Pancreatic Cancer: Our Story

8 04 2013

cancerPart One

This blog post has three parts to it. This “Part One” post is about the journey I walked through with my mother who lived with and died from Pancreatic Cancer. It is mostly the practical facts of our experience. I will describe our journey with as much detail as I can, as I was her caregiver throughout. What happened to us? What did it look like? How did we handle the different stages? My goal is to leave a record for anyone who might find this kind of information helpful.

 “Part Two” is simply titled “Living Well/Dying Well” and is more about how she handled the dying process on a personal level.

“Part Three” is her life story.

 “Part Four” is a Mother’s Day tribute to my mom, whom I always have, and always will think of with the greatest amount of respect and love.

 

* * *

Every Story is Unique

This is complicated. Even as I begin to write on this topic, I am aware of the many variables present when a diagnosis of “Pancreatic Cancer” is made; everyone’s situation, everyone’s possibilities are different. Sometimes there is a surgical option, sometimes treatment; sometimes the inexplicable happens and a person turns around and is made well: miraculous.

All I can do is tell our story and reflect on what I would have done differently if I could have (I call these “do-overs”).

It seems fitting to tell you the end already: my mother passed away on March 11, 2013 sixty-four days after her diagnosis. At the beginning of this, the doctor’s estimated two months. That they ended up being right still makes me shake my head; how could it all happen that fast? The rapid progression of mom’s Pancreatic Cancer still baffles me.  We did not “walk” through it, we sprinted.

Early on, some said, “Never let anyone tell you how long a person has to live. So much depends on their attitude, on their sense of contentment, on their previous good health, on their faith, on the amount of goodness around them…” and that sounded hopeful; preferable. My mom had a phenomenal attitude, was the epitome of contentment, was physically fit, had an abiding faith, and had great amounts of joy and fellowship. I wanted to believe this would lengthen her stay.

My uncle, however, took me aside and said, kindly but frankly, “Teresa, if this is Pancreatic Cancer, things may go very quickly. I have had friends who have died from this. If it is, don’t wait: go through pictures, work through her story with her. Don’t delay because it could be a matter of weeks.” I heard his words, I took note of them, but I couldn’t wrap my head around them; mom looked so healthy.

Then, a short time later (after we confirmed the diagnosis), I was in the grocery store and an acquaintance was in front of me.  We made small talk and then the conversation turned to how, as a family, we were dealing with my mom and what looked like Pancreatic Cancer. “Oh,” she said softly, “My mother passed away from that.”  The line-up was slow, and even after I was done packing my groceries, she stayed and told me her story. Three weeks after her mom’s diagnosis, her mother had passed away.

For these two warnings, I am SO grateful. It put me on my toes, it made me ready for what could be the truth for us as well. It made me think about everything we should do before we couldn’t do it, say before we couldn’t say it; prepare ourselves for before it would all be upon us.

I will describe the more personal journey in the “Part Two: Dying Well” post, but I wanted to start this post off with the cold reality that Pancreatic Cancer, in our case, raced into our lives and left us breathless at the end. It was sixty-four days from start to finish.

It really was.

When We Noticed

My mom lived a healthy life. She wasn’t a smoker or a drinker. She was fit and paid close attention to what she ate and how she treated her body. My mom loved to work! She was constantly gardening, fixing something up, tending to the house. My mom had just turned 75 but you would never have guessed that she was. She had few wrinkles, great skin, and a rosy glow about her; in a day she got more done than people half her age.

For the past 15 years we had lived together, my mom and our family, making seven people in total. This in itself was healthy! We had tremendous joy living together; it was always alive and lively and we really lived together: sharing meals, running errands, splitting the chores around the place, going on vacation, working side by side in the same church. She had a lovely suite downstairs and her grandkids (they had grown up with Grandma and were now in their teens) always popped in when she was down there; the door was always open.

She lived well and loved well, serving in her community and church and maintaining an optimistic and faith-filled attitude.

And then she got an ache; a little discomfort.

It was in her upper abdominal area. Just a little something she noticed. This was mid-December 2012 and she decided to go to the doctor.  The doctor didn’t think it was much; but before she walked out the door he said, “Maybe we should get a CT scan just to be sure.”

So she had this scan done before Christmas. The doctor’s office called her after the scan and felt they needed to redo it, but it was during the holidays and she delayed it a week to be with family, up on the ski-hill. During that week she commented about the discomfort; that it made her feel a bit off, a bit nauseous.

Just a bit.

Is This Something?

When we got back home mom, who had always had a high pain tolerance, was in more discomfort. Mom seldom described things as “painful.” For something to be painful it would have to be broken, bleeding, or both. A date had been set for a second CT scan but as we talked about it as a family, we decided not to wait. If mom, who never complained about anything, was complaining it meant a trip to the emergency room. We had to see if this really meant something was up.

Off we went and six hours later she was admitted. During that time they had done some blood-work, and the CT Scan. The doctor who admitted her looked sympathetic; what did that mean?

Mom was in the hospital for a day or two and in good spirits, as always. She commented more than once that she was enjoying the hospital food; so this tells you a bit about my mom: happy wherever she was. She was making conversation with other patients, reading a good Biography. She was perfectly fine being there.

Then one night about 4 days in, a Saturday night at 9:00 p.m. a team of doctors came in and gathered around her bed. She was alone at this point. The doctors said they had some bad news. They said the scans had indicated some lesions on her liver and spleen and Pancreas. That it appeared to be cancer and it didn’t look good. They asked her what she would like to do at this point, continue with further tests (a biopsy, a bone scan) to see if treatment was an option, or go home.

Mom, trying to gather her thoughts, asked them what it meant; if she just went home and left it at that, what then?

They said at current course and speed: two months to live.

Do-Over: I want to say, first of all. I have a huge respect and appreciation for our Canadian medical system. I am incredibly thankful for what we have, so my “do-overs” are just that; things I would have done differently. People are fallible, systems are fallible, and my observations are from what I learned and are not written with a spirit of “blame.”

 So do-over one, if terrible news is about to come your way, you should never have to be alone. If at all possible: never.

 I felt so bad for my mom, alone at 9 p.m., not feeling well, ready to go to sleep, receiving such hard news.  To be surrounded by doctors at that hour and having to process some very serious information on her own just seemed like a misstep. It left her wide-awake, shaky, unsure. She asked for something to help her sleep and they brought some medication (it should be noted, mom hated taking medication unless absolutely necessary).

 My take-away, I should have communicated to the doctors and nurses that I would like to be present for any significant updates. I don’t care if you are 17 or 75, it is confusing when a lot of information comes your way, and a second set of ears is very helpful. Beyond that, someone should be there who can bring perspective and comfort.

 What Are Our Options?

The next day we heard the news when we visited her. It made us cry and then it put us into action. What should be the next step? The doctors mentioned further tests and that seemed wise. We didn’t really know the name of the “monster” and we needed to. Plus, mom did not want to say “yes” or “no” to treatment without all the information. She wanted the course to be clear; that it would be obvious either way.

Along the way, Mom asked for photocopies of all the reports (smart) and we emailed these to a family member who is a doctor. He just helped us understand what we were reading and gave some helpful ideas about what to ask, and what we could expect next.

Mom had more tests including two biopsies (the first one was inconclusive) and then, this is where we made a misstep.

A nurse came in and told mom that at this point she was free to go home; all the tests had been done and now it would be up to an Oncology team to be in contact and interpret the data and let us know where things were at. There was really no point in staying at the hospital, as the next step would happen in the cancer clinic. We would be getting a call in the next few days.

Do-over: If I would have a do-over, I would have had the overseeing or admitting doctor do the discharging. That way we would have known whom to contact if there was a problem. We could also have asked questions the nurses could not answer. When my mom was discharged and we got lost in the system, we didn’t know whom to contact. There was a list of doctors on the reports and none seemed to be “in charge.” If I had a do-over, I would insist on seeing “the” doctor before I would have let my mom leave.

 Better yet, I actually think it would have been smarter to have her stay in the hospital; the Oncology team would have been on-site and more motivated to see patients who are still in the hospital. I should have done that and it all would have moved along quicker; we would have had answers more quickly. One of the most stressful things that occurred through all of this was simply a lack of information/answers. Even if someone had called and would have said, “We know who you are, we are still waiting for reports, don’t worry we haven’t forgotten about you”…that would have helped.

How Important Is A Great GP?

In our case, we did get lost in the system. When mom left the hospital, it was like she disappeared! We were told she would be contacted in a few days, but two weeks went by. Reports were not being gathered, no one knew of her at the Cancer Clinic. Day after day went by and no one knew anything about her or could say if anything was in process.

Finally we were told that from here on in, she would need to work through her family doctor (her GP) and he would arrange the next steps. Time had already passed and if you are told you only have two months to live, every day counts!! We immediately made an appointment and would have done that earlier had we known.

Mom seldom went to the doctor; mostly to refill prescriptions here and there. Some time ago her GP had moved and she had “signed up” with a new GP in the area. She had commented that she had a hard time connecting with him, but didn’t make much of it since she seldom needed him.

When we found out that mom would need to now work through her GP, I went with her to two appointments to help keep track of information and make her feel more comfortable; both appointments were difficult, to put it mildly.

I won’t mention his name, but I questioned whether he was a doctor at all. This doctor was not like any doctor I had ever met: He was inattentive, disinterested, not forthcoming with information, made little effort to help mom understand the place she was in. I won’t go into all the details, but I walked away from his office terribly frustrated both times. He was the most unhelpful, un-compassionate, frustrating doctor I had ever encountered.

It makes me angry just thinking about how ridiculous those two visits were.

Things became so “out of order” when we were with him. Getting any information was like pulling teeth!  We knew next to nothing about the actual cancer mom had and whether there were treatment options, yet he was walking us through the stages of palliative care.

At the end of the second visit we found out he had talked to a specialist at the Cancer Clinic about mom and had not found this important enough to tell mom until I asked him to call them; then he admitted a conversation had happened. I was floored! When I tried to find out what the nature of the conversation was, he changed the subject…twice!

He strongly suggested mom sign up for palliative care and I turned to mom (again, we did not have any results from the biopsy and had no idea where we were at) and said, “Mom, don’t think of this as palliative care; think of it as getting a great team of nurses on your side to help us.”

What I didn’t realize until he sent us into the lobby is that I had to fill out a DNR form in order to complete the palliative care registration. What is a DNR form? I had no idea. I sat in the public waiting area of his office and mom asked me to read the details of the form out to her; I couldn’t make it!  Part way through I was sobbing: it was a “Do Not Resuscitate” form. I wasn’t prepared for this step at this point, I didn’t even know where things were at with her and we were being asked to sign forms about allowing her to die without intervention.

It was HORRIBLE.

I told my mom she would never go to see him again or deal with him at all. After some brainstorming, she remembered a doctor she had seen here and there when her former doctor was away. We asked him if he would see her and take her on as a patient and he did. I cannot say enough GOOD about him. He was exactly as a doctor should be: informative, straight-forward but also kind; he spent as much time as mom needed to explain to her what was happening to her body and what could happen.

He talked to her about other cases he had seen so she could compare different people’s experiences. He didn’t mince words, but he also spoke with great compassion.

He began to work for her right away, discussing the few symptoms she was already experiencing and prescribing medications she would be comfortable taking. He made sure every question was answered and went to work to make sure all paperwork would find the right person and that she would be able to get to where she needed to go, quickly.

He told her that whenever she had a question, no matter how small, she could come in any time. He would always make room for her and she shouldn’t hesitate to come. We walked away relieved, happy to have had an honest, full-length conversation with a great doctor who would go to bat for mom.

Do-over: Even if a person hardly ever goes to the doctor, it is important to have a doctor you respect, trust and who knows what it means to be an advocate for his/her patients. I saw so clearly how, one day, if you need that kind of help, you will want someone you know is for you and will work on your behalf and not treat you like you don’t matter. Don’t ever, ever stick with a doctor because you think he/she is your only option or that “you’ve come this far, it’s better not to change.” My quick answer: its better and healthier to change. Giving this guy two chances was one too many; it added so much stress to an already stressful situation.

It Is What It Is: What Now?

When we finally saw the Oncologist and her assistant, it was actually a relief. They told mom that she had stage four, Pancreatic Cancer that had spread to other organs. They said treatment might give her slightly more time, but it could also kill her. They said that with the liver in the condition it already was, the treatment would be miserable and she would spend most of whatever time she had in the hospital.

Mom saw this as a clear answer: no treatment.

They said that it is very hard to put a number on “how long” but it is a quick moving cancer, so a few months could be accurate.

Mom and I went home. We sat on her couch, looked at each other and cried. Not a long cry, but just enough to admit it was all happening.

Then we talked about care-giving. I had always said to her that, to the best of my ability, I would take care of her to the end and this was where we were at.

We had a terrific and open talk about how sickness and death are so often far removed from us, but that caring for the ill and dying in a family should be the most natural thing of all. We talked about how women all over the world care for one another and are not ashamed of their bodies; not ashamed to be seen by a daughter. We talked about how that is only strange here, but it shouldn’t be.

We talked about the realities of that; about what it might be like when mom would not be able to care for herself. Would I be OK? I assured her that if it got beyond me, I would get help.

This was an important, honest conversation and I switched a gear in my mind: get ready for the hill.

Symptoms: The List

We were told that when you finally have symptoms of pancreatic cancer, it has often progressed beyond what can be treated. This was the case for mom. When she noticed the discomfort in her abdomen it was because her liver was already affected and suffering.

Looking back, as her caregiver, I was always caught off guard by how quickly things progressed. We would treat one issue and at times this solution would last a day, or even less. Especially in the last 3 weeks of mom’s life, in the morning she would be one way and by evening she would be another.

Do-over: well, hindsight is 20/20 but I think if I had asked someone to map out a typical progression of this kind of illness, I would have seen that medical equipment would have been helpful; I would have picked up medical equipment earlier than later. I would have watched for certain symptoms instead of reacting to them; like difficulty swallowing, I didn’t even know I could face that and when it happened I was making phone calls to figure out what to do.

If only there had been a map to follow! But here again, everyone is unique. I scoured the internet looking for people’s experiences, but it was hard to piece together a plan when many people were dealing with symptoms from treatment, versus the symptoms that the cancer itself was causing without any treatment at all.

Even though everyone is different, maybe some of what I write here will be helpful to someone. Maybe it will help someone feel more prepared; I will try to describe her symptoms in the order they happened. Remember, this happened over a two month period, and during the last three weeks, changes happened rapidly:

  1. Her first symptom of Pancreatic Cancer was this dull discomfort in her upper abdomen.
  2. Then came nausea. In mom’s case, the nausea meant she lost her appetite. It meant nothing appealed to her. It meant occasionally throwing-up (only in the first few weeks after we received the diagnosis). The nausea, in her case was more annoying than “extreme.”  The doctor gave her a strong anti-nausea drug (which she cut in half) and this made all the difference. Eventually the nausea subsided. That medication was called Ondansetron.
  3. Itching…for a while mom was really itchy. Some of the medications she took helped with itch, but we found the most effective help was Benedryl Spray.
  4. Mom found herself “burping” a lot during this time. She would ask for some Gingerale and burp; she said it brought relief to her stomach. This only happened for a few weeks and then her stomach settled.
  5. The next symptom was constipation. Mom’s diet was so mixed up now as she tried to find things to eat (one day she would like something, and the next day she wouldn’t) that it threw off her digestive/bowel system. So we started on the laxatives (Senecot) and then adding a stool softener. We also made the “jam” recommended by the Cancer clinic, which was a mix of figs, prunes, dates etc. It was delicious (I liked it!) and helped a bit. We called it “Gram Jam.” When we finally got her bowel system moving, it was a celebration! Mom continued with the laxatives until she couldn’t swallow anymore; and by then laxatives were not necessary.
  6. Then came an inability to sleep well. Because she felt sick and because she was constipated which caused her more abdominal pain, it kept her up at night. The doctor prescribed a very low dose of Hydromorphone (1 mg, of which she took half) and Zopiclone (again, half) to help her to sleep. This worked well and if she was in more discomfort, we could double the medications and she would still feel clear headed during the day. Over time when we needed to increase medications, we were fortunate enough to be able to still keep her medications quite low. This was important to mom, because she still wanted to visit and make conversation and not feel too “drugged.”
  7. After our visit to the Cancer Clinic, we met with specialists at the pain clinic. They worked out a plan for mom to keep her as comfortable and coherent as possible. It ended up looking like this:½ hour before breakfast, she would take 1Metoclopromide (10 mg)At Breakfast: 2 laxatives, 1 stool softener, 2 Dexamethasone (which helped increase appetite, energy, and decrease nausea) 4 mg each.½ hour before she ate lunch, she would take 1 MetoclopromideLunch: 2 laxatives, 1 stool softener and .5 mg Hydromorphone (so she could have a good nap in the afternoon which would give her a nice evening and the ability to visit and get a few things done)Before bed: 1 Metoclopromide, 2 laxatives, 1 stool softener, 1 mg Hydromorphone, 1 Zopiclone.
  8. When mom could no longer swallow, we switched to butterfly needles (lines in her arm) which I describe later and narrowed her medications down to 3.
  9. Very soon after mom’s diagnosis I noticed a slight skin-tone change. She was just slightly yellow (this was from her liver malfunctioning). About two weeks later she was golden yellow and often the whites of her eyes would be absolutely amber.
  10. Mom’s nausea subsided so that she could eat very small meals, and was comfortable with more of a variety of foods.
  11. Now the thirst set in. This is a common symptom of pancreatic cancer. Water made mom nauseous so I tried a lot of things: lemon in the water, lemonade, ginger ale, grape juice. I didn’t think about this until later, but Zopiclone gives a person a metallic taste in the mouth. I should have asked for a different sleeping medication because I am sure this added to the difficulty of trying to find something that would quench her thirst. Dealing with thirst became a big deal as she was continually thirsty. A great thirst quencher I made was frozen juice. I would freeze juice in plastic cups or ice cube trays (she loved pineapple juice frozen) and break this up into small bits; this would really cool her mouth and quench her thirst. Sherbet was also good, anything cold.
  12. In trying different foods I found my mom loved sweet things and fruity things. Protein was harder to find. She loved the home-made protein shakes that I made with lots of tangy fruit (like raspberries). We never used the pre-made shakes that were recommended because mom didn’t like the list of ingredients (“full of junk,” she said). Protein shakes were easy to make, I used a vanilla flavored protein, and helped with her energy when she didn’t feel like eating anything heavy. It also made her mouth feel good, it made her less thirsty if I made them nice and cold. She drank them through a straw. Something that would have helped was a cup that did not spill easy. When mom was lying in bed and had a harder time sitting up, straws were great but even better would have been a straw in a cup that had a lid. Didn’t think of that then.
  13. Weight loss was obviously a symptom as well. With her ability to eat being irregular, she began to lose quite a bit of weight. By the end she lost at least 20 pounds.
  14. Dark Urine. This happened quite early in her cancer and really shocked her at first.
  15. I noticed mom’s vision getting more fuzzy. For several weeks we would meet with mom to hear her read stories she had written about her life, then she started asking me to read them. I tried to establish whether the words were fuzzy or if she was becoming confused about the words. It was a little of both; as time went on it was more of the latter, not really connecting with what the words were saying on the page. I noticed this in the lists she kept writing as well…repeated words, misspelled words. She was much more clear with verbal communication then she was with anything on the page after a while.
  16. Mom also started feeling very cold. This lasted almost to the end, we always had a plan to keep mom warm. My aunt gave us a lovely heated shawl, soft and warm, to put around mom’s shoulders. That was awesome as it had a low temperature so mom wouldn’t overheat. I would usually have it draped over her shoulders when she would be sitting, and when she would lie in bed if I would notice she seemed cold I would put it over her and it was so comforting against the cold, and it relieved some of her achiness.
  17. Over time mom had some back pain; apparently this is from the kidneys struggling. I would rub her back or put the heated blanket on it. Also the nurses said she could take extra-strength Tylenol along with her other medications which we did quite regularly about a month in.
  18. The next symptom was more dizziness, more being out of breath…more weakness. In a very short time she went from walking carefully, to not daring to walk unless she had an arm to steady her.Her suite was downstairs in our home and she loved her area. We brought up the idea of her moving upstairs, but at that point she thought she was still ok to be downstairs. I was bringing her meals downstairs and got more concerned. What if she fell? When would we notice? What if she needed me during the night but was confused about the phone or couldn’t read the numbers?One day I brought it up again and tried to have her picture what it could look like if she would switch rooms with our daughter whose room was on the main floor, across from our room. I told her that she would be on the main floor of our house, she could sit with us at mealtimes and come to the living room and visit or watch TV; I would be able to hear her at all times and especially at night. Suddenly she was ready and excited about it!The next day I cleaned out my daughter’s room, cleaned it from top to bottom and then invited mom up to see how she would like to arrange things. I held mom around the waist as we went upstairs; she was already pretty unsteady. It was the last time she saw her suite; she stayed upstairs. We moved up furniture and put a chair right by the window so she could look out. She was thrilled!
  19. Mom’s walking was the next thing to be affected. When she moved upstairs she already needed a walking stick to steady her. Then, after a very short time she needed a walker. She used the walker for exactly 1 day and by the next day she needed a wheelchair. It happened that fast. Luckily we had a wheelchair; my brother had used it years ago, so we were at least prepared for that!
  20. The Red Cross has a medical equipment-lending program for those on palliative care, and if I had a do-over I would get everything all at once because symptoms changed so quickly. I got a “bed bar” that slipped under her mattress and allowed her to have something to hold on to if she needed to sit up. It also helped so that she wouldn’t easily fall out of bed. I got bars that attached to the toilet that would provide something for her to hold on to, to help her stand. I got a portable commode. This equipment was helpful and I wish I would have picked them up right away because it would have been easier on my back as I helped her. I just didn’t know what I needed or how quickly I would need it.
  21. The next major symptom involved the bathroom routine. At first I was just helping mom get to the bathroom. I would guide her to the room and then there were enough things to hold on to that she was fine on her own.Then she needed help once she had gone, to just get to the counter to wash her hands; I would steady her and make sure she would not fall.Then when she was using a wheelchair, it was getting the wheelchair into the bathroom and helping her get to the toilet. At this point I was helping her pull her pants down but she could still wipe and wash her hands.Very quickly mom could not wipe herself and that is when I started using the commode. It was easier. I also had adult diapers on mom by this time, a pad under her sheet and a pad (vinyl on the back side and cotton on top) on top of her sheet to help maneuver her if I needed to (this was the nurses suggestion, I never would have thought of it).

    Then she became confused about the bathroom. I would get her to sit down (this was very difficult, I have to admit; it isn’t that I was carrying her, but she leaned so heavily on me that it was taxing on my back) and then she wouldn’t know what to do.One night mom was clearly uncomfortable, clearly had to “go” but wouldn’t go when on the commode. It was SO hard to get her to the commode that it exhausted me. And because mom knew she had to go, she would try to get out of bed; every two hours at night!  At this point I called our GREAT palliative care nurse and she said it was time for a catheter. She came and set it up and drained a liter out of mom! No wonder she was uncomfortable! This did the trick, now it wasn’t necessary to get mom out of bed. She also helped me give mom a sponge bath.
  22.  A note about a catheter: at this point mom was already taking her medications via a butterfly line (I describe that later) and a slightly higher dose of Hydromorphone. She was much less aware of her surroundings. So the catheter worked great for her (we only needed it for a few days, as it turned out), but someone told me that sometimes catheters make patients restless, making them feel even more like they need to go; so sometimes the nurse needs to insert it, use it to drain the bladder and then remove it again.
  23. About half-way through our 64 day journey I noticed a little bit of confusion setting in. One day I gave mom breakfast and she asked, “Is this breakfast?” The thing is, usually mom knew she was confused or knew she had mixed up a word. So if mom was confused, I would take more time to explain whatever it was and then she would know.  Thankfully she had a lot of clarity until about two days before she passed away, but the words didn’t always come out right, or she would be confused about details (for example I would say “On Friday your sister is coming to visit and on Sunday your son is coming over” – she had the hardest time keeping that straight even if I would write it down for her. So I learned to simplify my communication to one single detail).
  24. Less to say. As mom neared the end, she became quieter. Her eyes were bright, she would smile a lot, hug a lot, want to hold hands, she would clearly be listening; she just had less to say. And then suddenly, surprisingly, she would suddenly say something very important. Sometimes she prayed absolutely clearly, or would express a thought about God. She would say beautiful things to me and express her gratitude and blessed me and others. It was incredible. For that alone, I would never trade this experience.
  25. Eventually mom needed help with everything, including eating.
  26. About a week before mom passed away she was not interested in food anymore. She would drink some of the protein shake I would make, but that was it.
  27. Then it was harder and harder for her to swallow so I did not attempt food. She could drink until about 2 days before she passed and then I just tried to keep her mouth cool with little tiny bits of frozen juice or with a special swab the nurse gave me.
  28. A few days before she died, when I was worried about her swallowing (not only is choking a concern, but taking liquid into her airways was also a concern) the nurse came and inserted several small needles into moms arm (a butterfly needle I think its called) with a plastic cap on the end. Then she gave me a few bags of syringes without needles, color coded to the different lines in moms arm. I then could give her the medicine by screwing these syringes onto the plastic caps on moms arm and give her the medicine this way. At the end she took three medications: the Dexamethasone, Hydromorphone, and a sedative.
  29. When mom was healthy she was always a quick moving person. When she fell ill and was very weak, I was amazed at how quick she could still be at times. At night if she was confused and wanted to get up, she would be at the edge of her bed in a flash! It scared me every time!  And sometimes she didn’t understand why she would need to lie down again.  This happened 2 days before she died, every couple of hours she would do this and she looked so bewildered about it. I slept in mom’s room at this point so that I could catch her at this and she wouldn’t get hurt. Also her voice was so small at this point, I wouldn’t have been able to hear her. A baby monitor was suggested, but I really don’t think I would have heard her.
  30. I felt that mom’s care was getting to the point that I would need some serious additional help. I would need to hire a night nurse and have help during the day. I had been able to adjust my work schedule, but now I would need some day help so that I could spend a few hours at work and run other errands.I would need a hospital bed to save my back and to help mom.I would need day-time hospice help.And who knows what else!I lay in bed about 24 hours before she died and I cried out to God and said, “God, Mom has learned so much through suffering during her lifetime; I don’t think there is anything left for her to learn, is there? Now I have learned so much through caring for her every need, and maybe there is more for me to learn, I am sure there is! But I so desire for this home to not become a hospital. I don’t want mom to be surrounded by strangers or for her to just exist with no connection to anyone anymore; I am willing to do whatever you ask here, but Lord please, please just take her home.”The next day the nurse came and brought a sedative to give mom which would help her be less restless especially at night; she said it would calm those impulses to get up. I was so grateful because it was hard to see mom restless through the night and I was so tired from having to watch her so carefully at night. We discussed next steps and began to line up some extra care.She left and mom rested well that evening and night. I finally crawled into my own bed and slept very deeply, peacefully and that night mom passed away, in her sleep; a gentle end to it all.

A Quiet Morning, Mourning

In the morning, our family was home and we all spent time in mom’s room just crying and talking and being with her; there was no rush for anything to happen. My brother and his family came. Eventually the nurse came to take the needles and catheter out. She did so quickly and quietly and left; kindly and tastefully done.

We wandered in and out of mom’s room. Mom had written last words for everyone individually; people read their letters and it was beautiful. We just dealt with this new reality…slowly.

It was a perfect ending in an imperfect situation. God took her exactly when I could not care for her “alone” anymore. The people who had helped me were either family, or her wonderful palliative care nurse who just came in here and there to give suggestions and help with each stage; so tasteful and just such little touches.

We didn’t need to go to another level of care, and I was so very, very grateful for that.

The Part I Avoided

Then we had a funeral director come (the part I dreaded the most).

Do-over: If I had a do-over, I would spend more time picking someone who actually had gentleness and a respect in such circumstances. The fellow who helped us was quite abrupt and all business and it was pretty tacky.

But I had experienced what I had wanted to experience with mom and I just left at that point and went downstairs into her suite. I really didn’t want to see her body removed for my own reasons, and so Mike my husband dealt with this part.

Mom was now gone, physically, in every way.

She chose to be cremated and so that is what we did for her.

I divided her ashes into smaller containers and gave them to each person in our family who wanted to say goodbye in their own way. Over this year each will think about what is symbolic and meaningful, and either privately or with family or friends, scatter her ashes accordingly.

By the way, ashes have weight to them and a texture liked bleached sand; not flaky and light like campfire ashes, in case you are interested. It is a great reminder that we are all just “dust of the earth” but God owns the breath of life.

Mom knew this without a doubt and as a result had NO fear of death. One day during all of this, mom said, “I feel emotional today, I don’t know why.” How funny, actually. Here she was dying but didn’t understand why that might make her emotional! That is how secure she was in her faith in Jesus Christ. I told her, “Mom, you are grieving too…you are allowed to be sad.”

Sad. That is a word we so often use in these circumstances but it doesn’t really capture it. I feel a sadness, a wistfulness that sighs, “What? It’s over?” But I feel more grateful for her and for how she died so gracefully than I do sad. I feel so blessed; she blessed me. I feel equipped: mom equipped me for life. I feel privileged to have been the one to care for her until “death do us part.” What a privilege that was.

More about that in these two posts:

I hope some of this was helpful to you.

— Teresa Klassen

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7 responses

9 04 2013
Joy

May God bless you and your family….

12 04 2013
Living Well/Dying Well | OneBrownLeaf

[…] you read my previous post, you know that my mother passed away on March 11, 2012 of Pancreatic Cancer. For the past 15 years, […]

12 04 2013
Bev Johnston

Dearest Theresa – You have blessed me beyond words with both part 1 and part 2 concerning your Mom’s final days. Thank you so much for sharing her and your journey. You were (are) an awesome daughter and loving caregiver. You answered many questions that I had about the disease and about what it was like for all of you during a difficult season. Your clear and authentic descriptions have made death and dying much more “doable”, if you will. So often the unknowns make it more daunting than it needs to be. Your Mom made a very wise decision in accepting her diagnosis and choosing not to go through debilitating treatments. Of course some people choose them and it is rightly up to the individual. In her case, they would have made the journey harder for her and her loved ones. As Christians, I believe that God reveals to us when it is time to hold on to life and when it is time to go. After all, for the believer, there is much more life on the other side. Heaven with all of its glory, awaits. She was prepared to meet her Saviour, and that was the key. Being Home free of suffering is the more attractive option compared to a long struggle when no cure is in sight. You as family knew that and graciously allowed her to go sooner rather than later. What courage!
I will be printing out your blog and we will use it in the future to help others. We have dealt a lot with death and dying during our ministry and are appreciative of resources. Yours is one of the best! Thank you, thank you!
Love & prayers, Bev J.

13 04 2013
Violet: Her Life Story | OneBrownLeaf

[…] Part One: Pancreatic Cancer: Our Story […]

26 06 2013
Jenna

Way cool! Some extremely valid points! I appreciate you
penning this article and the rest of the site is also really good.

23 07 2013
TestoBoost

Greetings! Very useful advice within this post! It’s the little changes that will make the most significant changes. Many thanks for sharing!

24 07 2013
bone cancer statistics

Good information. Lucky me I ran across your website by chance (stumbleupon).
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