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Tips for coping and living with a critical illness
The American Brain Tumor Association (ABTA) has a useful Tips for Living and Coping newsletter, which you can subscribe to or read online (http:/ /www.abta.org/index.cfm?contentid=124). Sometimes their advice is useful for any kind of major illness. Here are some useful items from their May 2008 issue:
Consider a Home Safety Evaluation
Occupational therapists may perform a home evaluation to ensure safe home accessibility. They may recommend appropriate bathroom equipment, adaptive devices, durable medical equipment, and/or other home modifications to increase safety and independence for the person living with a brain tumor. In some cases, insurance may cover the cost of the equipment and home upgrades. (Always check with your occupational therapist or insurance company before you make a purchase. Some products may require a prescription or documentation). The American Occupational Therapy Association (http://www.aota.org/) provides a listing of state occupational therapy associations which can help locate professionals. Some Physical Therapists also offer this service, to locate a physical therapist in your area contact the American Physical Therapy Association at http://www.apta.org/. The websites at North Coast Functional Solutions; http://www.beabletodo.com/ and Sammons Preston Rolyan-USA at http://www.sammonspreston.com/ offer a comprehensive selection of products for all areas of activities of daily living.
Develop an Emergency Plan
Create a plan for obtaining emergency help. This becomes important not only for those living alone, but for those patients/survivors who may be home alone intermittently throughout the day. Check into emergency alert services or panic buttons connected to a home monitoring or security service. Personal Emergency Response Systems or PERS are designed to alert medical personnel or a family member to a potential problem. Emergency services will then respond directly to the home. Be sure the address outside is easily visible from the street should emergency personnel need to find the home. The Center for Aging Services Technologies hosts a listing of companies at their website that offer PERS.
Ask a neighbor to knock on the door each day, or allow friends to help by choosing a day of the week to call and be sure all is well. Use one of the many online support communities to maintain connections and help organize a schedule of help and support. MyLifeline.org, offers a Helping Calendar, an easy tool where friends and family can view the treatment schedule and learn how to best help. CareFlash provides a place on the Internet to share information surrounding a loved one's health circumstances. They also allow the caregiver a way to reach out to their community by communicating the needs of the patient/survivor. This allows people to donate time, meals or services during a stressful time. This is all available in a private, organized website, individual for each patient. Learn more at http://www.careflash.com/.
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Won't calling hospice be a sign of giving up on life?
Experts I've interviewed all say that most people call hospice too late, often thinking that calling hospice means "the end is near," and signals that you are giving up on survival. Many families have also heard that you can't call hospice until you are six months from dying, and wonder how you can tell--worry that if they call too soon they won't be qualified for hospice at the very end, when it's needed most.
Questions about "timing" and "limits" have to do mostly with reimbursement. Hospice is fully covered by Medicare, Medicaid, and most HMOs and insurance companies. To qualify for a Medicare hospice benefit, a doctor must certify that the patient has less than six months to live if the disease runs its normal course. The doctor has to recertify the patient at the beginning of each benefit period (two periods of 90 days each, followed by an unlimited number of 60-day periods). Some patients have been covered as long as 2 years. There may be differences in coverage between carriers, but the main limit on coverage is someone being willing to do the paperwork to get reimbursement. Most hospices will accommodate your need. The American Cancer Society has a good explanation of who pays for hospice care here. http:/ /www.cancer.org/docroot/ETO/content/ETO_2_5X_What_Pays_for_Hospice_Care.asp?sitearea=ETO
More important, when a cure is no longer possible, hospice helps provide the kind of pain relief, comfort, and quality of life that are important at the end of life, especially after a long struggle with a debilitating disease. In a hospital, the doctor tends to be in control of the situation. In hospice care, the patient and family are, with the help of hospice specialists. And if you live alone, don’t worry: hospice will help you figure outhow to deal with things.
Incidentally, hospice care and palliative care is available wherever the patient lives--whether they live alone or with family, are in a nursing home or assisted living facility, or are in a hospital. In my experience, with both my parents, hospices were superb not only at handling pain and helping alleviate anxiety and depression, but were very good at coaching us on how to handle the interfamily tensions that develop when family members disagree on how to handle various problems, such as the amount of pain medication to allow.
For more information, see page on Hospice care and palliative care
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VoiceQuilt: Adding giggles to a "quilt" of recorded greetings
Then VoiceQuilt's Jay Shaffer (an APH member) offered to make it easy to create a VoiceQuilt. We could all call a toll-free number and leave a regular voicemail-type message. For days I ignored the instructions, then drafted a message, called the number, left my message, and came back later to a webpage listing ALL the messages that had been left, which any of us could listen to online. What a treat!
VoiceQuilt can send a CD of recorded messages or memories to the person being honored (or celebrated). I gather Studs Terkel could also listen to the messages online, as we did. (Last I looked, the longest was about two minutes; some were as short as 20 seconds.)
It is such a wonderful idea that I decided to provide a link to the service--indeed, for the first time on this site, a "banner." Imagine what a wonderful present this would be if you were a grandfather, getting recorded voice messages from all your children and grandchildren, giggles and all. Think how a company could provide an honor that came with greetings of affection and respect from the honoree's colleagues and friends. Imagine that you are so ill you can't have visitors, and your friends and family send you a VoiceQuilt of loving messages instead. Think of how easy it would be to create a huge "thank-you" message to a group's benefactor or an employee who was retiring after many years of wonderful service.
VoiceQuilt is the brainchild of Hope Flammer. A wonderful idea! Thank you, Hope!
VoiceQuilt - How it works
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What can I (should I) say at a memorial service?
Try not to think of your comments as a formal speech; think of them as an informal way to celebrate what you remember with pride, affection, good humor, respect, awe, or just plain nostalgia about the person being honored. Just remember...aloud.
At a memorial service for the late, great Sarah Wernick, more than thirty people spoke, and what was wonderful about the service was how specific people were about Sarah's wonderful and sometimes quirky qualities. Her brother, Pete, said Sarah was smart, funny, generous -- and "particular." (Everyone in the room could probably think of an example of how true that was.) Her expert-collaborator, Miriam Nelson, to whom Sarah had proposed a collaboration on their first book, said that Sarah was "tough" and "very particular," with the agent, with the editor, and with Miriam. Sarah kept pushing Miriam, saying they had to produce the best possible book. (The book they wrote together, Strong Women Stay Young, became a bestseller, changing the lives of both women.)
Fred Hapgood, who was part of a group of an early, mostly male Internet chat group, read aloud some of the funniest (most succinct) messages Sarah had posted over the years. One day they were discussing what exactly the difference was between low self-esteem and low self-confidence, and Sarah wrote (as I recall:), "Low self-esteem is when you don't think the great gal will want to go out with you. Low self-confidence is when she will but you won't perform adequately."
Sue Katz, who led Sarah's exercise class, said that Sarah obeyed, but hated exercise. She said w Sarah had told her, "You're going to have to come up with exercises for which I do not have to get down on the floor."
Sarah's husband, Willie Lockeretz, besides reading a wonderful poem ( "The Pallid Wreath" by Walt Whitman), also talked about how she was as a daily companion. When he made fun of the trashy publications at the supermarket checkout stands, she told him, "That's not your demographic, dear."
The combined effect of all these specific, often humorous, loving but down-to-earth examples was to show the wide range of Sarah's interest, the strength of her personality, the intelligence, good humor, and generosity with time that made her a dear and long-time friend to many, many people. It was a surprise to many of us that she had so many friends, who traveled some distance to be there. We thought we were one of the few! And instead of feeling the sorrow that came from Sarah's death at the relatively early age of 64, most of us left feeling wonderful that we had known her and now knew her even better. (I also came away wishing that we could have held the memorial service while Sarah was still alive, as she would have appreciated it.) [Go Top]
How do I comfort someone who doesn't want comforting?
A friend recently asked what to do about a couple she knows who lost their son in a car accident, a prize-winning athlete and the apple of their eye. They clearly were stunned by the tragedy. They held no funeral and wanted no announcements or visitors. What should someone who knew them well do -- honor their request, or send them a gift or letter anyway? I asked Raymond McGrath, a Catholic chaplain who provides bereavement counseling,what he would do.
Ray says: Grief is going to be running through their whole bodies. It is going to have to work its way out one way or another. I would wait a week or so and send them a card just to let them know that I do care. I would probably just say, "You know I love you and am here for you." Making a phone call lets them know that you still want to continue your friendship. Be open and ask them out for a cup of coffee and tell them that you promise you won't bring up anything that they don't want to talk about. If they refuse, ask if it is okay to keep in touch. If they say no, I would still drop them a card from time to time. If they get angry, that's fine. A little emotion might help. In any case they will know that you care.
Do you have something to add? Feel free to comment.
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What do I say to a dying man?
No easy answer on this. In fact, I put together the book Dying, A Book of Comfort to let people know the many kinds of ways in which people who are dying might be comforted. There's no "one size fits all" response, but dying people often want to know that they won't be alone (or among strangers) when they are dying and that their life has meant something. Your presence or frequent communication (if you live at a distance) is probably more important than any particular thing you say, and how you listen (or hold a hand, or bring a drink of water, or otherwise lovingly show you care) may be more important than what you say. When my father was dying, what he found most comforting was my cooking him special dishes he liked (rabbit was a particular favorite), or rubbing his back. Hospice workers and volunteers, in my experience, are especially good at meeting a dying person where he or she is, and responding with the kind of empathetic listening that clearly makes a difference.
Ray McGrath adds: They know that they are dying. You're not breaking the news to them. When I go into their room I will say, "How are you doing?" And I really mean, "How are you doing through all that is going on with you?" Just letting them know that you're there is so important. So many people will say that they want to visit "Joe" but just don't know what to say so they just don't visit at all. "Joe" will then feel abandoned. You don't have to say much. When the time comes to leave a squeeze of the hand can is worth a thousand words.
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What legal documents do I need to protect my own and my survivors' rights?
You can find these discussed under Advance Directives, Living Wills, and Other Practical Matters:
· A last will and testament.
· An advance directive, a legal document, which may include a living will and a health care proxy (or durable health care power of attorney). Of these, the durable power of attorney for health care may be more important for people who know someone they could appoint to exercise such power.
In addition, you may want certain documents which are not legally binding:
· A letter of intent ( Kristie Miller's letter of intent is a great example.)
· An ethical will (a legacy letter, a life letter). What you want your survivors to know about your life, your values, your hopes and wishes for them.
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How do I get my children to sit down and talk to me about planning my funeral (or nonfuneral)?
I started this website to help those families and professionals who have bought copies of DYING: A Book of Comfort and didn't know how to buy them any more, and partly to share the information I gathered while working on that book and on a book of patient stories.
I began adding more material after one memorable evening session at the Writer's Center in Bethesda, where I lead workshops in Life Story and Legacy Writing. For the last session of my first Ethical Wills workshop, I asked the participants what they wanted to do and they wanted to plan their funerals. To my surprise, and theirs, it was a lively, engaging, even a funny evening, as we talked about whether we wanted open- or closed-casket funerals, how inconvenient they could make the site where they wanted their ashes buried (and would it be awful to ask that half of them be buried in one place and half in another), what kind of food to serve and music to play. I asked why everyone was so animated -- why they were in fact laughing a lot, and seemed to be enjoying themselves -- and they said, "Because nobody will talk to us about this stuff!" I have a feeling that a workshop called Planning Your Funeral would get a big turnout!
Since then, I've heard of memorial services given while the honoree was still alive, so everyone could say goodbye, and it's that very kind of innovation and practical detail that I hope to share here, as time allows.
Meanwhile, the main reason your kids don't want to plan your funeral may be that they don't want to seem to be expecting it, or they don't want you giving up on life. They want you to live your life as if you plan to keep on living. Maybe you can point out that any one, young or old, can be killed in a traffic accident at an time, and that it's wise to know everyone's end-of-life preferences. Of course, this ought to include not only funerals (yes, no, and what type) but other things, such as whether, how long, and under what circumstances you want to be kept on life support. If nobody close wants to discuss these things with you, or if you are alone, state your preferences in writing in a will or "letter of intent" that is easy to find.
Meanwhile, you might try printing out Dan Zak's piece in the Washington Post, "Hey, it's your funeral: You don't have to be at death's door to do a little planning for your final farewell," and the follow-up piece, "Happily ever after."
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What's the easiest way to buy copies of DYING: A Book of Comfort?
Clicking on the buy-now button below takes you to my links to Paypal, where you can pay through a safe, secure Paypal account or by credit card. As pmcnees5, I sell some copies through Amazon.com, under used books (I'm pmcnees5), although I'm selling new books. I sell both the original Warner paperback (not the print on demand version) and the lovelier, smaller, hardcover gift edition published by the Literary Guild.
The book is also available through some bookstores and other retail venues. On the West coast, store owners can order copies through Partners West, distributors in Washington state. Store owners elsewhere, contact me to order copies.
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"I’m told our hospice experience was a good one. Looking back I realize that once we called hospice, everything went smoothly—social services, medical care, bereavement counselor—everything. I learned that hospice isn’t just about the patient and pain relief. It’s also about the family and everything else connected with end-of-life. I think one of the reasons our experience was so good was because we called hospice early.
"When should you call hospice?
"Call before you think you need to."
~ Tony Levelle, from "Our Hospice Experience" (click on link below to download PDF copy of story)
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