getting up out of her chair... or falling out of the wheelchair.  And twice last weekend, the nurse and my sister (who is a weekend nighttime aide there) found Mam-ma in bed with both legs between the bed rails... trying to get out!

Two aides came into the room, and we all reminded Mam-ma that two days earlier she had been sick with diarrhea... and she had eaten very little since then.  She probably did not need to worry about her bowels... and she did not need more Miralax.  I told her I didn't know what else the staff could do for her... that she needed to try to sleep and rest.  The aides assured her that they would return soon with night-time medication and another pain pill.  I left... there was nothing more I could do, and my husband was waiting at home to watch a movie we had rented.

I set in on Thursday to pursue options for keeping Mam-ma safe... and to avoid another fall.  When I arrived, she was sitting in her recliner... and the foot rest was closed.  She could have easily leaned forward and fallen out.  I don't think she had been that way very long, because as I began to question her and the aides, I determined that a Hospice aide had just been there to bathe her.  This aide had not only left the foot rest down... she had also put Mam-ma's little pink house shoes on her feet - leaving the protective "boots" to help prevent pressure wounds in Mam-ma's bed underneath the bed sheet!  The nurse came in and switched the house shoes for the boots... and I hid the house shoes in the closet!

I called the Hospice nurse who is our caseworker and complained to her... and ultimately, I asked that this aide not be assigned to Mam-ma any more.  I hated to do that, but I have to consider Mam-ma's safety and well-being.  The nurse wholeheartedly agreed, and she filed an incident report on my behalf.  The more I have thought about it, the more I am certain this was the right thing to do - for Mam-ma and for other patients who might have similar experiences.  This is not the time to always "play nice."  Too much is at stake!

So after talking with the facility administrator, who in turn consulted the facility owner, I learned that physical restraints are 100% NOT allowed in the assisted living facility.  When my maternal grandmother was in the nursing home, she wore a "vest" that tied her to the wheelchair.  It kept her from falling out - or getting up - until she took her little sewing kit scissors and politely cut the straps! This type of device is not allowed for Mam-ma Polly.  So I asked the administrator... "What do you suggest we do to keep Polly safe?  I've run out of ideas." 

The administrator said that she and the facility owner both felt that Mam-ma is going stir crazy in her room.  "She needs to get out in her wheelchair... maybe sit on the porch outside."  I don't feel comfortable allowing Mam-ma to go outside.  I am afraid that she will be left unattended there, and who knows what might happen.  So I conceded... "Okay... what if we agree to take her to the dining room to her table for LUNCH ONLY.  I know she might be the last one fed... after her friends have eaten and left the table... but at least she can visit with them and have some time out of her room.  Other than that and being up for a bath, she should spend the rest of the day in her bed.  If she absolutely insists, perhaps you can get her up in the recliner for a few minutes... but hopefully the trip out for lunch will be sufficient."  The administrator felt this was a good compromise. 

I am assuming that this started today.  I did not go... I stayed home and cleaned our house.  The Hospice social worker advised me earlier this week that I should not feel as if I have to visit Mam-ma every single day.  "That's why you have us and the facility looking after her," she reminded me.  My mother did stop in this afternoon, and she said Mam-ma could not stay awake to visit with her... and Mam-ma did not know what she ate for lunch.  My guess is that the trip out to the dining room for lunch wore her out, and as I hoped, she napped most of the afternoon.  I am hoping that the daily bath and lunch trip will be enough to satisfy her - and tire her sufficiently - so that she naps in between and stays safely tucked into her bed.  The bed adjusts to a sitting position... and she is turned every two hours... so this should be enough stimulation to prevent further pressure wounds - the continual justification for Polly being "up and about."

Every time that my grandmother does something like demand to get up and out... or to call me on the telephone... the aides say, "Oh, Polly's coming back!"  I don't see it.  She still sleeps a LOT.  Most days she might make a couple of lucid comments... then the rest is one or two words - or gibberish. The Hospice social worker called her comments "social pleasantries" - answers like "I'm fine," and "Hello," and "Thank you" - simple answers to general questions.  Anything more complicated most often gets a confused answer - if that.  As Mam-ma takes less pain medication, and we get farther from the surgery date and the anaesthesia, she has more lucid thoughts... hence, the phone call and the "ass in a crack" comment that is so classically "Mam-ma Polly."  But she was not putting many sentences together before she fell and broke her leg... so any hopes that she will do so now are not reasonable, in my opinion.

I am still hopeful that things will smooth out somewhat... that for a while, at least, I truly will not feel I have to pop in every single day.  I want to learn from the experience with my maternal grandparents.  I don't want this to make me completely neurotic and disrupt my relationships with my husband and other family members and friends.  I want to keep this all in perspective and not micro-manage - OR compromise my own physical, mental, and emotional health.  I don't think Mam-ma would truly want that, either. 

Last night Greg and I went to dinner with one of Greg's best friends from high school, and his wife, who also went to school with us.  We had a great time reminiscing and catching up... and it was great to think about other things and other people for a few hours.  My grandmother's name came up, because someone stopped by the table and asked about her.  Both of our friends rode the school bus when she was driving... and we marvelled that she is almost 100 years old.  But we did not discuss her fall or her subsequent decline.  We didn't need to... I didn't need to talk about it!  And that felt great!

I have to admit... I was not really upset about the phone call Monday night.  In fact, I was somewhat amused.  For just a moment, I got a glimpse of the "Old Polly," and it actually felt pretty good.  I knew it was a manipulative ploy... whether she realizes it now or not... but at the same time, her colorful language and the clarity of her voice was a welcome treat.  I'm looking for blessings and positive notes in the most unusual and extraordinary places and events... and sometimes I'm finding them!  Saying "I'm sorry" didn't fix a thing... but the phone call was still a little treat... and I'll take it!