It is my hope that when you read this article you will understand just how powerful the love of a loving caregiver can be. Saving a life under such complex circumstances, with the outside forces working against you is a daunting task at best. The article will discuss many of the things that went on with Annie and became the cause and effect leading up to hospice care.
For me, it’s simply time I had this conversation…It’s about love, the what if’s, understanding, education, and healing.
My inference is: In this story you will read about my wife Annie and hospice care. You will understand my conclusion reached, based on the evidence and reasoning.
My question to you the reader is, “What happens when they’re wrong.” How many patients/loved ones die each year from someone in authority basing their opinion on evidence and reasoning, allowing a precious life to be cut short. Yes it’s their best guess, but it’s not always factually true. You would be amazed at the amount of people that simply throw their hands up in the air in despair when told a loved one needs hospice, then simply let it happen. In their minds their powerless to do anything based on the information their receiving from the doctors or hospice nurse.
Often times, hospice care simply involves a patient, a nurse, and maybe a family member(s), with the nurse making the final decision on when to start administering the liquid morphine which over time will be fatal.
“Hospice employee evaluations are usually a joke. They often are “glowing” even though actual performance can be poor or substandard. I have found that usually 30-50% are behind their completion date. A better direction would be for continual evaluation and feedback. A stronger system would enable each person to self-evaluate his or her performance and judge it according to the standards. This leads us back to the absolute need for creation of standards.”
Is this the person you want to be making the decision on when it’s time for your loved one to be administered end-of-life-care in its truest form? Death!
Hospice has wonderfully cared for many people through the years, and gave them the dignity they deserved, and I’m not writing to disparage the good that they do. I’m just saying, sometimes they get it wrong, and when they do, who knows how long the person might have lived. Sometimes lack of training or understanding what is actually going on with the patient can lead to fatal mistakes by a hospice skilled employee on site, not held accountable by anyone. The decision will rest with the nurse. There will normally not be a supervisor on site.
I know from experience, every day is precious to many of those who are perceived to be facing certain death. But if they, the doctors or hospice get it wrong, but through evidence and reasoning you come to a different conclusion and get it right, the memories made after the perceived expiration date of the loved one, can and most likely will be amazing. If you do get a second chance with a loved one, even if only for a few months, make it an explosion of love, and showering of care.
Over the 8 weeks or so leading up to Christmas Day 2009, Annie had been experiencing diarrhea, constipation, and vomiting on a routine basis. We had seen several specialists during that time frame, and of course Annie had just about every gastrointestinal test or exam there was. Medical personnel were totally baffled. The general consensus seemed to be that she had a blockage somewhere, but none of the specialists could find it. CAT scans and x-rays were all negative.
Christmas Day 2009 was a very tough day for Annie. She did the best she could trying to share in the festivities, but it was obvious her condition was getting worse. As Annie’s caregiver, she looked to me for answers and to help her through some difficult times. Just after midnight I knew I had a decision to make. The doctors and specialists apparently didn’t see a need for hospitalization. As for me, I’d seen enough.
On December 26, 2009, at approximately 1:10 A.M. I called EMS. The paramedics and fire department personnel arrived around 1:30 A.M. Her oxygen saturation was in the middle 80’s, she was going in respiratory distress or failure. Annie was immediately put on oxygen and transported to Wesley Medical Center.
Once inside the emergency room, we were greeted by Dr. Liepens, who would be her attending physician.
In his admission notes, he states that “Annie is a cachectic, ill-looking, sixty-year-old female who is alert and orientated.” I mentioned this word earlier, but this time I will elaborate. Keyword is cachectic. It’s derived from the word cachexia, which means “a profound state of constitutional disorder, general ill health, and malnutrition.” The pictures shown on the Internet to match the word cachexia, are the pictures we’ve all seen of the POWs at the concentration camps during World War 2.
Melissa and I had been doing everything we could to get her the nutrients and calories she needed, but it seemed like she had a glass in her tummy. As soon as it filled up, it overflowed, and out it came. The doctors and specialists were clueless at this point, but as is sometimes the case, it falls back on the caregiver to take the necessary action to get some intervention going.
Annie was diagnosed with pneumonia in both lungs, caused by aspirated vomit that had entered her lungs. It was also noted that she was suffering from weight loss, to include persistent nausea, vomiting, and constipation.
She was given aggressive antibiotics for her pneumonia, and her stomach was pumped to remove any excessive fluid to relieve the vomiting. She was also placed on TPN, total parenteral nutrition, intravenously, to help her receive the needed nutrients.
Note: TPN for the most part will provide the necessary nutrients and vitamins to sustain the patient in the short term. It helps keep the patient stable. However, in cancer patients it doesn’t work all that well. Weight loss in advanced cases of cancer such as Annie’s is simply more complex than just adding calories and nutrients to a diet. In studies, it is said that many cancer patients started on TPN will usually die within 6 months. Reason being, cancer produces a multitude of chemicals that also lead to weight loss. That’s the roller coaster effect.
After several days she started recovering from the pneumonia, which had put her other problems on hold as her pneumonia was life threatening and assumed priority over everything else.
Over the next few weeks while in the hospital Annie had numerous CAT scans, and abdominal x-rays. The blockage simply would not reveal itself. They desperately needed to do exploratory surgery and try to find the blockage, but no surgeon would touch her due to her low platelets (Blood Clotting Mechanism). Their fear was, if they made an incision she would bleed to death right in front of them and they wouldn’t be able to save her. So everyone was taking the wait and see approach. Sometimes the problem will correct itself, but in my mind that was not going to happen. Too much time had passed.
During the latter part of January 2010, things were now getting bad, as Annie could still not keep any food down, and was getting weaker every day. My anxiety level was bouncing off the charts. I was so frustrated and desperately seeking answers to the vomiting. I mean it was really weird. As soon as she vomited the contents of her stomach out, she felt better, but was starving. She needed to eat, so they’d try her on something else. The results were always predictable, once the stomach filled, out it came…And the cycle continued on and on. The TPN will not help with ones hunger. Annie was literally starving to death.
On February 1st, 2010, a young surgeon, Dr. Nold, and his partner came into the room and simply said, they would be doing exploratory surgery on Annie in the morning. The risks were made very clear to me and Melissa, especially the potential for a catastrophic bleed, but as he put it, it’s now or never, we’re just about out of time.
Melissa asked him if her momma could die from the surgery. He said she could, “But not on my watch.” We appreciated his confidence, even though, we knew the risks.
We were anxious, but knew it was the right thing to do for Annie, as she was down near 80 pounds now, and would not survive much longer if the problem was not solved.
A different doctor came into the room that day and noted, that he warned the family of the dangers of the surgery, her chances of survival, but that Melissa and I, insisted on going forward. The doctors had been telling me for days she was slowly dying. However, Melissa and I were not going to let her die without giving her a fighting chance. I knew, if she didn’t bleed, they would most likely locate the problem and fix it.
On February 2nd, 2010, Annie had her surgery. When Dr. Nold came out to see us, he had a big smile on his face, and said she has some of the strongest platelets he’d ever seen. She only lost 10 cc of blood. He said her blockage was located about 1/2 inch above her colon, and had narrowed the opening down to the size of a pen head. That’s what was causing all her nausea and vomiting problems. He also had to remove eighteen inches of her small intestine that looked very suspicious to him. He thought she might have Lymphoma, another form of blood cancer. In the end, the intestines were being put to sleep from all the pain meds she was on, and slowly dying, making them look suspicious, and useless.
Annie now had an ostomy, created during the surgery and would now have an ostomy pouch for her body waste. In addition she had a G-tube inserted into her stomach which would allow for tube feeding.
FYI: If you’re dealing with a G-tube for tube feeding, Annie’s was 18 inches long, and protruded out of her left side. When it was not in use, like overnight, I would Tape it to the inside of her leg so she couldn’t pull it out while sleeping. That does happen, and sometimes requires surgery to replace it. And that’s not always possible with a person very weakened from surgery and other issues such as was Annie’s case.
After the surgery , Annie was getting weaker by the day. It got to the point where she couldn’t sit, stand, or even feed herself without help. (She was on a feeding tube, but one still needs an oral intake of 2,000 calories a day to show progress with weight gain.) She would not get that from tube feeding. She was now totally dependent on me, Melissa or a nurse. She was allowed to eat anything she wanted, but the surgery had weakened her body so much, she seemed to be giving up on life. Annie was tired from all the broken/diseased bones, serious/traumatic events, and the tough battles she’d fought over the past nineteen months. In addition she had developed three bed sores on her spine, exposing the bone, and one on her coccyx (tail bone). Bed sores are usually caused by being sedentary, and in Annie’s case was combined with malnutrition. They are also extremely painful.
We were now on a slow but steady course to the ultimate question. Hospice?
On February 11th, 2010, Annie apparently heard some bedside talk today about putting her on hospice. I must have been out of the room, as I wasn’t aware of that.
That afternoon while I was standing by her bedside looking down at her, our eyes locked onto each other and she abruptly started crying. We had a very sad, difficult, but gentle conversation.
She said to me very softly, “Bobby, please take me home. I don’t want to die in the hospital.”
Annie, I can’t take care of you at home. I don’t have all this equipment you need.
She replied in a very tearful voice “You can buy it at the shops.”
By that time we were both crying, and I didn’t know what to do; but I made her a promise, whatever it takes, I will get you out of here.
I knew I was going to meet with strong resistance; however, my love for Annie and honoring her wishes were driving my thought process at the moment.
I got in touch with our nurse and had her call the hospitalist doctor on duty, Dr. Dang, and tell her I needed to see her as soon as possible. I knew her well, and assumed her feelings were that Annie needed to be on hospice.
About two hours later, Dr. Dang arrived at the nurses’ station. I was contacted by Annie’s nurse and asked to come to the nurse’s station to visit with her. When I walked up to her, she was sitting at a desk watching me as I approached. I just looked at her and softly said, “Annie wants to go home.”
Dr. Dang told me she couldn’t go home, she was too sick.
So I asked the question; is she getting any better?
Dr. Dang closed her eyes, leaned her hear forward, and nodded her head no, while saying she’s losing more ground every day. “She needs hospice now!” (With a little slap of her hand on her desk.) They wanted to take her to the tenth floor at the hospital which is where they take patients for hospice care, while in the hospital. I wasn’t going to let Annie go up there, as that’s would be a one way trip for her. I desperately needed to come up with a plan quickly.
I simply said, Dr. Dang, if she is going to die, she can die at home. I asked her to get in touch with a local hospice and get them up here as soon as possible. I wanted to hear what kind of service they provided, and go from there.
I believe I was stalling for time and looking for direction. Inadvertently, I also did something very clever by telling Dr. Dang I was taking her home, and calling in another hospice company. Dr. Dang was now off the hook for responsibility of Annie once she left the hospital. No matter what went wrong, if anything did, I would accept full responsibility.
Approximately two hours later, two very pleasant ladies from Amedisys Hospice entered Annie’s room. We sat and visited for a while, and everything seemed okay, until we got to the comfort care part. (Keep in mind Annie was laying in her bed and listening to our conversation.)
I asked them what happened if Annie needed IV fluids, a blood transfusion, or platelets. I didn’t have a clue what their rules were.
They told me they can’t administer any life-sustaining fluids.
For me that was totally unacceptable as it took away any chance for the possibility of Annie turning this event around. The odds were, she was going to need IV fluids for hydration, and without them she would surely pass.
So that became the deal breaker for me! I had no intention of taking Annie home and just let her die without a fight. My gut instincts told me that if we had the perfect storm, so to speak, we could turn this ship around.
Can you see the dilemma I’m in? I would have gladly taken her home with hospice, but unfortunately hospice took all chances of survival away from her. Annie and I had already been through hell and back with this cancer, but I was seeing a window of opportunity here, no matter how small, and I had no intention of letting anyone take it away from Annie, or me.
Dr. Nold had fixed her intestine problem, and yes, she was very ill, frail, and weak; but getting her home in her familiar environment might help. Loved ones spirits are often lifted when they get away from the hospital environment, and often respond well. It was simply a roll of the dice.
After bumping heads for a few moments with the hospice nurses, I switched gears and asked them if there was any way they could help me get the equipment home that Annie desperately needed. To my surprise and delight, one of the ladies said they had a home health agency that would work with Annie and take all the necessary equipment to our home. But added, you are was making a big mistake. The lady then made a phone call, and arrangements were made for the company representative to meet me first thing in the morning so they could make an assessment of what Annie needed.
A few people didn’t agree with my decision, but I didn’t care. I didn’t base my decision on what other folks thought. I was supporting my wife, and if it turned out to be a disaster, so be it. Seriously, what was the worst that could happen? She’d die at home, surrounded by love; and this is what she would want. Beyond that, under the circumstances, “Love could not make a mistake, but it could create an opportunity.”
I, and many others, including some doctors/nurses felt that Annie might be receiving some sort of intervention with her care, that had helped us through some tough times. To this point, her journey through cancer had defied logic at times. Her situation was bad, and Annie appeared to be dying, but what did that mean. “It ain’t over until it’s over.” I guess!
This quickly became an ethical event with me. I had the Durable Power of Attorney to choose between life and death for Annie. And I choose “Life.” I can’t explain the feeling, but when I made that decision not to do hospice or put her on comfort care, I felt a strong burden was taken off my shoulders. At times during Annie’s illness, and there are some documented stories, where I made some strange decisions based on what I perceived was best for Annie, outside the realm of medical protocol, and we did just fine. Like many things in life, one has to speculate to accumulate, and in a strange way that pertains to extending one’s life too.
February 12, 2010: Total Home Care showed up this morning and after speaking to some of the medical staff, they were able to identified everything they needed. They gave me a phone number and asked me to call them tomorrow and give them an approximate time we would be home. They’d be waiting at our front door with the equipment.
Taking Annie home as frail as she was, and understanding things could quickly go very wrong, was a challenging thought for me. But I did everything I could do to keep the negative impulses away, and for now, focus on the fact that Annie would be going home tomorrow. We’d been in the hospital for fifty-one days, and while there: she had ten chest X-rays, twenty abdominal X-rays, ten CT scans, approximately seventy-five blood draws and countless other tests. It was time to go home.
February 13, 2010: The first thing we did this morning was check her weight. It was seventy-nine pounds. She had lost a considerable amount of weight over the past couple of months, despite all the effort that went into her care.
Annie couldn’t walk or stand, so I knew it would take me a couple of hours to sort the room, gather up all our belongings, and get the vehicle loaded. Once I got things organized, I called Total Home Health Care and told them they could expect us around 3:00 P.M., and that my daughter Melissa would was there waiting for them. A nurse helped me get her in the wheelchair, and wheeled her down to the car for me. It wasn’t all that difficult getting her in the car as she’d lost so much weight.
On our slow ride home, Annie was very quiet, and just sat and stared out the window of our car. We did have one very important conversation where I made her a promise that I would be relentless in her care-giving, but she had to agree to help me by fighting as hard as she could, as I knew, no matter what I did, if she didn’t have the will to live, she’d lose this battle.
How does one fight as hard as they can? In addition to tube feeding, for the first two to three weeks Annie was home I had to hand feed her. Fighting as hard as she could, meant eating whether she felt like it or not. But I fed her things she’d always enjoyed as snacks. Calorie loaded foods, like raspberries on top of Vanilla Ice Cream, deep fried pancakes with syrup and mandarin oranges on top. I had a goal, 2,000 plus calories a day, which included the tube feeding.
When we arrived home, as I got her out of the car and into the wheelchair, I could see she was trying to crack a smile, and I knew she was happy to be home. As promised, Melissa was there with the home health personnel and all the equipment. About an hour and a half later, after receiving my training on the equipment, they were gone, and Melissa and I had Annie all to ourselves.
As Melissa worked to make her momma comfortable in her bed, I went into the dining room, sat down, and tried to come to terms with what happen the past couple of days. It occurred to me that after our narrow escape from hospice and death, we now had nothing to lose and everything to gain. And there was no longer any doubt in my mind, that we would fight this continuing epic battle as a team, with all the grace and love we could muster.
Truth is, it was now becoming apparent that Annie’s struggle was nearing its end. I knew this, as each event was increasing in intensity, they were also draining her of her much needed strength.
After leaving the hospital Annie survived another 8 1/2 months. It was tough at times, but Annie and I enjoyed one of the best summers of our life. We loved and cherished every moment of our last summer together. Sometimes the stolen moments in life are the best.
Note: As I said, Annie had a Durable Power of Attorney that allowed me to make all decisions for her, on her behalf when she was considered not competent to do so. Imagine having the power to choose life or death for a loved one…Then imagine not having a Durable Power of Attorney, and the choice becomes the hospital’s. Annie wanted to die at home, which was one of her core wishes. My position as her loving husband and caregiver, was to honor her wishes to the fullest. The decision I made was only complicated because I made it that way by, understanding her core wishes, but not understanding what the underlying problem was. She was not begging for her life, she simply wanted to go home to die. The problem was, so many people were pushing her towards hospice, and skewing my ability to think properly. I heard the words “Let her go Bob, she’s suffered enough.” Easy for them to say, they had not loved or been loved by her for 38 years, built their world around her, and are not responsible for taking her life. As a caregiver, sometimes we have to cut through the cobwebs in our mind, think outside the box and figure out why things are the way they are. For example, why was she dying? All the doctor’s would say is she’s slowly dying and losing more ground every day. It was me that figure out she was dying of malnutrition, and that was reason. It was a simple process of elimination. In the end, I knew if I could get her home with the tools I needed, we were in with a chance. To me, malnutrition is not something one should have to die for, given the circumstances surrounding her illness that caused the lack of nutrition. Annie was weak, but her blockage was no longer a problem.
It’s so important for each of us to have a Durable Power of Attorney. However, make sure the person you are trusting your life with has your best interest in mind, clearly knows your core wishes, and you have reasonable expectations he/she will follow them. On the lighter side, if your friend stands to inherit a substantial amount of money when you’re gone, I would probably steer clear of making that person your POA. Just a thought!
The lead in picture of this article was taken 4 months after Annie came home. That day we were at the Wichita Intrust Bank Arena watching our grandson Andrew graduate from high school. It’s a large arena, over 14,000 seats. When I started pushing her into the seated area looking for a comfortable place for her, a lady walked up to Annie, me and the family and said, come with me, I have the perfect place for you and your family. She seated us in a beautiful, large VIP box. It was so cool. Annie was able to lean on some railing, shout and blow kisses at Andrew as he walked onto the stage. Precious Memories!!
That was a very long fifty-one day stay in the hospital, and very tough at times; but with Annie there never seemed to be a dull moment. There was always something going on.
Here’s one of those priceless moments that happened around January 21st, 2010. It was in the early afternoon, and I was sitting in my recliner reading the sports page while Annie was resting. It was not long before I heard the voice that only a husband can recognize. I knew I was in trouble, but had no idea why.
In her quiet stern little voice she said, “Bob, would you come over here for a moment.”
I said, yes dear, what do you need.
She asked, “Are you stupid.”
I just stared at her and said, “I don’t think so.”
“How much are we paying for this apartment.”
I tried to explain to her that this was not an apartment by telling her to look around at all the equipment and the IV’s in her arms. After pointing a few things out to her, I started recognizing the confusion in her eyes and changed my thought process. When she got confused, I’d learned over the course of the illness to go with the flow, as I didn’t want her to feel that way.
So I replied, probably two thousand dollars or more a day.
“Well then you must be stupid.” She asked me to walk over and look outside our eighth floor windows, and tell her what I see.
As I scanned the area, I wasn’t really paying attention, as after several weeks in the hospital, I knew what was out there, so I told her. “I see tall buildings, cars, and many people.”
Her reply was, “exactly.” For that kind of money, there should be a beach, or at least a swimming pool! (The actual amount as based on the bill was eight thousand a day. What would she have called me it she’d known that?)
I really couldn’t argue that point! So I decided to let her take charge, by asking her what she’d like for me to do?
She indicated that she wanted an apartment across the hallway. She told me that “she kept hearing people over there and they were having fun.” (That was the nurses’ station)
So I asked her if she wanted me to go to the office and get our apartment changed.
She was shaking her head up and down, meaning, yes I do.
She weighed about eighty-five pounds, could barely move, but she wanted to take charge of her life. I admired her for that.
I left, went to the nurse’s station, found her nurse, explained the situation to her and she started laughing. I said “it’s not funny, you’re not living with her.”
She said “okay, go back to the room and I’ll be down in a minute with her anxiety meds.”
I told her I wasn’t going anywhere until Annie had her medication, which seemed to make her laugh even more.
She then went to the closet, got the medication and went down and gave it to Annie.
As expected, when I went back to the room she was asleep. Thank heaven! I knew when she woke, she wouldn’t remember the conversation.
One morning around 3:00A.M., I woke to some noise, and as I looked over towards her bed, I saw her standing by the bed dusting a table. She had climbed over the bed rail, IV tubes and all.
I said “Annie! What are you doing?”
She replied, “I’m just having a little tidy up.”
I got up, stood by her, and in a couple of minutes when she was satisfied that the table with all the medical stuff on it was clean, I lowered the bed rail and helped her back into bed. It got a little crazy at times, and she definitely kept me on my toes. But, that’s the way it was. It was just a part of her tenacious will to live.
Always remember, strong narcotics can mess with a patients mind over a period of time. If you can, just go with the flow. It’s not about being right, it’s about caring for the patient or your loved one.
Only Love Can Break A Heart, Part 1, Part 2, & Part 3, deal with Annie’s death and walk you through hospice care conducted by Melissa and me. No outside intervention. You’ll see the power of love and what it means to a dying loved one, and who made the final decision to start the process.