Archive for category: End of Life

The Importance of End-of-Life Preparation

We live in a society that has an enormous taboo against thinking about and talking about death. Yet there is a 100 percent probability that each of us will die. For the 80 percent who do not put their affairs in order, their loved ones will pay a very heavy price both financially and emotionally.

Most of us hope and pray that our death will come peacefully during sleep when we are very old. In reality, we never know what day or moment will be our last. According to the United States Census, 10 percent of us die before the age of 60; 45 percent die in our 60s or 70s; and the remaining 45 percent die after the age of 80. The importance of putting our affairs in order obviously escalates as we age, yet one in ten of us will have needed to have our affairs in order before the age of 60. So it is critically important for all adult Americans.

My definition of putting your affairs in order is that at a minimum, all adults need to have two legal documents: a health care proxy and a will or trust. It is best to use the legal forms sanctioned by your state government. Let’s first take a closer look at what these documents are and why they are so important before considering why so many of us fail to execute them.

Healthcare Proxy (aka: Medical Power of Attorney): This legal document appoints someone to make decisions on our behalf regarding our health care in the event that we are either temporarily or permanently unable to speak for ourselves. With all the advances in modern medicine, decisions regarding such things as resuscitation, feeding tubes and Hospice care make it increasingly important for us to thoughtfully consider our hypothetical options in advance of need. We need to consider the circumstances under which these decisions might be needed — for example, the resuscitation of an 18-year-old at the site of a car accident versus a 94 year old in a nursing home. It is imperative that we discuss our beliefs and preferences with the person we appoint as our health care proxy. Some people also document their specific wishes in a Living Will (aka: Advance Healthcare Directives). The appointment of your health care proxy is legally more important than filling out a Living Will as your proxy will be your spokesperson in the event of need.

In the absence of a health care proxy to serve as your spokesperson, many physicians view the death of a patient as a professional failure rather than a natural end to life. Therefore, it is not uncommon for them to err on the side of too much poking and prodding to avoid any opportunity for a lawsuit claiming that they did not do everything possible to save one’s life. This happens despite the fact that repeated studies have shown that increased medical interventions at life’s end have not reduced mortality rates, but have only prolonged the dying process.

A Last Will and Testament or Trust: Wills and Trusts are legal tools that allow us to plan ahead for the disposition of our possessions according to our expressed wishes taking into account the impact of taxes. Very simply, the terms of a will or trust dictate the disposition of one’s property.

Many people think wills and trusts are only for the wealthy. Not so. They are for the smart, regardless of the modesty or magnitude of one’s material and financial wealth. If you have no will, you have no voice or choice. Regardless of how much or how little you have, death in the absence of a will means that state law will direct the disposition of your property.

Some people tell themselves they do not need a will because everyone already knows who is to get what. But, this is an example of why I say wills are for smart people! While your loved ones might know your wishes, unless you have a will, they don’t have the legal authority to distribute your property! A will not only expresses your wishes but grants the authority to enforce those wishes. We have all heard horror stories of families torn apart over who gets Auntie Dorothy’s filigreed vase. Therefore, instead of tempting fate with the possibility of your family members jockeying for position over the disposition of your assets, it is wise to spell out your wishes in a will or trust.

So the question remains: why isn’t it the norm rather than the exception for people to put their affairs in order? The answer is quite simply fear, overwhelm, discomfort and superstition — not very good reasons for failing to execute such critically important documents.

The top five excuses and secret fears for not putting one’s affairs in order:

1. If I put my affairs in order, then I will die very soon.
Not true! There is absolutely no connection. This is simply an irrational fear.

2. I’ll do it later. I’m too busy. Or, I’m young, and therefore have plenty of time.
How much time you have is not in your control.

3. It is all too much. I don’t know where to start. I’m overwhelmed.
Just do it! The risk involved in not having these documents is just too high!

4. It’s too creepy to deal with this stuff.
It’s creepy to change a baby’s diaper, but you do it anyway!

5. It’s too expensive. I can’t afford the legal expense right now.
It will be far more expensive both financially and legally for your loved ones if you don’t get this done and you forfeit the right to direct your own affairs.

If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

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Why We Need to Talk About Death and Dying

Both individually and collectively, we are paying an enormous emotional and financial price for being silenced by our society’s taboo against talking about death and dying. Other societies educate their members about the reality of death and the processes of dying and grieving. We do not. We are left to figure it out for ourselves, relying on doctors and funeral directors to tell us what to do once we are face to face with death. We don’t know what to say, what to do, how to cope or to grieve. Most of us simply let “the experts” lead us around by the nose — too stunned to take charge of the situation ourselves.

Consider the following observations and facts about the costs we bear for this:

(1) Eighty percent of Americans do not put their personal affairs in order before they die.

(2) In 2009, Medicare paid 55 billion just for doctor and hospital bills for the last two months of patients’ lives. That’s more than the budget for the Department of Homeland Security or the Department of Education. And, it’s been estimated that 20-30 percent of these medical expenses may have had no meaningful impact. Most of the bills are paid for by the Federal Government with few or no questions asked. (“The Cost of Dying,” 60 Minutes, 8/8/10

(2) Many doctors view their inability to “cure” a patient as a professional failure and are therefore reluctant to suggest palliative care even when they know there is little to no hope of recovery. Largely as a result, the average stay in Hospice care is just two weeks.

(3) Most hospital patients, relying on doctors to advise them of their healthcare options, fail to take into consideration the vested interests of the doctors and hospitals. As a result, many terminal patients are given false hope by a frenzy of tests and procedures that do little more than protect the doctors and hospitals against potential lawsuits and provide financial benefit to the doctors, hospitals, insurance and drug companies while denying the patient the opportunity to transition into his or her process of dying.

(4) A vast majority of Americans say they want to die at home, but 75 percent die in a hospital or nursing home…18-20 percent of Americans spend their last days in an ICU. ((“The Cost of Dying,” 60 Minutes, 8/8/10)

(5) Most of us have no idea how to discuss the reality of death with our loved ones and are thereby denied the opportunity to share our thoughts, feelings and fears with each other. As a result, many terminally-ill patients put a smile on their faces and silently suffer in emotional isolation.

(6) The average funeral in the U.S., including a cemetery plot and grave, costs between $10,000 and $12,000. Only about 5 percent of Americans preplan their end of life rituals. The rest leave it to their loved ones to figure out while grieving their loss. Bereft family members rely on funeral directors to tell them what to do. Left to second guess what would have been meaningful to the deceased, loved ones typically overspend for fear of not doing enough. Most of us are not even aware of the many less costly and, in many cases, more emotionally gratifying alternatives that are available for saying our final goodbyes.

(7) Legal fees for a simple will are several hundred dollars. The legal fees associated with finalizing an estate where there is no will or a poorly written will run thousands.

(8) While we silently suffer with each other, the medical, accounting and legal estate planning industries are booming at our expense.

For those who agree with me that we need to make some fundamental changes, I’d like to suggest that we begin by breaking through the taboo against talking about death in this country. A good place to start is to explore our own thoughts, feelings and experiences. Taking ownership of our own point of view empowers us to more fully participate in making meaningful decisions on our own behalf and that of those we love. The alternative is to continue to live in denial, fear, silence and paralysis.

I invite you to consider the following questions. You might want to find a quiet place and write your responses:

1. Which of the following best defines how and what you think/believe happens when we die? (More than one might apply).

  • We simply stop being – going out like a fire. Our physical body dies and that is all we are.
  • We are spiritual beings having human experiences and at death our body dies, but our spirit or soul lives on.
  • We only live this one life.
  • Our souls reincarnate, taking on different physical identities to work off karmic
    imbalances accrued from this life and previous lives.
  • We go to heaven, hell or purgatory.
  • Other. Please elaborate.

2. Did anyone educate you about death? If so, who was it and what did you learn?

3. Have you experienced the death of a loved one? If so, what was that like for you? How did it change you?

4. do you think and how do you feel about your own death?

By breaking the silence within ourselves on this topic, we set the foundation for making decisions that are in alignment with our deepest beliefs and values about life and death. It is in claiming these values and beliefs that we are best able to meet our death on our own terms – with greater self-determination about such things as our end of life healthcare, the disposition of our belongings and the kind of end of life ritual that would be appropriate for us. It also supports us in coping with the death of our loved ones.

If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

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Talking to Doctors About a Terminal Diagnosis

If you receive a terminal diagnosis, you may be shocked or not, but one thing is very clear, you have some important decisions to make. Others can advise you and/or express their concerns, but ultimately it is you, and only you, who must decide what course of action to take. Do you want to try anything and everything available, both conventional and unconventional? Or, is your inclination to seek hospice or some other form of palliative care? Or, somewhere in between? The decision is yours.

Remember that everyone who expresses a point of view on what you should or should not do has a vested interest. Loved ones may feel strongly about a course of action other than the one you choose. It is also important to recognize that doctors are in the business of saving and preserving lives and, unfortunately, are focused on avoiding malpractice lawsuits as well. As a result, many doctors view the option of palliative care or hospice as a personal and professional failure and therefore do not introduce this option readily. Instead, most doctors are inclined to pursue ongoing medical treatment to slow the progression of the disease.

Here are several things to keep in mind when talking to doctors about a terminal diagnosis.

      1. Before going to the appointment, remind yourself that this is your body, your life that you will be talking about. You have a right to your own point of view and your own beliefs and preferences regarding the end of your life’s journey.
      2. Make a list of everything you want to discuss with the doctor ahead of time — all your questions and concerns.
      3. If you haven’t already done so, be sure to appoint a Health Care Proxy to take charge of honoring your wishes if and when you are not able to advocate for yourself. If possible, have that person with you when you talk to your doctor. If they are not available, be sure to have someone else with you who can provide emotional support, take notes and help you to remember everything you wanted to discuss with the doctor as well as what the doctor has to say.
      4. Take charge of the conversation. DO NOT let the dynamic be that of a one way conversation between a demi-god doctor and his or her patient. Doctors are neither gods nor magicians.
      5. Before discussing what the doctor can or cannot do for you, take the time to share with him or her your personal beliefs and values about death and dying. If you have a Healthcare Proxy, Living Will and/or have filled out a Five Wishes form, provide your doctor with copies and review them together. This is your opportunity to inform your doctor of what kind of medical support and procedures you do and do not want and under what circumstances.If you haven’t already done so, legally document your wishes using the above mentioned forms. Be sure your documentation is in accordance with the laws of the state in which you live. Go to your state government website to get current forms. If you are interested in using the Five Wishes form, be sure it is legally recognized in your State. You might find this website helpful.
      6. Your doctor is an essential resource for you for both information and treatment. Ask your doctor to review your prognosis and the alternative forms of treatment available. For each protocol, ask the doctor to explain the risks, benefits, side effects of treatment and the probabilities of success or failure as well as a definition of what success or failure would look like and the probable time line.
      7. Throughout your discussion, remember there is no such thing as a dumb question and you are entitled to whatever it takes for you to feel well informed to make a decision that is right for you.
      8. Take your time. The doctor may be busy, but this is your turn and your life and you deserve your doctor’s full attention.
      9. If your doctor does not bring up the topic of hospice or palliative care, do so yourself. Ask your doctor to explain his or her point of view of these services as well as what he or she believes would be your probable future should you choose to forgo further medical treatment and seek immediate palliative care.
      10. If you need more time to make a decision, honor that. Don’t let anyone rush you. Once you have made up your mind about how aggressive or not you want your treatment to be, tell you doctor and be sure you have his or her full support of your choice. If not, you may need to find another doctor. If your choice is to go the route of hospice or palliative care, ask your doctor for a referral. Palliative care is not a death sentence. It is a matter of foregoing further medical attempts to prolong the duration of one’s life through medical interventions. At the same time, it is surrendering into the care of professionals who are dedicated to providing you and your loved ones with comfort and support for the remainder of your life’s journey. I often refer to my personal experience with hospice when my mother was dying as that of being abducted by angels. It was an extraordinary blessing. I only wish we had chosen that path sooner.

It is remarkable how many people with a terminal diagnosis report a heightened sense of being alive for the remainder of their journey. It is my wish that those of you facing a terminal diagnosis embrace your journey, using your remaining time to share yourself with your loved ones and to bring peace, balance and completion to your life.

If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

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6 Ways To Talk About Death And Dying

In response to my 8/9/10 post entitled “The Importance of End of Life Preparation,” Valencie Bathe wrote:

How I want to die needs to be dinner table conversation… not whispered and forgotten. There is no shame in dying and planning to die only makes sense. But owing to undue medical and legal intervention in America, we “fight it off” and end up, sadly, in ICUs being subjected to the horrors of healthcare. Until we grow up as a society and recognize that life ends, we won’t plan for it and we’ll continue our heroic measures (at untenable costs both to society and to loved ones). As a Hospice volunteer and patient advocate with a right to die organization, I find that my friends and family gradually develop the ability to discuss death and dying with me (when at first they put their hands over their ears and sang “La La La La” to keep from hearing it). It gets easier with practice. Talk about dying, plan for it. It makes life much easier and relieves underlying fears.

Here are several suggestions for how to have this very important conversation with those you love.

1. Talk to yourself first. No matter how uncomfortable you are with the reality of death, make a commitment to yourself to face your fears. Desensitize yourself to your fears – look at them one by one and choose to move past them. For some, this takes more courage than for others. If you find you are unable to make progress with this, consider seeking help from clergy, family, friends, or a counselor. Like entering the ocean, some of us dive in head first while others take forever adjusting to the rising level of the water against our body. Don’t allow yourself to abandon the process just because it is hard for you. Know that the liberation you will achieve will be well worth any discomfort you go through.

2. Figure out what you think and feel about death and dying. Ask yourself some deep questions about your beliefs and values like the ones presented in last week’s blog. Then take the next step of figuring out how that translates in general terms into your own end of life care, the disposition of your body, what kind of end of life ritual would be right for you and what is important to you about how your personal possessions and wealth are distributed after your death.

3. Trust your own judgment about whether to legalize your wishes before or after talking with your loved ones. Some of us are painfully private people and really don’t want to talk about and explore beliefs about death and dying with other people. That’s just fine. However, your loved ones may have different needs and it is important to find a way to support each other. If you can’t talk about it — at a minimum document your personal preferences.

4. Don’t wait until you are dying to talk about death and dying. Invite conversation on this topic with the goal of making it more normal to talk about such things.

5. Create an emotionally safe space for exploring and sharing thoughts about death with your loved ones. This is not about convincing one another that you have a superior point of view. Rather, it is essential that we learn to deeply honor each other’s right to have a different point of view – not better or worse than ours, simply different. Cultivate a spaciousness in your mind that invites dialogue. Otherwise, others will clam up around you and you will never really know what matters to them. Demonstrate your love by bearing witness to their truth. Seek to really hear each other and to respect one another’s right to their own personal truth. When adult loved ones talk to each other about death it can be especially hard if they have spent many years being silenced by our society’s taboo against the subject. It can be awkward and disturbing for some. Someone needs to be brave and set the right tone.

Parents of young children can do a great service by teaching them about death as a normal part of life. (See my 6/28/10 post:12 Ways to Help Children Understand Death.) Each family’s circumstances and situation is different, and it is up to parents to be sensitive in choosing an appropriate time to broach the subject. Ideally, this is done in the normal everyday course of life rather than within the context of grieving. I am a big fan of regular family meetings to provide a forum for families to build their connections to one another – to clear the air when necessary and to discuss matters that affect their mutual well-being.

6. Take it one step at a time and be honest with yourself and your loved ones. If you are scared, say so. That’s perfectly fine and natural. Just allow yourselves to be honest about your present state with regards to death and start there. You might want to try the following steps, knowing that the process may well take several conversations:

 

    • Begin by talking philosophically and conceptually about death. Discuss your thoughts and feelings about the facts and observations presented in my post last week as a conversation starter.
    • Take the time for private contemplation to explore your personal thoughts and experiences regarding death. Use the questions I posed last week or develop your own list together.
    • Share your thoughts and experiences with each other. This will provide a foundational understanding of your personal preferences regarding your own end of life.
    • Share your personal preferences with each other.
    • Make a shared commitment with a deadline to finalize or update your end of life legal documents and to provide a copy of your healthcare proxy and living will to your doctors.
    • Acknowledge yourselves for your mutual completion – have a party!

If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

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The Power of Bearing Witness

There are times in life when the highest honor, the greatest love is paid to another by simply bearing witness to his or her experience. Bearing witness is largely nonverbal. It is the choice to give the gift of a pure expression of love and respect — being a compassionate observer to the unfolding of another person’s life or a particular moment or event. In a really good marriage, two people bear witness to the fullness of one another’s life experiences — in good times and bad.

When we bear witness, we lovingly give our attention to the other without judgment. We comfort without smothering. We play a supporting role — powerfully upholding the other starring in his or her life. It is not about us. It is about them. Yet, we make a profound decision when we do not try to fix their pain and suffering or share in their experience by telling how we had a similar experience. Bearing witness says, “You are not alone. I see you. I witness what you are experiencing. What you are experiencing matters to me. I surround you with my love.”

As a life coach and grief counselor, one of the primary things I do for my clients is to simply provide a safe space for them to speak their truth — to reveal what they think and feel about their own life. So much of our lives are spent with hidden truths because there is no time or because we don’t want to be a burden or to be judged, or do not feel safe to share. So, we keep our truth to ourselves and often feel very alone as a result. When we allow another to bear witness to us, we give ourselves the freedom to be known. Somehow, it’s like having your passport stamped to say that you went to this country or that. Having someone bear witness to your reality behind all the social masks we wear is a profound form of validation.

When someone we love is hurting or dying, it is easy to feel helpless and to want to somehow end the suffering by fixing the situation. Alternatively, some of us unload our own fears, telling the one whose suffering has provoked our fears how upset and afraid we are about what is happening to them. This can cause added stress and put them in the position of trying to comfort us when they are the ones in need of our comfort. These are often the times that call us to a higher response — to simply bear witness to another person’s life journey — not to engage in it, but to stand beside them in loving support. The focus is not to make the pain go away, but rather to let that person know that they are not alone and that we trust them to do whatever it is they need to do to go through that particular experience. Sometimes, this is best done in silence.

One of the very best examples I have ever seen of the profound support we can offer to each other through bearing witness is the final chapter of “Not Like My Mother” by Irene Tomkinson. I had the privilege of meeting Irene this past weekend and having her read this chapter to me. It shares the inner experience of a mother sitting beside her daughter in a doctor’s waiting room. The daughter has come to have a clinical abortion of the deceased fetus in her womb.

I am currently in the process of bearing witness to my dear friend Roy who had colon cancer surgery about a year ago and has been under hospice care ever since. He has been one of my greatest teachers of the wisdom of life. He doesn’t judge others for making choices that he wouldn’t make. He simply says, “it’s different.” He doesn’t seem to judge his failing health either. He is going along for the ride in full cooperation. I visit Roy once or twice a week and at first I kept trying to figure out what my role was. Other than his family, caregivers and hospice team, I think I am his only visitor. I became aware of the fact that I was ill at ease at first — I didn’t know what to do. I tried too hard to put a smile on his face, to share memories with him, to entertain him. It was a relief for me when he wanted me to read to him because at least I had something specific and tangible I could do. Eventually, I learned how to just be with him. The act of showing up, looking in his eyes and stroking his head or holding his hand is how I bear witness to him. Sometimes I just sit and silently pray for him while he sleeps. I think that is the best thing I can do for him. I learned to get myself out of the way. I am bearing witness to the end of his life. Sometimes just showing up says it all.

For those of you who struggle with going to see a sick or dying friend or relative because you just don’t know what to say or do, try just showing up and bearing witness. Often, it is our own discomfort and the feeling of helplessness that we are avoiding by not going into these situations. Sometimes we forget that our job is not to fix the situation at hand, but rather to help lift the burden of the other person by letting them know we care enough to show up. In good times and in bad, in sickness and in health, it is important that we show up for each other.

If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

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Honoring the Memory of a Deceased Loved One

This post was inspired by an email I received from a reader regarding last week’s blog, “The Power of Bearing Witness.” He wanted to know how to bear witness to a friend who had died. When bearing witness to the living, it is essential to take our cues from them. However, when bearing witness to the deceased, we are guided primarily by our own hearts — our love for them and our memories and knowledge of them. It is an action that while focused on the deceased is really for our own benefit. We need to know that they were sufficiently honored and that their memory will somehow live on through our actions.

For some of us, we cannot really let go until and unless we feel that the deceased has been appropriately honored. Whether this entails a Michael Jackson style memorial service extravaganza or a simple prayer is for each of us to discover. For many this is done through a traditional funeral and/or a memorial service or celebration. For others, it is the completion of an action that we know would have been important to the deceased — something that is our very own way of saying goodbye and that it mattered that this person lived. Here are some specific examples:

  • My aunt died two and a half years ago, and I have been participating in a legal process to remove a tenant from her home who has been blocking all entry. As a result of his actions, I was unable to get her clothes for her funeral, to search the apartment for an original copy of her will, to remove my uncle’s ashes, or to put her affairs to rest. I might add I am not a beneficiary of her estate and have nothing material to gain in this situation. This is a matter of honoring and respecting her. Seeing this through is my way of bearing witness to her.
  • My dear friend Joni lost her young husband unexpectedly. In addition to the funeral, she arranged to have a bench with a memorial plaque on it placed on the boardwalk near their beach house. For her, that is Manny’s bench and she often sits there, imagining him by her side, watching the ocean together as they had so enjoyed.
  • My friend Arlene lost her husband several years ago. He was an accomplished artist. She is now writing a book about him and his work to keep his memory alive.
  • Another friend, Carol, strengthened the community of her husband’s friends from near and far by writing a daily blog that bore witness to his journey to the end, inviting friends to send him messages that she read to him each day. Now that he has died, she continues to write about him, claiming and bearing witness to all the blessings he brought into her life.
  • Some families and/or groups of friends make donations in the name of the deceased or create an ongoing event in their memory. Whether it is a donation to his or her religious or spiritual community, or to research for the disease that brought about his or her death, the action is a tribute to the life lived by the deceased.
  • Whether in a group or as an individual, we can be creative in personalizing our tribute. I have a number of my mother’s possessions in my home and none is more meaningful to me than a little turquoise and yellow rubber lizard. It sits on a bookshelf that I pass many times each day. It is there because sometimes it catches my attention and fills me with my mother’s love and the memories of the silly game we used to play with it. I had found the lizard on the beach one year and when my mother was becoming less and less mobile, we invented and played a game where one of us would hide the lizard in plain sight on the first floor of our shared home and the other would have to find it. We played it because we loved and cared for each other. Now, I bear witness to her by letting that lizard flood me with her love as she lives on through me.

The point is that bearing witness to a deceased loved one is about doing whatever it takes for you to feel that you have done your part to preserve and honor his or her memory. Whether this is done in some form of private or public tribute, ritual or action, the point is that it allows you to feel complete with the person’s passing and to carry forward the treasures they brought into your life while letting go of them.

The reader who wrote last week wanted to bear witness to all that was good and kind and loving about his friend. Prior to self-destructing, overcome by the tragedies of his own life, the deceased had lived a full, good and blessed life, bringing joy and love to all he met. Yet, in death he was scorned and rejected by most of the people he had so loved in his life. I think that one of the most powerful ways that this reader can pay tribute to his friend is by forgiving those who turned away from the deceased and were unable to keep their love for him alive. With this reader’s permission, I am sharing this story with you. I invite you to share your ideas and inspirations about how this reader can best keep the memory of his dear friend alive and be at peace with his passing. I also invite you to share your own stories and ideas about how to bear witness to those we loved who have passed away.

If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

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Facing the Holidays When You’ve Lost a Loved One

If you have recently lost a loved one with whom you would otherwise be sharing this holiday season, you might be finding yourself wanting to burrow under your covers with a box of tissues until the holidays have passed. If this sounds like you, it’s time for some T.L.C. I don’t believe we should ever push down our emotions, though social conventions might make it advisable to develop strategies for dealing with these challenges privately or having a dear and trusted friend bear witness to what we are feeling. Remember that even at their best, holidays can be stressful. So, make taking thoughtful and loving care of yourself your number-one priority for the holidays.

Until 2006, I spent every Christmas except one with my mother. We shared a home for the last nine years of her life. For the past four Christmases, I have been adrift, unable to decorate my house for the holidays and spending Christmas like a peripheral, orphaned outsider to other people’s ways of spending the holiday. This year, I am finally ready to create Christmas on my own terms — just for me.

I have worked hard to develop the ability to pay attention to my own truth, and this year I am ready to give myself a beautiful Christmas. I am profoundly aware of the fact that part of not having my own Christmas these past four years has been because I was telling myself it didn’t matter because I had no one to make a fuss over. Then I had the tearful realization that I really need to make a fuss over myself this year. So, I am joyfully decorating my house with garlands, lights, wreaths, candles, angels and stars and plan to get a real Christmas tree, hoping that it survives my cats’ first Christmas. I am buying myself lots of presents, too, and signing the tags from all different people who have loved me and enriched my life. My heart is full and open again, and it simply took as long as it took.

Here are my suggestions for how to honor your own process of regaining an inner balance with the holidays.

  1. Pay attention and be ruthlessly honest with yourself about what you feel and what you need to do and not do as you move through this holiday season. Whether you have other people to coordinate your plans with or are facing the holidays alone, be as true to yourself as possible. Others may try to include you in their plans, or they may not, but it is really up to you to figure out what would be best for you. If you feel like sitting home in your pajamas sipping hot chocolate and crying or nibbling on cold pizza crust from the night before, that’s OK. If you feel happy and want to joyfully participate in the holidays — that’s OK, too. Don’t judge your truth, just live it and trust your own inner wisdom to carry you through.
  2. Be patient, kind and compassionate with yourself about what is true for you. There are no set rules about how to face the holidays carrying the loss of a loved one. This is a very personal matter. For many of us, the holidays trigger memories of thoughts, feelings, tastes, smells, rituals and traditions shared with our loved one. Without this person, the holidays may feel hollow and meaningless. If possible, reach for the deeper meaning of these holy days and the privilege of having shared them with someone you loved. Sometimes we take that for granted until we lose it. So, if your loss feels overwhelming, consider transforming it into gratitude for the blessing of having had this person in your life who touched you so deeply.
  3. Take loving care of yourself. Grief takes many forms. You might find yourself lethargic or grumpy or somehow out of sorts. That’s OK. Just stay focused on what is happening inside you and tend to yourself as you would to anyone else you love deeply. Love yourself deeply through this time.
  4. Anticipate and plan ahead. Don’t wait for others to make plans for you that may or may not have anything at all to do with what you really need. Face your truth and communicate what you need this year to those with whom you would otherwise be spending the holidays. If you have no one, consider new options like volunteering in your community, spending a quiet holiday by yourself or asking someone to include you in part of their festivities. You might even take a trip to either avoid the whole experience or to immerse yourself in another culture’s interpretation of the holidays.
  5. Make room for your grief or sadness. Grief is a very private matter, and the holidays have a way of magnifying it. Welcome your grief. Your sadness and tears are expressions of the healing process of letting go and moving forward into your life without your loved one. If you try to postpone or ignore your grief, it will find other ways to manifest and demand your attention. So, be open to your grieving and trust that it is healing.
  6. If appropriate, create a new ritual to honor the memory of your deceased loved one as you celebrate the holidays. My mother and I decorated shoe boxes that we put under the Christmas tree. Each of us would take time to write little messages of love and appreciation for the other, put them in each other’s box and then read them on Christmas morning. I am immersing myself in our love this Christmas by rereading our messages and adding new notes of appreciation for my mother’s love. By putting the names of people who have loved me on the tags of all the presents I have bought myself, I am also remembering them and surrounding myself with their love this Christmas.
  7. Remember that the holidays will pass. Chances are they will present challenges. Rise to the occasion and take good care of your sweet self.

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If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

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More About Carrying Your Grief Through the Holidays

Last week’s article, “Facing The Holidays When You Have Lost a Loved One” seems to have struck a nerve. So, I’d like to go more deeply into this topic this week. While grief is an exquisitely private matter, in order to move on, most of us need someone to bear witness to our truth in grieving. Too many people silently suffer with their grief, while putting on fake happy faces for those they love. Ironically, this usually serves no one. It not only prevents loved ones from knowing that you are suffering, but it deprives you of the comfort others might offer. If this sounds familiar, I am not suggesting you unload the depth of your grief on your loved ones, but denying your own suffering is not the answer either.

I needed help with my grieving and was lucky to find that our local hospice offers free grief counseling to those who have lost a loved one for the first eleven months after the death. It wasn’t that I needed someone to advise me about what to do, but rather that I needed someone I could tell my truth to — the good, the bad and the ugly. I needed someone to bear witness to me, stripped naked of all pretense moving through one of the most difficult experiences of my life. I needed someone to do that without judging and rejecting me or telling me that I should do this or that or the other thing — I needed someone’s compassion. I needed another human heart to know and to care about me and about what I was experiencing. For me, that didn’t need to be a loved one. It was easier to share my truth with a professional stranger.

Another source of support came to me from religious and spiritual teachings. As an ecumenical minister, I do not espouse any particular religious tradition, but have drawn great comfort from many different traditions. For example, I was raised Christian, and have often called upon the phrase “I caste my burdens on the Christ within and I go free” to help me through those experiences I don’t seem to be able to bear alone. (If the word “Christ” doesn’t work for you — substitute another word or reference point that does.) This action reminds me that I have resources that I often forget to draw upon. By opening to the presence of the divine, I can often surrender to that which is beyond my ability to understand or cope.

Buddhist teachings have also informed my understanding of life and death. They have helped me to see death not as a moment, but as an ever present process of transformation in the life of every sentient being. Each word or sentence I write is born and passes on. Its life continues only when it touches the hearts and minds of others. Similarly, each moment of our lives, each day, each meal, each relationship, each flower is born, lives and eventually dies — except in our memories.

Last week, one reader emailed me about how she and her daughters have found a way to bring the joy back into Christmas after her husband and their father died unexpectedly a year and a half ago. She wrote that as they headed into the holidays last year and again this year, they didn’t feel like celebrating and found no happiness in the idea of buying each other gifts that none of them needed. So, they decided to create a new family tradition and chose to anonymously find a local family in need through a social service agency and help give them a happy holiday. Having the chance to help families going through some very hard times has brightened their own holidays and, as she wrote,

Doing this in my husband’s memory has given us a positive way to honor this immensely kind man and loving, devoted father. It also gives us some badly needed perspective and reminds us that we need to be thankful for what we had and what we still have and that, as much as it stinks that they’ve lost a wonderful father and I’ve lost a loving husband, we each had a loving and close relationship with him, happy memories, a lot of laughter and a lot of life lessons that we will carry forever.

I think the process of grieving, particularly during the holiday season, eventually brings us to the realization that it is a matter of personal choice to either die inside from our grief or to lift our hearts up in gratitude for having loved someone so deeply — for having been blessed by his or her presence in our lives.

So many people try to avoid grieving and attempt to carry on with life as usual. But there is no “usual” after a dear one has died. We need to grieve. If we don’t, if we push the grief deep within us and refuse its expression, it will deaden us to the rest of our lives. Then there are two deaths, not just one. And, if you really think about it, that’s probably not what your loved one would have wanted for you.

There is a funny thing about human nature that we take a particular comfort in knowing that other people suffer too and that some appear to carry bigger burdens than our own. And sometimes when we are feeling particularly sorry for ourselves, we encounter a brilliant brave soul who inspires us to raise our heads high as we carry our own mixed blessings of life. While not specifically about the holidays, this video is a magnificent reminder of the resilience of the human heart.

No matter whether our burdens are heavy or light, may we all be kinder to ourselves and each other this holiday season.

If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

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Why End-Of-Life Planning Is Such A Good Idea

The fact that most people do not even know what end-of-life planning involves is both sad and the source of an enormous amount of stress and distress for many families. We have all heard horror stories about families fighting over a loved one’s will or struggling over what medical treatment choices to make on their behalf when they are unable to communicate their wishes. These guessing games, power struggles and the heartache involved could all be avoided or drastically reduced if we would only face the reality of human mortality and document our preferences for the end of our lives in advance of need.

Talking about dying and death is a huge social taboo. It is almost as though we collectively put our hands over our eyes like children who innocently think, “if I don’t see it or look at it, it doesn’t exist.” But, it does. So, let’s take a look at the truth of this matter.

The key to effective end-of-life planning is not to race through filling out legal documents, but rather to take our time to thoughtfully clarify our thoughts, attitudes, beliefs and feelings about dying and death first. It is important to understand that our mental and emotional posture serves as the foundation for how we live our lives, which includes how we live our dying.

We need to take the time to understand the full scope of what is involved in putting our affairs in order and seek out solid information on each topical area. Then we can dive in and embrace the process. While perhaps daunting or a bit scary at first, many are surprised to find this a very interesting, self-revealing and liberating process.

The Five Areas of End-of-Life Preparation

  1. Your Values and Beliefs: Clarifying your beliefs about aging, incapacitation, dying and death serve as the foundation for all the decisions you will make regarding your own end-of-life process.
  2. Advance Healthcare Planning: Documenting your healthcare wishes. This involves a Healthcare Proxy (a legal form used to appoint an agent and an alternate to speak on your behalf in the event that you are unable to speak for yourself regarding your medical care) and a Living Will (a clear expression of your healthcare treatment preferences which is what any court would be looking for in the event of a dispute).
  3. Advance Financial Planning: Making decisions about your financial and material wealth that will provide for your own care and comfort through the end of your life as well as the disbursement of your possessions after your death (accomplished through a legal will or trust).
  4. Your Ethical Will: Documenting the story of your life from your point of view as a gift of love and understanding for those you will leave behind.
  5. Preferences for Your Deathday and End-of-Life Rituals: Providing instructions for your loved ones about your beliefs and desires regarding such things as whether you want to be cremated or buried, honored with a funeral and/or a memorial service, and whether you are a body, tissue or organ donor.

End-of-life planning is not about secretly hiding away documents that express your wishes, but rather using these documents as the basis for important conversations with your loved ones, doctor(s) and other advisors and caregivers so that your voice is heard and that any objections or concerns can be addressed in advance. This takes courage, yet it is the most loving thing we can do to prevent the heartache and horror stories that will otherwise be caused by not speaking up on our own behalf.

Understanding the importance of end-of-life planning doesn’t seem to be enough. So, let’s debunk some of the most common excuses we make for not putting our affairs in order:

Top Seven Excuses for Not Putting Our Affairs in Order

  1. Irrational Fears: “If I do the paperwork, then I will die soon and if I don’t do it, I won’t die because I won’t be ready yet.” — As with all fears, they are only as powerful as the energy we feed into them.
  2. I Don’t Have Time: “I’ll do it later. I’m too busy. Or, I’m young, and therefore I have plenty of time.” — How much time you have is not entirely in your control.
  3. It’s Too Overwhelming: “It’s all too much. I don’t know where to start.” — The risk involved in not having your affairs in order is just too high!
  4. I Don’t Like to Think About Things Like This: “It’s too creepy to deal with this stuff.” — This is not something you do because you like it. You do it as an act of love for yourself and those you will leave behind.
  5. It’s Too Expensive: “I can’t afford the legal expense right now.” — It will be far more expensive financially, legally and emotionally for you and for your loved ones if you don’t get this done, plus you forfeit the right to direct your own affairs.
  6. Confidentially: “I don’t want anyone knowing too much about my personal affairs.” — You don’t want them knowing too little either. Remember, you have complete control over who you choose to provide what information.
  7. Fear of Dying and Death: “I’m afraid.” — Death is not a mistake. It is a normal part of living for all sentient beings on Planet Earth. The better we are able to accept our mortality, the more fully we are able to embrace and enjoy our life.

If you are not convinced yet to put your affairs in order, consider the payoffs.

The Top Five Payoffs for Putting Your Affairs in Order Now!

  1. Protecting Your Right to Make Your Own Decisions: Having decisions made from your point of view — not someone else’s.
  2. Demonstrating Your Love for Those You Hold Dear: The more you do in advance of need, the less your loved ones will have to do. Preparation eliminates the potential for family disputes over what to do.
  3. Minimizing Professional Fees: Good information gathering and organization can save thousands of dollars in professional fees to pay someone to second guess what only we know about our affairs.
  4. Dealing with the Reality That Death is an Unscheduled Event: Each day that goes by without getting your affairs in order increases the probability that you will not have them done when the need arises.
  5. Claiming Your Freedom From Guilt, Fear, Shame, Stress and Avoidance: Imagine how much energy you have expended in avoiding taking care of this and how wonderful it will be to free up this energy, stop its ongoing drainage and have the satisfaction of having your affairs in order.

I rest my case!

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If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

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Why Hospitals Are the Worst Place to Be When You Are Sick (Part 2)

I am deeply grateful for the outpouring of compassion as well as the wealth of information I received from readers in response to my recent post, “Why Hospitals Are the Worst Place to Be When You Are Sick.” The spread of infections in hospitals has reached epidemic proportions. In this followup, I want to share some of the resources that were shared with me in emails from readers.

The Centers for Disease Control and Prevention (CDC) have identified hospital-acquired infections as the fourth leading cause of death in the United States. The CDC reported that in 2002, nearly 100,000 people died with a hospital-acquired infection (HAI), while an estimated 1.7 million people became infected. All in all, more people die per year in the U.S. with an HAI than from AIDS, breast cancer and car accidents combined.

A report published by the CDC in 2009 estimates that HAIs cost the U.S. healthcare system between $28 and $33 billion per year. Costs are such that Business Week recently identified “stopping infections in hospitals” as one of the top five methods for controlling healthcare costs.

Despite attempts to control the spread of infection, HAIs continue to wreak havoc in U.S. hospitals. The Agency for Healthcare Research and Quality (AHRQ) is the lead Federal agency charged with improving the quality, safety, efficiency and effectiveness of our healthcare. The 2009 AHRQ National Healthcare Quality Report established that hospital-acquired infections are “the most common complication of hospital care.”

In describing the scope of this problem, one reader wrote:

These infections are what’s known as antibiotic resistant pathogens or superbugs. They include Staph, MRSA, C. Diff, HIV, herpes, VRE, e. Coli, Salmonella, Norovirus, Avian Influenza A, Listeria, Acinetobacter, Rhinovirus and others. These pathogens are becoming more prevalent throughout the entire world than one could imagine. We are on the doorstep of growing a worldwide epidemic with Hospital acquired infections (HAI’s) rising at an alarming rate. A new one called NDM-1 that is believed to have originated in New Delhi was discovered mid-2010 and has now spread into many countries, killing hundreds of people. But the scary thing is that there may not be an antibiotic to kill it. So what do you do, then, when there are no successful antibiotic treatments?

New Technologies

Thankfully, the answer may be found in some of the new technologies that are being developed to combat hospital acquired infections. As one reader explained:

The World Health Organization (WHO) and the Centers for Disease Control (CDC) insist on hand sanitation at bedside in acute care facilities, each and every time healthcare workers are about to be touch the patient or his surroundings, because the hands carry infection-causing pathogens which must be inactivated to assure patient safety. The current approaches — hand washing with soap and use of alcohol rubs — have limited germicidal effectiveness, take too long (minutes for hand washing, 30 seconds for rubs) and irritate the hands due to persistent contact dermatitis, so they cannot be practically used in the WHO defined mode. Moreover, no supplier to date has come up with a means to re-sterilize gloved hands, after donning and during use, which are also vectors for transmission of dangerous germs in both the OR and the ICU. This remains an unbroken infection-causing pathway.

Here are three organizations bringing forward new technologies:

Germgard Lighting, LLC . Germgard’s technology pipeline enables a multi-tiered approach to infection prevention. Included are a UV-C technology; cost-effective bare and gloved hand sanitation process; a gas-based, room temperature medical instrument sterilization process; as well as new surface cleaning and air sterilization technologies.

IV-7 Ultimate Germ Defense. This hard surface disinfectant is currently being tested at John Hopkins Hospital. The technology is based on development of a new molecule claimed to be an effective, safe and non-toxic method of eradicating surface contaminants. The company claims that it:

  • Provides 24-hour residual killing ability
  • Will be awarded a Level 4 Toxicity Rating from the US EPA (no other product has received this rating in over 30 years)
  • Will be validated that all the bacteria, viruses and fungi cannot become resistant to it.

Bio-Intervention Specialists . This company is dedicated to saving lives and reducing the costs associated with hospital infections. They have just received EPA registration for a new disinfecting technology that they claim is less toxic than toothpaste, environmentally friendly, yet powerful enough to kill even the toughest microbes (such as MRSA and C. diff spores) found in hospital environments. Third party efficacy and toxicity testing over the past two years has demonstrated that Electro-BioCide is entirely different from commonly used disinfectants because its kill mechanism is electrical, not chemical. As such, third party testing has demonstrated a complete kill of microbes such as MRSA and Pseudomonas in less than 30 seconds. This greatly reduces the chance for the mutation of organisms.

Patient Advocacy Resources

The Informed Patient Institute . This is an independent nonprofit organization that provides credible online information about healthcare quality and patient safety for consumers. They rate the usefulness of online health care report cards, starting with nursing homes and physicians, and provide tip sheets about what to do if you have a concern about quality in a hospital, nursing home or physician’s office.

Consumer’s Union’s Safe Patient Project. This group seeks to eliminate medical harm in our health care system through public disclosure of health care outcomes (such as hospital-acquired infection rates and incidents of medical errors) and information about health care providers (such as complaints against and license violations of physicians and hospitals). The campaign also works to improve drug safety by ensuring that consumers have full information about prescription drugs (such as in direct-to-consumer ads and access to clinical trial results), by strengthening oversight of the FDA and by ending practices that create conflicts of interest (such as drug company gifts to doctors).

The Empowered Patient Coalition. This nonprofit organization was created by patient advocates devoted to helping the public improve the quality and the safety of their healthcare, with an emphasis on high quality information and education. For example, the coalition has developed a detailed and comprehensive patient guide to hospital care which will give consumers a blue print for interacting with the health care system in ways that are safe, successful and empowering. The consumer and the patient advocate will learn how to reduce the odds of experiencing medical error and hospital-acquired infection and understand the tremendous impact they can have on patient safety and health care quality.

Books

Elizabeth L. Bewley‘s new book, “Killer Cure: Why Health Care is the Second Leading Cause of Death in America and How to Ensure That It’s Not Yours,” is focused on driving change so that health care’s purpose stops being “to deliver tests and treatments” and starts being “to enable people to lead the lives they want.” According to Publishers Weekly, this book includes useful statistics, references, a guide for further reading and excellent suggestions for patients.

Bart Windrum‘s “Notes from the Waiting Room: Managing a Loved One’s (End-of-Life) Hospitalization” offers an intelligent and heartfelt examination of what interferes with having the kind of peaceful life’s ending that most of us say we want. This is a constructive, engaging and challenging critique of the institutionalized confusion around end-of-life goals, deeply held values and biotechnology.

If you have additional resources you would like to share, please do so in the comment section of this article, so others may learn about them as well.

If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

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