If you haven’t read Hospice Party Part 1, perhaps you should, as this article, Hospice Party Part 2, will put the article in perspective and lead to an understanding and education for some.
Let The Conversation Begin–End of Life Care
I knew I was being a bit deceptive, but sometimes it can be a delicate balancing act, between honoring the doctors wisdom, and the wishes of the patient. I always did what I thought was best for Annie and rarely second guessed myself. I knew with all the negative information coming in, the bleeding, and then hospice, Annie had to feel as if her life was out of control. My job was to get her to refocus, in understanding that at the moment, medically speaking, we were still in control over her destiny. I was performing a delicate balancing act at the moment; but I’d been doing that for twenty-nine months, and it was nothing new or complicated to me. As long as I stayed strong and supportive of her wishes, without flinching, it would help with her anxiety.
Annie knew hospice and comfort care were two different entities based on my perception and how I identified them to her. She also knew that before hospice could do comfort care, she had to be on hospice, which she now was. Comfort care is what I called “End of life care.” Once started, there is no turning back and the patient will pass from the administration of liquid morphine over time, or perhaps die from their specific illness or another related illness. No death certificate will say, “morphine induced death. (This will be explained in a couple of paragraphs later on here).
All I could do now was play it by ear. It would now be a minute by minute, hour by hour vigil. I emptied her Ostomy pouch several times a day and always checked her urine for blood. I’d have a good idea when the time was near. At the moment, I didn’t have the power to choose death over life, and that was exactly as it should be. I loved Annie more than most people will understand, and felt I was being guided, or my decisions were being influenced by a greater power. The rest of our journey needed to be focused on loving Annie; helping her relax and making her comfortable.
October 23, 2010: Today was a bitter sweet day, as Leslie had to return home and get back to work. Annie was truly going to miss her, but thankful for the time they had together. I assumed, as did Lesley, that Annie didn’t have much time left, but we really had no way of knowing for sure. Leslie worked for the Los Angeles school district and without certainty that Annie’s death was imminent, she had to return home.
Personally, I think it was a blessing for Lesley. She loved Annie dearly, and watching her pass away, in my opinion, was a memory she didn’t need. She would be able to hang onto the fun times we all had during her visit, and the good memories they made.
This afternoon a hospice nurse came over to talk to us. She had a brown paper bag in her hand that held the liquid morphine, liquid Xanax, and liquid atropine, which would be the comfort care medications I would be using when the time came. One of the first things she did after our warm greeting was take me into the kitchen and give me instructions on how to administer the medications.
Here’s the instructions I was given. The liquid morphine, 20 mg dose, was to be placed down in her cheek area beside her tongue, and once started, it had to be administered every hour on the hour without fail. There would be no turning back. Liquid Xanax was placed in the same manner at the same time, every hour on the hour to deal with any anxiety. Ever wonder why they give the caregiver atropine? It’s for the death rattle when it starts, and believe me, it’s a very distressing and unpleasant sound. Atropine will relieve the distressful sound in about 10 minutes or less.
The nurse sat on our sofa, while Annie and I sat across from her on the hospital bed. Things were going fine for a while, and then we hit some turbulence.
She said “I’ll be coming over twice a week to check on Annie.”
I asked her what she’d be doing when she comes over.
She stated that she’d be checking her vital signs and general health.
I asked her what I was supposed to do if Annie started having a major bleeding event while she was not there.
Just give me a call and I’ll come over.
But, “You’re over twenty minutes away, and if it’s in the middle of the night, probably longer.”
Her words…You can go ahead and start her on the morphine as you are a competent caregiver.”
This is what I told the nurse in general terms.
If Annie starts a major bleed in the middle of the night, there will be no need to call you as it will be too late. All I will be able to do is hold her and love her through it. As far as her vitals go, I can do that, I do it all the time. I already knew she couldn’t have platelets or blood, which was an issue to me, but not going to change my decision on hospice. What was boggling my mind was, there are one hundred and sixty-eight hours in a week, and if I was only going to see the nurse for two hours a week, what did I need hospice for? What were the odds of a major event, which I knew was coming, happening while she wasn’t here? My calculations put it at 98 percent. This all evolved because I was a competent caregiver. I may be competent, but I’m still human, and I was very worried and afraid of what potentially would be a very traumatic event. I had never seen a person bleed to death from cancer, but Annie’s nurse and good friend Beverly, had seen a few. My goal was not to let that happen, but it seemed I was going to be on my own. Apparently, I would have to make the decision when to start comfort care based on what I knew. So far I was comfortable with the decisions I’d made thus far, so I was just going to have to use my best judgment.
there are one hundred and sixty-eight hours in a week, and if I was only going to see the nurse for two hours a week, what did I need hospice for?
It’s difficult having and end of life conversation, when the person that’s going to pass is your loving wife, and she’s sitting right beside you as the details of her impending death are being discussed. Yes, I could have found a better way, such as taking the conversation outside, perhaps on the phone, or even another room. But, what’s the point, at this point there is no point. Annie knows that the train has left the station and is not coming back. It was now time to be honest, and somehow find the courage and wisdom to put forth a plan built on integrity to help her through, what to her must be very traumatic times. I surely was feeling the chaos and trauma, so what must she be feeling. All I knew at this moment, was that I had to somehow take control of this situation.
I thought hospice would be playing a much greater role in her care, and that I’d see the nurse on a regular basis; moreover, she’d help me make that death verses life decision when the time was right. She could warn me of any impending signs that I may have missed and I could take the appropriate action. What was going on with Annie was not your typical hospice case. Therefore, if I’d started administering her the comfort care drugs before the signs of the impending event, that can only be called assisted suicide. Giving her baths and checking her vitals were not necessary, as I said earlier, Melissa and I took care of all her hygienic needs.
It wasn’t going to work that way for me. I was starting to see, I was clearly going to be on my own with Annie, and to start preparing myself for the tough decision I would soon be making. At that moment something very strange happened to me. It was like something slapped me on the back of my head, and said, “What are you making such a fuss about, I will let you know when it’s time.” Maybe the mysterious voice, which may have been my emotions, helps explain the reasoning behind what I was about to do.
I said to the nurse, “I’m going to put everything on hold for now. We’ll see Dr. Moore Sr. on Tuesday, and I want his advice.”
The nurse said we could no longer see Dr. Moore Sr. as Annie was now on hospice and their responsibility.
I guess I was just having trouble letting go of Annie, as at the moment everything was so conflicting. So I told the nurse, regardless of the consequences, as I was not withdrawing her from hospice, I was taking Annie to see Dr. Moore Sr. on Tuesday morning. I knew it could potentially create an insurance issue, or she could have a catastrophic event over the next couple of days, but it was a risk I felt I had to take.
Annie was in a very precarious situation and it truly was quickly turning into a nightmare, but as I was seeing it, the pieces to this puzzle weren’t falling into place. At the moment Annie was aware of her circumstances, but was not bleeding. I couldn’t just put her to sleep, and it was obvious, the odds of hospice being there to catch any impending signs was not going to happen. In my heart, I knew I was making the right decision for Annie, and no matter what happened, I was at peace with it. Annie never said a word; she just sat and listened. I knew what Annie wanted.
I made this statement a couple of times before, that a part of Annie was becoming a child. After the nurse left, I wheeled her into the dining room, to sit at the dining room table with me.
She looked at me, and in her excited little voice said, “Bobby, if I take my medicine, I’ll get better, won’t I?” Then again, “Won’t I Bobby?”
“That’s the plan Annie.”
Her statement overwhelmed me. All I felt was a sensation of total love for the person that just spoke to me. Every time she took on her child like personality, I called her “Little Annie.” I knew Little Annie was out there, as she had popped out a few times before. But not to this extent! Now I would be watching for her. What a treasured moment!
October 25, 2010: Today, we had to go over to Heartland Cardiology to see Dr. Farhat. Her heart was working fine with no real problems; but he was concerned about her platelet count. Dr. Farhat and Annie visited for a while about the hospice issue and her general health and well-being.
Dr. Farhat had been Annie’s cardiologist and friend for 12 years or so. Getting one last visit with him, even though it wasn’t said, “they were saying goodbye to each with a hug.”
His comment on hospice was; “It’s a choice that we all might have to make someday, and it’s going to always be on an individual bases and circumstances.”
Then he looked at Annie and basically asked her if she knew why she was still alive. She just stared at him and he pointed at me. He told her, “There’s is absolutely no doubt in my mind.”
Just imagine, I had the power of attorney allowing me in certain circumstance to decide if she should live or die. That’s dangerous! I guess what I’m saying to you is, if you give someone a durable power of attorney to act on your behalf when you can’t, like the one I had, make sure you know them well and trust them. Write a note, or just make it clear what your wishes are. Annie trusted me, and as difficult as it was at times, I kept my word to her. But here’s the deal; if Annie had of wanted me to let her go gracefully, I would have. I guess I am a freak for wishes, but I believe in the sanctity of human life, and all that goes with it…empathy, compassion, love, and their wishes.
By the way, our last summer together as it turned out, was the best summer of my life! One I shall never forget. That one decision I made back in February, allowed us to love each other, “One more time.”
October 26, 2010: We made it! We were going to see Dr. Moore Sr. This is kind of how our life had been the past thirty months. When we got there, we went straight back for a CBC, and then back to the waiting area.
When the nurse came to get us and I was wheeling Annie into her room, I noticed Sarah, Dr. Moore Sr.’s nurse standing down the hallway near Dr. Moore Sr.’s office. She was looking over her shoulder at Annie and me with her hand behind her back, waving at us. I remember thinking, that was rather odd.
Apparently, this morning Dr. Moore Sr. was in a staff meeting, and one of the other oncologists walked over to him and said he was sorry to hear about Mrs. Harrison passing away while she was in the hospital, and he was out of town. As you can imagine he took the news a little hard.
When he got to his office that morning, he went straight to Sarah and told her the news. He asked her to call me for confirmation.
She said she wasn’t going to call me; if Ann did pass away, Bob would be grieving, and she wasn’t going to bother me.
According to Sarah that went on until lunch time. She told me Dr. Moore Sr. finally gave up, saying in a gruff voice, we will just have to wait and see if she shows for her 1:00 P.M. appointment then, won’t we!
Sarah said, “I guess we will.”
What Dr. Moore Sr. didn’t know was that Sarah immediately checked with someone after he initially spoke to her, so she knew Annie was alive. She was just having some fun with her boss.
When Dr. Moore Sr. came into the room, he was laughing and grinning from ear to ear.
He said, “Hi, Momma!”
He then asked her if she wanted the good news or bad news first.
Annie said she wanted the bad news first.
He told her rather nonchalantly with a strangely curious look on his face that her platelets were “0;” and that she didn’t have any. That is catastrophic!
He carefully examined her mouth, and could see where she’d been bleeding, but wasn’t bleeding at the moment. He basically said that she had a relapse from her transplant, and failed her reintroduction of a very low dose of Velcade. He further stated that he was sending us over for a transfusion of platelets, and if they didn’t work he’d have her there over the next several days on an outpatient basis. He also told her that he had ordered the blood bank to resurrect the HLA compatible list and to get HLA donors in for her. HLA platelets are a close match to hers, and she had them before. They would usually give her a little boost, but it seemed to disappear overnight.
I think I had just sat in on one of the most amazing conversation, or lack thereof I’d ever heard. He just casually told her she had no platelets, and she took it like it was no big deal. For that moment it seemed like their minds were locked together, like “so what.” “What else is new.” I was speechless. I guess I expected a stronger reaction from the both of them. But that wasn’t the case. It was “just business as usual.” Heck, I didn’t even know there was such a thing as “0” platelets.
At this point, I walked Dr. Moore Sr. through my conversation with hospice, and told him the only way Annie could have transfusions was to withdraw from hospice. I don’t think he knew she was on hospice. He was a wonderful caring doctor, and kept good eye contact, listening to me carefully, making sure he understood what I was saying. Once I finished, I felt a great relief come over me. I was out of the equation for the moment.
He asked Annie if she understood what he and I’d had just talked about.
Her answer was a straight forward and simple “Yes.”
He then asked her what she wanted to do.
She said, “I want to fight.”
He put his right hand up to his face, thumb under his chin, with his fingers sticking up and whispered to her. “Bob should open up a hospice, he is really good.”
With that, I told him I would call hospice and withdraw Annie, before we got to the infusion center.
He got up to leave, and then started laughing, saying “Ann, do you want the good news now?”
She wiggled in her chair a bit with anxious excitement saying “Yes.”
I looked at her—the sparkle in her eyes was priceless.
He said, “Well, the good news is that you’re still alive.” He stood in front of her and told her the story of her supposed death. We all had a good laugh! That was fun, and we all really needed it.
That was always the thing about Annie. She wanted to fight the disease, and I knew it. I also knew she needed to tell someone competent other than me—someone that was nonbiased. He let her make her choice and she made it. I was now released from the decision making process on whether she’d go on comfort care or not—at least for the time being. Yes, she had “0” platelets, and desperately needed the count to come up. She knew that, however, she only had two choices at this point. (Time to invoke a quote from Shawshank Redemption again.) She could “get busy living or get busy dying.” I was going to fight for her no matter what, and it made me feel once again, the right decision was made. The only difference was “She made it.”
Dr. Moore Sr. was not opposed to hospice; but he was a believer in folks not dying prematurely. At the moment all the signs and science dictated that at some point she was going to start bleeding and could bleed to death. I think he felt as I. We’d deal with that problem when it happened. With immediate intervention I should be able to slow down or stop the process with the morphine. Morphine in liquid form slows the body down rather quickly and with a little notice would tend to ease the bleeding somewhat. I knew this sort of thing happen quite often, and sometimes wondered how many people died prematurely at the time. Yes, it would appear it was approaching end times for Annie, but looking back to February 2010, based on what appeared to be sound medical advice, Annie probably shouldn’t even be here. But she’s here and we have to deal with the situation as it is, and not look back to what it was. (Keep in mind I view life as precious, and I believe everyone deserves a chance to move forward as long as they can. Two bags of platelets could shoot her count up 30,000 and although still critical and highly unlikely it has happened before. So throwing in the towel is not always not the correct option.)
After we left the Cancer Center, I called hospice and withdrew Annie. While Annie was getting platelets, I called her case manager in Colorado and explained the situation to her. She knew me well, and my commitment to Annie’s best interests was never questioned. She was okay with Annie’s decision.
Kenny Chesney, a famous country singer wrote a song with the lyrics, “Everybody wants to go to heaven, but nobody wants to go now.” Annie was a classic example of that song.
After the transfusion, we had to wait an hour for the results of the platelet count to come back. They were at 3,000, which was more than I expected, but nowhere near enough to make a difference. The nurse at the infusion center told us to be back tomorrow morning for more platelets.
October 27, 2010: Annie received another unit of platelets today. When the results of the count came back, they remained unchanged—still 3,000.
These were very sad times for Annie and me, and it appeared we were fighting a losing battle. She also received one unit of red blood cells, and would get another unit when we came over tomorrow for more platelets. This was all being caused by the cancer in the bone marrow. With no treatment options available, transfusions become useless. In other words, the patient becomes refractory, and transfusions no longer work. Her body would becomes resistant to whatever they tried.
In the beginning it was difficult for me to understand how a woman that seemingly did most things right regarding her health, was diagnosed with such a rare cancer. Now, piled on top of that, it seemed the thing that was going to bring her down, was the rarest form of death by that same disease. There were so many “what ifs” going around in my mind, it was difficult to focus at times.
That evening, I was sitting at the dining room table and saw Annie shuffling to the bathroom. She didn’t walk properly, as she didn’t have the strength to lift her legs, so she slid her feet along the carpet. When she came out of the bathroom I looked towards her, and noticed she had a very sad look on her face. I must have said this one hundred times through the course of her illness, always with a soft voice.
“What’s going on, Annie?” Her little lips were puckering up as if she was going to cry. I walked over to her and put my arms around her.
She said, “My urine is full of blood.” I didn’t say anything at that moment as there was nothing reassuring I could say.
I took her hand and helped her over to her bed. I then told her I would place a call to the on-duty oncologist, and see what he thought. I spoke to Dr. Reddy again. I told him what happened, and was curious as to the cause.
He said he didn’t know, but that internal bleeding can be caused by many things. However, he made it clear that she was now most likely starting to bleed internally.
I simply told Annie he didn’t know what the cause was and that we needed to keep an eye on it.
Normally, she always let me check the urine after she went to the bathroom. For whatever reason, this time she didn’t let me. I guess she didn’t want me to see the blood.
I knew now, beyond a doubt, we were approaching “end times” for Annie, and going to the hospital was not a option, as they couldn’t help her either. Even if you have normal platelets, with internal bleeding, they have to open you up and stop the bleeding. There was literally nothing anyone could do for Annie.
October 28, 2010: Today Annie received a unit of HLA platelets. While we were waiting for the results to come back, they started transfusing her second unit of blood. Her platelet results were catastrophic under the circumstances. They were now at 1,000. While she was sleeping and getting the rest of her blood transfusion, I checked her ostomy bag. My heart sunk when I got the visual of the bag; it was full of the dark red blood. I motioned for the nurse to come over. When she looked at the bag, I could see her eyes swell, and with a sad look on her face, she said very softly , “Oh no.”
I found myself in a real dilemma. When Annie woke up, I needed to take her to the bathroom and unload the contents of the bag. I knew she was going to see the blood as I drained the bag, but that was another one of those sad realities of cancer, that there was no way to avoid. When I unloaded the bag, as always I was on my knees holding the container for the contents to flow in. As I looked up at her and into her eyes, I could see that she was starring at the blood, and the look in her eyes made me think perhaps she was trying to come to terms with her mortality. But she didn’t make a comment, and nor did I. There wasn’t a single word of comfort or encouragement I could give her at the moment.
When we left the infusion center, the air in the car was so tick I believe I could have cut it with a knife. I think we both knew, the blood we saw in the ostomy bag had just set the stage for what was to come. We were now navigating our way through a new frontier, and our fear of the unknown was driving our emotions.
That evening when I unloaded and changed her bag, all I saw was blood.
October 29, 2010: We went back to the infusion center for more platelets. The results of her count came back at 1,000. There was to be no more miracles.
It was on this day, while Annie was receiving her platelets at the infusion center that she asked me another timeless question in a very soft voice. “Bobby, can I die at home?” I gave her a big hug and told her that’d be my promise to her. We both had lots of tears, as did a couple of the nurses attending to her.
After that gentle conversation, and our emotions had waned, she started staring at me.
She asked me to look into her eyes, and tell her what I see.
After a moment of silence I responded; I see sadness, humanity, and love.
She then asked me to look deeper.
I replied, “Annie I don’t know what I’m supposed to be looking for.”
Her next words, once again were, “look deeper.”
As I stared into her eyes, her eyes were locked onto mine.
Annie, “I see your soul.”
She asked me what that meant.
After a pause I replied. “I see what you are, what you’ve been, and I know where you’re going.
With those words, she started teaching me.
“Bobby, I know I don’t have much time left; promise me you’ll surround yourself with people who love and care about you. If you do meet someone, make sure she loves you and has a kind heart.”
I knew what she meant as she’d made this statement months before. But unlike then, I couldn’t tell her to stop worrying and that everything was going to be okay.
At that point, I asked one of the nurses to keep an eye on Annie while I went outside to get some fresh air. I really could have cared less about the air, but I needed to clear my head. I just didn’t know where to put all this information. It was if there was a cobweb of stuff circling in my mind. But, as I pulled away from those thoughts, I instinctively knew my focus had to be on Annie, and I was going to pull my socks up, go back in that room and take care of her.
All through my life, I watched sad and tragic stories of people dying in movies. I never once considered that would be Annie and me.
Remember: “If you love someone today, try to love them more tomorrow. Life Happens.”
I can’t describe accurately how I felt seeing the blood in her pouch yesterday, knowing what I knew. It’s one of those times when you want to pick the person up, wrap your arms around them and never let go. So much love!
October 30, 2010: Today, we went back to the infusion center for more platelets and was told that after this batch, there were no orders for more. We were to go see Dr. Moore Sr. on Monday for a CBC. I’m sure he was going to give her the grim outlook and in his own way say good-bye to her. I didn’t stay around this day for the platelet results as it no longer mattered. Every time I changed her bag, it was predominately blood, meaning all the blood transfusions she had over the past few days were not making a difference as she was losing more blood than she was gaining.
Things were now starting to pile up on Annie and me. The conversation with Annie about comfort care was now becoming a necessity. I didn’t know how Annie was feeling inside, but I knew it was an awkward time. She didn’t cry over her new reality; and really didn’t talk about it. We did the only thing we could do at the moment: get on with our day. Annie was a proud woman, and even in the face of extreme adversity, always held her head high.
The last date posted in this article was 30 Oct, 2010. Sadly Annie passed away late afternoon of 2 November, but not before she took us on one heck of a ride. She was an amazing lady and fought to the end. I’ve already published a 3 part blog on her death, “Only Love Can Break A Heart.” I’m sure many of you are going to want to see how these last two articles on the Hospice Party played out.
I would encourage you to read them. Very educational, and clearly show you why sometimes hospice won’t work the way is supposed to. At the same time you’ll witness the death of a lady, in a way seldom seen. I was amazed that even while dying Annie was always the teacher, and a true gift to this family and in some cases the world, one that just kept on giving. Also it will offer up the possibility and opportunity for you to care for your loved one at the end, as it is explained in detail. My daughter Melissa did her momma’s comfort with these words; my momma brought me into this world and I can help her out!
Annie has an online memorial, considered one of, if not the best online memorial’s there is. I built it to help me with my grief, honor her legacy, and help others. Her memorial has had over 65,000 visitors.