March 17th, 2010 Mom had her next dose of chemo scheduled. Auntie A had gone home for a few days after Mom got home from the hospital but she was back again before the next chemo a week later. We were all nervous about how this one would affect her. Mom was determined to go ahead no matter what and the doctors kept the orders in her file. Auntie A took Mom to the appointment and took her home to rest. Mom insisted on going out the next morning for breakfast and keeping as normal a routine as possible. Home care kept a very close watch on her with a nurse coming in every day to check her vitals. Everyone knew what to watch for and knew they had to get her to a hospital in a hurry if she exhibited any of the same symptoms as the last time.

Within a few days those symptoms had returned. Her intestines had stopped working again, her white count was dropping and her body was shutting down. But my Aunt was able to get her to the hospital without an ambulance. And we started again. The weekend doctors said there would be a CT Scan done to find the blockages and figure out what to do next. The CT Scan didn’t happen and we weren’t getting any answers. Her doctor was gone for a few days so we had his colleagues. By Tuesday I was frustrated by the in-action. I had requested that if there was something they didn’t want to discuss with my Mom directly they should contact me. But they didn’t so on Tuesday I took a half day off from work and I called Winnipeg Oncology and asked for some advice on how to handle the situation. Winnipeg said to request the CT Scan and let the doctors know that if they have any questions in regards to my Mom’s care they should contact her directly. So I went back over to the hospital and had a meeting with the doctors in Mom’s room.

I went through the issues and asked what we were to expect? Would this cycle continue? Was there something that could be done to prevent the cycle? When was the CT going to happen? And the questions went from there. She had a CT later that day and we had another meeting with her doctor when he came back. I requested to talk to him with my sister. I asked him what we were really looking at. Do we bother looking for a new apartment without stairs? Will she come out of the hospital? Do we look at long term care? Being completely honest, what did his gut say about how long she had? His answers: Best case scenario a year, more likely 6 months. Yes, get her an apartment. Sign a year lease but be prepared. The cycle will continue with her intestines. Discuss the future of chemo with her oncologist.
After that conversation I knew that we were on the down side and we were sliding. We began grabbing on to whatever we could to slow down the decline. And we didn’t tell Mom anything that the doctor had said. Number one rule for me was no matter what happened outside her room I put on a smile when I stepped inside. The most important thing was keeping her spirits up and it got tougher by the day. That stretch in the hospital was the longest in the 18 months. And she wasn’t happy about it.

She had an oncology appointment in the city in mid April. Even after a month in the hospital we weren’t sure if she would be able to go. She was just too weak. But she was determined and wanted to go even if it was on a stretcher. And so that’s what we did. The ambulance took her and she lay on a stretcher throughout the appointment.

The original agenda for the appointment had been to discuss further chemo and the possibility of surgery for the breast tumor they hadn’t even touched yet. As well as options for helping to keep her intestines from closing, but it was pretty evident that it was due to tumor growth and the options were there to make my Mom feel better. They weren’t realistic. When the doctor saw my Mom the appointment changed drastically. The agenda was suddenly about whether to continue chemo at all and putting everything on the back burner. The oncologists were amazing and very good at deflecting and redirection. Basically, she told Mom that she had a rough go as of late and maybe it would be nice for Mom to have the summer off from treatments. We could revisit everything in the fall. She wanted Mom to enjoy the summer and asked what plans we had and encouraged the family visits. Mom thought it was great. I don’t know if she had any clue that the doctor didn’t expect to see her in the fall. This was the doctor’s way of letting her down easy. Quality of life over quantity was the buzz phrase of the day. Mom seemed relieved. They gave us instructions on how to handle things if Mom’s intestines weren’t working when she went home. And gave us the after hours number just in case we needed anything.

I went home thankful for the chemo being stopped and hanging on to our plans for summer. But first we had to get through the next month of Mom being in the hospital. That wasn’t going to be easy.

Over the next few days Mom was very confused off and on.  The St B hospital is a catholic hospital so every room has a crucifix.  One day when Mom was confused she pointed at the crucifix and told us that as long as she saw the crucifix she knew where she was.  I was glad that she had found a point of reference but it was sad to know that she had to.  And after that I would catch her looking up at the crucifix every so often.  A day or two after she arrived at St B the same nurse that had been there the night Mom was admitted came in to see her.  She was so relieved to see that Mom was improving.  The nurse said that when she heard that Carole Pearce was coming up to be admitted she had said, “Oh no, not Carole.”  She had been so upset that Mom was back and then when she saw her that night she hadn’t thought Mom was going to make it.  She had been so worried.  It was comforting to have these incredible nurses that truly cared for Mom.

Mom had some more ups and downs over the next couple of weeks.  Her hemoglobin dropped enough to have a blood transfusion and after having continued issues with food and keeping it down she ended up on what we affectionately called “pudding”.   “Pudding” is a bag full of milky liquid IV nutrient that I nicknamed pudding when I saw that Mom was down one day.  There were days where we got so desperate to raise her spirits we tried anything.  So I asked her if she like the pudding or if we should request to have chocolate or strawberry flavoring added.  It was a cheap try but I could usually get a small smile out of her as I changed the idea of the pudding.  There were a lot of dark days during those weeks.  There were days where I would talk to my Aunt or I would go into Mom’s room and I would know who she needed to visit.  I would call in “the troops” or the “heavy hitters”.  We just weren’t enough some days.  She needed pastors, mentors, family, old friends, funny friends and serious friends.

I also got Mom a little upset by asking to speak with the hospital social worker.  Okay so Mom was a little more than upset.  She was mad.  I had requested that my asking about physical and occupational therapies be kept private but they had to make her aware and I get it.  But boy was she mad.  She just couldn’t understand why I was concerned.  I just didn’t want her going home and not being strong enough.  I wanted to know if there was more we could do for her at her apartment to make her life easier.  But she was absolutely determined that she could do anything if she was in her own apartment.  But I still requested that there be full assessments completed before she was released to the Steinbach hospital again.  And I requested that one of the Oncologists meet with us in her room to be sure of where everything stood.  I made sure I was at the hospital for the assessments and Mom glared at me, made snide comments, and was very nearly rude to the therapists.  She just didn’t see the problem; or did see the problem and didn’t want to face it.  I wanted to know that she could get up the steps into her apartment.  She thought that saying that she could should have been enough.  I just didn’t buy it that time.  She was so much weaker; so much more vulnerable.  I just hoped that at some point she would understand why I had done it.  The months from January to May of 2010 were incredibly difficult;  one rollercoaster after another one.  And even after she was released from the Winnipeg hospital and then the Steinbach hospital it wasn’t over.  Her next chemo was a week away on March 17th.  And we were all scared.  The game had permanently changed.

8:20am on Friday morning.  I had only been at work a few minutes and the phone rang.  My Mom’s number popped up.  My stomach dropped and I froze.  I knew something was wrong.   I picked it up and my Aunt said that she had just called the ambulance for Mom and she was heading over to meet her at the hospital across the street.  Mom hadn’t been able to eat or drink and if she did she threw it up.  She was hardly able to get out of bed or sit up.  She was getting weaker and weaker after having chemo the day before.  Her bowels weren’t working.  The nurse had come that morning and Mom had just gotten up but could hardly walk.  So the nurse got Mom back to bed and ordered her to stay there.  She did her vitals and went out to talk to Auntie.  After some questions and answers whispered back and forth the nurse said, “Call an ambulance or she may not make it through the day.”  Auntie told me that I didn’t have to rush.  She would keep me updated.  My Mom’s other sister and daughter was coming to visit that day and it was too late to call and let them know.  So at least Auntie A would have some company and they could be with Mom as well.

I got off the phone and got as much work done as I could, called Pasith and daycare to make pick up arrangements because it was my day to pick up the kids after work.  I didn’t know what was going to happen or how long I would be gone.   I left work by about 11:30 and raced the 45 minutes to Steinbach.

Mom was still in the ER.  Both of my Aunts and my cousin were there.  It was comforting to have the extra family with us.  I went in to see Mom and she knew I was there but wasn’t really able to speak.  They had an IV pushing fluids in as fast as it would go and they were waiting to admit her.  The four of us took turns going back and forth for the next while between her and the waiting room.  The nurse that had seen her at home that morning came to check on her, which we really appreciated.  Mom finally got a room sometime in the afternoon.  She was so severely dehydrated but throwing up as soon as she ate or drank anything.  The nurse gave us some pudding to try around supper time.  I will never forget how scary it was to see my Aunt feeding my Mom because she was too weak to lift her arm to hold the spoon or sit up.  I had seen my Mom in rough shape but never this weak.  I stayed the night at my Mom’s with my Aunt.  She said I could go home but we were still so nervous about what was coming next.  I didn’t want to drive all the way home just to get called back again.  It was a very uneasy night sleeping at my Mom’s that night.  We both just waited for the phone to ring.  But thankfully it stayed quiet.

We spent the next day with Mom in the hospital and she got better as the day went on.  The IV fluids and nutrients were finally helping.  But she was still not able to eat anything and her bowels weren’t working.  They tested her white blood cells to see where her immunity was at and she was okay so far but they knew it was going to go lower before it went up so they were waiting for the reverse isolation room to move her into.  It was a room to protect her from the rest of the people with its own ventilation system.  I went home after lunch.  Pasith had the kids at work with him at the store.  Alex being 3 Pasith was anxious for me to pick them up, rightfully so.  I talked to Auntie that night and Mom had been moved.  The nurses had attempted giving her broth to drink a few times but she was still throwing up.  And they were talking about having to put the nose tube back in to empty her stomach.

I went back on Sunday morning for about 9am.  Mom tried broth again and hoped that it would stay down.  She did not want that tube again.  She still wasn’t getting out of bed except to go to the bathroom.  And they warned us that she wasn’t out of the woods yet.  It depended on if she could keep liquids down and how low her immunity dropped.  I left for home just after 4 with a very uneasy feeling.  But I needed to get home to my family. I had hardly seen them since Thursday night.  But my time at home was very short lived.

Mom was expected to stay in the hospital for 5 days but she had a harder time recovering this time and ended up staying just over a week in Winnipeg and almost 2 weeks in Steinbach hospital.  Her confusion had been taken care of but her incision wasn’t healing as quickly as it had the last time and her strength wasn’t what it had been.  She was up and walking but not quite as far and a little slower.  But she was determined that she could do everything she had done before and she was going to prove it to everyone.  Especially someone who said she couldn’t.  She fought the decline of her body at every turn.    Food was her greatest issue.  Her intestines had to get used to working again after the colostomy and reversal.  So they had to ease her into eating solid foods very slowly.  One misstep and she would be back to ice chips and the tube down her nose that she hated so much.  And when she got to Steinbach hospital she had a setback do to the food that was given.  There had been miscommunication between the hospitals as to what she needed.  They didn’t have to put the tube down but she was back to broth and jello for a while.  So she was there longer than the expected few days of “step down”.  And it affected her strength once again.  Her body had been knocked down again.  The discussion concerning whether she needed a walker or a cane came up but she fought hard to prove that neither was needed.  She would walk on her own.  And she did.

Mom finally went home in the first week of February and she was so happy to be home.  She lived on the upper floor of a four plex so she had about 4 steps to get up to her apartment.  The front door had the steps on the outside of the house so we put up a sign requesting that everyone go to the front door so Mom didn’t have to go down the stairs to let them in.  She was very weak when she came home and Auntie A was staying with her to be sure she was all right.  Home care was stepped up with a nurse coming at least once a day to check on her incision.  Mom was determined that she was going to do what she wanted.  Her life would return to what it had been.  She wanted to go for breakfast with her friends.  Auntie A obliged one morning that week.  But Mom wasn’t returning to her normal.  She wasn’t able to eat much, she had to be very careful to not be sick.  She wasn’t getting stronger.  Auntie A, along with the rest of us, was very concerned.

At the end of that week Mom had a chemo appointment.  The Oncologist had made the tentative appointment with the condition that Mom was up to it.  But the communication didn’t get to the Oncologist that she had been in the Steinbach hospital as long as she had.  Or that her condition was definitely not up to having chemo.  But Auntie took her to the chemo appointment thinking that they would take one look at her and send her home.  Mom was determined that if they had made the appointment she was ready.  She would not accept the fact that she was not well enough.

Auntie drove her across the street, Mom went up the elevator and she was almost too tired to sit.  They laid her down for her treatment and did some preliminary checks and Auntie A went to get some coffee thinking that she would be taking her home when she got back.  She didn’t think there was any way that they would deem that Mom was fit for the treatment.  But when she got back the treatment had started.  Now, I want to be clear that none of us hold the nurses or anyone else responsible for what happened.  They were following the orders that they had been given by Oncology in Winnipeg.  And Mom could be very convincing.  I’m sure she told them how wonderful she felt and how great everything was going.

My sister called me that night to tell me what happened and how upset my Aunt was.  My Mom had gone home and basically stayed in bed the rest of the day and couldn’t eat.  And Mom staying in bed was a bad sign.  Before the last 2 months of illness there were very few times that she laid down during the day.  She was always up, even if it was in her recliner.  But she felt it was a sign of weakness to lie down so all of us took this very seriously.  But it would get worse.

6 am on Thursday, Jan 14^th, 2010 I’m standing in the dim light of the St Boniface Hospital atrium.  I’m waiting for my Mom and my Aunt to arrive for my Mom’s surgery.  I’m looking around concerned that something happened; I’m not used to arriving anywhere before my Mom.  She was always early.  Then I hear my name, which being Lisa is pretty common, I look around but I don’t see anyone that I know so I assume that it is another Lisa.  As I scan the atrium I see someone walking toward me with a big smile and slowly realize that it is my Mom.  I didn’t recognize her.  I felt awful and tried my best to cover for myself.  She was happy, excited about the surgery that would reverse her colostomy.

We got through the pre-op all right.  The doctor was joking and made my Mom at ease.  He was very good at that.  My Aunt and I sat through another surgery, but this time it was during the day and this time we didn’t lose her.  Mom came through the surgery very well and they were able to accomplish everything they had set out to.  Mom’s body wasn’t quite as strong as it had been during the last surgery but she seemed to be coming around pretty well.  She needed a little more meds and she wasn’t up and around quite as quickly.  She was a little confused off and on.  We weren’t sure if it was due to the medications she was on or if her nutrients were low.  At the time we took it in stride but now as I look back it haunts me.  The confusion was what she always wanted to avoid.

She was all right until Saturday evening.  That was when the confusion seemed to take over.  My Aunt had been at the hospital until late afternoon, and then I came to take over for the evening.  Mom seemed okay until the nurses tried to get her ready for bed around 9:30.  I had just called home to let Pasith know I would be home around 10.  There were visitors in the next room that were a little loud and for some reason this set Mom off.  The nurse came in and Mom accused her of being an imposter.  She was the same nurse Mom had seen for the last few days.  Mom wouldn’t allow her to come near her.  Mom was also very angry about the voices coming from the other room.  A second nurse came in to help out.  But still Mom wouldn’t allow them to come near her.  “Anyone could put on that coat.  How do I know you’re really a nurse?  How are you going to prove it?  Who are you really?”  Mom was looking to me to confirm that these nurses were imposters.  So I had to ride the line of not upsetting her but also work with the nurses so they could do their job.  I tried to tell Mom that these women really were nurses and that I remembered them from before.  I tried to convince her they were safe.  Mom wasn’t buying it.  So I asked the nurses to leave for a minute so I could talk to her.  I asked her to trust me.  “No.  How do I know they are nurses?”  So I asked her, “What if the nurses are able to get the noise to stop next door?  Then can they get you ready for bed?  I will stay right here and I’ll make sure that they don’t do anything wrong.”

I went out in the hall and discussed the deal.  They agreed to send the visitors home and asked me to stay the night.  I said that I would see if Mom’s situation would change by 11.  If she was still out of sorts I would stay.  Mom kept asking the nurses who they were and gave them a little grief but they finally were able to do their job.  They asked me again to stay because Mom was still very distrustful and had tried to get out of bed.  So I called Pasith and said that I wouldn’t be home that night.  The nurse brought me a cot and I settled in for the night.  Another issue was that I had a really bad cough at the time.  I had tried everything to get rid of it but it just wouldn’t go away.  So now I have to sleep on a cot in my Mom’s room and hoped and prayed that I wouldn’t cough too much keeping everyone up.

Soon after I laid down the first time I heard movement and jumped up.  My Mom was sitting up and moving her legs over the side of the bed.  I asked her if she was okay.  She said, “I need to go to the bathroom”.  I said, “No you don’t.”  She had IV and a catheter in.  “How do you know?  I need to go to the bathroom.”  I walked over to help her back into bed, stifled a giggle and said, “Mom, you have a catheter in so you don’t have to go the bathroom.”  “Oh.  Well I didn’t know that.”  And we both went back to bed, for another half an hour.  And for the next 8 hours she woke up every half an hour and tried to get out of bed.  Another frequent conversation that night was, “Where am I?”  My answer was, “St Boniface in Winnipeg.”  “I’m not in Steinbach?” “No Mom, you’re in Winnipeg in the hospital.”  “What happened?”  “You had surgery and you are okay.”  “Am I in Steinbach?  Where am I?”  My Aunt came in around noon on Sunday to relieve me.  My cough was the least of my problems that night.

I was dreading Christmas this year and the all too familiar anniversary grief.  I really didn’t want it to ruin Christmas for my husband and kids.  I didn’t want to be the “downer” at every event and yet I know that I need to give myself the freedom to grieve.  It’s a fine balance.

So, having a family get-together yesterday on the anniversary of my Mom’s passing and in Steinbach no less was very daunting.   Could I deal with it?  Would I make a blubbering fool of myself?  Should I even go?  But I was determined to be there for my husband and kids.  So I arranged to have time for myself for several hours during the day and decided to go.  Driving into town was difficult.  I felt like I went back in time.  It was last year all over again, just without the snow.  Drove past the funeral home and then her last apartment and I could feel the anxiety rising.  I had told my husband that if I needed to I might just leave for a bit to have some time alone but I made it through with just a few quiet times downstairs.  My husband’s oldest brother came down and told me that my Mom was on his mind for the last few days and we shared a few tears and a few stories when I confirmed that it was the anniversary.  He had gone to visit my Mom several times in her last few months and my Mom loved it.  He brightened her day, and wore yellow; her favorite color.  My Mother-in-law and I also shared a hug and a few tears.

When we left and drove back through town was when I started to see it.  I was saying to my husband that I was just so happy to be going home with him opposed to last year when I had stayed at my Mom’s apartment with my Aunt.  And I started to think of the days to come this week compared to last year.  I’m not making phone calls and planning for pall bearers, I won’t be at a funeral tomorrow etc.  And I realized that it is all better from here.  Every day this year will be better than last year.  The pain and grief will be less every day.  I have faced the worst of it and survived.  I know that I will still miss her and there will be tough days.  But I also know that I am moving forward.

I see the light at the end of the tunnel.

This is the eulogy that I wrote in the middle of the night and read at my Mom’s funeral on December 20th, 2010.  I have split it into 2 parts:

How does one describe Carole Pearce?  I think everyone here could come up with some pretty good stories.  But, I think in the end we would all agree on some basic truths about Mom.  Faith, Family and Humor.

Mom’s faith led her down many paths, some led to joy and some led to incredible pain.  She trusted that God had a plan, even if he wasn’t willing to share the plan with her.  Mom had a faith-filled upbringing that I believe gave her strength when she needed it.  She didn’t just take the strength, she lived her life in a way that showed where her strength came from.  She never pretended to live without God’s help and intervention.  She even went against her life-long creed, “I will never marry a farmer.”  She trusted that it was the right thing to do.  And the decision to marry my Dad led to new and exciting experiences, like driving a grain truck down a steep hill towards a slough; with my Dad guiding her, and possibly having a few chuckles.  She had an incredible life ahead of her with everything she could have ever hoped for.  She had been faithful and it had come back to her.

Then after just 3 years it all exploded and her life was never to be the same.  I’m sure she questioned why many, many times.  But, she still trusted God to bring her through.  She had insurmountable challenges in the first 6 months with trials, lawyers, farming, an auction sale, a toddler and an infant.  She had unified support from family and the community that she knew was sent by God to help her through.   She also used her experience to help others.  She wrote letters of forgiveness and had open communication with men who were her potential enemies.  Partly due to Mom’s generosity of spirit, both of these men are now Christians.  One is a full time councilor in a halfway house; the other is still working out the kinks but is trying.  Mom went where she felt she was needed to speak and inspire people to face their fears and their enemies.

Since Mom became sick in June of 2009 she began to pray like never before.  She would wake in the night in the hospital and whoever popped into her mind she would pray for them.  She felt she still had purpose as long as she could pray and tell people what God had done for her.  In her last few weeks she was unable to get out of bed or control much of her body.  But she could pray.  We would hear her praying all times of the day and night.  Sometimes it sounded like a conversation and she would tell me, “I’ve been talking to God today.”  And I would say,”And what did He have to say.”  Her answer would vary but it always came down to, “He knows everything so I don’t have to.”  Her last audible word was “Amen” in the middle of last Wednesday night.

Music became her refuge in the hospital and at home this past year.  She loved music.  She grew up surrounded by music and married into a musical family.  One of her favorite memories of my Dad was when he would go to the nursing home with his guitar on a quiet afternoon and he would sing for the residents.  So, we made sure she had music 24 hours a day, if necessary.  It helped give her peace.  And some of her favorites were played during the viewing tonight.

Mom used her gift of sewing to bring clothing and smiles to the needy.  Last year she sent children’s t-shirts to a Northern reserve as well as to Mexico.  She finished the last one right before her first visit to the hospital.  This year she really got into making the little animals that we have on display.  She would give them to babies at church and anyone that she knew that needed a cuddle, even a few adults.  The last batch she made went in the Christmas shoe boxes to Haiti in November.