When Annie looked up at me from her hospital bed and said, “Please take me home–I don’t want to die in the hospital.” With those words, Annie reserved, and deserved the right to die at home.
Annie had five core wishes when diagnosed with terminal cancer. One of which was dying at home, where she felt comfortable and safe. There was no way on God’s green earth that I would deny her that request. What’s the point of a terminally ill person having a wish list when dying, if the wishes are not followed by her loved one(s). There is no point!
As I sit here today almost five years post Annie’s death, I can still see her beautiful creation. She was a masterful decorator, and loved hanging wallpaper, mixing and matching beautiful colors.
Not much has changed in here since her death. If she wants to pop in and set in an old familiar chair, it’s still here and where it was. Turn a lamp on, no problem, it hasn’t moved either. Nope, I’m not saving the house for the day she mysteriously returns, but what I am doing is “loving her.” When I look around, I see and I feel the love. The thought that I had the privilege to be her caregiver until the end, and that she passed in our home, gives me a warm heart. You see, love doesn’t hurt, but the pain from loving can be very traumatic at the end. But I believe, and am convinced, that deep pain is best dealt within, “a house built on a foundation of love.” Our home was the most appropriate place for her rite of passage to occur.
What’s The Problem
From reading some recent articles on dying at home, it seems to me the authors speak more of themselves, and how hard it was on them, while lacking the total commitment to care for their loved one in a meaningful way. Annie’s care could be very difficult at times too, but I didn’t care. My commitment and dedication in making sure her last days or hours on this earth were as comfortable as possible, with her wishes being lovingly fulfilled, seemed to become my soul purpose for existing.
Simply put, life is about love and being loved, and if that is not one of your personal core values, care giving for a loved one dying at home is probably not for you. If you can’t provide exceptional quality care for your loved one, then by all means turn them over to hospice or leave them in a nursing home. What’s the difference? A dying patient will feel your love, or lack thereof. And I think that is a real tragedy. Everybody wants to be loved and they need to be loved until the very end. Dying can be a cold journey for a loved one, and when handled by a lukewarm caregiver loved one it’s probably even worse.
Recently I read a blog about why dying at home is not all that it’s cracked up to be. It’s a very good blog, but in my opinion does not address the true nature of love. What I saw in the blog was some useful information, but also chaos and guilt. And it was a tremendously successful blog. Why! Because it’s based on many truths, and speaks to how it is for many caregivers.
Anytime a loved one starts feeling like a burden to a caregiver, I can guarantee you things aren’t going to go all that well. The moment the resentment starts settling in, things go South from there. Chaos starts to set in, and form that point on their becomes a loss of control by the caregiver and the patient senses the chaos and reacts accordingly.
It Doesn’t Have To Be That Way
I like to think of care giving during end of life care as, separating the pretenders from the contenders, and then there is the champions which are those that love deeply.
If you’re a pretender and talk the talk, but can’t walk the walk, let the professionals handle your loved one. They’ll do a better job, and the loved one will be better off, as you’re probably going to muck things up anyway.
If you’re a contender, you will most likely have a sense of self-confidence and be up for the challenge. You will get tired, frustrated, aggravated, and question your own sanity at times, but you will do your best to help your loved one through to the end, and be somewhat successful. And my definition of successful is—was the loved one comfortable at the end and did they feel the love. If the answer is yes, you did a great job making the best out of a very difficult situation.
For those that have a deep love for the person their caring for, “you’re an Angel.” You may not do everything right, you will make some mistakes, but you will recover and whatever it is that you’re doing for your loved one, it will be done with selflessness, empathy, compassion, integrity, love, utmost of respect, and from the heart…And that’s as good as it gets. The loved one will pass over with love in their heart.
You’re the caregiver that pays attention to the little things. A dying loved one can be like a small baby, very fragile, and needs to be handled like one. Are the sheets under the baby wadded up causing the baby unseen discomfort. Is it hungry, does it need it’s diaper changed. Are the lips moist enough not to chap. We go to great limits taking care of a new born baby, why not apply the same principal to a dying loved one. Dignity in death is not a new concept, and we must not let it become a dying art form.
At times, over the first several months of Annie’s journey with cancer and again over the last eight months of Annie’s life, I had thirty five hour back to back shifts with only a couple of hours sleep in between. Did I cry, did I complain, did I moan, no! You know why? Because it was not about me, it was about Annie. Near the end of her life she’d say to me, “Bobby, you need to get some rest darling, you’re getting so tired.” I would simply smile and say, “Annie, I’ve got the rest of my life to sleep.” And that’s how love works. You’re locked into relentless care giving for your loved one which overrides the things that you consider not so important at the time, allowing you to keep on loving them through their darkest hours. In the end, death is so final. I’m so glad I stayed awake long hours caring for Annie, allowing myself more aware time with her. It’s precious time that once gone, you can never get back.
The Final Battle/Dying At Home
Twelve days before Annie passed, the situation in our home was so grim. Annie was really sick and suffering from internal bleeding. On that 12th day, Annie was sitting at the dining room table with me and her sister Lesley, when she started having a spontaneous bleed. The blood came from one of her ears, one nostril, and her gums, lips, inside cheeks, and throat. It wasn’t a heavy bleed, but it didn’t have to be. It was the shot across the bow, a warning, the countdown had begun.
Was I afraid, no! Was I sad, yes, I knew what it meant. I was heartbroken. Was there a lot of chaos, no! I took immediate action to control and calm the situation. I had 29 months to prepare for this event, which I knew was coming, just not when. From the early stages of her disease it became clear that Annie’s body would reject potential life sustaining infused platelets, which is one’s blood clotting mechanism. Her lack of platelets was causing this bleed.
Six days before Annie passed we went to visit her oncologist, Dr. Moore Sr. When he walked into the room he said, “Hi Momma!” Want the good or the bad news first.
(Note: Annie and Dr. Moore Sr. had a wonderful relationship. When he met Annie, he’d been an oncologist for 39 years, was a scientist, a senior member of the board of directors for the Leukemia and Lymphoma Society and knew blood cancer better than most. He absolutely fell for her kind and loving ways. It was kind of sad, he wanted so badly to save her, but knew he couldn’t. He told me privately in the third month of her cancer, she was one of the most difficult cases he’d ever had. Why, because as he said the day of her initial diagnosis, she should not even be here. She should already be dead. But here she was, presenting one challenging event after another. Annie was a sick lady!)
Annie wanted the bad news first.
He told her rather nonchalantly, with a strangely curious look on his face, that her platelets were “0.” She didn’t have any. (Normal platelet count is 140,000 to 450,000). Other than dying, it couldn’t get any worse than that for her.
At that point, I thought I had sat in on one of the most amazing conversations, or lack thereof, I’d ever heard. He just casually told her she had no platelets, and she took it in her usual gentle stride. For that moment in time it seemed like their minds were locked together like, so what! What else is new! I would have thought there would have a been a much stronger reaction from both of them. But that was not the case. It was going to be business as usual.
After a bit, he had a detailed talk to her about hospice, and then asked her what she wanted to do. She said, “I want to fight on.”
Before we left his office, he asked her if she wanted the good news.
She said, “Yes!”
He said, “you’re still alive!” With a huge smile.
With that Annie started belly laughing. In the end we were all laughing. Just think about it. The situation was very grim, but what else could she or we do. Pity party, cry—no! She chose to see the funny side of a really bad situation. Imagine, two and one-half years earlier we had two very successful small businesses, a nice home, with the metaphorical white picket fence, two nice vehicles, getting ready to retire, and in general life was treating us kind. When looking at the irony of the situation as it now was, it was laughable. Our life, our hope’s, and our dreams were now just an illusion.
So what did we do? What we’d done many times before when the situation was grim. Got on with our day! I can honestly tell you from the heart that we did not dwell on, or talk about the seriousness of her situation. There was really nothing to talk about, it was a non entity. No one could help her! She was now beyond anything modern medical technology could deal with. As her loving husband and caregiver, you can bet your whatever, that in my mind I was focusing on the possibility that at any time Annie could have a true unstoppable spontaneous bleed out, and there would be nothing I could do but hold her and love her through it. Imagine having “0” platelets and living in a body that was badly beat down, diseased, and broken from cancer. Bleeding was a nightmare waiting to happen.
Hospice was never really a consideration for me, nor was dying anywhere but home. The hospital put up some resistance to me on two different occasions, at the 10th month prior to her death and on that 12th day that I just spoke of. They wanted her on hospice in the hospital immediately. But I always fought back, using my knowledge and understanding of the situation as it was at the time, along with my love for Annie and her wishes. Those were potent weapons when dealing with such adversity.
The last thirty-three hours
It was at that point that Annie started spitting up bloody mucus. This was not a warning, it was a sign of impending respiratory failure. Once the lungs were filled with blood, it’s over.
Admittedly, I was now truly freaked out, scared for her, and for me. But she never saw that side of me. I stayed calm, and in everything that took place over the next thirty-three hours I was compassionately in control, until Annie died peacefully in our home.
And this is why we have to be careful and not paint dying at home with such a narrow brush. For Annie it was everything she wanted and went exactly as I expected it to. I know, I was a very fortunate man not to have this event come crashing down on us, and yes there was some chaos, but controlled chaos is not a problem. You deal with things as they happen. I had to take myself out of the equation, and always do what was best for Annie. And I did.
For a loved one, dying at home surrounded by loving family, is special. Dying at home should not be a privilege, it’s a rite. If hospitals aren’t a desirable place to die, and nursing homes are a crappy place to die, and dying at home with hospice is not all it’s cracked up to be—where can a person die in peace?
How about dying at home with a competent caregiver loved one, without outside intervention or hospice. If one has the fortitude, is a competent caregiver, understands the disease and what’s going on with the disease, knows what medications to use, throws in some unconditional love and the willingness to be selfless in all that needs to be done, “Bingo!” We have a winner! You’ll do a great job.
Yes, I’m a bit different, in that I really did love caring for Annie, and it showed in the presence of everyone that saw us. I was so proud of her for who she was, what she represented to others, her courage and strong will to live, which all made her an inspiration to other cancer patients. In her third month with cancer, the nurses at the cancer center and later the hospital coined the term, “Our little miracle girl.” People were in awe of her, and as one nurse said, “Her trademark smile.” She smiled through some tough times. She was never a burden to me, but caring for a terminally ill loved one or patient will never be easy. In fact it can be very difficult at times. But, I wanted so bad to keep her alive as long as I could, no matter what her condition was. Because I knew, when it was over, it was over forever. And almost five years later, I wish I was not having this conversation, and was still Annie’s caregiver.
After Annie took her last breath at home, her eyes popped open, and it was as if she’d seen the glory. When EMS arrived, along with the Fire Department and eventually the doctor to pronounce time of death, there was a consensus amongst them all—they were amazed, saying she died very peacefully as her face showed no signs of stress, fear, or pain. In a sense they filled out her “Customer satisfaction survey” for her. She didn’t suffer!
So I say to you. Dying at home can be a beautiful thing if handled by a competent caregiver, with some skill and tender loving care. I have no guilt, no regrets, and the only thing I would change is—the ending, if only for a moment.