A Companion for the Hospice Journey

Introduction: Who This Book Is For

The book on hospice is for no one.

[See my note at end, please]

No one wants to die.

No one wants a loved one to die.

No one wants to grieve a death.

No one wants to talk about hospice.

Are you no one? If you’re reading this, I’ll assume you’ve taken a reluctant step toward admitting that it’s time to consider dying, death, or grief.

You didn’t plan to get cancer, but once you learned about the diagnosis, you planned to battle and beat it. Now your oncologist has suggested hospice, to shift from curing the disease to creating quality of life in the final season of life. No one plans for that suggestion.

Since your spouse never smoked, and usually made the right choices about eating and exercise, it’s unfair that she has had to deal with chronic obstructive pulmonary disease (COPD). Nonetheless, for years she successfully managed her illness with medication. Until now. And now both of you are waiting for the person from hospice to arrive to explain the benefits.

Your father survived the war, built a business, and raised your family. Everybody knows him as a good man of few words, but if he makes a promise, he keeps the promise. You never imagined the strongest man you’ve ever known would have to move to a skilled nursing facility. You never imagined that as his heart slowly, slowly failed, that he would become as helpless as a newborn. Even though your father’s doctor told you to call hospice, wouldn’t that be giving up?

It’s not fair that your grandmother, the cheerleader in your family about you seeking a college education, can no longer dress herself. Every time you remind her that her husband of over sixty years died two summers ago, she weeps as if hearing it for the first time. How can dementia rob so much from the most vibrant person you’ve ever met? Your grandmother’s doctor—with her too perfect hairstyle and lousy bedside manor—has suggested hospice should be called for an evaluation. No matter how hard you try, you can’t picture yourself inviting strangers from hospice to help honor your grandmother’s long-ago wish: to die at home.

Your spouse died three months, two weeks, and five days ago, but you’re doing okay. Before he died, you’d both reviewed the insurance and pension plan. Everything was in order. After the funeral, you created and then whittled away at the to-do lists, from canceling credit cards to paying bills. Day after day, week after week, there was a flurry of activity. People stopped by and left food; the out-of-town siblings called on weekends; the pastor (or rabbi or imam) always found you at your place of worship to say hello before you escaped to the parking lot. Now, though, alone at the kitchen table, there’s not much to be done. The house—no apologies for an obvious analogy—seems as silent as a tomb. Except for the sound of weeping. Your weeping. You recall, from a talk show or sermon, hearing the C.S. Lewis quote, “No one ever told me that grief felt so much like fear.” If you’d doubted it then, you don’t now.

Dying. Death. Grief.

Dread. Finality. Fear.

No one expects to or wants to face these decisions and situations.

But most will.

This is a brief book about hospice, about what you don’t want to read or talk about. It’s not for everyone, but it may be for you. Perhaps, with minimal enthusiasm and maximum foot-dragging, you’ll allow me to be one of your companions on a journey no one wants to take and that everyone will face.

+      +     +

I have intentionally kept this modest little book . . . modest and little. It’s about 100* pages in length. If you want to learn about hospice, or you’re in the midst of hospice care, who has the time or energy for detailed reading? On your best days, you probably have the attention span of a two-months-old puppy.

The first section is written as letters to those considering hospice care. Whether your “consideration” of hospice is to avoid the subject of dying, or your experience with hospice has now involved the death of a beloved and the next scary steps of life, one of my “letters” may be of some help.

The next sections include chapters on dying, death, and grief.

If you want to know about me, the final chapter has a few quick thoughts about my background. It also has my email address. I answer my mail.

I hope this book is a “companion” that prompts meaningful conversations between loved ones, along with sharing useful information. If anything I say makes a positive difference for “you,” that’s a blessing for both of us.

 

*In a sense, this book has less than 100 pages. If you want to learn a little about hospice because a loved one has been told he or she has six months or less to live, or you’re struggling with grief, just pick the section that relates to your needs. When dying, death, or grief are part of your life, who can concentrate on any more than a few (hopefully) helpful words?

 

+++++++++++++++++++++++++

NOTE – I need a favor! I’m working on a book about hospice. This post is a draft of the introduction for my possible “Companion for the Hospice Journey.” I would appreciate comments from you about two things:

  • Is this introduction a compelling “invite” for a someone searching for a resource on hospice?

  • What do you think should be included in a simple book designed to help a person not familiar with hospice or who is suspicious about hospice?

Any of your feedback will be wonderful!

Facebooktwittergoogle_plusredditpinterestlinkedinmailby feather

Comments

  1. The word, “hospice” is scary to many. I’ve often heard when someone hears, “Hospice” they feel death is near (days or weeks). Sometimes this is the case, but not always. Some feel it is giving up on life. They may not understand the emphasis on quality of life.

    Often when I make bereavement calls, it’s the support from hospice staff that was most appreciated. The many visits, calls to check in, education and communication of what is happening to their loved one.

    • Alison, thanks for your comments! And, also for your work with bereavement calls. It’s one of the quiet, powerful ways that hospice keeps being a caring presence for families.

  2. The introduction seems inviting and I believe anyone who is going through this situation would want to read this book. I related to your statement of attempting to fight the tough battle of cancer for months or years and then suddenly there becomes a time when one can no longer fight, and hospice is the new suggestion by the doctor versus a new form of chemo or medication. The suggestion of hospice felt like giving up when we were in “cancer fight mode” for so long. About a month prior to his death, my father was placed on hospice (6 years ago) and the agency provided 2 short pamphlets about the dying process and I probably read over the information several times. I remember wanting more information and reassurance that we were providing him with the best comfort measures.

    On the professional side of hospice (I’m a speech language pathologist), I believe family education is important. Does the family know the definition of the terms: hospice, palliative care, comfort care? Is it ever too late to consider hospice for their loved one? Do they know the roles/benefits of hospice care workers ( Yes, consider an SLP)?

    • Thanks Gina. And especially for sharing about your father and your support of him when he was dying. Education is, obviously, essential. A big part of my goal with this book is . . . keep it simple and provide key info. Don’t say too much, but just enough.

  3. I think it’s important to note the power of a medical POA. My experience was that the assigned family member decided to violate their mother’s wishes. As soon as my friend was determined unresponsive her family swept in and changed everything in her death plan. At this point hospice no longer honored my friends request and worked for the family. Hospice came to her house , where I had been caring for her with the police to transfer her to their hospice facility. They tried to change her DNR and start dialysis. It was horrible.

    • Kenna . . . thanks. You’ve identified one of the tough situations. When a POA is established with a friend or family member, I hope that “everyone” is informed and understands that they speak for the patient. But there are the sad situations like you describe. Sigh.

  4. Yes, I think the intro is compelling enough to read the book. What to include—- isn’t that the sixty four dollar question. I think families have a real problem with their loved ones not eating— if we understand food is fuel and we don’t need it anymore, anxiety is relieved. Same for drinking fluid. A second thing would be an explanation of the persons eyes being closed— even tho completely present, sometimes involved in conversation— we know all part of transitioning from this life to the next, but families often think the loved one is comatose if non verbal. And lastly, don’t ever believe one is hallucinating, they are seeing the beyond, talking to and reaching for those that have gone before them. Oh!! And explain terminal agitation— people get freaked out about that too!! 🙂
    I’m getting to be a pro at this dying thing with friends and relatives dropping left and right!! Geez.

    • Denise . . . thanks! You make excellent points. I especially “worry” about how to be open and honest about food so that families can understand there comes a point (for many) when it’s not what is needed.

  5. Looks perfect so far. Keep the chapters simple, but profound. Each chapter should stand on its own.

    Good luck

  6. Talk about it! Maybe that loved one with cancer doesn’t want treatment but thinks the family wants them to have treatment so they pursue treatment and have end-stage cancer and suffer from the effects of needless treatments because nobody wants to discuss it. Yes it’s hard to talk about but so are the regrets when nobody really asks the loved one what THEY want, not what they think someone else wants. It’s their journey and our place to support their decision and love them through it.

    • Thanks, Jennifer! And though not easy to talk about, I’m glad you mentioned the possible regrets when no one mentions “it.”

  7. I’ve had many experiences with people feeling guilty about not exclusively caring for their loved one until the end. That having hospice help was not following what the dying person had wanted or what the person feeling like a failure had promised. Usually once hospice has set them up with instructions and a few lessons, they understand that it is still their care, they are just better informed and capable. They have a few tricks of the trade to make everyone more confident and comfortable.

    • Thanks for the comments! Ah, yes . . . guilt. And the “g” word often accompanies the high (and often realistic) expectations we put on ourselves.

  8. Larry, I like your introduction.

    I like the way you can speak with brevity as if one is having a conversation with you.

    Covering the various types of illness experiences families have with death, dying, and grief, also makes one feel included when you read about them.

    Having been through Hospice experiences with both my younger brother and my aging parents, I can say that the quality of the experience was very much dependent on the members of Hospice who came to help my family. The Hospice members’ communication and listening skills along with their ability to bridge the emotional and spiritual aspects of the experience were crucial. A tactful sense of humor was also appreciated, and I know you have that covered:)

    Perhaps, a simple definition of exactly what Hospice is, would be helpful, not assuming that everyone knows. (Wikipedia-type?)

    Perhaps, a list of suggested questions that someone might want to ask the Hospice staff would be helpful, (not necessarily in your introduction, of course.)

    I remember that one Hospice member made the comment that I looked “very put-together” for someone who was going through such a loss. Rather observant of them? Make-up, hair, probably nails and outfit…all done in my effort, perhaps, to show some kind of control over the situation from the outside? And, the “situation” was not quick, but endured over a long period of time.

    And, the experience, of course, is not over when the loved-one dies. Hospice just might be the beginning of the healing for the family and they need to know what is possibly available afterward. And, knowing when to recognize that, perhaps, they still might have “issues” to deal with down the line is important.

    Good job! Thank you for allowing me to share my thoughts and reactions. I look forward to reading more:)

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.