No one told us …. the story of the last 5 days of my husbands life.

The things they don’t tell you are the clear facts. They can’t tell you how long or how bad it really is besides advanced stage 4 stomach cancer … but they did say he wouldn’t make a year. They don’t tell you how you can start to lose hope. His illness was advancing very quickly. They don’t tell you how hard this is going to be on everyone watching someone you love die. They don’t tell you how scary and exhausting it will be to be in charge of all his care at home. They don’t tell you how devastating it will be to watch someone die. They didn't tell us this would be the longest and shortest 28 days of each of our lives. They don’t tell you how to move forward when it’s all over and your broken heart has to try to pick up the pieces of your broken life.

We knew John didn’t have long to live but we didn’t know how short the time would be. This all started on December 28th at a doctors visit to see why he was just not feeling right. We didn't know that this was the beginning of the end of his life.

We were informed early on that he had ascites which was usually associated with cirrhosis of the liver, heart failure, kidney failure or infection or cancer. In the beginning they danced around the idea it was cancer because everything else looked fine. No one told me John would tell me that he knew he was dying. No one told me I knew in that moment too.

On December 31st they removed 6 litres of fluid from his abdomen. He sat up and said he felt so much better. It wasn’t till January 8th the doctor informed us of his actual diagnosis, he had palliatin metastatic gastric carcinoma – they told us in simple terms "stomach cancer" It was in the upper stomach and had spread to the peritoneum. Later we would find out it had spread to his lower intestine. They also told us he wouldn’t see an oncologist for 6-8 weeks. I asked why? They said everything is so backed up. I spoke with his internist who very frankly said to me “Kathie, there is nothing the Cross can do for him, he is too far gone.” I remember thanking him for being so honest, but feeling sick to my stomach. John only lived 16 more days after his official diagnosis.

John’s only wishes were that I be there holding his hand when he died and that if it was possible could he come home to die. He got those two wishes granted. I remember him being so weak and tired but he had to be able to walk up at least 14 stairs and walk at least around the ward. He looked at me and laughed and said “Funny, I have to get strong enough to go home to die” He did it even when he had nothing in the tank. He powered through to get home. He was determined.

Now, we the caregivers were more than a little nervous. We were going to be in charge of everything, his care, his comfort, his nursing and his meds. We were told it would be fine, they had it all sorted and the meds we were going to give him were by mouth, no injections. We had bubble packs made up to keep it simple for us. Homecare would be there and eventually palliative homecare would take over. They told us we were set, they didn't tell us we were in over our heads.

Waiting for the ambulance to take him home was hard on John, he was tired and the waiting was taking its toll on all of us. He also had to do an oxygen test to prove he needed the oxygen which he had been on since his 3rd day in the hospital. No one can explain to me why this has to happen, why a doctor can't just vouch for him? The test was very hard on him. After waiting from 11am it was now 6pm we got the news the ambulance was on its way it would be there shortly. We were sort of excited, mostly scared. This was Thursday January 19th. The hospital team hooked up with the oxygen people and they were going to meet us at home to set him up. They set up homecare...but told us that Homecare wouldn’t be there till Monday and this was Thursday because we were going into the weekend. No one told me if you are dying you need to make sure its not over a holiday weekend or over any weekend. I was in shock; they were sending us home without help? How could that be. I didn’t want to alarm john so I said nothing but my girls and I were very distressed about the whole thing. They tell you it will be fine; it will be easy. They don’t tell you the reality of what we were stepping into. They say it will be hard but you will have so much help…but we weren’t going to get help just yet, because it was close to the weekend. WTF!

On the ride home in the ambulance John looked out the window to take it all in. He knew he would never see the city like this again, this would be his last time. My heart broke a little more watching him. No one told me how much my heart would break. I sat beside him terrified of what I was about to take on. Could I do this, was I prepared? The answer was yes, I could (we could) do this, but no we were not prepared. The hospital prepared us the best they could. But the look on Johns face when he saw the house made it all worth it. It will be something I will never forget. It was so beautiful; he just took it all in, looked peaceful and content. He was very quiet as he looked at our home. He got to come home. I knew we had done the right thing for him.

When we got there the house it was full of people, the girls, my sister, Steven, the firemen who helped bring him in and the EMT’s, Wendel and me oh and the Oxygen tech person. Once John was settled into his new bed in the amazing room set up by Jay, Stephen and Maggie, he would again have to do a test to prove he needed oxygen. These tests were very taxing on his body. Oh my gosh, if I had known how hard it was for him, I would have objected, fought to have them not make him do it again. I’d pay for the oxygen. He had been through so much already. But I just watched, unable to say or do anything. After everything quieted down we let Wendel in to see John and it was a sweet exchange. Wendel sniffed and nuzzled him and John pet him like he always did. Wendel would spend a lot of time just outside the room on the floor because he was too big for the space on the carpet by John’s bed.

John lay down and looked at me and sweetly said “Thank you for doing this” All I could say was “Anything for you…I would do anything for you.” Choking back tears. No one told me how I would love him even more through all of this.

There was a moment of something that was almost normal for him, John wanted to walk to the island and visit with Maggie and Stephen. He stood at first and then sat. He smiled and chatted a bit, even had a popsicle. I could tell he was tired so I looked at him and he nodded ( we didn’t need to say anything) and we walked back to his bed. He lay down to rest and take it all in.

My sister sent me upstairs to have a shower and change. I heard some noise downstairs and I ran down, John was throwing up. Oh God no, they said if he started to throw up it could mean a blockage and that was not good. John calmly assured me it was probably the ride here and maybe the pain meds they gave him to help with the transportation. He hadn’t needed any on pain meds and it might have upset his stomach. So, I was like “okay that sounds right”. He was settled again. At around 9:30pm I gave him his evening meds. He slept. I went up to have my shower knowing my sister was there to cover for me.

All was quiet, I was sitting in his room and then at around 11:30pm he threw up again. I remember one of the firefighters who helped bring John in, tell me to never hastate to contact homecare or them for help. So, I called the 24-hour homecare line. John was so new to the system she didn’t have any information so I gave her his healthcare # and she pulled up his file. She listened as I spoke, cried and asked for help. She called an ambulance, she told me it was “End of Life” it was different, they would come without lights or sirens and would come in give the care he needed and leave him home. I was thankful because I promised John, he wouldn’t have to go back to the hospital again. The EMT’s came and took good care of him. They stayed for an hour to make sure the anti-nausea meds worked. We settled for the night. He slept, Maggie was my back up and I watched.

The next morning at 7am Johns phone rang (wrong person to call – it took awhile for that to get sorted out) our homecare worker would be coming today to see him and assess him. Thank you, God!!

Then I got a phone call from our palliative care doctors office telling us our doctor would be there to see him next Friday. Wait what?? I asked why and told her about the ambulance and the nausea. She just said that was the schedule. Luckily our case worker sent notes to our Doctor and the doctor showed up at 1:30pm that day. Our little miracles. All John's meds were changed and he went from by mouth meds to injectables. So, our journey continued. Each day we had to call for help and they always came to help us. They changed his meds 3 times in the short time he was home. I didn’t sleep as I watched him sleep and talk in his sleep, it was like he was working. He was so restless; I think sleeping was exhausting for him.

We wrote everything we did down, the time and what we did. We documented how he was acting, feeling, what he ate or drank which was very little. He was quickly getting more distant and less able to talk. He slept more and when awake he would look at us, and say what he could. He always told me he loved me and that I was doing a good job. Oh God, I prayed we did a good job. We told him from the beginning we would defer to him about everything, he was the lead in this. We honoured that as best we could. He needed to know the time and what the schedule was, if he was seeing anyone. He needed a sense of some sort of control. He needed to know what was happening. He was in a vulnerable position and I did all I could to keep him updated on what was happening. I did all I could to keep his dignity because death is messy and unkind.

No one told us how to navigate his wishes even if we didn't understand or agree with them. No one explained how we would tell his grandchildren they couldn't see him because he didn't want to hurt them or scare them. That it was too hard for papa to see them because he loved them so much. No one told us how to sit with them in their pain because they didn't understand why they couldn't see him. No one could explain the depth of his love for them. These are things we navigated through, stumbled through, cried through and are still getting through together letting each of those beautiful children know how very much he loved them.

Monday, he looked different, his eyes were different, he was different. In the afternoon we played music and sang to him while he lay with eyes closed and I sat beside him singing. We loved to listen to music together (concerts were our thing) and he loved when I sang. He told me that day if the only thing he had left was being with me and that I sang to him, that was all he needed. So, I sang over him, and my sister and daughters sang harmonies in the background. I remember thinking how incredibly beautiful it was. No one told me about how beautiful moments can be even in the darkest of times.

Monday night was the worst. I had to increase his oxygen because he needed more, he was having a harder time breathing. We also had to change to a mask because his nose was so dry and scabbed from the oxygen. (They don’t tell you about cream to use to help prevent that). This night he was very restless, pulling of the mask because it was uncomfortable, so I switched it back to the one you insert into the nostrils. I didn't care at that point, I just wanted him to be comfortable. No one told me that I would sacrifice his physical wellbeing (the pain from the scabs on his nostrils) for his mental wellbeing (so he could relax). He was talking much more in his sleep. He would wake and it would take him a minute to figure out what was happening. I think one of his biggest fears was losing his insight to what was happening. It was one of mine too. The meds and dying take so much from you I can only imagine how hard that would be.

Tuesday morning around 3am he woke up and we talked a little, I remember him drinking his gatorade and thinking that’s a good sign dying people stop eating and drinking. He was drinking! He hadn’t really eaten anything yesterday and today was no different and most days it took him a whole day to finish a bottle of gatorade.

His homecare coordinator came to see him around 9:30am because I had concerns about his legs and the swelling. She assured us he was okay and there was no concern. She told us to start giving him his pain meds because it would help with his breathing. She also showed us how to move him in his bed because he his legs were so long and he would get scrunched at the bottom of the bed. Why didn't they show us before? At 1:30pm his Doctor arrived to talk to him about options. John had to concentrate so hard and spoke very slowly so that the Doctor understood what he wanted. It was very clear. MAID was off the table for a very good reason to him that was all that mattered. Then the Doctor gave him some other options and gave him the choice of what to do, be comfortable or go into a deep sleep. John's choice was to go into a deep sleep until he died. He never actually made it to that part. His was prescribed a new medication to put him into a deep sleep that we had to wait for it to be filled. My son in law picked it up for us so we could get it quicker.

No one told us much medication we would have to return to the pharmacy for them to dispose of.

The afternoon he moaned a lot and seemed agitated. I sang over him and held his hand, he seemed to settle a bit at least for a while. Later I noticed he was clammy but so cold and seemed very distressed. His eyes were part way open and cloudy looking. I checked his hair and it was wet, his back was wet. I started to panic. No one told us this was how it would happen. I got Rayna to call homecare and his Doctor, Rayna was told it was normal and not to overreact. They didn’t tell us this was it. Strangely enough, I read something out loud to each of us that afternoon about what happens when someone is dying. it said some things about the dying person and it also said it would be harder on the caregivers. None of that came into our minds when we were going through everything. No one said how hard this would be.

We had to try to make him comfortable so Rayna heated up a blanket to try to warm him. I took his temperature and it was 35 it was going down. I think on some level I knew he was dying but my heart didn’t want to believe it. I wasn’t ready, none of us were ready. I begged the homecare nurse to come and she said she would be on her way by 7:30pm. Jay had arrived with his new meds while I was still on the phone with the nurse. She told us to give the newest meds to him because it was an anti-anxiety as well as sedation. He would relax. Terrified, Rayna and my sister gave him the injection (we always administered his meds with 2 people) Rayna told him exactly what she was giving him before she administered the meds. She gave him the medication at 7:12pm Within in minutes he settled. By the time the homecare nurse arrived John was actively dying. I was begging for help, telling him I was so sorry it wasn’t supposed to be this way. I cried because I had promised him a good death. I felt like I was failing him, I was helpless in all of this. He was helpless in all of this. Then he stopped breathing. I asked Rayna...did he stop breathing? Then he took a larger breath and he stopped breathing for good, that was his last breath. John passed away at 7:42pm. It was neither beautiful or quiet. It was distressing, traumatic and devastating. They tell you its harder for the people caring for the dying person, but they don’t tell what to expect. No one told us how the quiet would be deafening. No one told us how much it would hurt. No one told us about the relief we would feel that it was all over for him.

To be fair both our nurse and our Doctor said they didn’t expect him to die that soon. They weren’t ready, we weren’t ready. I knew he was dead, I know him, I know how he took his breaths and how shallow they were. I knew he wasn’t breathing. Our nurse took more time to believe he was dead. When it was all over, she cried because it was her first homecare death. We comforted her and hugged her. None of us were ready.

Do I regret bringing him home? No because it was what he wanted. We cared for him the best we could and got help whenever we needed it as quick as we could. We loved him through it all. We honoured him.

I sometimes sit and question did I do everything I could, did I honour him, did I keep him comfortable and safe, did I keep his dignity, did I do enough??? All I know is we as a family did our best and that is all we could do. I pray he felt the love and care we gave him was enough. I pray if I didn’t get it right that he forgave me.

We knew on some level this would the hardest thing we had ever done. Each one of us, especially John, we just didn’t know it was going to be so hard.

There are things they didn’t tell us because they couldn’t tell us everything, death and dying is not the same for each person. I am grateful for the care and compassion my husband received by our broken overworked healthcare system. They deserve our support and our help to make things right for them and for the next families facing a health crisis.

John Peter, thank you for bringing out the best in me and for trusting me with loving and caring for you till the very end. I will always love you.

Love,

Kath