With “End of Life” care swirling around in news releases these days, and from all the information I’ve read, I was wondering how many of you actually know what end of life care is and “when it starts.” It’s a valid question, one that I don’t think the literature or stories we read accurately address.
End-of-life care, from Wikipedia, the free encyclopedia
In medicine, nursing and the allied health professions, end-of-life care refers to health care, not only of patients in the final hours or days of their lives, but more broadly care of all those with a terminal illness or terminal condition that has become advanced, progressive and incurable.
When Does It Start
For me, it started at 11A.M., June 19th, 2008. I had just received a phone call from Tracy, the oncology nurse for Dr. Moore Sr., Annie’s oncologist.
I was sitting in my office at our antique shop when the phone rang. It was Tracy, Dr. Moore Sr.’s nurse. She asked me to take Annie to the cancer center at 3:00 P.M. to see Dr. Moore Sr. I instinctively knew that we were in trouble, as the results were supposed to take seven days, but it’d only been three days since her initial appointment at the cancer center and her bone marrow aspiration (biopsy).
I asked her if it was bad news. (What I am going to tell you next is pretty accurate—some conversations one doesn’t forget).
She simply said, “Your wife has multiple myeloma.”
I remember getting very anxious, and with an elevated voice, I asked her, What’s that? I’d never heard of multiple myeloma before.
“It’s cancer of the bone marrow.”
I asked if she was going to be okay? “What’s the prognosis?”
Tracy said in a soft voice, “It could be three or four weeks, maybe a little more,” depending on whether or not she could take treatment and how well she responds to the chemotherapy.
At that point, I started crying profusely. I just couldn’t wrap my head around that sort of news.
She kept saying, “Please calm down.”
I was a mess! I kept saying, “What will I tell Annie?” It’s only 11:00 A.M., and her appointment isn’t until 3:00 P.M.
Tracy told me to tell Annie she has a blood disorder and that Dr. Moore Sr. wanted to talk to her about it. Tracy indicated that she’d spent two days going over Annie’s medical records, and couldn’t figure out why she was still alive. Apparently, in her words, I was a very fortunate man to have her this long. What a nightmare!
Panic was starting to set in and I didn’t know what to do! My emotions were so elevated. I sat in my office for awhile and then walked around our large antique shop, surrounded by beautiful antiques, for an hour at least, just trying to focus. The tears were flowing, when it suddenly dawned on me that all these beautiful antiques were now meaningless.
A lady came in the shop, looked at me, and asked me what was going on.
I told her, and she replied, “Oh my God, I’m so sorry,” and then left.
“That was my welcome to the world of cancer,” and although I didn’t know it at the time, the phone call from Tracy was the beginning of “End of Life Care” for Annie.
And the truth is, you’ve got a guy like me, never known anyone with cancer, and had no idea what a caregiver even was, yet, it appeared that the weight of the world had just been placed on my shoulders, and the decisions I was going to have to make could be the difference between life or death. I would not wish that on anyone, yet it’s happening every day.
I could tell you how sick she was, but I’d rather describe to you the events that took place in the third week after her diagnosis.
Annie already had four broken ribs and a fractured left femur from the cancer, over a 4 month period prior to the diagnosis. But on July 16th, 2008, her right femur shattered off, which took part of the right hip with it leaving her with a broken hip too. To make matters worse, the surgeon couldn’t do surgery as her platelets were too low and left her at too high of a risk of bleeding. So they put her in a bed and she mainlined dilaudid, a narcotic several times stronger than morphine, which basically left her unresponsive for several days. On July 19th, her surgeon Dr. Pence had to do what he called high risk surgery, due to the high risk of bleeding, but he had no options other than surgery as the risk of getting a fatal infection was now to great to ignore.
She did okay during the surgery, but as her bones were so brittle and diseased from the cancer, they had to wire a titanium ball to the hip, which was connected to a titanium rod that ran down to her knee. Her new hardware looked really strange in the x-ray Dr. Pence showed me after the surgery. I still have the paper copy of that x-ray.
But it didn’t end there…They say when dealing with a person with terminal cancer or a terminal illness, if things can go wrong, they usually will. There was a side effect to the surgery that no one knew about when they returned Annie to her room. The next morning she was in a lot of pain, even with all the dilaudid she was on—Something had to be done to help her. This was a Sunday morning but the nurse decided to call Dr. Pence and see if the pain medication could be increased. He said he could not up the pain meds as that might put her to sleep for good, and that there was no way she should be in that sort of pain. There had to be something else going on. Not too long after the call from the nurse he drove up to the hospital to see Annie. He ordered an x-ray of her back, the results were shocking. During the surgery Annie’s spine had collapsed from her diseased bones. There was no way they could do surgery on her back as she was too weak, had a high risk of bleeding and would probably not survive a ten hour major surgery.
After consultation with other doctors throughout the day, Dr. Pence told me their best option would be to take her down to radiology in the morning and have the radiologist stabilize her spine. The radiologist drilled some holes in her back and used some sort of precision guidance system to insert plastic cement between many of the vertebrae which did in fact stabilize her spine to the point that her pain was manageable with high doses of morphine.
Over the next 29 months it was one serious illness after the other. In January 2009, Annie was asked by some administrative person at, but not from the hospital, if she would be willing to let the scientific community (scientists) follow her illness. Annie’s survival was beyond logic at times and often left more questions than answers. The big question on most of her doctors and nurses minds was, “how does she do it.” They were amazed. We spent over one hundred days in the hospital, and on the midnight shifts I’d get a chance to visit with some of her oncology nurses’. Nicole, one of her favorite nurses would motion for me to come out into the hallway, and she’d tell me things like—from an oncology point of view what’s happening with Annie is not normal. Basically she should not be surviving such serious events. She was in awe of Annie.
When she was placed on the ventilator later in the fall of 2009, and several days later after her survival was assured, Dr. Tom Moore, the son of her oncologist and her infectious disease control doctor said the odds of her surviving swine flu, blood poisoning, and deep double lobe pneumonia with little to no immunity, was incalculable, and that a normal healthy person would have great difficulty surviving such an event. And he was nominated to be the assistant director of the CDC while caring for Annie. So over time, it kind of sunk in just how sick she really was.
So, when I say Annie’s “End of Life” care started in the beginning, it really did. When I was continually told by various doctors from the beginning of her journey, that Annie is dying and probably won’t survive this event, of which there were many, I believed them.
Take Control Of Your Thoughts
When dealing with “End of Life” care, in my case for about the first fifteen months, I bought into the notion that she was going to die every time she had a major illness. It was literally driving me and my daughter Melissa nuts, always leading us into major emotionally low states of mind, just to have Annie do a turn around, leading us to a major emotional high. I was starting to understand, that “End of Life” care can be ongoing and that no one know for sure when your loved one is going to die. Yes, they had their opinion based on Annie’s condition at the time, but that’s just what it is, their opinion. So, when dealing with “End of Life” care, you’re going to hear the death word now and then. They may be right, but, there is a chance that they’re wrong, so always keep hope alive. Don’t let anyone’s words drive you emotionally into the ground. And remember, by staying tuned into your loved one, and not letting panic take over, there’s a good chance you will clearly see the warning signs when the end is near. I did!
When the time came for Annie, she started spitting up mucus filled with blood, which meant her lungs were slowly filling with blood. After I explained to her what was going on, and that the hospital or doctors could not help her, she just looked at me and said, “So this is it.” I replied, “I believe it is Annie.” She simply closed her eyes, laid her head back in her wheelchair, and I asked her if she would like a Xanax. She replied, “Yes please.” She passed peacefully at home 32 hours later, with her daughter Melissa and I administering “End of Life Care.” Death is so personal it needs to be handled by loved ones whenever possible. Nothing speaks greater to a dying loved one, “Than Love.”
If you’re a caregiver for a loved one and you start hearing or seeing the things I heard or saw in the beginning, it doesn’t mean you’ll understand what’s going on, but it don’t take a rocket scientists to realize that there is going to be some trouble waters ahead, and you will be responsible for helping your loved one navigate them. At that point you can do one or two things. Back away in despair, or take this as an opportunity to show your loved one just how much you love them and that you’re willing to do whatever it takes to care for them. It’s not easy, but if you love deep enough, you can do it. To me, although it broke my heart, I found it not only an honor, but a privilege to be Annie’s caregiver.
When you think about it realistically, it’s very painful watching a loved one suffer. On the other hand, I had thirty months to love her unconditionally, we talked about things, like any transgressions we may of had, and really had a chance to clear the air. If anyone tells you their marriage is perfect, I can probably sell you an acre of ocean front property in Kansas. But if someone told me they found the perfect love through care giving for a loved one, I couldn’t sell you that same piece of land, because I know it’s true. “I found it.”
So if I might, I’d like to make a suggestion. Make “End of Life” care about love, and use it as opportunity to explore new areas of your minds, just have a little rummage around and see what pops out. You just might be pleasantly surprised. I certainly was. And if something comes out that offends you or your loved one, so what, one of you is dying. Try to forgive and move on. And I can hear it now, oh no, I could never forgive him or her for that, it’s not that easy. Well, I didn’t say it was going to be easy. But, if the love you have inside of you for your loved one is true, you’ll find a way. That’s why they call it unconditional love, you’re learning to love without conditions.
True love, penetrates deep into your soul. There is no anger and no resentment. It isn’t conflicting and can be very spiritual. In my case it seemed my goal in life was to keep Annie safe, and to share every minute I could with her in happiness. I always loved Annie, however, I had to realize and accept that I never really knew the true meaning of spousal love until now. As chaotic and sad as our lives were, we were always taking the time to “Smell the roses.” Sometimes, we would look at each other and laugh for no reason. We’d both found “True Love,” but what a price we were paying. It was amazing how it affected us and our overall attitude as we pushed further into our journey of the unknown, and through “End of Life” care. I found myself loving her through one traumatic event after the other and we learned to use it as one of our greatest weapon when fighting our enemy. Cancer can take a life, but can’t destroy the spirit love.
End of Life Care, Crying With Silent Tears
In many ways Annie, even in her darkest hours was forever the teacher, and I was the students. I’d like to share a couple of things she taught me over the last two days of her life. And there were many more.
If you’re ever in the position, (I’m talking as a family-not a hospice company), and administering end of life care, hospice, comfort care, or whatever you want to call it, watch for the little things. Although Annie was being administered 20 mg of liquid morphing and 1 mg of liquid Xanax on the hour every hour keeping her in a morphine induced coma, if she heard laughter, one could see her soft lips crack a gentle smile. It was unmistakable.
Sometimes I couldn’t help but notice little creases in her forehead as if she was in pain. That worried me for a bit, as the level of liquid morphine that she was on, was such that she shouldn’t be feeling any pain. Eventually I recognized a pattern. Her forehead features were in response to sorrow in the room. Yes, she was in pain, but not from her wounds, rather from her sorrow for others.
Cry With Silent Tears
It was at that point, that I and family members gathered in the dining room for a brief moment. It was time to be her loving husband and caregiver once again. I knew Annie was slowly leaving this world for another, but as I was finding, once again, once a caregiver, always a caregiver. I was blunt and to the point. If you’re going to cry, “Cry with silent tears.” My logic was simple. Annie was on her final journey, and we had a chance to make her last few hours as peaceful as possible. If she can sense the laughter, and sorrow in a room, if given a choice, what would she want to hear on her way out. Absolutely! Laughter is good for the soul, apparently even to a person that is dying.
It’s unclear how Annie was able to communicate with us, up to a few hours prior to her death. But what is clear, is that she was communicating.
If you would like to read a truly amazing story about the final thirty two hours of Annie’s life, which was “End of Life” care in its truest form, read my blog’s…Only Love Can Break A Heart, Part 1, and then Part 2. They will certainly put dying in perspective to life, and help you understand that as sad as it may be, we can and we must be strong for our loved one. If I’d had the option to hold Annie’s hand and die at the precise moment as she, traveling with her through the world of the afterlife, I would have. However, almost five years later I know it was not meant to be that way. I believe we’re meant to share our loved one’s story, celebrate the life we had, the love we shared, and not dwell too long in the darkness, after the death.
This link will take you to Annie online memorial. Annie has had over 67,000 visitors.