Ten things I highlighted from the book 'Dying Well'
When a dying person and a loved one feel complete between themselves, their time together is marked as much by the joy of being together and by mutual affection as by the sadness of impending departure.
Byock MD, Ira (1998-03-01). Dying Well (p. 120). Penguin Group. Kindle Edition.
Yes. Yes it is. I believe we are complete. It's a strange feeling to simultaneously feel joy and grief.
The decisions people make to complete their dying days, or to help someone they love complete a life, are rarely easy. They are often gut-wrenching and may challenge basic beliefs about who one is and what is important. Nevertheless, these end-of-life decisions create opportunities for new experiences and discoveries that range from the fairly mundane to the frankly extraordinary.
Byock MD, Ira (1998-03-01). Dying Well (p. 138). Penguin Group. Kindle Edition.
I consider this to be very true. I've helped people I do not know because of my words. Words I didn't know I had in me until I had to help someone I love complete their life.
As people struggle to make the right decisions in the midst of the staggering crisis of an imminent, untimely death, startling opportunities may be revealed—opportunities for nurturing, honoring, and celebrating the person departing. Very often I have seen families build living monuments to their dying member by the decisions they make and the care they give. And despite how much these challenges may threaten firmly held beliefs, it is remarkable how often they are made without wavering. To me, this willingness, and even determination, to venture into the unknown is the essence of courage.
Byock MD, Ira (1998-03-01). Dying Well (p. 138). Penguin Group. Kindle Edition.
I'm not alone in this. Many of us who know and love Billy Jo have ventured into this unknown. I'm not sure I feel courageous, as he states it, but simply doing what I am supposed to - loving and caring for my wife as she dies at too young of an age. Venturing into the unknown is a fear I have been feeling. You can tell this in my writings over the past weeks. Erin (social worker) and I discussed it not so much as a roller coaster but as a haunted house. The thing is, I'm not sure if this haunted house is simply a small park district building decorated as a haunted house or the Pentagon decorated as a haunted house. And just how scary is it going to get? There's no shortcuts to get out of the haunted house early, either - keep moving forward.
Often when I ask patients to tell me about their suffering, they talk about being afraid of becoming a burden to their loved ones. Sometimes, more than dying, people dread becoming dependent on caregivers and making them feel responsible for both financial and physical needs as well as the inevitable emotional demands. Of course, caring for someone who is dying requires fortitude. Family members may have to provide constant attention to physical comfort, such as easing dry lips and fever. They may sit for hours and days with someone, offering love and reassurance with their presence. The dying person may moan incomprehensibly or breathe noisily, adding to the caregivers’ ordeal. This is all made even more poignant and intense by the nearly universal sleep deprivation that caregivers endure. However, to speak of this time solely as a “burden” misrepresents the nature of the experience. Although a patient may feel that this care and attention is unduly taxing or unpleasant, caregivers frequently tell me that they regard this time as precious. The burden is rarely too heavy. Far more often, they say it feels like a sacred responsibility that they want to shoulder—that they need to shoulder.
Caring for a dying loved one is a powerful way to express love, devotion, and reverence. Allowing a spouse or grown child to care for one becomes a final gift from the person dying. The physical acts of caring can help family members in their own grief.
Byock MD, Ira (1998-03-01). Dying Well (pp. 158-160). Penguin Group. Kindle Edition.
I do need to shoulder this. I'm not running away now. I also have never considered this a burden, and have told Billy Jo as much. I am appreciative for this final gift from Billy Jo, and I truly hope that my physical acts of caring help me in my grieving. Right now I don't know if they are helping me in my grieving, but they're certainly helping me cope with this. I wouldn't be this strong if I wasn't taking care of her... if she was under 24/7 hospice home care and I was trying to "live a normal life" and only briefly visiting her, I'd be a wreck, and it would be bad for her as well. I needed to take on this unbelievable stress (stress, not burden) for both of our sakes.
... reminded me of something psychologist and theologian Gerald May said: “Grief is neither a disorder nor a healing process; it is a sign of health itself, a whole and natural gesture of love. Nor must we see grief as a step towards something better. No matter how much it hurts—and it may be the greatest pain in life—grief can be an end in itself, a pure expression of love.”
Byock MD, Ira (1998-03-01). Dying Well (p. 169-170). Penguin Group. Kindle Edition.
OK, if grief isn't a step towards something better, then I sure hope it is the "end in itself."
Despite the obvious reason for all the company and activity, few of Terry’s relatives treated her as if she were an invalid. During the winter and for most of the spring, she did not look sickly; she was youthful, still able to get around, and, most of the time, able to hide her pain from everyone except her father, Candy, and Paul. This false picture of health encouraged the atmosphere of denial that pervaded the house. While people might talk about an upcoming trip to the doctor, her medications, or some other aspect of treatment, the terminal nature of Terry’s illness—the fact that she was dying—became an elephant in the living room that no one admitted seeing and no one spoke about. In avoiding what was obviously most real and mattered, Terry and her family also avoided what needed to be said and done before she passed away.
Byock MD, Ira (1998-03-01). Dying Well (p. 197). Penguin Group. Kindle Edition.
This is what I was precisely trying to avoid and somewhat was caught off-guard by, with the exception of avoiding what needed to be said and done. We did do more of that, however, and it was a good thing.
Doctors usually refrain from making exact predictions about the course of an illness. For one thing, accuracy is almost impossible. Diseases and people have a way of defying odds and belying even the most knowledgeable opinion.
Byock MD, Ira (1998-03-01). Dying Well (p. 201). Penguin Group. Kindle Edition.
This is very very true. Still, I did appreciate some sort of prediction when I received it from the hospice doctor - it somehow helped me in a way. Coping? Preparing? I'm not exactly sure how. One way it helped was we were able to go to the funeral home together, and I'm not sure that would be a possible thing now. Definitely not the past few days.
“Has it made it hard for you to be in the home, knowing she died there?” I inquired. “No, I’m sure glad we didn’t go to the hospital that day. You know, even though we went through that horrible night, I’m sure it would’ve been the same thing in the hospital. We did everything they could have done—it just would have been an uncomfortable place to be for us all,” he said.
Byock MD, Ira (1998-03-01). Dying Well (p. 213). Penguin Group. Kindle Edition.
For any of you wondering if I'll be able to live here after she passes, I truly believe the answer to be yes. I'd rather have her die at home than in an hospital. In fact, I greatly prefer it. I want her as comfortable as possible, and that's not happening in a hospital. I hope it's not a "horrible night" as in the book's case, but whatever it is, I want it here.
Can you take the stress of involvement? These days people walk around feeling they could not possibly deal with another ounce of stress. The real question is: Can you avoid it? The answer is no.
Byock MD, Ira (1998-03-01). Dying Well (p. 254). Penguin Group. Kindle Edition.
Fucking A, doc. Friends ask how I am able to do this, to go through this as "strong" as I have been. Here's the answer. It is unavoidable. I never considered a possibility that it could be avoided.
Dying of a progressive inability to eat is probably one of the most natural and physiologically gentle ways to expire. In the context of advanced illness, hunger is rarely, if ever, a source of discomfort. The same is true with thirst. Hospice patients who are dehydrated are regularly asked if they are thirsty; most answer no, but those who say yes are consistently and fully relieved by having their mouth and throat moistened. A recent study confirmed this experience. “Thirst,” for people with advanced illness and dehydration, is a feeling of dryness, not the familiar sensation that can be quenched only by drinking substantial amounts of fluid. In any event, the discomfort associated with dehydration is easily prevented.
Byock MD, Ira (1998-03-01). Dying Well (p. 266). Penguin Group. Kindle Edition.
I quoted a different part of this book earlier in this journey, but thought I'd put this here as a reminder to those still unsure about it.
That's it. Billy Jo is still in bed sleeping, and I've typed this while laying right next to her, instead of just staring at her at being sad. Now that I'm finished, I think I'll take a nap with her, and hopefully have some good dreams and some rest.