Dying at Home

Gratitude

May 2, 2011 |

Author deborah

Let nothing lie outside the embrace of your gratitude.

- Brother David Stendl-Rast

Yesterday I found out my publisher is declaring bankruptcy, news that could easily cause me to have a lousy day. I decided not! I remembered Brother David’s words and thought about gratitude. How could I hold my being stymied in reaching out to help people through my book in a way that wasn’t depressing? I decided there must be a pony in the ____ pile. The first blessing/pony was getting to practice what I preach. I decided to dedicate the day to gardening and surprised myself by staying positive that good would come out of the bankruptcy….even more opportunities to serve. Whose knows …in the pile, I may find the white Arabian horse I longed for as a child.

What about you? What difficult circumstance or problem in your life can you embrace with gratitude? It’s a stretch. Sometimes we can do it and sometimes not and that’s OK. The stretch can increase the joy in our lives.

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Tags: caregiving, gratitude, quote |

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Butterflies count not in months but moments and have time enough. – Rabindranath Tagore

April 26, 2011 |

Author deborah

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An idea whose time has come: CARING TEAMS Creating a Community to Care for Our Dying and Seriously Ill Loved Ones

April 9, 2011 |

Author deborah

When we're sick or dying most people want to be cared for at home surrounded by the things that give immediate meaning to our lives.. our partners, children, pets, the garden, our favorite easy chair. Few of us would chose the sterility of a hospital or nursing home if we had a choice. But many of us don't have a big enough family or enough friends to give us with the care we need.

According the latest census, there are more single person than family households in America. That means more and more people are living alone. Then, if were too ill to take care of ourselves, we stuck with very limited options. Our social structures don't match the needs of our hearts.

Now, spontaneously arising in many place, groups of people who recognize the need for loving care at home want to help and are organizing. On my island home, Kaua'i, three different groups are beginning caring teams – hospice , a home health service and an independent group of caring people inspired by the work of Bodhi Be who has working caring teams on Maui and Sheila Warnock, author of Share the Care. Links to their websites are under my home page photograph. Check out what they are doing. I think you'll be inspired.

Often we complain about isolation and alienation in our communities, but do nothing about it. You could be the courageous person who forms a caring team that transforms your neighborhood and community. You could be the one who instigates creating an extended family to meet one of our most basic human needs – to be cared for with love when we can't care for ourselves.

My book, Coming Home, A Practical and Compassionate Guide to Caring for a Dying Loved One, a step -by-step guide, will give you all the information you need for home care. Sheila's book is a step-by-step guide to setting up a caring team. With your own wisdom and the information in our books, you could create an experience that comforts the ill or dying person and inspires everyone who participates in their care. The truth is we're all family.

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Posted in caregivers, death and dying, hospice work, Uncategorized |

Tags: care teams, caregiving, homecare for the dying, hospice volunteers, palliative care, professional caregivers |

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Guilt in the Dying Process

March 7, 2011 |

Author deborah

I told you I was sick.

—Epitaph on a tombstone

Guilt is a way we punish ourselves for learning, for not being perfect yet. It’s a tool for manipulating ourselves and others.

Our culture’s emphasis on both the past and the future promotes thinking like, “If I’d just done something differently in the past, things would be better now.” There we go being the Monday morning quarterback of our own life!

The underlying pattern of guilt is, “To be a good person, I should…” We are intrinsically good, valuable, and worthy, and continue to be so, even if we never complete one “should.” The established shoulds may not be appropriate for our growth. If you complete a should that is not your own choice, you are giving up your power and choosing to be a martyr or victim. A martyr is someone who thinks suffering is noble, someone who doesn't act on what their body, mind, feelings, and soul tell them. They make themselves a victim.

Most of us divide our lives into two piles: what we should do and what we want to do. If we do what we should, we feel resentful and martyred or victimized. If we do what we want, we feel guilty. Perhaps a little voice says over our shoulder, “Irresponsible hedonist!” And so it goes. We bounce back and forth between the piles feeling split in two, and lead joyless lives.

To live joyfully and die contentedly or even just to grow, we have to stop splitting ourselves in two. The people I’ve observed who die the most contentedly, the most peacefully, are the ones who lived the most fully, who did more of what they wanted, without feeling guilty, and less of what they should. These wise teachers helped me understand, the only real preparation for death is to live life fully. Without regrets. Without I-wish-I-hads.

A dying situation often brings up feelings of guilt, although caring for someone at home helps prevent most of them. At home there’s time and a place to express whatever you now feel or have felt in the past, thereby avoiding later regrets and remorse for not having said or done what you might have. If you have to take someone back to the hospital, nursing home, or hospice, know you are worthy even though a home dying is more than you can handle. “I should keep Grandma home” could be changed to “I’m a valuable person too, and I need help.”

Besides not feeling guilty yourself, be careful not to make your patient feel guilty for dying. Saying, “I could go to the store if I didn’t have to wait to give you your medicine” or "Don’t leave me with all this,” makes a person feel guilty and/or ashamed. You should also be aware of a common pattern guilt takes: When we feel guilty about how we’ve treated someone, we often make them look bad in order to justify our treatment of them!

Being honest with the dying person helps prevent guilt. Honesty isn’t ridding ourselves of guilt or getting ourselves off the hook at the expense of someone else. Guilt is also prevented by asking the patient what she or he wants whenever possible.

As I mentioned before, there’s always the possibility you’ll do or give something to the person that will result in their death before you expect it. If you’ve earlier agreed to do your best, and acknowledged you can’t know everything, you may prevent useless guilt.

Be compassionate with yourself. Forgive yourself—over and over again. Instead of feeling guilt, congratulate yourself for outgrowing some old thought or feeling that is no longer appropriate for you, for increasing in wisdom.

Guilt, along with blame and punishment, are ideas we need to let go of if we want to live joyfully…or even survive.

For more information about how to let go of guilt in your life, see Chapter 10, Living Fully with Dying: Our Feelings, in my book Coming Home, A Practical and Compassionate Guide to Caring for a Dying Loved One.

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Tags: caregivers, caregiving and family morale, death and dying, dying, greiving parents, grief, grieving, hospice volunteers, professional caregivers, tips for caregivers |

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Thank you for your comments

February 23, 2011 |

Author deborah

A friend found W.C. Fields on his deathbed reading the Bible and asked him why he was reading it. Fields replied, "I'm looking for loopholes."

(Quoted in my book Coming Home in a section about the role of humor in our lives and in the dying process.)

I am very grateful to the many people who have shared comments about my blogs. If I can help you with a specific subject, I am happy to respond to you; otherwise, know that your comments are invaluable. They inspire and inform me.

If you find my writing valuable, please consider purchasing a copy of Coming Home, A Practical and Compassionate Guide to Caring for a Dying Loved One from my website. The book is generally about making friends with death and dying and specifically, a step-by-step guide for caregivers. Coming Home goes more deeply into subjects about which I've been blogging.

The most frequent reader response to the book is "Everyone should read it!" They also reported feeling less frightened or intimidated by the thought of dying after reading it. If you are not currently supporting a dying loved one, but friends or co-workers are, Coming Home will give you the information and wisdom to help you better support them. In buying the book and spreading the word, you and I become a team that hopefully lessons the pain and suffering in the world.

Your purchase of the book on my website also buys me time to continue writing blogs and complete a manuscript entitled Lighten Up, Seven Ways to Kick the Suffering Habit. Previously, Coming Home was published by traditional publishing companies. It always bugged me that authors spend years writing and rewriting books, and then the marketing machine takes most of the profits. So, this 4th edition of Coming Home is self-published. If the book sells through Amazon or retail book sellers, I receive $2.90 – that’s better than $1 received from traditional publishing companies - BUT, if you purchase it for approximately the same price from my website, I receive about $9. I hope you feel as I do that you'd rather support an individual author, rather than large corporations.

Again, thank you for your support. The subject of the next blog is "guilt", its role in our lives and specifically in the dying process.

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Posted in caregivers, quotes |

Tags: caregivers, purchasing Coming Home, quote |

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Mother Teresa’s Version of the Prayer of St. Francis

February 11, 2011 |

Author deborah

Seek not so much to be loved as to love Read the rest of this entry »

Posted in caregivers, grieving parents, hospice work, Mother Teresa, quotes, spiritual journeys |

Tags: caregivers, death and dying, Mother Teresa, quote |

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Seven Tips for Pacing Yourself, Family Health, and Morale When Caring for a Seriously Ill or Dying Loved One

February 8, 2011 |

Author deborah

Let there be spaces in your togetherness, and

let the winds of the heavens dance between you.

- Kahlil Gibran, Mystic and author of The Prophet

Time is often the great unknown factor in an illness or dying process. Unlike a home birth, in which the baby is born within a relatively short time, serious illness and dying have no fixed time limits. Not knowing "how much time we have" is hard for the sick or dying person and the family. Therefore, pacing yourself is vital.

Nobody can face illness or dying all the time, neither the sick person nor the family. Unless you take time for yourself, for letting out your feelings and taking care of your health, you may well run out of fuel before the process is complete. An early all-out effort can exhaust you and cause you to resent your loved one for taking so much of your time and energy. Contrary to all beliefs and appearance, you are not Superman or Wonder Woman, although a part of you may think you should be.

Here are seven tips to help you to take care of yourself and your family while caring for your loved one:

1. Before you get out of bed each day, ask yourself "What nice thing can I do for myself today?" This may be anything from squeezing yourself a glass of fresh orange juice, to taking a walk or meditating. For families, also ask "What nice thing can we do today as a family? Watch a video? Play a card game? If your loved one is dying, what about recording their life story?

2. Because your spending so much time at home, what can you do to prevent the frustration of feeling "I'm getting behind on everything?" What can you do at home that you might not usually make time for? Write a letter? Get caught up on paperwork? Organize the family photos? Do some craft you enjoy?

3. Exercise, eat well and get as much sleep as possible.

4. Ask for help so you can go out or have time alone. Go to the movies, dancing, bowling, a botanical garden or a restaurant you've wanted to try.

5. Visit with friends and talk about what you're experiencing.

6. If there are children in the family, include them in what's happening and make time to focus on their needs. (See Chapter 8 in Coming Home.)

7. Consider respite care so you can take a mini vacation. Respite care, a temporary stay in a care center or hospital, is included in hospice programs.

As you go through this caregiving process, even if it's very difficult, honor yourself as well as your loved one. Skip guilt. In case you've forgotten, you're just as important as your ill or dying loved one.

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