The Story Lois couldn’t write.
She had more important things on her mind.
What? She was dying.
Diagnosis to Death
(The eleven week ride)
I wrote this piece 3 months after my wife’s death. Why I could recall with such clarity the events I do not know but it became clear to me that I would have missed so much if it hadn’t been for “Cheryl” and the book “Final Gifts” By Maggie Callanan and Patricia Kelley. Had I relied on what the System offered Lois would not have died with dignity something we all want at the end. This is not doctor bashing but it is questioning the medical profession for the lack of Palliative training the General Practitioner receive at Medical School and the lack of support from the College of Physicians and Surgeons. We the patients and Caregivers rely on the GP so much at a time like this as they are the ones who have helped us over the years. Our family doctor was doing what he thought best so that cannot be questioned as he was working with what was available to him . They should never be put in this situation as the Medical System knows full well that they have failed the GP. Again I was lucky to have seen that there is another way to handle the final ride and believe me it was far better than what the system offered. I hope that by writing this piece will help get the system to think outside the box when a patient is diagnosed with a terminal illness. I can’t even begin to image what a GP must go through when one of their patients is dying but again it is to them we look to for help at this time.
Thursday July 27th, 2000.
Lois went out that evening to a Royal Le Page Realty dinner cruise. Next day she wasn’t feeling too good, nauseated, stomach pain. She put it down to the oily salmon she had eaten the previous night. Saturday she was feeling real lousy. This time she thought she had a bad case of food poisoning. She had to open a house for an inspection in the afternoon, which she did. When she got home she said, sorry I just can’t go out tonight, as I feel terrible. This was unusual as she always looked forward to the weekends. She went straight to bed and just slept. Sunday she woke around 8 0’clock as she had to open another house for a realtor at 10. She got up and then said you’d better phone Terri (her partner) and tell her I’m too sick to do anything today. After phoning Terri I came in to ask if she needed anything. , It was then that I did a double take and noticed that she looked yellow. She said no big deal it must be the light. I decided to phone the on call Doctor who acted as if whats you problem. He said are her eyes yellow. I said all her body is yellow and he implied if I would feel better I should take her to emergency. This I did. (The first introduction to our medical system when you feel you really need them as you know something is wrong.(One does not turn completely yellow for the fun of it) He gave the impression of -why the hell are you calling –you are meant to call me only if it an emergency.)The nurses at Emergency were great. They took blood for testing and put her on a drip as she appeared as she was dehydrated. We finally went home around 8.30 pm., with the instructions to call your Doctor in the morning and make an appointment to see him. This she did and Lois had an appointment for 3 pm .I took one look at her and said we have to see him now as she looked bad. She phoned the office back and by this time the doctor had apparently received the results of the blood tests as his nurse told her to come in right away. The doctor informed us that her blood count was low and she would have to have a blood transfusion immediately and oh by the way they would be doing a scope down the esophagus tomorrow morning.
July31, 2000 the games within the system begin. At this time you have complete faith and trust in the medical SYSTEM, especially the doctors’ .Lois was admitted that afternoon and had the transfusion. The scope was going to take place at 8 0’clock the following morning and I was told it would take about 30 minutes. I arrived the next morning at about 8.30 and waited for her to come to the recovery room. This was funny, as no one knew where she was. ER thought she was in the recovery room, but they thought she was going to a room in ER. Well, it took me (yes me) about 10 minutes to find her in a side room next to the ER. No one seemed to know who put her there. Next the surgeon who did the scope came in telling us he can only stay a couple of minutes as he has to be in surgery. Obviously, he is trying to juggle two scenarios, but he should be prepared for a situation like this. He showed us beautiful pictures of a tumor letting us know that even though he had taken a biopsy he could assure us that it was cancer and he was going to remove her stomach within the week. By the way this is major surgery but you will be okay. Many people have had this before. He quickly explained that they take the stomach out and pull up part of the intestine to form a new stomach. Next he had to run “surgery you know” they have to try and save lives, it’s what they are sworn to do. So off he goes assuring us that your doctor will be by later to talk to you. Great, have a nice day! At this point, looking back the “key players” should know how to approach the situation and break the news in a better fashion. (I know this must be so hard but there has to be a little bit better approach). We were both in shock. I’m the one who broke down outwardly. We held each other and it is then that she said “ Let’s pretend we’re on a Disneyland ride: we’re going to enjoy it as much as we can, those who want to get off can., we just don’t know when its going to end.”
My first reaction after being told what was going to take place was that this was bad. The family doctor comes in and tells us that more tests will have to be done and that they will give her another blood transfusion after which you can go home. He said that the surgery would probably be done by the end of the week. He tells us to come into the office the next day.In the mean time I call the kids and friends to let them know the news, telling them all it is terminal .I could have been wrong or what if the surgeon had misdiagnosed, but that was the way I interpreted what I had just been told. You don’t have to be an idiot to determine what the hell is going on. (Maybe one should think before they speak, something we are all guilty of) They don’t take a stomach out for fun. They also took x-rays before the transfusion. We finally got home around 9pm. Back at doctors office the next day and it is then that he informs us that the surgery is on hold till further tests are done. IE a cat scan. (Obviously he had now spoken to the surgeon and seen the x-ray)The games continue. He informs us that it could take a while to get into have this done but he will call in some favors and see if he can get her in early. Hey presto what a great SYSTEM! Bribery, it’s the same old story. Was some other patient going to get bumped? .It’s not what you know, it’s who you know. Surprise, surprise he can get us in tomorrow. This really made him look in our eyes. (Later I heard this same line re pulling in favours from others going through the palliative journey. Family Physicians appear to be able to get a patient in within 2 weeks.) There is no need to play games just say I will do what I can / that is all we ask for even though we would like it to happen yesterday) He proceeds to tell her that he will do everything he can and assures her that she will not be in any pain . (Looking back this is a hollow promise, you’d better know what palliative care and pain management is all about) Lois tells him that she wants quality of life and will not be sliced and diced or chemo etc for the fun of it. Next we are informed we have to go to a Lung Specialist to determine if the stomach cancer or the lung cancer (spots had shown up on the CAT scan), is the primary cancer. Also another advantage of having a good doctor is that he will get us into the Cancer Clinic fast. Why even mention that? He got us in August 24th Again after talking to other people it appears that it always takes about 2 weeks to see the Specialist,
Now go out and enjoy yourself you have a lot of living left. (Yes this is what he said) Thanks we understood exactly what you’re saying. “Hey we will do what we can but don’t get down on yourself as we are going to do the best we can, remember I have already been in touch with all the top Specialists. Who could ask for more? They hit you with so much confusion –Have you any questions, sure!!!(Everyone has a list of questions that they keep in their back pocket for such an occasion.) Basically, don’t worry / be happy the best thing to do right now is go party; you’re only going to die. Right! We all are but most of us think it will along way down the road. It’s at this stage that looking back you realize that the Family doctor knows little about Palliative Care. (Apparently they receive little in the way of training in this field during their time at Medical School) If we (society) understood this we would not be so hard on them after the fact. There should be a pat formular and routine that starts as soon as one of their patients is diagnosed with a terminal illness. They may think they know what’s best for the patient but it becomes increasingly apparent that they are lost. They have to maintain that barrier, that wall to protect them. That barrier has to be broken down. It is okay if they say they will get the best help they can. This doesn’t make them any inferior; they can’t be experts on everything after all they are Family Physicians and that they should be complemented for .I know when faced with losing a patient it must be so hard on them.
August 4th we went to the Sylvia Hotel for a 10 day holiday. This had been planned for a year and Lois said no way was she going to give that up. She loved English Bay .The doctor told us don’t worry, call me anytime. I guess he didn’t know what was about to unfold and that I would take him at his word. (I know I didn’t) Before we went down I was told to give “Cheryl” a call. This was a friend of my business partner who had 20 years of palliative nursing experience. At the time I called her and she said she had a book she thought might help me the care giver understand what was happening and what was going to happen. . I said thanks, if I could get to her place I would pick it up. I did pick it up. Little did I know that she would be the person who would get me through this ordeal. What was the chance that she had just had hip surgery and would be available to me 24 –7 for the next 11weeks? It was her who got me through this. NOT the SYSTEM. I picked up the book called “Final Gifts”. It was a gift. A gift enabling me to understand and not be so afraid. It taught me to LISTEN to Lois. She was the one who was going to let me know what was happening to her – how the cancer was progressing and she would tell me when she was leaving.
It appears the doctor had no idea that this type of support was available. (Maybe all Doctors and Specialists should read the book “Final Gifts”)
August 5th was a great day. Lois sat at the beach for at least 5 hrs. This was to be the routine for the next 10 days of our stay and then every day till about the 14th Sept. after we went back home.
The first night we had a number of friends over and went to Tanpopo for dinner then we watched the fireworks. Everything was great. Lois had mentioned that her lower back was sore, putting it down to sitting at the beach all day. I wasn’t so sure as you could see the way she was moving and when I was holding her while watching the fireworks that something was not right. I decided to call the doctor at about 11.30 and he said it can’t be much, give her some Tylenol and call in the morning, it is probably muscle spasms. This is when I phoned “Cheryl” –the first of me phoning her every day till the end. I told her what had happened and at the same time I wanted to know what she thought was happening and how much time she thought Lois had. She said she couldn’t say but I told her I wasn’t holding her to anything I just wanted to have a window. We don’t ask for much but I think we have a right to ask. (I know this is a question we all ask and yes it is hard to answer as there are many ramifications and no one knows the day one will take their last breath. The easy way out is to give a long prognosis. I guess it’s like the chicken and the egg “what came first”. After me telling her what we knew at this time and me describing this lower back pain she thought 2 to 3 months, but reminded me that she was not a doctor. I understood what she was saying and that no one could put an exact time frame on this. This was so important to me. The doctors were telling us at least 2 years or more. (“Cheryl’s” call was correct. And she was just going on what I had told her. She had not even seen Lois at that time) About 1 in the morning Lois was in a lot of pain so I called him again and this time he said he would call the Pharmacy closest to us in the morning and get some morphine. This he did. She didn’t sleep all night. I also called “Cheryl” and she said it seems as though the tumor is acting up meaning that it was growing.
Next morning I went down to have coffee and started reading Final Gift. Lois had no idea I was reading the book as they tell you don’t let the patient know as it is for the Care givers. I brought back a cappuccino for her (this I did every morning for the 10 days we were there). She said thanks but what she said next really surprised me.
She said that was weird and I asked her what was weird. She said there was a lady at the end of the bed, standing at the corner with a cup of coffee, I asked her who it was and she said no big deal, she was there to help me in transition. This did not seem to faze her at all. She never mentioned it again and the day just continued. I picked up the morphine and gave some to her. She appeared to worsen that afternoon. Panicking I phoned the doctor. When he didn’t call back I phoned “Cheryl” and she explained that Lois could be having an allergic reaction- don’t give her anymore until you talk to the doctor, just keep her cool and it will pass. She also said that the doctor might try her on hyromorph as some patients do have a reaction to morphine. When I finally got hold of him and suggested Lois might be having a reaction to the morphine he disagreed. And said she only needs muscle relaxants. One wonders why he subscribed morphine.
At this time I didn’t realize that there was going to be a daily battle with myself between what he was saying and what information I was getting from outside the system. I was intimidated by him. He put her on muscle relaxants and this was going to be all till we got into the Cancer Clinic. “Cheryl” wondered what the hell he is doing. If the patient said they are in pain then you address it ,especially when they know you have cancer –the idea is to keep them comfortable.(remember he had said she wouldn’t be in pain) She then told me how to monitor the pain level. You ask the patient on a scale of 1 to 10 what they think it is 0 being the best. This scale is so simple. I told him this a few days latter and he just laughed it off. He said we don’t want any pain. Smart guy if he knew how to guarantee this. (He never was able to do this; Thanks to outside input I did it myself in the end)
August 8th we saw the Lung Specialists at VGH. Nice man, but it was when he said your lung cancer (the x rays and CAT scan had shown spots on the lungs) was not the primary one I knew then that this was going to be a short ride. The rest of the week I continued to take Lois to the beach. She loved it so much. I would get her set up and then she would tell me to go look at apartments as I still had to come down here even though she wouldn’t be with me. What strength, this I didn’t realize till after it was all over. Terry and Francine would come and visit us after work and we would go out to dinner. Even though we walked it was always at a very slow pace. She was going to enjoy the ride for as long as she was able on her terms.
She was not eating much at all. She would fool Francine into thinking that she was eating by slipping her food to my plate when Fran was not looking. She didn’t want people to worry about her.
We left the Sylvia on the 14th.
After arriving home Lois was still determined not to let one day pass without making the most of it. We went down to English Bay every day that was possible ,she was playing with that shitty deck of cards ,but that didn’t stop her playing the best hand possible. It would take her such along time to get herself ready (she always had to have her make-up on and she always had to make sure she looked good.
One thing that overwhelmed her was the number of cards and E- mail she got. It’s such a same that something so devastating has to happen to find out how much you have touched people. Lois had to reply to every card or E-mail that she got and when this got to be too hard for her she was devastated.
Through all this Lois was organizing her departure from this world. She was taking care of business. First trying to make sure we were okay. She suffered in silence around her friends especially Francine who she loved dearly and who she knew would have a hard time accepting this. This I realize in hind sight was going to be part of my job being the primary caregiver. I had to protect Lois, yet try to understand our friends. Without the book, (Final Gifts) so much would have been lost. To see the expression on Lois’s face each time we went to the beach is etched in my mind forever. That expression was so hard for her yet it won out over the pain and her knowing that she was dying. THIS IS WHAT LIVING IS ABOUT. It appeared to be mind over matter. If only the doctor had bothered to ask how she were doing and not keep telling her she had lots of time. Her body was telling her what was happening. All we had to do was listen. Thanks to “Cheryl” I listened and looked, it made it so much easier for me and our friends.
August 24th we went to the Cancer Clinic. There is no way to describe the visit , You are going to find out how they are going to treat you knowing that there is nothing they can do because we have already done research via the Internet.
They go through a whole spiel on what they can do knowing darn well that pain control is the only proper way to deal with it. Why would they even suggest chemo or radiation when they know that it will not give one any decent quality of life. Lois could not fathom this one out. If she had had chemo or radiation her last 8 weeks would have been at least 6 weeks of hell.
Lois decided herself that she would just take pain control medication as things progressed. She was not going to their guinea pig. (It was at this moment that the Cancer Clinic dropped her like a hot potato. WHY? they alone can answer that question). From that day on I saw her go down slowly each day, but she fought to be Lois as long as she could. From that moment on Lois and I were truly on our own except for our friends. When you don’t play by the system rules they don’t want to know you or maybe they don’t know how to handle the situation.
August 26th we went down to Seattle for Nathans (our son) 21st. Terry and Fran came and we had a great time. We went to the new stores at Redmond and it was at Pier 21 that Lois said to me that you can furnish your new apartment from this store – one stop shopping. She was always thinking about others and was especially worried about me, how I was going to survive without her. She knew me so well.
The next week we continued going to the beach each day. It was also that she showed the first sign of anger. She couldn’t stop crying when getting dressed, but she would gather herself and off we would go. This went on for a few days .It was “Cheryl” who told me what was happening. It was part of the whole process. There are stages you go through -- .DENIAL, ANGER, BARGINING, DEPRESSION, ACCEPTANCE and a person does not necessarily progress through them in a orderly fashion
She told me that Lois would stop crying and then go into an acceptance phase but she could also return to the anger stage. At least I was prepared for it. Where was all this information from the doctor who said he knew all about Palliative Care?
The next two weeks we continued to listen to him telling us that he was in contact with the top Specialists in Vancouver (did this make him feel good) When I used to get frustrated with him over pain control verse “Cheryl’s” input ,it would upset Lois and she said , that if she had to choose between the doctor and “Cheryl” she would choose the him. (remember Lois didn’t know I had read the book Final Gifts ) What blind trust we have. This situation should never have had the opportunity to show itself. At the same time she could not understand why he was afraid to let anyone else in. I learnt to hide my frustration from her as she had enough on her mind. It was around this time I realised that I would have to do what I thought would be the best for Lois. Everything “Cheryl” was saying appeared to be spot on. She could tell me over the phone what was happening and what was likely to happen. When it came to the pain control she knew exactly what was required (again 20 plus years as a Palliative nurse obviously helps). From day one she said we are never going to get on top of the pain if he continues doing what he is. Believe me she was so right. I can show you the three times, yes three times that we started from scratch with the PAIN CONTROL. Each time I told him that we have already done this and could tell him what the final result will be. Not once did he listen. Yes I kept notes on what we were doing as suggested by “Cheryl”
Lois could still get around quite well during these two weeks. From here on it was slowly down hill.
The last week of August I got her a shower stool –WRONG- you weren’t ready for that and I found out when you opened the shower door and threw it into the hall way. But a week later you at least accepted a raised toilet seat. So humiliating but you knew you had to have it, but still you wouldn’t use the shower stool.
September 3rd. we celebrated your birthday. What a great evening. This was the day where I can look back and see you were accepting what was happening on your terms .How do I know this? Well Lois was a person whose image was very important. First we were meant to go to the Spaghetti Factory to celebrate but Lois was feeling bad .She didn’t want to be a party pooper so I convinced her that I could pull it off by having it at home and that our friends just wanted to be with us. So what if the spread I put on was not up to Lois’s standards, they would not mind. When she said okay, I knew she must be feeling worse than she was letting on to me. I prepared the best arrangement ever of snacks imaginable. Lois was so embarrassed. .Hell how could I have gone wrong with crackers, meat, cheeses, olives and pickles. Everything I suspected about the pain and her just feeling the shits was confirmed 100% when she made her entrance in her PJ’s. Yes if you knew Lois this is one thing she would never have done in front of friends - but she did have her make up on with that ever present Lipstick looking as good as ever.
It was a great evening. Lois lasted about 1 ½ hrs before she told our friends she was tired (she didn’t tell them she was in pain). They all left except Terry and Fran, who just wanted to be with her best friend. I finally had to tell Fran that Lois was lying when she said she wasn’t in pain. Looking back if I had had the information I know now then, I could have handled things differently. Don’t get me wrong I could not have wished for a better death for Lois. It’s just that there are so many things I worried about that I should not have had to. Lois should have been all that mattered to me.
Terry and Fran finally left and we went to bed
(What happened next was purely Lois at her best. It was what she was, One Hell of a Lady)
WE WENT TO BED AND THEN OUT OF THE BLUE SHE SAID I WANT YOU TO MAKE LOVE TO ME MAYBE FOR THE LAST TIME.
THAT WAS THE LAST THING ON MY MIND.
JUST CUDDLING HER HURT BUT SHE SAID SHE WOULD BE OKAY BUT SHE MIGHT CRY.
WE MADE LOVE AND AFTER I COULD ONLY CUDDLE HER FOR A SECOND BECAUSE SHE WAS HURTING
WE LAY SIDE BY SIDE.
SHE DID CRIED
THAT WAS THE LAST TIME WE MADE LOVE
6 weeks later the ride was over
Monday the 4th the final day of the FAIR. Lois loved going so I told her we would have to get a wheel chair. No way would she have this. Christ she had trouble walking to the car let alone around the FAIR.
Lois finally agreed after the Home Care nurse cam by. ( great people but not trained in palliative care) Okay the next little problem. You try getting a wheelchair on a holiday weekend .
After much threatening I got one from the local hospital. Thank you very much (don’t we fund the hospitals) what the hell did they think I was going to do with the chair –sell it back to them. They the government would likely fall for that and then hold a Royal Commission to see where the original chair went.
We finally got to the FAIR about 4 (Terry and Fran came with us) and had a fabulous time getting home at about 12.30. Lois was so happy
Yes Lois WAS living life to the fullest. She was doing it “HER” way not the Systems way.
Sept 5th was the beginning of the final ride.
Well things changed dramatically after the FAIR. It was as if you could feel what was happening to you and all these outside invasions into your independence were okay, it was all part of the shitty deck of cards you were playing with. You finally accepted the shower stool but still would not let me help you shower. This was to come latter –A privilege that cannot be explained. I just wanted to help you any way you wanted me to. You continued to deteriorate steadily and what you wanted from me at this time was Cannoodles. We just lay on the bed hardly any talking just thinking .What does one talk about in this situation? This was such a neat experience that unfortunately lasted only a couple of days as it hurt you being cuddled, but I cherished any of this closeness you allowed me to have with you.
On the 5th we meet Marilyn and Bob at Something Fishy (Granville Island) for lunch. This was so neat as there was Lois in her wheelchair (This one I rented the other one was returned to the hospital. You know what. I could have just walked in and taken one and no one would have been any the wiser.) It was so appropriate that Marilyn and you could have a picture taken, you looking at her and saying DON’T you even think of pushing me down the stairs. (This is a private joke) The only sad thing about this day is that both Marilyn and I don’t know what happened to the photo.
On the 10th Lois went into hospital for another blood transfusion after another battle with the doctor. Here she was getting weaker and looking like shit. I called the doctor and he said I’ll she her on Monday. At this time it was our son Nathan (21yrs old) who e-mailed the doctor to tell how frustrated I was and didn’t know what to do. Again why was I in this position? This might sound alright to him but hey doc think about what everyone else is going through. I’m upset that the College of Physicians are basically a bunch of premadonnas who think they know it all and it’s their way or the highway. This is the only way I can describe their profession.
The week of the 10th was the last week that I had the Lois I had known for the last 25 years. .She was getting weaker by the day. Wednesday the13th we were going to go to meet John and Brigit at the Nooksack Casino in the evening. Well at about 3 o’clock Lois was talking to “Cheryl” on the phone when she looked at me, held her side and said Jesus I’ve got bad gas.
She told “Cheryl” she had to go and gave me the phone. As she walked away she was moaning and I told “Cheryl” I had better go. By the time I got to the bathroom the worst scream I have ever heard met me as I entered the bedroom. Lois came out of the bathroom sobbing saying don’t touch me and lay on the bed. We both thought this was the end. I was terrified and immediately called the doctor who called back with in a couple of minutes. He could hear Lois screaming and said give her couple of break through shot of hyromorph she’ll be okay. Yes I was in control of the medication at home. (Why weren’t we prepared for this? I thought they the doctors knew all about Palliative Care.) “Cheryl” called as soon as I had hung up from talking to the doctor. Lois was still screaming and she asked what he had told us to do. She was happy with the main part but asked if I had given Lois any ativan (this medication was suggested by “Cheryl” and was the only time he agreed with her) .I hadn’t so she told me to give her one immediately as it will calm her down. (Why the hell didn’t he know this?) Strange how a nurse who doesn’t know Lois‘s case could tell what was happening. I think the answer to this is simple, EXPERIENCE and it is a fact that maybe because someone has worked in the field of palliative care for 20 plus years may actually know more than a General Practioner. Think about it. Cheryl explained the pain Lois was experiencing was the tumor growing or maybe just from the way she was standing.
I told “Cheryl” that we wouldn’t be going to the casino and she said “don’t be to sure” as Lois is one strong lady. Guess what. At 6.30 we were on our way .Lois obviously wanted to go as she thought it could be her last time as we had been trying to get to Vegas but she knew that wasn’t going to happen. We rolled in at 12.45 and she was completely knackered, but happy. Paris hotel Vegas
On the 16th she wanted to go down and see Nathan in Seattle but also wanted to go back to the Nooksack on the way home. Off we went (with the wheel chair in tow) had a great dinner and visit with Nathan then meet John and Brigit at about 9. Lois again had a great time even though she kept falling asleep at the video bingo. We finally got home at about 1. Again she was so happy. Just to be able to share how Lois was handling this had to be seen to be believed. Again if I hadn’t read Final Gifts or had “Cheryl” to talk to I can’t imagine how I would have handled all that was thrown at me.
The last week must have taken a heavy toll on Lois but she called the plays and she was content. The pain was getting worse and finally the doctor said we could put her in hospital to get control of it. (Reluctantly) This is what “Cheryl” had said would happen from the beginning. I failed Lois because I was intimidated by the doctor. From this point on I finally listened to what my gut was telling me, not what the doctor was saying and this again caused me to be stressed. Again we all have to be playing with the same deck of cards. Lois was admitted on the SEPT.19th for ten days.
It was these ten days that again convinced me that there was something terribly wrong with the SYSTEM. Lois met another nurse (again 20 years experience) “Joy” who knew what palliative care was, she was there for Lois, as Lois said she was her angel. This was a person who Lois trusted and could confide in, a person who seemed to be able to answer all Lois’s questions about dying. What was going to happen what it would probably be like? Again why wasn’t this available from the beginning. What the dying need, what we the Caregivers need. Lois and I lucked out I had “Cheryl” Lois had “Joy”. How many patients or loved ones have this opportunity? It should be there for us all.
The 24th was special; Dallas and Nathan got to spend a few hours individually with their Mom. I don’t know what they talked about but I think they will treasure this time they had with her. This type of special time was also mentioned in the book “Final Gifts.” So I was not surprised that this took place. Lois was meant to be in for a few days but what I explained earlier, trying to get the pain under control the doctor showed a lack of knowledge. The final outing for Lois was Monday 25th at Speeds Pub with Marilyn, Bob and Neen. Lois was just in her track pants and a sweater (this again told me that she was not the old Lois) That night I got dessert from La Belle Auberge (a local restaurant she loved) and like the cappuccinos I brought in every morning that she never finished it she had one bite and that was all, but she loved it. I just wanted her to be here forever, though I knew this was not going to be. The end I felt was going to be a lot sooner than latter. This stay in the hospital was great. Terry and Fran would visit in the evenings and Lois and Fran would have their ounce of brandy. As long as it is not too extreme what right has anyone got to tell a dying person what they can and cannot do in the hospital? Yes Lois wanted to be Lois for as long as she could. Maybe she was thinking of the good times of the past.
It was during this time in hospital that you saw “people” from the other side. The lady who had come for you, but you told her you weren’t ready. The guys who had come for you, but you told them to come back later. The guys at the end of the bed –5 or 6 of them. They were okay; they were only some kind of leaders. (interesting! the leaders of what.) You finally got to open that door that was always in the reoccurring dream you had had from childhood and then you said it is neat where I am going. You also saw the child you had lost through a miscarriage. None of this made you scared. You said it was okay. All of this would have normally have been put down to the “drugs” if I hadn’t have read Final Gifts. I would not have been listing or watching. Two small things meant so much for me, “Cheryl” and Final Gifts.
Well Thursday 28th I took Lois home. Bob and Marilyn were there to help. Lois had suddenly taken a turn for the worst. We got her home and she went to bed. This was about 12.30pm. Bob and I went to the store, by the time we got back Lois was running a fever. I phone the doctor and he took awhile to get back. “Cheryl” to the rescue. She explained to me what she was happening. Never once did she tell me not to listen to the doctor even though when he had finally spoken to her when Lois was in the hospital he had intimated he could get her license revoked if she continued to interfere .Hell she was not doing anything wrong. She was helping a person who was dying. She was helping me the primary care giver. What bloody game was he trying to play? Even when “Joy” suggested another approach for the pain control, he basically told her to mind her own business. I love this team mentality.
After her fever went away Lois wanted to see a number of people. She saw them individually and basically told them she would be okay with what was happening and that they would also be okay. It was this night that we thought she could be leaving but I felt there were something’s left unfinished for her. She hadn’t seen Muriel (a great friend who she hadn’t seen for a number of years) or her brother David. This was also the first night she didn’t want to say good-bye to Fran. What these last two things meant to me was again result of the book Final Gifts, I knew what was happening. It was hard for me to convince Fran that Lois knew what she was doing and she would probably be okay the next day and would want to see her next time even though it was hard on Fran.
What happened next blew me out of the water.
Lois called me in and said she wanted to end it all tonight. What the hell, this was truly a curve ball thrown at me. What do I do, how do I handle this? Luckily I knew “Joy” was home (she lived across the road from us) and I asked her to come over. I was panicking. She wanted to talk to Lois alone. How I would have handled it without her I do not know. I listened at the door and as Joy told Lois I had enough Hydromorph to kill an elephant, but that’s not the issue. She explained that we don’t know how she would react etc. Why I was not prepared for this. Joy handled Lois beautifully and Lois was okay. She then told Lois to sleep on it and we will discuss it in the morning if she still was in this mind set. Lois seemed okay with the answer and Joy said to me that probably will be the last time she mentioned it as she had witnessed this before many times. I can tell you it scares the hell out of you. Joy should never have been put in that situation. Friends asked what I would have done if she had persisted. What right did I have not to carryout her wish? So I could have gone to jail so what I was about to lose the love of my life. Until others have been faced with this do not judge one.
It was from this moment on that Lois began visibly to loose the battle. The next 3 weeks were going to be so beautiful- so enlightening but so sad. It WAS the beginning of the end. I was watching her preparing herself for her final exit.
The next 8 days at home saw a bond, a trust that I guess doesn’t normally show but a trust that we all feel we have for each other. It’s a hell of away to find this deep caring for each other but I wouldn’t have missed the experience for a minute.
She had finally got to a stage where I had to take care of her completely. Wipe you with a cloth to cool you, moisten your lips, and help you to the bathroom, help you shower. As the week progressed I finally had to carry you to the bathroom, hold you up. I had to shower with you to bathe you as it took all your energy just to sit on the stool.
As you would have said –over my dead body is the only way you will ever bathe me. How appropriate, your body was dying and that’s what I was doing.
On the Thursday you had the bowel movement of dried blood. Your tumor was bleeding, you were getting tired. “Cheryl” had told me what would happen and that is the reason I was not panicking.
Friday night at 9.30 was when I felt I had lost the battle of trying to take care of her myself. Again you had a bowel movement but this time it was fresh blood. Nathan had just arrived and you didn’t really recognize him. This was something you didn’t want your children to see. He was great. Again I called “Joy” who I knew was home and she came over. Why she was available when I, when you needed her I do not know. She talked to the doctor and a decision had to be made if I (yes I) wanted you to go to the hospital. Hell I wasn’t set up at home to deal with the final ride. You knew what was happening and wanted to talk to “Joy”. She had earlier at the hospital told you what to expect. You just had to confirm with her that it was the time to go to the hospital. After you had talked to “Joy” I knew it was your time also. The decision was left up to me on the Saturday morning with the help of Joy and Cheryl who I also phoned. I thought that one of the reasons we had a doctor was because they were there to help with decisions like this. I had to call the ambulance knowing this was going to be a journey of no return.
The decision to call the ambulance was the worst thing I have ever had to do in my entire life. Going with her to the hospital is something I cannot explain in words; it will be so different for everyone.
These last 10 days of Lois’s life happened to be a gift to the ones she left behind.
As there is no true palliative care unit at the Hospital we were fortunate to have a private room. These last 10 days were again going to be a fight. I asked if we could get her into a palliative care unit (yes by this time I new there were some hospitals that had this and they were staffed by Palliative nurses and Palliative doctors). He said she didn’t need to be in one as she had a lot of living to do. It was only after I had visited the Richmond Unit that Lois’s name was put on a waiting list at this unit. (I happened to know one of the Palliative nurses who worked there and was on duty when I visited the unit.) After telling her Lois’s condition she said she has got a week at the best. I got a call from them the next day saying she could come in immediately. I told the doctor there was a room available there and suddenly the room at Delta was available under the condition that if someone else needed it Lois would have to be moved (remember there were no Palliative doctors or fulltime Palliative nurses here) Again he said she had a lot of living to do (5 days later Lois was DEAD.) It was “Cheryl” and “Joy” who got us through these final days. Anything I wanted to know I got from them. “Cheryl” could tell me exactly what was happening –yes unfortunately my wife was dying.
Friday the 13th, what a day. Lois had a “rally” Again “Cheryl” told me what was happening. That day was the most incredible thing I have ever experienced. If it hadn’t been for the book and “Cheryl” this again would have been missed. This was the day Lois was alert for approximately 15 hrs. , she dictated her own eulogy (Again if I hadn’t have read “Final Gifts” I would have missed this,) she told her friends she was leaving and that it was okay. The previous 4 days Lois had been sleeping about 20hrs a day. The next day I asked if she wanted to see Muriel and her brother David and she said yes. After seeing them I came into the room and asked if there was anyone else she wanted to see. She held up her fingers and formed a circle and then said “Every thing was now complete. She was obviously preparing for her departure. On the Sunday she told me everything was leaving her body, but she wasn’t scared. She saw her dead Mom, Dad, Grand Dad and Brother Eddy (all had predeceased her).
Lois told me on Tuesday afternoon around 1 o’clock that she was leaving that night. She was ready. She began what they call flailing (“Cheryl” explained this to me) about 4 that afternoon and it lasted till about 7). The Doctor came in to see her but she was in a coma, he said to us she still had a lot of living to do then walked out. The next thing amazed us, she sat up as soon as he left and yelled I’M OUT OF HERE TONIGHT. Well he came back looking as white as a ghost looked at her and said nothing then just turned and left the room.
I thought I was ready for the final act, but nothing can prepare you for death, but a lot more can be done to help us understand death. If only others can experience half of what Lois and those left behind did, then this will be one death that had meaning.
At 5.30 am October 18th, Lois died. I was sleeping on the couch next to her. “Joy” was working the night shift (uncanny) and the ride had come to an end.
Without “Cheryl” & “Joy” and the book Final Gifts Lois’s death would have been a “SYSTEM” death and I and friends would have missed so much.
We come into this world with such intensity, such fanfare. We have everyone and everything possible and available around us, the best equipment and drugs, Doctors, nurse specialists, even the immediate family is there to witness this great moment. We provide the best possible care for infants at the beginning of life; we expect it. It is now time to provide this same level of care to the dying with the same passion as we give the new born. Providing a death with dignity is the compassionate thing to do by making sure the dying patient is as comfortable and pain free as we can make them right to the end when they take their final breath. Things will never be perfect but we can do a lot better than what we have now.
15 years later they still haven’t achieved much even though they say things have improved. Nothing will truly change until they are willing to hear true stories like mine from other Caregivers and yes the media have to have the guts to publish them.
For the dying tomorrow could be too late.