Reflection on Mom’s Last Days of Life – Filling in the Gaps

**Warning – this is going to be a long one!**

The last few days of my mother’s life were intense and busy which made it impossible for me to update the blog with many details.  I feel compelled to reflect on those last days here both for the purpose of filling the gaps for others and as a means of some added closure for me.

Monday September 9^th

I think I’ll back up to Monday September 9^th.  Although I did post some details about that day, I have since had the opportunity to talk about this day in more detail with Julia and the get a better idea of how that day went for mom. 

She was scheduled for her last radiation treatment for 1:30 PM.  They brought her down at 1 PM and Julia accompanied her.  Upon arrival to the radiation clinic, mom had her first major panic attack of the day.  Julia & the nurses managed to calm her down enough so that she could proceed with her treatment. After the treatment, as mom was being wheeled out of the treatment room, the nurse kind of casually said “I’m not sure if anyone told you, but the dr. would like to start with radiation treatments on your neck tomorrow.”  This comment sent mom into another panic attack.  From Julia’s perspective, this was the moment that mom seemed to be done with this part of her journey – done with fighting cancer.

Mom spent the rest of the day with her eyes shut and her behavior started to be more restless.  In hindsight, we believe that her “terminal restlessness” began at this time to some degree. More on that a bit later….

Julia came home after a long day at the hospital and a very difficult afternoon of caring for mom through her restless behavior. As she walked through the door of my house she fell apart emotionally, crying and saying that mom can’t live like this.  I consoled her and helped to calm her down enough to tell me about her day. We were both so worried about her that we decided to go and check in on her after we ate dinner.  We ended up spending about 1 ½ hours with her that evening to help her settle before she went to sleep.

Earlier that afternoon, the palliative care team decided to change her pain meds from dilaudid to morphine.  Although the dilaudid had been quite effective for her, they were hoping that by changing her to morphine she’d be less drowsy.  Mom seemed happy to try this because she had been having such a hard time keeping her eyes open all day.  Unfortunately, this only resulted in her becoming loopy & confused as opposed to less drowsy.

When we arrived on Monday evening, she looked up at us confused to see us there.  She asked what was going on to which we replied that she just needed to rest.  She said “I’m smarter than that you know!”  I think she thought in that moment that maybe the dr.’s had called us in or something.  Her comment made me smile and I explained “You are on morphine, so things are probably really confusing for you right now. Julia came home after being with you today and said you didn’t have a very good day (insert mom’s comment “no kidding!”).  We were worried about you so we wanted to come in to check on you.”  She said “Thank you.” As in thank you for being honest with me. As I said, we stayed long enough to help her settle for the night.  We were willing to stay with her until she fell asleep which she initially seemed happy about, but eventually she said she was ready to sleep and we could leave.  Many lovely little words were shared between the three of us in this time.  I think she knew somehow that it could be the last time she’d be able to express these things to us.  I have to tell you, it felt so wrong leaving the hospital that night.  In hindsight, I can see now how this was the beginning of the end.

Tuesday September 10

At around 7:45 AM on Tuesday, we received a call from the hospital. The dr. was concerned about her and thought we should come in as soon as we could.  Julia had just gotten up so she grabbed some water and something to eat on the run and left right away.  I had to get Anya on the school bus before I could join her at the hospital.  As soon as she left, I called Predrag at work and he said he’d come home right away to get Anya on the bus so I could leave sooner.

Julia arrived at the hospital around 8:30 or so.  The dr. took her into another room to speak with her. He explained that earlier that morning he felt as though mom might only have hours to live, which is why he had the nurse call us to ask that we come as soon as possible.  He had managed to get a chest tube into her with difficulty, but it had resulted in the removal of more than 1 liter of fluid buildup from around her lungs.  The removal of this fluid made it easier for her to breathe (somewhat) and now she looked a bit more stable, but he still felt that she only had hours to days to live.  He also explained that ordinarily someone having this degree of difficulty with breathing could only survive longer if they were put on a ventilator, although he was clear that this would only prolong her life and he didn’t think it was the greatest idea.  He wanted to know what mom’s wishes might be since there wasn’t anything in the file. Julia said that she felt it would be a bad idea to put her on a ventilator.

I arrived at the hospital just before 9 AM and had an opportunity to see the dr. as well.  Between him & Julia, I was filled in on the situation.  I confirmed for them both that mom had specifically said she would NOT want to be put on a ventilator and she had talked about wanting to sign a “do not resuscitate”.  We were all comfortable with this decision and thus began the next 48 hours (ish) of her final time with us.

At this point Julia called Steve in Napanee to ask that he take the kids out of school and come to join us in Ottawa.  I also communicated with Ken to give him an update and he left work right away to join us in the hospital. Julia, Ken, and I sat by mom’s bed and promised her that she would not be alone ever again. There would always be one of us by her side.  She only had single word responses at this point and had her eyes shut pretty much all of the time, but she acknowledged us and thanked us.  We could tell she took some comfort in knowing she would not be alone.  Mom came into this world lacking the nurturing, constant presence that she and any baby would deserve.  She lived a life riddled with issues around abandonment.  We made sure that she knew and would experience the opposite on her way out of this life!

After lunch, the palliative care dr. came in and Julia asked that they switch mom back to dilaudid from the morphine.  It was agreed that we didn’t want her to be in a confused mind frame and that it really didn’t matter if she was drowsy.  We also spoke with the palliative care dr. to seek advice on whether or not to have the kids (mom’s grandchildren) come in to see her one last time.  She explained that it can be good for the kids to see her if she is relatively stable, that it is important to prepare them for what they would be seeing, and suggested that we also prepare them for the fact that it would be a short visit.  We therefore decided to have Predrag & Steve bring in the three younger kids once Anya got home from school that day. That would give mom the time to readjust from the morphine back to the dilaudid. Austin & Lillian, being the oldest at 12 & 7 respectively), were given the choice about whether or not to come in.  Austin was with his father that evening and so Larry spoke with him about it and he chose not to come in which we respected as what he needed.  Lillian chose to come in and therefore she was brought in with the two four year olds.

We feel blessed that mom stabilized enough to see the kids when they arrived around 5 PM.  We brought them in in turns so that it wouldn’t be too overwhelming.  She actually snuggled with each of her granddaughters and Ben hugged her arm.  Mom even opened her eyes a little and tried to focus in on their faces one last time.  After this visit, Julia went back to my place with the kids & their dads.

Ken & I stayed with mom until around 8:30 or so when Ken suggested that I could go home and get some rest.  He had been there with us since 10 AM, but said he was able to stay until midnight.  I went home, had dinner, and went to bed.  At 11:30 PM Julia & Steve went back to the hospital to relieve Ken after they had had a bit of rest (not much though).

Upon arrival to the hospital, Ken explained to Julia & Steve how the past few hours had been. At this point mom needed things in a very particular way (ex. Water on a sponge).  The best way I can describe what it was like to support her from this point forward was that it was like supporting a woman going through transition in labour.

Meanwhile, I was back at home trying to get some rest & a bit of sleep.  I did manage to get a few hours in which was good because the next day was going to prove to be a very long & draining one.

Wednesday September 11

At around 5:30 AM I decided to get up and call Steve on his cell to see how things were going.  I was also thinking that I would rather leave soon and miss traffic hour on my way into the hospital. I showered, dressed, and grabbed something I could bring with me to eat at the hospital arriving at around 6:30 AM.

As with each sift change, Julia & Steve updated me on the previous few hours.  I asked that they send Predrag to join me once they got home so I’d have some help & moral support.  He arrived at about 7:30 AM and stayed with me until Ken came back to the hospital around 10:30 AM.  Then Predrag went home to help out with the kids.  In the meantime, Michael (Nickerson) had been called in to stay at our place for the next couple of days to help out with the kids as well.  We had developed a great little family support network and were working together flawlessly & intuitively to get through this very difficult time.

Ken and I stayed together with mom straight through until 4 PM.  This almost 10 hour period of time was the hardest for me (and likely Ken). This is when we got to learn firsthand what terminal restlessness is all about, only for the first 8 hours of this time I had no idea that it had a name, was common & could be helped with medication.  It wasn’t until the palliative care dr. came in at around 2 PM that she said mom was experiencing terminal restlessness and they could put her on a constant dose of anti-anxiety meds with the added ability for us to push a button for an extra dose when needed.  Let me back up for a minute here.  Supporting mom in this time was, as I said earlier, like supporting a woman going through transition.  She was in effect transitioning herself to the spirit world. The restlessness was characterized by her lying in bed, then needing to sit up but not having the strength to do it on her own and so we’d have to help her, her trying occasionally to get out of bed except that it was dangerous because she was hooked up to a chest tube & had a catheter, her needing us to ever so slowly assist her back to a lying position, her needing us to put a little sponge soaked with water on her tongue when it got too dry (only at one point she thought it was a cherry flavoured sponge (it was pink) and she wasn’t happy about that), and occasionally she would spit the sponge on a stick out or throw it across the room. I could go on with more details, but I think you get the picture.  She was generally uncomfortable, not necessarily in pain (although sometimes she was that too), and couldn’t put her finger on what she needed, but would ask for “help”.  This was a very helpless time for us and very difficult to watch; both emotionally and physically draining. 

Julia & Steve returned to the hospital at 4 PM to relieve Ken & me.  We gave them the update on mom and were on our way.  Shortly after we left, mom had the anxiety meds pump administered and Julia reported that this made a big difference.  After she had had three doses she fell asleep and slept for about 3 hours.  This must have been a huge relief for her after going through a very difficult 12 hours.  Julia even managed to get a bit of rest during this time in one of the hospital chairs.  When mom woke from the 3 hours of sleep, she actually managed to have some conversations with Julia & Steve (albeit limited in her speech). The worst was over at this point and the remainders of her hours were manageable with regular pain & anxiety meds.  She was receiving pain medication every 4 hours with an allowable top up part way through (which we felt she needed usually around 2 ¾ hour from the time of receiving her scheduled dose).

At this point Julia was still very tiered as she had not had much sleep in the last day and a half, so it was agreed that her and Steve would stay at the hospital until 11 PM and then Predrag & I would come back in to relieve them.  When I got home on Wednesday afternoon I spent some time with the family, had dinner, and Predrag & I went to bed with Anya at 8:30 PM to get a couple of hours of sleep before having to get up and go back to the hospital.

Predrag & I arrived at 11 PM to relieve Julia & Steve.  We spoke briefly at that time about whether or not Julia felt a need to be there for mom’s last breaths or if she needed sleep more at this point.  She agreed that she had had enough time with mom at this point and really needed to sleep.  I only needed to call her if/when mom had actually passed.

At this point, mom would be with us for only 8 more hours.  During that time, she became progressively weaker.  When we first arrived that night, she would still have waves of restlessness, but in a much calmer way with less energy behind it.  At first we still needed to help her sit up occasionally, however she would never stay sitting up for longer than a few seconds.

Thursday September 12

As the early morning progressed, mom would furrow her brow every once in a while.  When she would do this, I would place my hand behind her neck/upper back and repeat the following mantra to her calmly “I’m right here, you are not alone, you are ok, trust in the process, I love you”.  Each time I spoke to her like this, her brow would relax; sometimes only momentarily, in which case I would repeat the mantra or something along those lines.  This seemed to be what she needed or at least it was what was intuitively coming to me.  Predrag stayed by my side through this time for moral support.  Luckily mom was peaceful enough at this point that I no longer needed his help to help her sit up etc.., but it was wonderful to just have him there to give me the strength I needed to support mom.

At one point I came to the realization that her breath had changed.  It was not so much that there was more time between breathes, but I could tell that they were shallower.  I felt certain that she had very little time left with us at that point.  It would have been around 3:45 AM or so that I sent a text to Ken who was back at his home in the Brockville area, to let him know where things were at and that I wasn’t sure if she’d make it to the morning.  He replied to say that he was on his way and arrived at about 5 AM. We spent the next 2 hours by her side, cherishing our last moments with her, and repeating our mantras to her when she looked like she needed it.  She became even more peaceful about an hour to an hour and a half before she passed away.  Her breaths then started to get longer and longer apart.

Julia called me at 7 AM to see how things were going.  I said she should come to the hospital and that even if she left home right then, she might not make it for her last breath.  Julia & Steve came right away.  Mom took her very last breath & her heart stopped beating somewhere around 7:15 AM.  Julia & Steve arrived about 5 minutes after that.  In the end, Julia says she is relieved to have not been there for the last bit.

We all said our final good byes, hugged each other, cried (Ken & I even had one moment of hysterical laughter…. Inside joke + nervousness = hysterical laughter at odd time).  We then collected her things and left the hospital.

We spent the next two days consoling each other, catching up on rest & sleep, relaxing, sharing stories, enjoying the food that was so lovingly brought to us by members of our awesome community, and just generally being.

This has been the most profound, difficult, awful yet beautiful experience of my life.  No words could ever do it justice, but I am happy to have taken the time to capture our story.  Those last few days were a blur and it would be easy to get lost in the details when trying to remember back. In fact, I’m sure that some of the account here is not accurate because surely some details have already been muddled in our minds. 

In closing, I’d like to say thank you again to all of the amazing people that have supported us, have held space for mom during this time, and who have shared some wonderful stories with us about their experiences with mom.

May her spirit live forever in our hearts!

Ileana