The Role of a Massage Therapist in End of Life Care

The end of life can be an extremely scary and stressful time. Massage therapy is one of the ways Arbor Hospice provides care for the whole person, relieving physical, emotional and spiritual distress, and offering comfort. The role of the massage therapist includes:

• Be a healing presence. Massage therapists bring forth something that comes from deep within--their ability to be present. Rather than revert to prescribed techniques, therapists must trust the simplicity of human compassion and their capacity to offer it to another. A therapist’s best resources when serving the dying person doesn't come from the techniques they’ve studied but from within their own hearts. They become the space-holder, allowing the dying person his/her own process and experience, and sometimes serve as an anchor for family members and other caregivers.

• Enhance the quality of life. Doing what is called for to ease any form of discomfort is the best approach to take. One minute a therapist might be offering a gentle foot massage or holding a hand and the next, moisten dry lips or help turn someone on their side to make breathing easier. Mother Teresa once said, "Let us touch the dying, the poor, the lonely and the unwanted according to the graces we have received and let us not be ashamed or slow to do the humble work." Hospice service is about doing the humble work each moment as it unfolds.

Moving a part of the body for positional change and to ease pressure is a good technique to implement. Change the adjustment of the bed or add supportive pillows under the arms or legs. Mindfully adjust the pillows under the head. Lifting a part of the body and holding it up for a moment relieves pressure.

Therapists must be willing to let go of their idea of what a “regular” session looks like. A session with a dying person may include gentle massage, focused touch or no touch at all. The length of a session varies according to what is called for at the time. The key is sound clinical judgment but also letting the rules go to truly serve the person. Confidence in skills is what allows the therapist to listen to inner guidance and respond accordingly. The patient may simply need someone to compassionately hold a hand or the feet while focusing attention on the inner wholeness of the person. Sometimes massage therapists have to stop doing and simply BE.

The Importance of Musical Preference in Music Therapy

Why is music preference so important in music therapy?
Research shows that people benefit most from the music they prefer. If a patient loves country music, a music therapist will prepare that genre of music for various interventions depending on that patient’s goals. If the same patient can’t stand jazz, but the music therapist brings a few jazz standards to share in the music therapy session, the patient will not receive the benefit. The patient may think about how much he or she dislikes the music being shared the entire time. When preferred music is being shared, however, patients reminisce more readily, are more social, interact with a brighter affect, and they might even be more active in the session – dancing, singing or playing instruments.

Where does musical preference come from?
Throughout our lives, we are exposed to music in many different environments – in school, on the radio, movies and television, from our children’s and family members’ recitals, or from our own music making experiences. Each exposure to music has the potential to create a permanent impression on us through our emotional memory banks. Research shows that these musical memories can even stick with us when other memories fade away. A patient who has a background of playing the piano may very much enjoy listening to classical piano music, or on the other hand, they might prefer not to think about the weekly piano lessons that they dreaded as a child!

Music therapy research has shown that the most meaningful music typically is that of a person’s young adulthood. For a typical 80 to 90 year-old patient, this means the music therapist will be pulling out 1940’s classics like “Don’t Sit Under the Apple Tree,” or “Let Me Call You Sweetheart.”

However this is a generalization, and is only meant to be a starting point for determining musical preference. Many patients may also be quite familiar with, and have fond memories of, music of their parents’ generation, for example.
 
Musical Memories
Reminiscing with patients about their musical memories is interesting. One patient recently remembered going dancing with her sister every Saturday night. Another patient always remembers his mother singing around the house. Another patient remembered a song she sang to comfort herself as a girl, when a boyfriend broke up with her. Some patients feel connected to their spirituality through music, and some people just enjoy listening to music in general!

Visit the Arbor Hospice website for videos from some of our music therapy sessions.

Addressing Chewing and Swallowing Difficulties

It is common for aging adults and those with illness to have trouble chewing or swallowing their food. Arbor Hospice recommends individuals who have trouble chewing and/or swallowing may benefit from changing the consistency of their food and trying either a mechanical soft or puree diet.

A mechanical soft diet requires some chewing ability. Food should be moist and cooked to a fork-mashable texture. Meat should be ground or minced. Covering the meat with gravy may help. Bread products, crackers and other dry foods may be difficult to swallow and a good substitution can be pasta with sauce.

A puree diet requires minimal chewing. Food should be processed in a food processor until smooth and pudding-like. It should contain no small particles or chunks, which could make swallowing much more difficult. Adding small amounts of water, milk, broth or other fluids to the food being pureed can make the process quicker and help yield a smoother product. Peanut butter should always be mixed with other items when pureed and should never be eaten alone as it is a choking hazard for those with swallowing difficulties. Some items puree better than others. For example, cooked sweet potatoes puree better than regular potatoes, and cooked carrots puree well but corn does not.

Here are some meal suggestions:

Breakfast:

• Regular cooked cream of wheat or grits: no need to puree
• Fruit: some fruits become wet when pureed and require the addition of a stabilizer. Unflavored gelatin works well for this. Add a bit of lemon juice and sugar to pureed bananas to reduce discoloration. 
• Coffee cake, danish or donut: add one tablespoon milk or more to reach desired consistency.
• Hardboiled eggs and toast: puree one egg with two tablespoons milk, one slice of toast and one teaspoon of butter until completely smooth. 

Lunch and Dinner: 

• Casseroles: puree freshly cooked casserole and add gravy or broth to achieve desired consistency
• Meat: add a stabilizer like bread, mashed potato flakes or fat to help produce a smoother product
• Vegetables: cook raw and frozen vegetables first. Puree and add butter or a stabilizer as needed. 
• Fruit: Some fruits become wet when pureed and require the addition of a stabilizer. Unflavored gelatin works well for this. 
• Peanut butter and jelly sandwich: puree two slices of bread, three tablespoons creamy peanut butter, two tablespoons seedless jelly and three tablespoons milk or more to obtain desired consistency.
• Smooth cream soups

Snack Ideas: 

• Pureed cottage cheese
• Pudding
• Apple sauce
• Yogurt

Dessert:

• Dutch Apple Pie: puree one slice of pie with three tablespoons milk until desired consistency. 
• Cupcake: puree cupcake with two tablespoons milk
• Frosted brownie: puree browning square with 1.5 tablespoons milk or more to reach desired consistency

Considerations at the End of Life

Following a death, there are many things that must be done by family members or representatives of the deceased. These can be difficult times for everyone involved, and many issues may be more easily dealt with before the end of life. These issues may include decisions about:

• Funeral home
• Cemetery or funeral service
• Monument
• Casket or urn selection
• Vault selection
• Clothing for viewing of the deceased
• Information for the obituary
• Music, prayers and/or speakers for the memorial or funeral service

By contacting a funeral home in advance, useful information and assistance may be obtained. In addition, pre-planning and signing necessary papers prior to death may qualify families lower rates for services provided by the funeral home.

After your loved one passes, phone calls to various agencies, organizations and personal services may also be necessary. Some agencies may need to know the date of the death. In most cases, the funeral home will provide you with needed documentation, such as a death certificate, for these agencies.

Calls that may need to be made following the death of your loved one include:

• Your faith system, such as a minister, rabbi, spiritual advisor
• Insurance agent, such as life, health, disability
• Unions and fraternal organizations
• Attorney
• Accountant
• Executor of the estate
• Government offices, including Social Security and Internal Revenue Service
• Pension plans
• Veterans Administration
• Bank, investment companies, mortgage companies
• Title on all real estate property may have to be changed. If applicable, application for widowed person exemption as well as homestead and disability exemptions may be completed.

One of the many roles of the Arbor Hospice Care Team is to help patients and families with these tasks. If you have questions, feel free to contact your team.

Lessons Through Grief

A few years back, I was invited to share my personal experiences with grief at an annual Arbor Hospice Memorial Event. Here's what I had to say in the hope that it may be helpful to you in times of sorrow.

We have gathered together today to remember and honor those who are no longer physically with us, our parents, grandparents, partners and friends, spouses and children and others whom we loved.

We are here, too, because love and loss are inextricably intertwined. Our presence is a recognition that grief is the dues we pay for the love that has enriched our lives. We are also here this evening because we understand the value of a community that can support us through difficult times.

No one ever knows how much others hurt or in what ways. So I do not presume to know your grief. That's why I am speaking with you this evening not as an expert, but as one who has lost and grieved and has come to understand the power of human resilience in the face of profound loss.

My first significant losses were the deaths of my parents at too early an age, deaths that for me changed everything that followed. My mother died suddenly in her 60s of a heart attack. A few years later, my father died slowly from a progressive, debilitating disease. Having experienced both, neither way of dying recommends itself to me.

Like you, I put one foot in front of another to do whatever was next in fulfilling my daily responsibilities, although I wasn't always sure that I had the capacity to do so. Over time, I got better. My grief became less raw and consuming.

Since then, there have been other significant losses, each of which has deepened my understanding of the unique and unanticipated ways in which grief can present itself.

While grieving is a complex and unpredictable process, I'd like to share with you what I've learned through my own grief journey in the hope that some part of it may be of value to you.

The first thing I learned is that we are not crazy, even though we may feel that way at times. Most of our reactions are quite normal.

After my mother's death, I had trouble remembering things, and more than once I drove considerable distance with no memory of any details of the drive.

I had once read about monks in a religious order in New York State who believed that we experience heaven and hell in this lifetime through our emotional states, and I couldn't imagine a worse way to spend eternity than with the pain I felt about the loss of my mother.

Some of us can't sleep, or we lose our appetites. We may be seized by overpowering emotions at unexpected times. We have mood swings, we are unable to concentrate, and we may feel angry, guilty or fearful for the future.

Our relationships often change. After my mother's death, my father and I regularly talked on the phone, a task he had automatically handed off to my mother when she was alive. As we talked more, we became much closer, and some of my most cherished memories of my father were during this period.

The second thing I learned is that death of a loved one often raises issues related to the meaning of life and of our own mortality.

Questions regarding life's purpose arise. Our faith may be challenged. We ask "Why?" and our suffering may be increased if we don't receive a satisfying answer.

We may use metaphors to help us understand what otherwise seems incomprehensible. I've heard people say that grief is a journey, a wound, a mystery, a dark forest, a large lake, a voyage on turbulent sea and an exclusive club with a steep membership fee.

When my father died five years after my mother, I thought of myself as an orphan, although being in my 40s, I hardly fit the conventional meaning of that term. As the oldest child, I was acknowledging that in the natural order of things, my turn was next, an awareness that didn't always sit easily with me.

To make sense of things, I wrote about what I was thinking and feeling. Although my concentration was poor for several months, I was eventually able to listen to music and to read poetry and books that had spiritual messages.

My third lesson was that things do get better, but they do so in their own way and time. One of the few certainties in life is that things change, as you well know.

I've heard Arbor Hospice grief support staff say that while the wound doesn't disappear, its rough edges are smoothed by time. The frequency, duration and intensity of our sorrow diminishes.

Our sleep and appetite slowly return. We take better care of ourselves. We set new goals and resolve to find happiness wherever we can. We may begin to feel moments of joy as happy memories emerge. How long this takes varies from person to person as we each grieve in our own unique ways.

We gather strength as we experience and move past "the firsts" - the first birthdays and anniversaries, the first holidays and so on. The long-dreaded first Christmas after my mother's death passed with far less sadness than I anticipated, partly because of the degree of cooperation among the members of my family, an occurrence that undoubtedly would have brought a smile to my mother's face.

I knew things were getting better for me when I would suddenly be aware that several days had passed without sadness. Tears no longer came to my eyes when I thought of my parents, and happy memories slowly emerged.

During this time, I learned that rituals of remembrance like this one can sooth us and that grief is easier to bear together than alone, at least for most of us. We are here this evening because there is hope and strength in family and community.

I also learned that following an ending there is a new beginning, although not necessarily the one we would have chosen for ourselves had we been given a choice. But between the ending and beginning there may be a desert of sorts. With time and the support of others, we find our way to a new reality, a new normal.

A final lesson was that we do not forget those who have gone on before us. Many of us fear that we will gradually lose the precious memories we hold of our loved ones. We may be afraid that as our grief diminishes, our loved ones may slowly slip away from us in our memories, a prospect that seems unbearable. With time, though, joyful and sustaining memories arise that offer strength and guidance.

I believe that our loved ones live on through us. My parents and ancestors and others I loved remain alive in me. Like stones thrown in a pond, their thoughts and words and deeds ripple into the future, influencing us and countless others, including generations not yet born, in ways that are sometimes quite profound.

Years ago a friend told me that he was about to travel to Florida to visit a dying friend of his who he thought he was unlikely to see again, and he wondered what he might say to him. I told him that I had recently read a story about a man who had sought a highly-regarded spiritual teacher to find an answer to a similar question. The teacher told the man, "Tell him that when he dies, a part of you will die and go with him and that he will never be alone."

Today, I might offer another perspective to my friend: "Tell him when he dies, a part of him will stay with you and be a part of who you are for as long as you live and even beyond in the lives of others."

Sometimes people ask me why I am a hospice volunteer. I respond that I do it because it's a privilege to be with individuals and their families at such a sacred time, a time when life is reduced to its essentials.

In that spirit, I thank you for the privilege of being here with you today. And I thank you for being here for yourselves and for each other.

What has your grief taught you?

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Relieving Concerns About Pain Medications

Many people have concerns and fears about taking morphine and other opioids. This is often because of misconceptions or a lack of information.

Virtually every authoritative body - from the World Health Organization to the United States Department of Health and Human Services Agency for Health Care Policy and Research - agrees that medications like morphine are best for treating moderate to severe pain.

In individuals with serious illness, opioids are the most commonly used medications in the management of moderate to severe pain because of their effectiveness, ease of dosing and very minimal risk of severe side effects compared to how beneficial they are.

Morphine and other medications like morphine are very safe when used correctly. Arbor Hospice patients are able to utilize these medications safely for many reasons.

• All Arbor Hospice staff receive extensive training in how these medications work in the body to relieve pain, how to give safe doses of the medication and which patients would benefit from taking these medications.
• The hospice pharmacy has licensed pharmacists who double-check all medications ordered. Working with the Arbor Hospice Medical Directors, hospice care team and the patient's attending physician, the pharmacists collaborate to ensure that each patient receives safe, effective medication therapy based on their individual need.
• After patients have been on medications like morphine for awhile, their bodies adjust and higher doses may be needed to provide relief. This can be done safely without causing long-term side effects. Just as people often need changes in blood pressure medicine over time, people often need changes in their pain medication.
• Unlike other pain relievers such as Acetaminophen (Tylenol) and Ibuprofen (Motrin, Advil), there is no limit to an opioid dose and therefore dosages can safely continue to increase throughout the disease progression.
• Since the body can become tolerant to the effects of opioids, the right dose of morphine is that which controls pain. This dose can easily be given without causing unmanageable or dangerous side effects.
• Side effects with any medication are possible. Fortunately, those associated with pain medications go away quickly and can be prevented or treated.
• Addition very rarely, if ever, occurs in patients who take medications for pain. Research has shown that less than one percent of all patients who take medications like morphine for pain develop any signs of addiction.
• Arbor Hospice staff follow dosing standards suggested by the World Health Organization, the Agency for Health Care Policy and Research and the American and International Pain Societies. These dosing standards have been proven safe in numerous studies.

Anxiety At The End of Life

Feelings of nervousness, also known as anxiety, are normal responses when things feel uncertain or beyond your control. Because of the many physical and emotional changes associated with illness, feelings of nervousness may occur. Although anxiety is a natural response, being nervous is uncomfortable and can affect the quality of your life.

Causes of Anxiety
Over the course of an illness, there are things that can cause feelings of anxiety or nervousness. It is helpful to identify what may be causing you to feel anxious. Identifying the cause of your nervousness will be helpful in determining what to do about it. However, it is possible to feel anxious without being able to say why. Some of the things that may cause feelings of anxiety include:

• Fear of the unknown
• Changes in how the disease is advancing
• Fear about relieving symptoms such as constipation, pain or shortness of breath
• Concerns about medications
• Fear about giving or receiving care
• Fear about not being able to care for yourself 
• Fear of physical or emotional loss
• Responding to changes in your life
• Concerns about your family or loved ones
• Concerns about moving to a nursing home or assisted living facility
• Unexpected news, favorable or unfavorable
• Fear related to making decisions about the future
• Concerns about making the right decisions
• Questions or concerns about spiritual or religious issues
• Financial concerns
• Changes in your role within the family or the community

Signs and Symptoms of Anxiety
Each person responds differently to situations which cause feelings of anxiety. Your body has many different ways of showing anxiety. Knowing that you may be nervous is the first step to feeling better. Some of the more common symptoms of anxiety include:

• Restlessness or not being able to relax
• Irritability
• Stomach upset or nausea
• Butterflies in the stomach and/or feeling as though there is a lump in your throat
• Muscle tension, aches, soreness or just feeling tense
• Feeling very tired or exhausted
• Trouble falling or staying asleep or having nightmares
• Getting upset about things which normally would not upset you
• Worrying about what could or may happen
• Trouble concentrating or feeling overwhelmed
• Headaches
• Eating more or eating less than usual 

What You Can Do
While feelings of anxiety are normal, it is important to decrease the effect these feelings may have on you or the people you care for. The symptoms of anxiety are your body's way of letting you know it needs to relax. It your body is relaxed, it helps you cope with what is happening in your life. Talking to someone you trust is usually a good place to start. Other suggestions to reduce anxiety may include: 

• Talk about your feelings, fears and concerns with someone who will listen and provide support, including family members, friends, clergy and/or your Arbor Hospice team
• Take slow, deep breaths
• Enjoy a relaxing activity such as a hot bath, a good book
• Take a short walk or find a place that you can relax, uninterrupted for awhile
• Seek spiritual support from your clergy and/or the Arbor Hospice spiritual care coordinator
• Allow yourself to cry
• Keep a journal and write about your fears, feelings, concerns and/or things that are happening in your life
• Listen to soothing music 

What to Write to a Friend With Terminal Illness

On a flight last month, I introduced myself to seatmates and eventually handed the mother-daughter travelers my condolence tips bookmarks.

"This is great," the daughter said. Her elderly mother remarked, "I live in a retirement community and we lose residents from time to time. The manager sets up a nice tribute display, and I like to send a card to the family." But their next question took an interesting turn.

"We have a couple friends who are terminally ill. I'd like to send a card, but what should I say?"

Let's explore this:

• Terminal illness is "the advanced stage of a disease with an unfavorable prognosis and no known cure."
• A prognosis of a number of months (or years) is not a scheduled departure date. 
• The outward condition (appearance) and functioning of a person with terminal illness will vary and may defy others' expectations. 
• Until you are dead, you are alive. 

Blogger Michelle Devon writes with firsthand knowledge in Dying to Live. She shares some riveting thoughts on the tug-of-war between living to stay alive and being the person you want to be.
"Learning to live with disease that is expected to result in your death absolutely does change your perspective. But as my blog title says, I'm not alive and dying. I'm dying to live!"

I asked Arbor Hospice's Lead Grief Support Services Coordinator, Melissa Schultz, LMSW to comment on the interpersonal challenges of living the "last chapter."

"The diagnosis of a terminal illness can be extremely isolating. Many people back off because they aren't sure what to say and are afraid to say the wrong thing. The most important thing is to offer a comforting presence. Whatever you choose to write, speak from the heart. It's okay to acknowledge the illness in a supportive manner, such as 'I'd like to come visit you, if you're up for it.' It would be a disservice to you and your friend to pretend that nothing has changed, but that doesn't mean they need to be pitied or avoided. As Maya Angelou stated, 'I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

Every day, in countless scenarios, we have the opportunity to say "thank you, I appreciate you." Keep that in mind during your daily activities and when you write a note to anyone. Here are some suggestions about writing to be a friend with terminal illness:

Don’t Write

Do Write

I’m gonna miss you so much!  Get well soon!  Hey, Steve Jobs lived a long time with his pancreatic cancer, so …  Have you thought of: medical advice/legal or tax advice  What are you going to do about your (special needs family member)  Good riddance to that boring job!  Are the kids finally doing some housework?

CARE: How are you today?  FEEL: I’m so sorry this has happened.  ENCOURAGE: Take care of yourself.  REMEMBER: I am thinking about you. In fact, I was just_____ and I remembered when __.  ROUTINE: Did that last storm send (pet) under the bed?  LISTEN: I would love to share a cup of tea sometime soon; I’m a good listener. By the way, my email is _____  ADMIRE: I admire your courage and always have you in my prayers  AFFECTION: Give my love & hugs to __.

This blog post was written by Deborah R. Chappa, the Condolence Note Coach. She works in a Livonia funeral home and is an author, blogger and instructor on writing condolence notes. She is conducting a workshop on Wednesday, September 10 at 1 p.m. at the Livonia Civic Center Library. To register, call the Adult Services Desk at (734) 466-2590.

Lessons from Loss - One Year Later

The one-year anniversary of a parent’s death is a milestone for any adult child.  Bearing witness to a year of "firsts" without your parent: of birthdays – yours and theirs; of holidays, big and small; of national and political events; and of family happenings; all of which would have had an impact on them and of which they would have influenced your response to, can be an emotional roller coaster. 

As I conclude the one year anniversary of the death of my mother this week on July 23, I am struck by the dichotomy of how hard and how easy it has been to let go of her memory. As the ten-day period approached of the time she was admitted to the hospital to the time she died, I found myself reliving moment-by-moment what happened last year and dreading what was coming each day. 

There was the call that she needed to go to an emergency room; then having her admitted to the hospital; the subsequent cancer diagnosis; then a call that she was in organ failure post-surgery; and finally the decision to bring her to The Residence of ArborHospice for the last 36 hours of an incredible life.  

Physically feeling nauseated each step of the way, I had to remind myself that I knew what the outcome was this time, and I had some control.  I also am astounded at how much I have learned from my mother since her death, and wish I could tell her in person how much I appreciate those lessons.  

I have to acknowledge, however, that we did not have the type of relationship where I could have told her in person.  I am so thankful that a week before she was admitted into the hospital, we had a half-serious phone conversation in which I acknowledged that she might have been right about something for the past thirty years – we both laughed, and moved on to another topic.   

One year later, having grown in knowledge about that topic, I am grateful she had me learn about it the way she did.  She was not perfect, as none of us are, but was wiser than I gave her credit for.   

Now this year of mourning is over, and while we never truly are done on our grief journeys, I know that the intensity of the journey will change.  Some days will be worse than others, but I know with support from family and friends who have been on this journey before me  that I too will be able to remember more of the moments that bring smiles and laughter than tears.

This blog entry was written by Gloria D. Brooks, Arbor Hospice President & CEO. You may contact Gloria by commenting below or emailing her at gbrooks@arborhospice.org.

Common Reasons Aging Adults Do Not Receive Enough Nutrition

As we age, receiving the nutrition our bodies need is hindered by new obstacles. The statements below are some of the most common comments I hear from seniors regarding their eating. Addressing these concerns is an important step in reducing the incidence of malnutrition and dehydration in seniors, as well as the potential for depression due to inability to consume favorite foods and fluids.

"Nothing tastes the same." Aging adults often tell me that food tastes too salty, too sweet, too spicy or that it has no flavor at all. Our sense of taste and smell change over time, and some of our favorite foods no longer taste right. Medications can also change how food tastes. If food tastes too strong, try limiting processed foods which often have a lot of added salt and sugar. While adding seasoning to favorite recipes may have been common practice in the past, try cooking without seasoning and add it later, if desired. Experimenting with different spices or herbs make recipes more appealing.

"I just can't eat that much food" or "I am just not hungry." Decreased hunger and a lack of appetite is common in aging adults. A full plate of food may seem overwhelming for seniors and they may actually eat less when faced with too much. Try decreasing meal portions and increase frequency of snacks. Limit concentrated sweets as they can diminish appetite and eat foods high in nutritional value. While fluids are important, drinking large quantities before or with meals can cause less consumption of more nutritious foods.

"I have trouble getting the food to my mouth." The simple act of eating can be difficult for some people, causing a decrease in nutritional intake. Arthritis, loss of strength or an illness often make holding utensils more difficult. Try using utensils with thick, soft foam-like handles, such as OXO Good Grips Utensils. The head of a fork and spoon can also be bent to the right or left if desired. Plates with sides may be helpful for people who have trouble getting food on their forks. Buying dishes with suction cup bottoms can keep plates from sliding away. There is also a large variety of drinkware that can make drinking easier.

"I have trouble chewing or swallowing." Chewing and swallowing problems can have a dramatic impact on nutritional status. Ill fitting dentures, missing teeth and mouth sores can make eating and drinking very difficult, and may cause people to limit the types of food that they choose. Often, a dentist can help alleviate or minimize these issues. A level two or mechanical soft diet, which contains chopped meats and soft foods, can be appropriate for people with these concerns. Those who suffer from dysphasia, defined as difficulty chewing and swallowing, often limit their eating choices and are afraid to eat due to coughing and aspiration. Refusing to eat, pocketing food, frequent throat clearing, taking a long time to eat and unexplained weight loss are some of the warning signs of dysphagia. A level one or pureed diet may be helpful for people with dysphagia. Refer to the Arbor Hospice website for more information on types of diets.

This blog post was written by Jill Gettle, Arbor Hospice Registered Dietician.

Breathing Changes During the Dying Process

There are a few different ways that breathing changes during the dying process. This is usually a later sign and indicates changes in the body's ability to regulate its most basic functions. These changes usually happen after the person who is dying has become less responsive and aware of what is happening.

One breathing pattern experienced by dying patients is often called the "death rattle." The death rattle is often caused by accumulation of lung secretions. This breathing pattern can be identified by:

• Shallow, irregular breathing with periods of no breathing (apnea) for five to 30 seconds or longer
• Noisy, rattling or gurgling breathing
• Panting type breaths

Most individuals experiencing this breathing pattern are comfortable and unaware of their surroundings or their noisy breathing. This type of breathing does not cause added suffering. The pattern of breathing will shift and change. You may notice irregular breaths with periods of no breathing. These pauses may last for longer periods of time. Breathing may become heavy and deeper or very shallow and quick. Silent, gasping movements of the mouth without taking in any air may happen in the last minutes of life. Often the last breaths are deep and sighing.

What You Can Do

If noisy breathing is upsetting to you or other family members, you can:

• Elevate the head of the bed
• Turn the person from side to side
• Avoid suctioning, which has little effect and will often cause more congestion
• Using a soft damp cloth wrapped around your finger, gently wipe the mouth of any secretions that accumulate
• Talk to your Arbor Hospice care team. There are medications available to help dry up some of the secretions and decrease the noise.

The Four Things That Matter Most

Please forgive me. I forgive you. Thank you. I love you.

Dr. Ira Byock, an expert on palliative care and end-of-life issues, offers these "four things that matter most" to patients and families in his clinical practice.

In an "On Being" interview with Krista Tippett, Byock noted that patients or family members often tell him that they don't know what to say to each other at the end of life or in the face of life-threatening challenges.

"If you're really stuck at any time, those four things are a nice way to start, whether you use them verbatim," he explains.

"No relationship is perfect and many relationships are troubled..." Tippett observed. "In a lot of families, there's going to be real work involved in being able to say those words and mean them..."

"I've wondered if there's something about being in that extreme moment of life, as you say, normal but ultimate, that creates an opening for some people to do that work, to say those words where it hasn't been possible in other points of the life span," she wondered.

"It shakes us free of the veneers, the layers of personality, of who we think we are, of protecting ourselves," Byock responded.

"You know when the times are that you can say those things most easily, when you've just slammed on the brakes and just narrowly missed getting killed and you're shaking like a leaf and you're in a cold sweat, and everything just almost ended. Pick up your cell phone. I'll tell you, it becomes really easy to call your spouse or your mother or father or your child and just say those things. You know, it just shakes us free."

To whom would you like to say one or more of the things "that matter most?" Resolve to do so sooner rather than later.

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Using Music to Facilitate Relaxation

We all know that the benefits of relaxation are numerous: reduced heart rate, reduced muscle tension, decreases in anxiety and stress, lower levels of cortisol in the body, among other benefits. However, the skill of relaxation is one that eludes many. I would like to suggest the implementation of music as a tool to help facilitate relaxation.

Meditation and relaxation are all about being "in the moment." Being in the moment means focusing
on events that are occurring presently, rather than thinking about past or future events. For example, one might choose to focus their attention on their breath. Paying attention to each inhalation and exhalation forces a person to be present and focusing on the current moment. Similarly, music can provide an external stimulus to take a person's mind off of their thoughts and worries. These two ideas can be combined if a person focuses on breathing in rhythm with a piece of music.

Music can be a very useful tool for helping a person relax but how do you choose the right music for relaxation?

1. Choose preferred music. Whether you are picking out music for your own relaxation or for a loved one, keep musical preferences in mind. Music with positive emotional associations and memories can provide an overwhelming sense of well-being for a person. This may e an old song from someone's childhood, slow classical music or new age music, among other options.
2. Pay attention to tempo. Be mindful of the tempo of the music that you choose. It should have a slow tempo. If a person is feeling particularly anxious or stressed when beginning to relax, they could choose music with a slightly faster tempo to match their emotional state, but the tempo should slow down throughout the piece. The principal of entrainment tells us that a person's natural biological rhythms will change to match the dominant stimulus present in their environment. This means that if a person is focusing on music, their heart rate and respiratory rate may change to match, or come close to, the tempo of the music.
3. Watch out for abrupt changes. Prior to using the music for relaxation, listen to the music to notice if there are any abrupt or unexpected changes. When a person's body and mind become more relaxed, an unexpected change in the tempo, timbre or quality of the music may reverse any positive effects that have occurred thus far.
4. Avoid music with words. While songs with words may offer that warm feeling of a positive memory, it is best to avoid words during relaxation as they engage our brain in cognition during an intended relaxation session. If you or your patient find the human voice soothing, choose music that uses words from an unfamiliar language. Look into classical vocal (choral or a soloist with instrumental accompaniment) music or Gregorian chant.

Remember these tips when choosing music for relaxation. Also remember that relaxation is a skill that must be practiced - it may not come easily the first time you try it.

What is Reiki?

Reiki is a Japanese massage technique for stress reduction and relaxation that also promotes healing. It is administered by "the laying on hands" and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive. If one's "life force energy" is low, then we are more likely to get sick or feel stress; if it's high, we are more capable of being happy and healthy.

A Reiki treatment feels like a wonderful glowing radiance that flows through and around you. Reiki treats the whole person including body, emotions, mind and spirit creating many beneficial effects that include relaxation and feelings of peace, security and well-being.

Reiki is a simple, natural and safe method of spiritual healing and self-improvement that everyone can use. It has been effective in helping virtually every known illness and always creates a beneficial effect. It also works in conjunction with all other medical or therapeutic techniques to relieve side effects and promote recovery.

Its use is not dependent on one's intellectual capacity or spiritual development and therefore is available to everyone. It has been successfully taught to thousands of people of all ages and backgrounds.

While Reiki is spiritual in nature, it is not a religion. It has no dogma, and there is nothing you must believe in order to learn and use Reiki. In fact, Reiki is not dependent on belief at all and will work whether you believe in it or not. Because Reiki comes from God, many people find that using Reiki puts them more in touch with the experience of their religion rather than only an intellectual concept of it.

Reiki can be used for hospice patients as an intervention to further promote comfort for patients and can provide reassurance in much the same manner as hand, back and foot massages. Reiki is a wonderful tool that can be used to assist patients into a state of relaxation and help alleviate pain.

This blog post was written by Michelle Chaves-Torres, Arbor Hospice Massage Therapist. You may contact Michelle by commenting below or emailing her at mchaves-torres@arborhospice.org.

Near Death Awareness

Near death awareness is a special communication of the dying. It usually occurs when individuals are approaching or are in the dying process. Most patients who have signs of near death awareness are more peaceful after the experience.

Signs of Near Death Awareness

People who are experiencing signs of near death awareness may:

• Appear confused or disoriented
• State that they have spoken to those who have already died
• Speak to people and see places not visible to you
• Describe spiritual beings and bright lights
• Talk aloud to people who have died before them, such as their mother, father or a close friend
• Make "out of character" statements, gestures or requests
• Describe another world of peace and beauty
• Tell you exactly when they will die
• Make hand gestures, reach for or hold unseen objects or wave to unseen beings

These behaviors do not mean that they are confused, hallucinating or having a reaction to their medications. It is believed that the person is beginning to transition from this life. The person may be trying to describe the dying experience or something they need to do before they die.

These messages of the dying may be symbolic communication to ask for permission to die or address a need. Some things they may need include resolving previous conflicts, receiving a visit from a friend, or knowing that you will be okay without them. What they say often has meaning to them and is linked between this life and death. For example, if they traveled a lot, they may say, "I need to pack my bags" or "I need to get on the plane." A patient who was a boater may talk about the tides. A rancher may describe his horse waiting to take him for a ride.

What You Can Do:

• Do not contradict, explain away, belittle or argue. These experiences can be very comforting to the individual.
• Be present with the person. Simply sit at their bedside and be open to their attempts to communicate.
• Listen attentively and sensitively and acknowledge the experiences.
• Ask gentle questions about what your loved one is saying or doing. Questions such as "who do you see?" "what are you seeing?" and "how does that make you feel?"
• Allow the person to share this experience with you.

When individuals experience near death awareness and describe death as peaceful, they are providing others with a better understanding of the death experience. This may be their final gift to you.

Journaling

Journaling is one way to express your thoughts, feelings and experiences through writing or audio taping. It is a safe, personal and private activity that may help individuals with serious illness or their caregivers release stress and clear their mind.

How to Journal

You do not have to be a writer to journal, and there are no right or wrong ways to journal. Journaling

is for you alone, so it is whatever you want it to be. Some suggestions for keeping a journal include:

• Keep paper and pen nearby. You can write in your journal everyday or whenever you feel the need to express yourself. Don't pressure yourself to write. The words will come to you when you are ready to release your feelings and clear your mind.
• Let your thoughts flow. Do not worry about grammar or punctuation. Remember, you are the only one reading your journal and it only needs to make sense to you.
• You can write on any paper, in a notebook, a diary, a journal and even on a napkin or the back of cards.
• You can draw pictures if writing is not your favorite activity. You don't have to be an artist.
• Remember that your journal is yours alone, a private expression of your thoughts and feelings. No one should read your journal without your invitation or permission.
• If you are unable to write or writing is not comfortable for you, you can record your thoughts and feelings on audiotape.

What You Can Journal

You can write about anything that is important to you. Some suggestions of things to include in your journal are:

• Feelings and emotions
• Fears
• Accomplishments
• Major events in your life
• Your life story
• Favorite memories
• Favorite pictures
• Your hopes
• Your dreams
• Daily experiences
• Relationships and what they mean to you
• Conflicts
• Poetry or favority quotes and what they mean to you
• Anything that is causing you physical, emotional and/or spiritual comfort or discomfort

Emotional and Spiritual Preparation for the End-of-Life

Dying is an emotional and spiritual journey. Each person involved may feel a wide range of emotions. You and the person facing the end of life may experience emotional and spiritual reactions as you prepare for death. The following feelings are normal reaction and part of that preparation process.

• Asking "why me?"
• Fear of being alone, dying or going to sleep
• Increased desire for physical affection or touch
• Increased desire to have loved ones close by followed by withdrawing from relationships
• Loss of interest in usual activities
• Feelings of embarrassment about being dependent on others and being a burden
• Feelings of denial, guilt or anger about changes, relationships or life
• Wanting to talk about the past
• Returning to religious practices or losing faith in religious beliefs
• Seeing or talking with dead loved ones
• Experiencing spiritual being or phenomenon such as angels, bright lights or visions

There are also many practical considerations which individuals and their families may face and feel a need to discuss including:

• Fear of not having enough financial resources, both by the dying person and family members
• Completing wills and estate planning
• Planning for cremation, burial and/or memorial service
• Planning for future care of children, pets or dependents

It is important to allow each person to talk openly and honestly about these feelings and issues. Talking about these issues may be important to finding comfort and peace. The Arbor Hospice care team is specially trained in these discussions and are available to help patients and families.

The Dying Process

It is common for patients, families and caregivers to have questions about the dying process. The Arbor Hospice care team does their best to help families understand what is happening. Yet, the dying process is different for each and every individual and the duration may vary from hours to days.

Some of the first changes caregivers notice include decreased appetite, increased weakness, withdrawal from family and friends and increased sleepiness. As death approaches, body functions continue to change.

When death is imminent, caregivers may begin noticing some physical and mental changes, including:

• There may be changes in responsiveness. Your loved one may be more difficult to arouse. Even if your loved one is not responding, please remember hearing may be very acute. Continue to communicate and comfort the patient by talking to them and gently touching them.
•  Usually, it is difficult to swallow near the end of life, and your loved one may refuse liquids and/or medications.
• There may be changes in urinary function, such as incontinence (loss of bladder control) or decrease in the amount of urine.
• A temperature elevation is not unusual at this time.
• Breathing may become more irregular, labored and noisy. This does not mean that your loved one is uncomfortable or in distress.
• Arms, hands, legs and feet may become cool to touch and may take on a bluish color. This is due to slowing of circulation.

Should any of these signs occur, contact your Arbor Hospice team. Arbor Hospice is available to patients and families 24 hours a day, seven days a week.

The Desire To Be Known

"As one gets older one's fear subsides. What becomes more and more important just to be known, known for all that you were during this brief stay. How sad it seems to me to leave this earth without those you love the most ever really knowing who you truly were." -The Bridges of Madison County

In the past three years, I have supported dozens of Arbor Hospice patients and their families in preserving patients' life stories on video and DVDs.

I have learned through those experiences that most of us have one fundamental thing in common as our lives near their end - we want to share what we have experienced and learned and to be known for who we uniquely are.

During the hour or two that it typically takes to record patient and family memories, patients share:

• Life events and memories that no one else in history has had or will ever duplicate;
• The simple but always profound wisdom that they have acquired over their lifetimes, no matter how long or brief life has been (the oldest patient was on the cusp of 101 and the youngest was 17); and
• Special messages of encouragement and support to children, grandchildren and other loved ones that will resonate across generations.

It is not necessary to wait until the end of life to reveal to others who we are. Use every opportunity that presents itself to reveal to your loved ones what you have experienced and what your life has taught you?

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

1,000 Weekends

A few years back, I read an article that said the average 63-year-old man had 20 or so years to live, a number of significance to me because I was 63 at the time.

I quickly calculated that I had about 1,000 weekends of life expectancy, a number that while quite substantial had a finiteness about it that caught my attention.

I realized that it was time for me to make some fundamental decisions about the quality of life I wanted to have during those thousand weekends, not to mention the other days of the week.

Rather than being depressing, this awareness sharpened by my focus on ensuring to the best of my ability that I use whatever time remained - however limited or long it may be - in ways that are aligned with my values and goals.

Being, not doing

Interestingly, my new-found appreciation of the finiteness of life did not lead me to list things I wanted to do (for instance, a "bucket list"), but rather to determine how I wanted to be. As a result, I found myself jotting down terms like these:

• Gratitude: I wanted to be conscious throughout the day of the many things for which I am thankful.
• Compassion: I wanted to be sensitive to the suffering of others and to do what I could to alleviate it.
• Learning: My life is most satisfying when I am intellectually challenged through activities that stretch my mind and expand my perspective.
• Contribution and service: I am happiest when I am more focused on others than on myself.
• Mindfulness: The everyday moments of my life contain many riches that I can only appreciate if I experience them one by one.

None of us, of course, no matter our age, know if we will enjoy the satisfactions of 1,000 weekends or even just one.

Pondering these things recently, I decided it was time to update my longevity status, so I used the Social Security "Actuarial Life Table" to determine that I had a life expectancy of about 15.5 more years, which means I have just over 800 weekends remaining.

The clock is clearly ticking, as it is for each of us. To mix metaphors, I can hear the bell tolling in the far distance, but hopefully not yet for me.

What are the implications for you of acknowledging at a deep level that your life is finite, whatever its length may be? Does it affect the way you choose to live today?

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.