This Sandwich Has a New Slice of "Bread"

My mother...Arline Chandler Smith

Life has a strange way of taking turns you never expected.  When my 76-year-old mother began to complain of pain and soreness in her abdomen last February, I thought little of it...particularly given that her long-time internist in Little Rock did not even examine her when she mentioned it to him.  In fact, he brushed it off and said, "You're not telling me anything that raises concern."  But the pain and discomfort continued through the summer.  And a few months after Mother's internist told her that this was nothing to worry about, he was arrested and charged with running a prescription painkiller ring from his office.  He now faces federal charges, as well.

So Mother found herself without a doctor, and after praying about what to do, she opted to start seeing a nurse practitioner at a local clinic.  Her thinking was that this person could at least refer her to specialists who drove the 65 miles from Little Rock to practice in the outpatient clinic at our local hospital.  Mother mentioned the pain to her NP, who suggested maybe she needed to see a surgeon for an endoscopy.  This was in August...the first available appointment for a consult was November 12th.

Greg pushes Zola in a swing installed in the
backyard at Mother and Lee's house. Behind
them is the platform for the new playhouse.

Meanwhile, Mother was going about her busy schedule pretty much as usual.  She and her husband, Lee, traveled to Tennessee in July for a family reunion.  She tended to Lee as he saw doctors about health scare that some thought might require surgery.  Thankfully, Lee is healthier and stronger at 77 than many men in their 30s, so he is in "watch-and-wait" mode with his health issue.  He put a new roof on their house last spring, and after getting his "good" diagnosis this summer, he set in to build a play house in their back yard for my great-niece and nephews...Zola, Timothy and Nathan.  Lee and Mother had installed a new wood fence around the yard a couple of summers ago, and he saved the fence boards.  They are now being repurposed into a playhouse - complete with front porch, pitched roof, and windows!

Mom offered to keep our 3-year-old great-nephew on Fridays while my niece and her husband work.  The other two children are in school, but a place was needed for Nathan.  Greg and I kept him this summer on Mondays and some Fridays and other weekdays...but Mother wanted to take the "Friday shift."  She enjoyed several visits from Nathan...and my niece, Jasmine would come after work and bring Timothy and Zola and spend an hour or so visiting and letting the children play in the back yard.

All of this changed on September 21st, when Mom awoke with what she thought was a UTI.  We laughed, because she immediately "doctored" herself with Cipro, an antibiotic that she had purchased at the "pharmacia" in Mexico while she and Lee wintered in Arizona.  In fact, she messaged me before noon and said, "I'm much better already, and I feel silly to go to the clinic.  But I guess I will go ahead and keep my appointment.

At the clinic, my mother saw another Nurse Practitioner.  She mentioned again the pain in her abdomen...and this woman examined her.  "Your stomach is 'hard'," she told Mother.  She ordered a CT scan at the hospital for the next morning and told my mother that she would call in the afternoon with the results.  Before noon, she had phoned to say, "You have a mass in your stomach, and you need to return to the hospital for blood work.  We will probably order a biopsy."

My mother is an avid traveler.  She is a free-lance writer, author of eleven books, and weekly contributor to a website for RVers - RVLife.com - where she maintains a blog about her travels with Lee in their 42-foot motorhome.  When Mother received this news, she had a PR trip planned to Branson, Missouri - which is something of her "second home." Businesses and attractions in Branson were hosting writers and media people from across the country for the weekend.  It would be almost 3 days of good food, great shows and entertainment, and topnotch hospitality.  Mom got the blood work done and opted to go to Branson.  She and Lee returned home late Sunday evening.

Monday morning, I got an e-mail from Mother..."I have a serious problem, Debbie. The tests show cancer markers and it’s my ovaries. But there is more than one mass. [The Nurse Practitioner] has blocked off an hour to talk to me—to us—in the morning at 10:00, unless they can do the biopsy tomorrow. She offered to come to my house and talk to us tonight—in fact, she said she felt so heavy about this that she almost called and asked to come last night. I want you and Suzanne [my sister] to go with me to talk to her, as well as Lee. This is going to be OK—no matter what. Just going to be a battle ahead." 

So the following morning, Greg and I met my mother and Lee, and my sister Suzanne, at the clinic.  We all squeezed into a tiny exam room where the Nurse Practitioner came in and introduced herself to each of us, then sat in the floor with her laptop and a folder of test results...and she began to give us the "report."  Mother has multiple masses, ranging in size from 2.5cm to 10cm...and they were all over - near her liver, in the lower quadrants of her pelvis, and floating in her abdomen.  None were thought to be attached to organs.  While the CA125 blood test for ovarian cancer is not reliable - often giving a false negative - Mother's did indicate a positive.  "Normal" range is less than 30...my mother's count was 300.  The nurse kept telling her how sorry she was.

I guess I was in disbelief.  Mother had not seen a doctor.  Perhaps this was all a mistake.  But a biopsy was scheduled for that Thursday morning in Little Rock.  Mother would not let us go with her...Lee drove her down for the procedure.  After the biopsy, she did ask if I would keep Nathan on Friday...she realized that she was too groggy and sore to manage him.  She was scheduled for a consult with the oncologist on the next Thursday.  After Mother and Lee met with the oncologist, they came to our house and met with Greg and me - and Suzanne - and delivered the official report.

The oncologist felt like all indications were that this was ovarian cancer; however, he wanted to examine blood work and get a PET scan to be sure. Those have now been studied, and his best guess is that an ovary ruptured and "spewed cancer cells" throughout my mother's abdomen. The good news is that there is no spread beyond the abdomen - nothing in the chest and beyond.  The oncologist is treating this as Stage 3C Ovarian Cancer...and aggressive chemotherapy was begun on Thursday, October 8th.  

Mother got IV drugs for nausea - and steroids - and then she spent the next three hours receiving  Paclitaxel (conventional) and Carboplatin.  On Friday, she got a shot of Neulasta to boost her immune system - to the tune of $5000.  Thankfully, she is told that her insurance company will cover this.  But she must have Neulasta after each of her chemo treatments, which are scheduled for every 3 weeks.  Her oncologist told her that within 2 weeks of this first treatment, she will begin to lose her hair.

Mother felt GREAT after the treatment...like she could climb a mountain (the steroids).  She didn't sleep much Thursday night, but on Friday, she still was energized...until sometime late afternoon.  She thought maybe it was the Neulasta, but she had a "small sinking spell" while shopping and hurried home.  Saturday she laid around and did not feel well...by Sunday, she had all of the side effects - nausea, vomiting, diarrhea, body aches and pains.  The only thing missing was hair loss...and she is bracing for that.  She feels lousy...is in bed a lot...and her world has been turned upside down.

In the course of less than a month, my mother has gone from planning her next trip to planning a trip to buy a wig when her hair falls out.  In the course of ten days, she has gone from spending a happy Friday with her 3-year-old great-grandson and an hour or so of play with her other two great-grandchildren and their mother to being unable to sit up and answer e-mail at her desk for more than an hour or so before returning to bed.

I will tell you...I feel pretty helpless.  I want to do for her...and there is nothing to do.  She said, "Keeping the children is helping me.  If you will keep Nathan on Fridays, that will be your part."  Somehow, it doesn't feel like enough - and yet, I know that more "opportunities" to "do" will come in the next few weeks and months.  So Friday, I kept Nathan.  Sundays after church, the children come home with us for a few hours, and we did that yesterday.  Today there was no school for Timothy, so both he and Nathan came to my house for the day while their parents worked. I take the two oldest children to Taekwondo lessons on Mondays and Tuesdays...so tomorrow, we will go to our class.  Mother keeps e-mailing me and thanking me for doing these things for the children.

Timothy rides his tricycle on Mother's carport.  They recently
bought the kids this tricycle - complete with bell and tassles!

I am still trying to process all of this in my own head.  The children do not know about my mother, other than that Granny did not feel well Friday, so Nathan came here.  At six years old, Timothy is incredibly sensitive about old age and death.  He thinks that anyone who gets sick - or old - "will die like Mam-ma Polly."  He remembers her death...and paired with the deaths of two beloved family pets who were old and sick, he has formulated the idea that when you are sick or get old, you die!  And this worries him.  When Mother starts to lose her hair, the children will have to be told something...but we have a few days until then.  And her doctor has told her that she is to avoid sick people and small children...so her contact with them will have to be limited anyway.

Nathan sits at our kitchen counter
during one of his Friday visits.

So my days are once again filled with children and their activities...and caring for a loved one at the other end of the age continuum - as much as she will allow!  I really anticipated caring for my mother when she was 90...not 76.  And I'm really not sure what to do with all of this information just yet.  I am trusting God to take me by the hand and lead me, because I feel like we're all somewhat fumbling in the dark at this point.  I know that He is more than able...and that He has my mother - and all of us - in the palm of His hand.

For now, I commiserate when Mother sends an e-mail to tell me she is going back to bed...and I color another picture with Timothy and play "superheroes" with Nathan or read a story to Zola.  It's doesn't seem like enough...but somehow, for now...it is.

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.

Micro-management or Loving Care... How Do You Tell the Difference?

I am sorry it has been so long since my last post. To say that this has been a hectic and stressful week would be an understatement. The hospitalist agreed to keep my grandmother over the weekend so that she could be re-admitted to her apartment at the ALF on Monday and placed in Hospice Care. I met Monday morning with the Hospice director, the ALF administrator and R.N., and the Hospice R.N./Caseworker. We reviewed the care plan for Mam-ma and agreed that she would do only as much as she fel like doing... and that our goal was to keep her happy and comfortable for the rest of her life.

To say the weekend in the hospital was uneventful would be a lie. For starters, I arrived Saturday morning around 9:00, and the aides said, "She didn't eat much breakfast." I immediately knew why as soon as I saw Mam-ma ... she wasn't wearing her dentures! I told the girls... "She doesn't have in her teeth!" They sheepishly disappeared, and the ward clerk scrambled to find something in the nutrition room that we thought Mam-ma would eat. Then she realized the food cart was right beside the nurses' desk, and Mam-ma's virtually untouched tray was still there. She retrieved it and warmed the scrambled eggs and biscuit in the microwave. I fed Mam-ma, and she ate all of her eggs and half a biscuit with jelly - once we put in her teeth, of course!

I think one of the hardest things for me was that Mam-ma did not know me for several days.  She seemed to recognize me, but when I would ask, "What's my name?" she would shake her head and say, blankly, "I don't know."  Same thing for her own name.  Friday evening, she knew Greg by name... and then my cousin Amanda.  But it was late Sunday evening when I asked again, and she knew my name... and she was able to give her own name on Monday.

Saturday morning, the therapist came to do some exercises, but when she and the nurse lifted Mam-ma from the bed, Mam-ma virtually collapsed in dead weight, and they just sat her in a chair. The therapist, who is a friend whose grandmother is Mam-ma's contemporary, mouthed from behind Mam-ma... "You're doing the right thing" (meaning Hospice). That made me feel more confident in my decision.

Sunday was horrible. Mam-ma required several "brief" changes, and the nurses were always so kind.  But sometimes it was an hour after we rang for help... and that is just too long - even if you are understaffed.  So I had to make a few trips to the desk to remind someone I needed help!

By the time Sunday ended, my grandmother had suffered through several hours of severe gas pains that left her screaming in discomfort. She was unable to eat her dinner, and I discovered that while we were at lunch, Amanda and her dad had come, and Mam-ma had sent them home with some harsh words... she had a messy diaper and was embarrassed, and she told them in some pretty colorful language to go home. So they did. Another cousin came before dinner, and she helped me with Mam-ma for a while... managed to feed her some applesauce... and Mam-ma finally settled down and seemed to stop hurting around 7:30 p.m. I hugged her and promised, "I'll take you home tomorrow." She frowned and said, "Debbie, I'm worried about you.  You're doing too much."  I explained that I was only doing what she needed, and I would be okay.  Later, as I kissed her goodbye, she cried and said, "Oh, Sugar... you've done so much... you are just so precious." I left in tears.

I came home and tearfully told all of this to my husband... who had been there with me for part of the afternoon drama... and he said, "You are overly tired. It will be okay." I was... and it is... but that was a rough day.

Monday, I arrived at the hospital, and the aide met me and said, "She hardly ate anything this morning." I took one look and said, "I can tell you why - she isn't wearing her teeth again!' This was another aide, and she said, "But it was pancakes and scrambled eggs!" I replied, "I don't care... she's not gonna eat without her teeth!" So the nurses ordered another tray and apologized profusely. This is "Nursing 101!" The charge nurse said, "If you were staying another night, I'd make a sign that said 'Be sure to check for her teeth before feeding!'" After meeting Monday morning at the ALF with Hospice and ALF staff, we got Mam-ma settled back in her apartment by late afternoon. No less than six aides, a nurse, and an administrator swarmed the hospital van to greet her when she arrived. That was such a great sight... I knew we were truly home. I spent more than an hour with the Hospice nurse and social worker, filling out paper work and getting things in order. It was another long day.

Mam-ma seemed to do well on Tuesday... a Hospice aide came and bathed her. She has a hospital bed, a wheelchair, bedside toilet, and oxygen if needed. The four days per week that the ALF staff doesn't give her a bath are covered by Hospice aides who come and bathe. Mam-ma was concerned about me "doing too much," so I told her I would stay home on Wednesday and not visit. Honestly, my house was so dirty and messy, and I could not rest until I knew it was in some semblance of order. It never felt so good to clean a bathroom or dust and vacuum! I made potato salad and spaghetti sauce to freeze for quick meals and just basically caught up on things that had been neglected for nearly two weeks.

Thursday, we had a Mother's Day luncheon at the ALF. I had told the administrator that my sister and I would attend - and if Mam-ma could not attend, we would sit with some mother who had no one there to sit with her. When we arrived, Mam-ma had been bathed, and she had on pajamas - even the pants! Her favorite Hospice aide was there, so I didn't question the pajamas... although she had worn hospital gowns up to that point. We asked if she felt like going to the luncheon, thinking she would say no... but she said yes, and she wanted to wear her nicest suit! So the aides dressed her, and off we went.

Looking back, this was a huge mistake. Mam-ma smiled and looked beautiful... and many came to the table to greet her. But she barely ate, and she didn't have a clue about where she was or what was happening. Back in her room, she immediately fell asleep in bed... clothes and all. A short time later, an aide got her up to curl her hair, since she didn't feel like going to the beauty shop for her regular appointment.  This was all just too much for her.

During lunch, the activities director stopped by our table and told us that Mam-ma had come out to the dining room and played BINGO the day before. This was news to me, and I was quite shocked. I knew the nurse had told me she wheeled Mam-ma to the dining room a couple of times... but she had also told me that Mam-ma did not get up for any meals on Wednesday. I'm not sure exactly what she did. But the bottom line was that I realized that the staff had put Mam-ma right back into her old routine and was pushing her to get back to her "old self." I didn't know what to do, but I figured she was pretty close to "hitting the wall."

I was right. Friday morning, the Hospice nurse called me and said, "I've just seen Polly, and she is totally out of it. She cannot stay awake... she is lethargic... I don't know what happened!" I did! I explained how much that Polly had done last week, and the nurse told me that this had to stop. I agreed... but how? She told me that I needed to contact the administrator and discuss this with her... and I did... and we agreed that Mam-ma takes meals in her room, stays in her hospital gown, and only gets up for a little while each day and sits in her recliner - at least for now. She is still in a lot of pain, and only 14 days out from a major surgery at this point. Plus, she is less than 6 months from being 100 years old!!! Because Mam-ma looks so much younger - and generally acts it... and because the staff loves her so and wants her well... they were really working to rehab her back into shape!

So I'm getting some dirty looks and have had to go back and reiterate to a few that we are NOT pushing... that "less is more" in this case. But we seem to be getting there, and I do think this is the best thing for my grandmother. I am not willing her to die... nor giving up on her. I am managing her care. There have been times when I have called about something or gotten involved in a detail here or there, and my husband has suggested that perhaps I am micro-managing her care and causing myself undue stress. The Hospice nurse assures me that I am not... that I am simply loving my grandmother and making sure she is taken care of. It's hard to know how to balance this... and what can slide and what is important. I'm in some uncharted territory here (at least for me), and I am doing the best I can.  When I visited today, a new shift of aides was on board, and Mam-ma had been to lunch and was dressed in pajamas again.  So I had to "educate" them on the plan... apparently the word about her care plan did not get to them.

One aide seemed to question my comments... I told her and another aide that the doctors feel that even with therapy, Mam-ma most likely will not walk again, and this aide said, "Oh, I disagree!  They don't know Ms. Polly!"  Maybe not... but I do, and she is almost 100 and 14 days out from a major surgery.  For now, at least, bed rest, meals in her room, and no wheelchair rides is the way to go.  I did consent to letting Mam-ma wear her pajama tops instead of a hospital gown.  She says the gowns "choke me."  So she can wear the tops and a robe when sitting up in her chair... but wrestling on a pair of pajama pants is preposterous for someone in her condition!

I am so thankful for Hospice. I told someone that Hospice is as much for me at this point as it is for Mam-ma. I needed their support and guidance. I needed to know that someone who knew more than I will manage her care and help me with all of the decisions. And I needed someone I could call (besides a family member or friend) who was an expert... and who could be my sounding board.

At this point, we are day-to-day... or is it minute-to-minute?! Things change constantly with my grandmother, and I'm not anticipating anything at this point - good or bad. I'm trying to let things happen, and be prepared for whatever comes next.

Meanwhile, our little Timothy celebrated his 3rd birthday Sunday. We sent lots of wrapped gifts, and he had a big day with his family. We're hoping to hear from him firsthand soon about all of the festivities and get his reaction. I wish we could have been with him for this celebration... but at the same time, I'm so glad he is with his mother right now and not factored into this mix! God knew I couldn't handle both... and He was right!

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.

Learning to Let Go...a Difficult "Life Lesson"

My mother pointed out an article in the Sunday edition of the Arkansas Democrat-Gazette that was reprinted from the Washington Post.  Written by hospital internist Craig Bowron, the article dealt with our efforts to prolong life... often at the expense of the very ones we vowed to protect and nurture.  We have a difficult time of letting go.  To read this insightful article in its entirety, click here.  I share below an excerpt I found particularly profound.

This physical and emotional distance becomes obvious as we make decisions that accompany life’s end. Suffering is like a fire: Those who sit closest feel the most heat; a picture of a fire gives off no warmth. That’s why it’s typically the son or daughter who has been physically closest to an elderly parent’s pain who is the most willing to let go. Sometimes an estranged family member is “flying in next week to get all this straightened out.” This is usually the person who knows the least about her struggling parent’s health; she’ll have problems bringing her white horse as carry-on luggage. This person may think she is being driven by compassion, but a good deal of what got her on the plane was the guilt and regret of living far away and having not done any of the heavy lifting in caring for her parent.

With unrealistic expectations of our ability to prolong life, with death as an unfamiliar and unnatural event, and without a realistic, tactile sense of how much a worn-out elderly patient is suffering, it’s easy for patients and families to keep insisting on more tests, more medications, more procedures.

Doing something often feels better than doing nothing. Inaction feeds the sense of guilt-ridden ineptness family members already feel as they ask themselves, “Why can’t I do more for this person I love so much?”

Opting to try all forms of medical treatment and procedures to assuage this guilt is also emotional life insurance: When their loved one does die, family members can tell themselves, “We did everything we could for Mom.” In my experience, this is a stronger inclination than the equally valid (and perhaps more honest) admission that “we sure put Dad through the wringer those last few months.”

At a certain stage of life, aggressive medical treatment can become sanctioned torture. When a case such as this comes along, nurses, physicians and therapists sometimes feel conflicted and immoral. We’ve committed ourselves to relieving suffering, not causing it. A retired nurse once wrote to me: “I am so glad I don’t have to hurt old people any more.”  ©2012 Craig Bowron via The Washington Post

I found so much of this familiar.  Don't many of us know that "white knight" relative who wants to breeze in and "fix" everything?  We primary caregivers have all experienced the "helpful" friend or relative who thinks we should be paying attention to details we have already deemed unimportant in the overall scheme of things.  And yes, some of us who are closest to our elders can see what my grandmother sees... that "they's worse things than dying."

A couple of days ago, I was talking with one of my dearest friends, and I said, "I am amazed at how far my grandmother has come since her illness and fall at Christmas time."  She replied, "Don't you mean how far she has declined?"  "No," I explained... "I mean how much she has bounced back and improved.  She is walking and moving well.  She is probably as clear mentally as she was before the fall - even though she still is not all that clear - and she is incredibly healthy for a woman halfway through her 100th year!"

Mam-ma Polly and Timothy in late
November 2011, just days before
she was hospitalized for six days. 

Given all of this, I am extremely reluctant to agree to any "routine" medical tests, medication changes, or anything else that upsets her apple cart.  My mother and a few others have been quite upset with her lately for taking her walks outdoors.  Mom is so afraid she will fall on the sidewalks.  She keeps telling Mam-ma... "You have vast hallways to walk indoors... why do you need to get outside?"  Mam-ma's answer... "I need fresh air."  I get that... and if she falls happily walking outside in the warm spring sunshine, so be it. 

This weekend, a fellow resident who is still mobile spoke to my mother at church about "really getting after" my grandmother for walking across the street from her ALF to visit a friend who is in the nursing home.  My mother had already admonished Mam-ma not to make this trip.  Mam-ma has not mentioned it to me.  Honestly, I am fine with it.  My grandmother is at a stage in life where she has very little that gives her a purpose.  If visiting her fellow Sunday School member friend and offering encouragement gives them both a lift, who am I to say she can't make that walk.  Is it rife with potential pitfalls and dangers?  Sure it is!  Is there a chance she could fall and hurt herself seriously... face a length hospital stay or worse?  Absolutely!  Is it worth these risks?  I believe so.

My mother's cousin, who is 88 and has a litany of ailments, is dying. He was placed in Hospice care last week.  It took his companion of almost a decade a long time to come to the conclusion that he had already drawn... he was dying.  She kept insisting, "He can't die... I can't live without him!"  He insisted, "I don't have much longer."  And with virtually no quality of life remaining, he shouldn't have to. 

 

So last week, he raised his hand and said "No!" to more tests, needles, poking and prodding.  No more medications.  No more procedures to drain fluid that is building up around his vital organs.  Nothing but a reasonably comfortable bed in his own home, with his own television and people who love him to watch and wait.  He told me Sunday, "It won't be long now."  I told him that was fine... I would see him on "the other side."  He and I had agreed a few days ago that we are both okay with this.

I told my dear cousin what I would tell my grandmother or anyone else in this position... you don't have to stick around for anything or anyone who is here.  You have fought well... lived well... and now it's time for your big party.  Rest, relax, drift off to sleep and let the angels carry you to heaven when God has your mansion ready.  Hug your wife, my dad, and a few others for me... and save me a seat!

The longer my grandmother lives and the more time I spend in the presence of elderly people who are being somewhat artificially kept on this planet, the more convinced I am that Dr. Bowron has it right when he quotes the nurse who said, "I'm so glad I don't have to hurt old people any more."  There is no shame in recognizing that sometimes, we go too far.  In certain instances, we do more than is necessary... and we fail to recognize when enough is enough.  I pray that God would grant me wisdom to stop short of this... in the lives of those for whom I am caregiving - and that the same dignity would be afforded me if/when I reach this stage of life.

* * * * * * * * * * * * * * * * * * * *

Meanwhile, I do think my grandmother is still having little mini-strokes, and in the effort to provide information of the "you-just-described-what-is-happening-in-my-world" variety, I share the following:

My grandmother had company recently - cousins from another state who drove over for the day to visit with her, bring her KFC (her favorite), and maybe play a game or two of dominoes.  The night before they arrived, Mam-ma phoned me, upset... she was worried about how she was going to get ready for her company.  I was in bed with the flu - and she knew this.  I told her that she didn't have to do anything to get ready - her room was clean... they could go to one of the common areas and eat their meal and play dominoes... everything was set. 

After a long difficult conversation, I was able to determine through the brief words and a few tears that Mam-ma was worrying about how she would "clean up the mess" after the company left.  I finally said, "Mam-ma!  We're talking a couple of boxes and a sack from KFC!  There won't be a mess.  Besides, those girls would never leave you with trash and expect you to clean up after they were here."  What can I say?  Maybe it was the flu talking.  I was probably too curt.  But she sniffled and said, "Well... okay."

The company came and went, and the day afterward, Mam-ma called again... asking how I was feeling.  I was still sick and in bed... the flu really took it's toll on me, and that is never a good thought for Mam-ma!  I asked how her visit went, and she told me, "Terrible!"  She proceeded to cry and tell me she had grown tired and asked the company to leave, and she just felt awful about doing so.  I assured her that they probably were not offended... they had only planned to stay a few hours.  She was not convinced.

I spoke with the cousins later, and they said they had a wonderful time.  They arrived around noon and stayed until approximately 3:30 p.m.  They ate KFC... visited... and walked all over the ALF.  Mam-ma really showed them around.  They told me was talkative, but apparently she never suggested playing dominoes.  One of the cousins told me, "Polly started nodding off around 3:30, and we were needing to leave anyway, so we told her we thought we should head for home."  They were clueless that Mam-ma felt she had insulted them... in fact, leaving had been their idea - and they felt they had all had a wonderful visit. 

I am quite certain that Mam-ma enjoyed the day.  I am also quite certain that she had a mini-stroke that probably began the night before when she called and was worried about clean-up.  The nurse told me a few days later that she mentioned to Mam-ma, "I hear you had company over the weekend," and Mam-ma did not remember the cousins had been here.  She has never mentioned their visit to me again... and I have not mentioned it to her.  This is the pattern of the mini-strokes... confusion, even agitation and a sense that things are all awry, followed by extreme fatigue, maybe a little more confusion... and then the forgetfulness.  It's as if none of it ever happened.  Or... as in the case of a convoluted phone call a month or so ago, she will remember that something happened - and she was not herself - but she can't put it all together.

Last week, Mam-ma called twice.  For the woman who used to call several times a day, two times in one week is now a lot... and there is a lot of silence and struggle to find words when she does call.  The first call came at 9:00 p.m., and she asked (remember, this took several minutes to accomplish)... "Do you still have light bulbs?"  I determined that the bulb in Mam-ma's bedside lamp had burned out when she said, "Oh... I've turned on my bathroom light... maybe that will help."  I suggested she have an aide get the bulb from her other bedside lamp and swap them for the night.  She agreed to that.  I asked, "Are you okay otherwise?"  She replied, "Well, I'm just all shook up."  I (stupidly) asked, "What's got you 'shook up?'"  She answered, "Well, my light bulb in my lamp isn't working."  I reminded her to call an aide to exchange the bulbs... and she said she would.  I went to visit the next day (and take more incandescent bulbs I had rounded up from my own lamps - she will not use the new energy-efficient variety!), and she had done what I suggested.

A couple of nights later, Mam-ma phoned.  My husband looked at the clock - 6:45.  He knew immediately why she was calling.  It took several minutes to confirm that she was unable to locate "Wheel of Fortune."  It's March... the SEC college basketball tournament was in action, and the local station was broadcasting the games instead of regular programming.  I tried to explain that "Wheel of Fortune" would not be on that night - nor the next night.  "No!" she said, "I'm a lookin' at Ole Miss and Tennessee."  Exactly!

Mam-ma kept saying, "You don't understand!"  Finally, she got out, "Well!  Where is ABC?"  I told her again, "ABC is not on your TV right now because the ball tournament is being broadcast.  You will have to watch another channel tonight and tomorrow night.  I'm sorry."  "Oh... okay," she said, in a disappointed tone.  Honestly, I was just glad to hear her television blaring in the background - for the first few weeks of January, she never turned it on.  This tells me how much improvement she has made in the last month or so.

So while my grandmother is well enough to walk across the street and visit a sick friend at the nursing home, she may not remember that she went... nor be able to say more than three words to her when she gets there.  She still has trouble conversing, and on any given day, she may have a little mini-stroke.  She has become more "clingy" when I go - reaching out to pull me close for a second or third hug... crying and saying, "I've just missed you so bad," even though I visited two days prior.  The general decline continues.  She very well might fall and hurt herself badly while walking outside... and I might be making my next posts from her hospital bedside. 

But I am beyond trying to stifle any efforts she makes to stay active and engaged, short of her suggestion that she might like to drive a car one more time!  That, I think, is where I draw the line!

We're All In This Boat Together

Several times lately (twice in one recent trip to Wal-Mart), I have commiserated with others who are balancing the care of an elderly loved one with their own lives and responsibilities... and to some extent, the care of grandchildren or other little ones.  Some are dealing with similar issues to mine with my own grandmother - the challenges of aging, dementia, depression, and grief over the loss of peers. Just since the first of this year, five residents of my grandmother's ALF have passed away... and four of those were her close friends.  Another dear friend who lived across the street at the skilled care nursing facility died last week.

Losing five friends in less than five weeks is enough to drag anyone into a deep depression.  So it comes as no surprise that my grandmother has not thought clearly in recent weeks.  One of her table mates sunk into a deep depression over the loss of their dear friend, Ruth, who had been a next-door neighbor to this lady when they were still living at home.  I visited with the grand-daughter of this sweet lady one afternoon at Wal-Mart.  She said, "We could write a book!"  I told her... "My mom already has!"  I also shared a link to this blog, and she has e-mailed me to say she read several posts, and she felt better knowing that others were having similar experiences to hers with her own grandmother.

So I thought this would be a good time to mention my mom's book again.  It's called When Heads and Hearts Collide, and it chronicles much of the journey with my maternal grandparents, both of whom lived out their days in a skilled care nursing facility.  I have shared this book with several friends, and to a person, they have all said, "This could be me!"  So many of the themes of the book are universal among those caring for elderly loved ones.

I would also like to mention a phenomenon that is quite common among the elderly, and that is something called "Sundowning."  Information found at www.mayoclinic.com says that... "the term "sundowning"  refers to a state of confusion at the end of the day and into the night. Sundowning isn't a disease, but a symptom that often occurs in people with dementia, such as Alzheimer's disease. The cause isn't known."  The website lists several contributing factors:  fatigue, low lighting, increased shadows, and disruption of the body's "internal clock".

An article at AARP.org defines "Sundowners Syndrome" as "a cluster of signs and symptoms that occur as darkness falls. The onset can be abrupt and the behavior can have a paranoid quality to it. The person may have delusions they are being watched. Very often they become severely agitated and argumentative. It is common for them to lash out at their caregiver as well. There also may be pacing, wandering, cursing, yelling and hallucinations."

Not all people who "sundown" are what I would consider "elderly."  The husband of my mother's cousin is experiencing this condition in his early 70s, following chemotherapy for lung cancer and other medical procedures.  But the symptoms are very similar...and one of the worst for caregivers is agitation - often to the point of beligerence.  My mom's cousin said that during a recent episode, her husband required medication to calm him... and it took more than one person just to administer the medication.  This can be extremely trying for the caregivers and other loved ones who are standing helplessly nearby.

There are a couple of things that we should remember...

1. Fatigue may play a big role in "Sundowners Syndrome."  Ask yourself whether your loved one has been unusually stressed... perhaps hospitalized and out of the normal routine... or overly tired or run down from an illness or injury.
2. Don't take it personally... even if your loved one lashes out and says it's your fault.  Remember, your loved one is not himself/herself for whatever reason.  This behavior is not deliberate... nor something either one of you can necessarily fix.

I am continually surprised when I talk with others and discover how amazed they are to learn that others experience much the same thing.  There are a lot of you out there who are lonely and isolated... and this is really sad.  Look around when you visit your loved one.  Find someone who is visiting another resident and strike up a conversation.  See if maybe you can befriend each other.  If you know of someone who is dealing with much the same situation as yours, reach out to them.  We really are all in the same boat... and somehow, knowing that we aren't alone is of critical importance.

My  mom's book can help, too.  You can order it from her blog by clicking here.  Look on the left-hand sidebar for the order button.  And sometimes it helps to share your own story.  Please feel free to contact me and tell me about your experiences.  If you permit, I will publish some of them here.  Sharing your own frustrations and loneliness might be the turning point for someone else who is walking this journey... and maybe keep a few of us from jumping overboard!

Change is Hard at Any Age

It's been a busy month.  I know I say that a lot, but this one has been especially busy.  We've had Timothy every weekend while my sister worked, which usually meant picking him up either Friday night or Saturday morning, and keeping him until Sunday afternoon or Monday morning when he returned to daycare.  Meanwhile, Mam-ma has done pretty well.  She had about a week of celebrating for her birthday, including a visit from beloved cousins in Oklahoma who spent an entire Saturday playing "Chicken Foot" dominoes with her and taking her to her favorite restaurant - KFC, or "Kentucky Colonel" as she calls it.

My sister and her husband have decided that it is time for Timothy to return to live with his mother, baby sister Zola and Zola's daddy (who Timothy calls "Daddy," also).  So this coming weekend, the plan is for my sister and her husband to drive Timothy to Texas, spend a few days visiting, and return home without him.  After three months of spending so much time caring for this little guy, the thought of him leaving for an indefinite period of time is truly stressful.  I am trying to stay positive.  I know that Timothy needs to be with his family... but I am going to miss him madly!

And Mam-ma is convinced that Timothy will never see her again... which could be very possible.  Today, we visited her apartment, and she said to Timothy, "I hope you don't forget me."  I assured her we will never let that happen.  When we left, she asked, "Will I get to see him again before he leaves?"  I told her we will try to come and see her next weekend while he is with us, but I couldn't promise.  There were lots of tears and hugs and kisses when we left, and I felt badly, but this is not something I can control.

Thursday, we had Thanksgiving lunch at my mother's.  My sister filled Timothy's plate while I filled Mam-ma's.  I carefully cut up her ham and made sure to get the things I felt she would want to eat.  I think there was more thought required for her plate than Timothy's.  However, after a few bites, he wanted down from the table, and he ended up sitting in my lap, beside Mam-ma, finishing his lunch.  We brought him home late afternoon, so that he could wind down and get settled before bedtime.  Friday, he returned to my mom's for most of the day, while my husband and I hosted a football watch party.  We're all trying to make the most of these last couple of weeks before Timothy leaves.

I will admit that I am struggling with my feelings.  Last week, I said as much to my husband, and he said, "You are blue because Timmy is leaving."  I told him it's more than that.  I feel like my life is on the verge of a major change.  Having part-time care for Timothy these last 29 months has changed our world in ways we never expected and brought us both tremendous challenges and immeasurable joy.  And when his family moved to Texas in August and we didn't see him for six weeks, I was pretty lost.  At the same time, I have (gladly) put a lot of my own projects on hold since Timothy was born... never sure when the phone would ring and he would be coming to stay for a day or two - or a week or more!  Now my niece says it will be at least the end of February before they return for a visit.

And then there is my grandmother... she continues to decline overall, and I feel like some morning the aides are going to find that she drifted away in the night - or she will contract some illness or infection and be gone in a matter of days.  I know she has lost her drive and determination... and she is basically "waiting for the LORD" to take her home.  So there is every possibility that the next few months will find me with two less people to care for, and honestly, I am going to have some adjusting to do!

Clearly, my situation pales in comparison to those of you who have full-time care of either a child or a senior - or both.  But I am also certain that some of you know exactly what I'm talking about - you've "been there, done that!"  So I ask that you remember my family in your prayers... that you ask God to make this reunion of Timothy and his family a good one - and that He equip the rest of us with whatever we need to handle his absence.

My niece needs prayers, too... she will be caring for her six-month-old daughter and 29-month-old son while living over seven hours from her parents and the support system she has relied upon for all of her 21 years.  She is also dealing with the reality that she could lose her great-grandmother in the coming months and not be able to get home.  In a recent phone conversation, she said to my sister, "If something happens to Mam-ma, someone will come get me, won't they?"  My sister had to tell her that this was not likely, for a variety of reasons. 

So this will be a challenging week.  We will keep Timothy over the weekend until my sister and her husband get the car packed and are ready to head to Texas.  I have given this situation to God, and I am trusting He will guide my steps over the next few weeks/months... and keep me sane.

Where Has Another Month Gone?

I knew it had been a long time since my last post, but almost a month... really? That should tell you something about how things have been going. It has at least seemed like an unusually busy month, and certainly there has been no time to get bored! But isn't that the life of all of us who are members of this Sandwich Generation?!

My sister finished her CNA classes and began a job at a local nursing home, working the 6:00 a.m. to 2:00 p.m. shift. Thankfully (and to my amazement!), the daycare that Timothy attends opens at 5:15 a.m. I asked his teacher, "Do you really have children come that early?" She nodded her head and said, "Oh, yes!" So Timothy arrives at 5:30 a.m., and my sister picks him up in the afternoons, sometime after her shift is over. So far, he is doing well... he certainly enjoys that late morning nap for 2 hours or more! But he is thriving at the daycare and really loving his teachers and his new friends.

When I last posted, my grandmother had just had her monthly visit from the facility physician. She had given him the same complaint she has given me for years, "I can't pee." If you have followed this blog for a while, you know that we even made a visit to her previous family physician for this once, and he tried to explain that she takes Lasix and does not need to go on the hour, every hour, all day long. But still, she continues to complain. So in an effort to appease her, the new doctor ordered an "in and out cath" to see how much urine she retains after going to the bathroom... and to show her that she is really emptying her bladder.

When I arrived for a visit, she said, "The doctor has been here, and he told that nurse they would do surgery." I questioned her... "Surgery? On what?" "Well, on my kidneys... I can't pee." That's when I found the doctor in the facility making rounds, and he assured me it was not surgery - just this "in and out" procedure.

The catheterization showed little urine in the bladder. But in the words of the LPN who administered the procedure, "It looked nasty." A culture was ordered, and we were told that there would probably be medication forthcoming... but not until Monday.

Meanwhile, Mam-ma began to complain of burning and being uncomfortable. The nurses kept telling me, "The doctor cannot prescribe any medication until the cultures are conclusive as to which bacteria is involved... and that will take 3 days." It took roughly four, since the pharmacy that serves the facility did not deliver any medication until late Monday night, and somehow there were no orders from the nurse (or any that were seen by an aide) for the medications to be administered. I now have a box of AZO tucked away in Mam-ma's bathroom that the LPNs or I can administer for the burning, if she has problems again.

In retrospect, this is what has been dragging my grandmother down for weeks. She had a UTI in late July/early August and was on antibiotics. When she became dizzy and disoriented in late August and we transported her to the ER, the attending physician's first idea was, "She has residual infection." But the labs came back clear. Now we realize that this test was probably a "dip stick" in a cup of urine... and without a culture, the underlying infection was not discovered.

At any rate, injections of a very strong antibiotic were ordered for 7 days, accompanied by 7 days of oral antibiotics and something for burning. And... over the weekend, the nurse telephoned and said, "We think Polly has pink eye. Her eye is red and swollen this morning. It's either that or allergies... or she slept on it wrong. We're ordering an antibiotic for that, too!" For seven days, Mam-ma took THREE antibiotics. Now she says she feels better from the UTI, but she is still trying to recover from taking so much medicine.

During all of this, we continued to keep Timothy a day or two here and there. One Saturday morning, I took him to his first birthday party... for a fellow daycare attendee who was turning three. This was a "prince and princess party" - about four little girls in princess attire, and two little boys. Timmy did not go in costume. The party was held at a local playground, and the parents had added a "bouncy castle" and a pinata, as well as a craft project, a cake that looked like something from the Food Channel programming, and party favors that went on for days. The bar is set high for future parties!

My 2 favorite boys... Timothy's
first football game!

Timmy had a ball, but he came home exhausted and really cranky and ready for a long nap. We've also taken him to a couple of local high school/junior high football games lately, and he has loved that... especially the band. It seems that we're learning to take him along wherever we go and continue with our plans as much as possible... knowing full well we may be leaving early. One night we didn't make it to halftime... Timmy fell asleep in my lap during the 2nd quarter!

With the routine of daycare and my sister's job in place, we were actually able to take a few days to help with a conference that was held in our community by the company we developed and sold six years ago. We still stay in touch with the new owners and try to keep up to speed on what is happening with our "baby," and this gave us a chance to renew some relationships and see firsthand how the business is doing today. But it was a hectic, tiring string of days/nights, and then it was back to our "routine" with our own family and household.

After several days of bouncing back and forth between caring for Timmy and seeing about Mam-ma and the conference, I had a chance this week to finally work on our house and get it cleaned and back in some semblance of order. I realized that it had been several weeks since I had actually done laundry for us, so that in itself took a full day or more. When you are washing towels and baby clothes and pajamas every day or so, it is easy to lose track - until you don't have any clean underwear!

We kept Timmy for a couple of days last weekend while my sister worked, and all day Saturday, he was fine. Saturday night we were watching videos on the computer when he suddenly erupted... vomiting everything he had eaten for three days, it seemed. Greg helped me get him stripped and to the bath tub, then watched him while I changed MY clothes and cleaned up the mess. Yes, if you are following this posts, this is twice this month that we have had these events.  This little boy has had a rough few weeks!

After that, Timmy seemed subdued, but okay... until the next morning, when he was sick again. I watched him closely all day and monitored his food and drink, but by Monday morning, he was better and fever free, so I took him to daycare. He did pretty well all day, but that evening, my sister said he threw up all over HER... her first foray into this side of our precious charge! Bless his heart... he is so pitiful when he's sick... and it scares him - he does NOT understand what is happening. My sister had Tuesday off, so she kept Timmy at home and made sure he was feeling better.

I managed to get our house cleaned, laundry washed and ironed, and everything in place before the weekend. Greg had cousins visiting from out of state, and we were planning to spend time at with his family. I made a visit to the ALF to make sure Mam-ma was okay. I picked Timothy up on Friday afternoon at the daycare and brought him to spend the night with us. Greg's family came to our house for a visit and take-out pizza, which made it much easier with the baby. Yesterday we went for a brief visit at Greg's brothers... Timmy in tow... before my sister picked him up when she was finished working.

Today my mother has taken my grandmother for an afternoon drive to see the fall color, which will help her spirits tremendously. Tomorrow, Timmy will Trick-or-Treat at her apartment (I left candy there for her to give him), and next weekend, we will take her to lunch to celebrate her 99th birthday on Saturday. I am hoping that the days in between will be uneventful. The doctor will return for a monthly visit on Friday, and I anticipate that he will declare her to be greatly improved... if not completely well.

I feel like for the moment we are settled into something of a routine... helping with Timothy as needed while my sister works... checking on Mam-ma several times a week... and trying to have a life in between. My husband is so good to go and visit my grandmother, refill her bird feeder, and spend a few minutes with her - just the two of them. She loves that. I already know of at least two people who are planning to visit her from out of town on her birthday, and that will be huge, also. For now, we're trying to make the most of every day... savor the special moments with our little nephew AND my aging grandmother. So far, so good! Yeah, what am I saying?!

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On another note, I still have some checking to do, but it looks like I will not have to change Medicare Part D Prescription Drug Insurance providers for the first year since the program was implemented! Thank you, LORD!!! I think I have had five providers, so far...and that doesn't count the one that Medicare so nicely switched me to on their own the first year! (I got it switched back, since their plan covered virtually NONE of Mam-ma's drugs!) I am glad that at least once, it looks like I won't have to go through all of the shenanigans that are involved to transfer to yet another provider. I will make a call to the pharmacy to doublecheck this tomorrow, but it is looking pretty good at this point! Yippee! See how little it takes to make us Sandwich Generation "fillings" happy?!

AND... a cousin recently suggested to me that I needed to have a DNR order handy for my grandmother, so that no heroic measures will be taken to keep her alive, should something happen. These are her wishes, and I mistakenly assumed that the Living Will covered this. It does not! So... we now have a DNR (Do Not Resuscitate) order on file at the ALF, along with a copy of her Living Will. With both of these in place, no life-sustaining measures should be enacted, were she to have a stroke or heart attack, etc. If you do not have these documents for your aging loved ones, I encourage you to get them. You can download the forms online, or talk to your attorney and ask him/her to supply them.

I talked with Mam-ma about the DNR paper to be sure these were her wishes. She insisted they were, saying she did not want to be a vegetable. "And besides," she added... "the sooner I'm off your hands, the better!" I told her emphatically that she is NOT "on my hands," but I had assumed she was after a "one-way ticket." She said, "Well, I AM!" Gotta love my grandmother!

I hope things are well in your "Sandwich" this week!