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.

Anticipatory Grief

It is common for loved ones to begin feeling the effects of loss and grief before a death actually occurs. These are normal reactions to current and future losses. Losses can include those associated with caring for someone with an illness, changes in relationships, and the anticipated loss of a loved one. This anticipatory grief may actually help you prepare for the losses and decrease the intensity of grief after the death occurs.

Causes of Anticipatory Grief
Some of the causes of anticipatory grief are related to fears and actual or possible losses, such as:

• Loss of social life
• Loss of companionship
• Loss of usual eating, sleep, work, and recreational habits
• Loss of independence
• Loss of control, such as, being able to care for yourself or a loved one
• Fears related to life without your loved one
• Fear of losing present family structure, such as head of household, the family matriarch, or frequency of visits from family members
• Fear of starting over 
• Fear of the unknown

Signs and Symptoms of Anticipatory Grief
It is normal to experience recurring or combinations of signs and symptoms of anticipatory grief. Some of the signs and symptoms of anticipatory grief may include the following:

• Feelings of guilt
• Tearfulness 
• Constant changes in emotions 
• Anger 
• Depression 
• Feelings of emotional numbness 
• Anxiety or feelings of fear 
• Changes in sleeping and eating habits 
• Poor concentration 
• Forgetfulness or poor memory 
• Loneliness 
• Denial 
• Acceptance 
• Fatigue

What You Can Do
There are things you can do which may be helpful for working through the anticipatory grief process. Some suggestions may include:

• Go for short walks when possible
• Write in a journal
• Plan for the future
• Seek spiritual assistance if needed
• Talk to someone such as friends, family, or clergy. 
• Make changes only as needed but put off major decisions when possible
• Do the things you want to do now. Forget the chores that you can do later. 
• Spend time with your loved one, friends, support group and family
• Seek help from your family, friends, and/or a hospice volunteer to arrange some time to spend doing things you enjoy
• Call your Arbor Hospice team if anticipatory grief feels overwhelming or you want to talk about your feelings
• Attend a caregiver support group

Sometimes it may feel that the grief process will not end as you experience loss. Please feel free to call Arbor Hospice's grief support services with any questions or concerns. You are not alone.

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.

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.

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.

Songwriting With Patients

Songwriting is an intervention used by music therapists in many different settings. In hospice, songwriting can be a beneficial tool to address a vareity of patient needs. This intervention can be shaped and changed to be successful for many patients, regardless of their cognitive abilities or their willingness to be open and expressive.

For patients whose cognition is compromised, a music therapist may use songwriting as a success-oriented intervention to increase interaction and reminiscence. For example:

"This train is bound for (location), this train.
This train is bound for (location), this train.
This train is bound for (location), and (patient's name) is going to bring (item).
This train is bound for (location), this train."

In this example, the music therapist would encourage the patient to choose a location to which they would like to travel, or have enjoyed traveling in the past. The patient would then identify some items (favorite book, favorite drink, favorite snack) or even a special person to bring on the make-believe trip. This intervention can continue as long as the patient can still come up with ideas for a trip and things to bring along.

When working with a patient who is higher functioning, but has difficulty expressing themselves, a fill-in-the-blank songwriting experience can be very useful for eliciting expression, reminiscence and interaction. A music therapist may omit words from an existing song, such as "lean on me" or "sometimes in our lives."

"We _______________________________________
We ________________________________________
But if we ____________________________________
We know that _________________________________"

In this example, a patient can benefit from the structure of a pre-existing song to develop their own thoughts and feelings. This, like the previous example, is very success-oriented to help the patient have a sense of accomplishment and enjoyment.

Finally, occasionally, a patient may enjoy talking about a certain subject during every visit. Discussing this topic may bring this patient a sense of joy, pride or contentment. In this case, the patient demonstrates facility with self-expression and may benefit from a less structured form of songwriting. In this case, the music therapist would work with the patient to devise original song lyrics, and possibly even a chord structure, rhythm and overall style of song. This song would be a unique product of the patient, and a great source of pride and accomplishment.

Songwriting can be a useful intervention with hospice patients. For patients who wish to leave a legacy or a gift for their families, a unique and original song may be a treasured item after the passing of the patient. Additionally, music is a powerful tool to elicit socialization and reminiscence, increasing the quality of life of the patient with whom the music therapist is working.

Music Therapy for Depressive Symptoms

Music therapy can be an effective method for addressing depressive symptoms among hospice patients. Music can be prescriptively applied for patients in various ways to address physical, emotional and biological markers of stress, anxiety and depression.

In music therapy studies, researchers have noted that the use of music can result in cerebral blood flow changes in brain structures that are associated with reward and motivation. These researchers also noticed in opioid-mediated reward and pain relief. These studies illustrate that music, especially music with highly positive associations, can activate areas of the brain that help a person feel reward and motivation.

Additionally, music can be used to address pain and anxiety, which may impact a patient's perception

of their overall situation and can, in fact, address depressive symptoms. Music is strongly associated with emotion and memory, thus providing many opportunities for patients to engage in emotional expression and reminiscence to improve their overall quality of life. Music can promote relaxation and a sense of well-being.

Many of hospice patients may be participating in fewer pleasurable activities. This could be due to physical limitations preventing them from participating in activities, or it could be more related to a mood disturbance. In either case, music therapy interventions can be applied to help promote feelings of pleasure, autonomy and success through instrument playing, singing, reminiscence or songwriting. Additionally, helping patients find new hobbies and activities to take part in as their functioning declines can be useful to stave off depressive symptoms. Listening to, and learning about music can be a fun new hobby for patients who may be bedridden but still in need of cognitive stimulation.

Patients experiencing feelings of worthlessness or guilt may be engaging in self-criticism or an exaggerated sense of responsibility for a negative event in their life. They may be grieving about their loss of independence or guilt for putting a burden on their family. These feelings are common, and can be addressed through positive feedback, and successful music therapy experiences. If a patient is able, they may benefit from music and movement techniques, but they would also have opportunities for self-expression, and gaining a sense of well-being through instrument playing, songwriting and music-facilitated relaxation techniques.

Finally, if patients are withdrawing from interpersonal interactions with family and friends, they may benefit greatly from music therapy interventions that stimulate social participation. Music is a naturally social medium. Bringing a group of people together to sing and make music can increase cohesion and encourage socialization. Additionally, music can be a great starting point for storytelling and reminiscence. Whether there is family members or other residents of a facility nearby, isolated patients may benefit from being engage in music-making with others.

The Many Benefits of Hospice

I hear so many stories of how hospice makes a positive difference in the lives of families throughout the year. As both Passover and Easter were celebrated in the past week, I want to focus on the gift of support that hospice services provide families.

Not too long ago, I was stopped in a restaurant by a wait staff when my name badge was noticed. She shared the story of how Arbor Hospice helped her grandmother experience her high school graduation wish come true. This personal experience brought a smile to my face and tears to both of our eyes. Our care team had accomplished what the grandmother had wanted - to live each day to the fullest and be alive to witness her grandduaghter's graduation.

Another community member shared her experience with Arbor Hospice in relating that there was so much support for her and her siblings in the week that their mother was receiving services. She said it was almost more important for her siblings and herself to receive the support to figure out how to go on without their mom, and to know that their mom was not in pain anymore. The value of the emotional and spiritual support provided by the hospice team, the planning for the future for the grandchildren and the grief support services during the year afterward, was amazing.

It strikes me that this is truly the value of hospice that sometimes doesn't receive recognition. Of course, there is the obvious value of pain and symptom management services to the patient, and the cessation of countless trips to the emergency room and hospital, which at some point, does not improve a person's quality of life and can actually be counterproductive.

The true value of hospice can be found in the wrap-around services for the entire family, preparing them for the loss of their beloved, and helping them during their grief journey. The earlier hospice can interact with the patient and family, the better prepared we can help the family face the loss. I hope this is a new lesson we can all learn during this season of hope and renewal.

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

Choose Hospice Care To Improve Quality of Life And Perhaps Even Extend It

Dr. Ira Byock, an expert on palliative care and end-of-life issues, recounts his first hospice referral decades ago:

"I called up the hospice of St. Agnes, and it was the first time anybody from this medical center, the county hospital, had tried to make a referral. You know, hospice was a countercultural movement at the time, Krista. It was a social movement often by nurses and others, but very few doctors, in response to people dying badly, often dying in pain, often in hospitals, too often alone. It has grown up and now been incorporated back into sort of the corpus of medicine, but its roots have been as a countercultural response. And we've made a big difference, though we're by no means done."

Important progress has been made in recent years, as Byock notes, but his observation that "we're by no means done" is also significant.

In many ways, hospice continues to feel countercultural, at least to many doctors and their patients.

Far too many terminally ill patients and their families remain unaware of hospice services or come to those services too late to achieve their full value.

Referral to hospice, in the eyes of some doctors and patients, means giving up rather than improving the quality of life, and in some cases even extending it.

That means that some patients and their families endure needless suffering as futile and expensive health procedures are employed in the face of the inevitable.

As a hospice volunteer, I have talked with patients who told me that their doctors actively opposed hospice care even when the consensus of medical opinion was that they had at best months to live.

There are two reasons why it is important to begin hospice care early rather than in the final days or hours of life:

1. Hospice care enables a higher quality of life. Palliative medical care addresses pain and other symptoms. The hospice interdisciplinary team supports the patient and family in addressing the physical, emotional and spiritual aspects of the illness, the dying process and grieving.

2. In some cases, hospice may enable a longer life as well as a better one. A combination of palliative and interdisciplinary care can extend life as well as enrich it.

What benefits have you or loved ones experienced because of hospice care?

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

The Pain of Deception....

"What tormented Ivan Ilyich most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and he only need quiet and undergo a treatment and then something very good would result...

This deception tortured him - their not wishing to admit what they all knew and what he knew, but wanting to lie to him concerning his terrible condition, and wishing and forcing him to participate in that lie." - The Death of Ivan Ilyich

When I was young, many aspects of illness and dying were kept secret, not because it was thought necessary to shield children from life's unpleasantness, but because society struggled even more than today with acknowledging the inevitability of sickness and death.

A disease such as cancer, back in the 1950s, was more like a sham
eful family secret to be whispered among relatives and friends than a medical condition.

In recent decades, though, through the efforts of hospice and other health care providers, the subjects of death and dying are opening discussed on television and around dinner tables. Those who are ill, and those who are not, talk with loved ones about what they want at the end of their lives and prepare advanced care directives.

As a result, needless suffering for those at the end of life and their families has been significantly reduced.

Which means that this is not only an opportune time to live, but also in which we are more likely to die with the dignity and respect that is our due.

What is your experience with open and honest conversations about illness and death with family members and other loved ones?

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

Learning To Touch

In an earlier post, I introduced you to my hospice experience with my Mom and promised I'd let you in on some of the lessons I learned. Here's the first lesson:

I was not born into a touchy-feely family. As a child, I remember being rather jealous of my friends who were. Fast forward a few decades and I'm more than happy to give or receive a hug or hold a hand. Believing touch is a pleasant and essential human need, it stands to reason that I faced a bit of a dilemma as my Mom approached the end of her life. Could I, dare I practice the art of touch with her? How would I feel if she resisted? Could I swallow my own pride andlearn to touch her with care, compassion and love in whatever time we had left? Why yes, yes, I could! You see, one of the lessons I learned is that death has a profound way of giving us gifts we may not have accepted in life.

A hairbrush on a bedside table called my name and I began to slowly brush Mom's silvery silken hair. Unfocused eyes struggled to meet mine as she leaned into the gentle strokes. I was mesmerized and I was forever changed. My gift had been accepted and I took the breath I didn't realize I had been holding, grateful beyond words. For the last two weeks of Mom's life, I held or stroked her hands, placed cool rags on her forehead and brushed her hair with her own antique brush set brought from home. My touch was never rebuffed, always welcomed, and oh-so-healing for both of us.

Years later, my brother told me he wished he could hold Dad's hands as Dad neared the end of his life, but was too afraid. The gist of my little-sister-rant was "do it!" My brother was met with a similar result; his gift of touch was accepted and became a gift back to him.

What unexpected gifts have you found in your loved one's final weeks, days or hours?

This blog entry was written by Laura Adams, Administrative Assistant to The Arbor Hospice Foundation. You may contact Laura by commenting below or emailing her at ladams@arborhospice.org.

Breaking Down the Wall

I approached an Arbor Hospice patient residing in a nursing home cheerfully and asked if she'd like to pet Alpine, Arbor Hospice's therapy dog. She stared straight ahead, lips tightly pursed, stone-faced. No response. I asked again. She turned her dagger-filled eyes and looked into my eyes as she shot these words at me, "I am dying! And you want me to care about THIS?"

Alpine and I are impervious to occasional rejection. Some people don't like dogs, some are afraid and others are simply not in the mood for us that day. But we have never had someone angrily lash out at us.

I was shocked and shaken on the inside. I calmly said, "Okay, we'll go." I turned and walked away - but I only took a few steps.

With no conscious plan, I turned around and went to her side, incapable of walking away with those words hanging in the air. I placed Alpine behind the chair, out of the woman's sight. I don't remember what I said as I put my arm around her shoulders. I do remember that I said something I hoped would break through the wall of anger behind which she appeared to be painfully isolated and alone.

She began, "I can't go anywhere or do anything!"

We sat in silence, partly because I didn't know what to say, partly because I knew full well nothing I said would free her from that truth.

Eventually, I said, "You sound like you're feeling very angry about that."

"Yes, some," she said, the energy drained from her voice.

"And sad?" I asked.

"Yes." She looked up from her wheelchair.

"I'd probably feel angry and sad too," I said.

I put both arms around her and held her. She said, "thank you, love." This shocked me as much as when she lashed out earlier. She repeated those words two more times, "thank you, love." I told her, "I heard your pain and could not walk away from you."

When it was time to leave, I said, "You're a sweet lady." She looked at me and her face softened. I jokingly said, "You really ought to let more people know that!" She smiled the most mischievous grin, as though that was our little secret.

It was the first time I walked away from a patient and the tears flowed.

That's the hospice concept of care - providing comfort and peace for the whole person, physically, spiritually and emotionally.

This blog entry was written by Helen Buccella-Costa, Arbor Hospice Volunteer. You may contact Helen by commenting below or emailing her at hcosta@arborhospice.org.

Five Myths About Hospice

End-of-life isn't about the dying process. It's about providing comfort and support for patients and families. Hospice and palliative (comfort) care gives patients a chance to live their life to the fullest, pain free in a comfortable setting. Hospice focuses on caring, not curing.

Myth 1: Choosing hospice means I'm giving up hope.

First and foremost, hospice should never be viewed as "giving up." When a cure is no longer possible, Arbor Hospice provides the type of care most people say they want at the end of life - comfort and quality of life. The most common statement made by families who chose Arbor Hospice for their loved one is "we wish we had known about Arbor Hospice sooner."

Myth 2: I want to care for my loved one at home, not in a hospice.

Hospice is not a place, but a philosophy of care. The majority of Arbor Hospice patients receive care in their own home, where they are surrounded by family and familiar settings. Home could be a private home, nursing home or assisted living facility - wherever the person lives and considers home. The Residence of Arbor Hospice is available for individuals who may need additional support or who wish to reside in a residential hospice.

Myth 3: The doctor suggested hospice; that must mean my loved one has a few days left to live.

Hospice care is available to anyone who has a life-threatening or terminal illness and has a prognosis of six months or less if the illness runs its normal course. Hospice should be considered if treatment will no longer cure the disease or the patient is no longer seeking curative treatments. Arbor Hospice will ensure pain and symptoms are managed throughout the end of life journey.

Myth 4: Hospice care is only for the elderly or those diagnosed with cancer.

Hospice programs have developed guidelines to care for anyone, at any age, facing a life-threatening or terminal illness. With Arbor Hospice, individuals at any age have the chance to complete their lives with dignity, in comfort and at peace.

Myth 5: High-quality end-of-life care is expensive.

Hospice is fully covered by Medicare, Medicaid and most private insurances. If a person does not have coverage through Medicare, Medicaid or a private insurance company, Arbor Hospice will work with the person and their family to ensure services can be provided. Regardless of someone's ability to pay, Arbor Hospice believe everyone should have an opportunity for a comfortable and dignified end-of-life journey.

What other hospice myths are you aware of?

The Hardest Question

The family dropped by The Residence of Arbor Hospice unexpectedly instead of setting up an appointment, which is the preferred course. So, out of desperation, they tried my line. "I'll do it," I enthused looking for an excuse to leave my computer and interact with family members.

Introducing myself to the team of five, I learned they were all visiting from out of town. Looking exhausted as families so often do by the time I meet them; California, Colorado, Washington, they were all here from somewhere else trying to do the right thing for their sister. "I can't care for her at home any longer," confessed the daughter, who was doing her best but needed support. Two days of meetings with the oncologist, the internist, the surgeon, had left them spent and bewildered. What was the right thing to do?

After the tour, I responded to a few questions, "do you have physical therapy and occupational therapy," asked one. No, I explained that our focus was on comfort care and that if rehabilitation was needed, their sister/mother would be better off in a skilled nursing facility.

When all their questions were answered to the best of my ability, I asked the stumper question. It's the question I've come to learn that stops them cold. I have only met one family who could answer it right away.

"What's important to your sister from this day forward? If she can't be cured, how does she want to spend the remainder of her life?" It is my experience that these are the questions that often don't get asked during the frantic encounters with our medical system. These questions and many like them, are asked of patients and families when a loved on is enrolled in hospice and then the hospice team works to make it happen.

"Well, she likes baths; do you have a place for a bath?" I showed her the spa room with a large jacuzzi-type tub. "She lives on the water and loves looking out on the water." I showed the pond and the beautiful gardens. "She'd like this," remarked the daughter.

I have found that when we focus on what the dying person wants, by giving them a voice, the patient and their family is energized. The mood changes from doom and gloom to one of possibilities. There is an immediate shift in energy.

So, what about you, do you know what you want at the end of your life? Here are my top three wishes:

1. I'd like to be outdoors when I die, preferably under a tree with the sunlight on my face (unless it's  
    winter of course, then I'd like to be by a sunny window).

2. I too love baths, with lots of bubbles, please.

3. Funny YouTube videos like Ellen DeGeneres - Here and Now should be playing and if we laugh
    too hard, please play some Carol King and the Beatles.

This blog entry was written by Margaret Adrain, Arbor Hospice Vice President of Marketing and Business Development. You can contact Margaret by commenting below or emailing her at madrain@arborhospice.org.
 

Hospice is Palliative Care And More

"May you live all the days of your life." - Jonathan Swift

I knew a man who entered hospice care after a long courageous struggle with an unrelenting disease.

Some of his friends, he told me, protested his decision, wondering why he would choose hospice when he seemed so "healthy," particularly when compared with how he felt during the various treatments that had extended his life by several years. To them, it seemed he had given up the battle, that he had given up on life.

The man explained to his friends that he hoped to live many more months and that it was important to him to form trusting relationships with the hospice staff - the nurses, social workers, chaplains and volunteers - who he anticipated would become a progressively larger part of his life in the weeks ahead.

While he didn't think of himself as a religious man, during his final months, he welcomed conversations about life's meaning and about what he hoped for in the final days and hours of his life.

Once, I told him that I admired his forthrightness and courage, and that I appreciated what he was teaching me about how I might someday face my own death.

After I spoke, we sat quietly for a moment. Then he smiled, a man who had spent his long professional career serving others, acknowledging that he had done so once again.

This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@arborhospice.org.

Caregivers Can Easily Give Loved Ones A Simple Hand Massage

Touch has often been called the universal language of the heart. For individuals with a serious illness, touch, in the form of massage, reduces stress, anxiety and discomfort.

The elderly often have impaired hearing, visual acuity, mobility and vitality problems that can make someone feel isolated, helpless and vulnerable. Through the emotional involvement of touch, caregivers can reach through isolation and communicate love, trust, affection, security and warmth.

Massage can also help caregivers who are faced with managing behavior and guiding a person who may be confused or agitated. Touch is one of our most basic human needs and remains constant throughout life. Elders with dementia or other serious illness are often deprived of nurturing touch and meaningful physical closeness. Caring touch is necessary to bring about a sense of well-being and security.

Since touching someone's hand is so familiar, anyone can give a simple hand massage without causing further confusion or agitation. Here's a process anyone can use to give a hand massage:

1. Take your left hand and using the space between your pinky and ring finger, lodge it between the other person's pinky and ring finger on their left hand, resting your thumb on their palm.
2. Take your right hand and using the space between your pinky and ring finger, lodge it between the other person's index finger and thumb on their left hand, resting your other thumb on their palm.
3. Gently use your thumbs to put pressure on the other person's palm.
4. Massage according to the direction of blood vessels and towards the heart. Apply light pressure for general safety and to ensure comfort.
5. Gently rub from the base of each finger to the tip.
6. Gently squeeze the skin between the person's thumb and index finger to loosen up any tightness.
7. Switch hands.

This blog entry 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.

We Become More Of Who We Are As We Are Dying

"We become more of who we are as we are dying," I heard Teri Turner, Director of Home Hospice Services at Arbor Hospice say in a presentation at a state symposium for hospice volunteers and staff.

I wasn't sure what that meant, and I wondered if that observation precludes the growth and learning that I thought I observed in patients I spent time with as a volunteer. Or, were they simply becoming more of who they already were?

 So, at my first opportunity, I put that question to Teri.

"This is not an original thought on my part," she told me. "It's more of an observation as I have spent time with people who are dying. I see those who are dying become more of their essential core. The things that are really important become even more important, and the trivial things fall away."

I asked Teri for an example.

"Dying patients who previously had been very busy in their day-to-day lives may let those activities fall away."

As a result, she said, "It is sometimes hard for family members who want to tell patients about events of their days and what family members are up to are met with disinterest. The patients are now focusing on other things."

"The focus at the end of life is on the quality of life, not the quantity of experiences or material things that now seem trivial."

What does it mean "to become more of who we are?" I wondered.

"My basic theory is that people die pretty much like they lived," Teri said. "If you have been a difficult person all your life, you are probably not going to turn into an angelic presence. If you've been a pretty nice person much of your life, you will probably be that way as you are dying."

"Sometimes, though, people who have been very intense or demanding are able to let much of that go and become calmer, almost totally different people."

That lead me to ask Teri if she believed that learning and change were possible in the last months and weeks of life.

"I think there's always room for growth at the end of life," Teri said.

"In some ways, it is a gift to know that we are dying. It makes it possible to pay attention to things that we may have neglected, to mend fences, to see things in ways we couldn't before."

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

Holding My Breath...

I was aware that I was holding my breath. The middle-aged daughter of the hospice patient had just asked an important question, and I suspected that she did not know the answer.

Although I was seated behind a video camera just a few feet away from the daughter and the patient, who was on the cusp of entering her tenth decade of life, I had become invisible to them as they engaged in a conversation about Mary's (as I shall call the patient) life.

Over the past hour, they had discussed Mary's parents and siblings. She told her daughter about the death of her father, which required that they move in with other family members during difficult financial times.

They talked about how children and teenagers entertained themselves during the Great Depression, about what dating was like during the 1930s and 40s.

Mary recounted life in Detroit during World War II and what it was like when family members and other veterans returned home.

"I haven't thought about some of these things in such a long time," Mary concluded. "It was such a different world."

As the conversation neared its end, the daughter asked Mary how she wanted to be remembered.

"As a loving mother," Mary said.

What life lessons did Mary wish to share with her grandchildren, the daughter wondered? That's when I found myself holding my breath.

After a moment's hesitation, Mary said, "I've come to the conclusion that you had better show kids how to live by living that way yourself and then talking about it. You say, 'That isn't the way we do it in our household, this is the way we do it.' There will be no lies in our family. You always tell the truth."

What life lessons do you offer to family members and friends?

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

What Will Your Legacy Be?

"You are doing this not only for your children and grandchildren," I explain to Arbor Hospice patients and their families as we begin to plan a video of the patients' life stories. "This video," I say, "is for generations not yet born, those who will follow you but will never know you personally."

During the videotapping, patients and their families typically describe the events of their lives - when and where they were born, the births of siblings, memories of grandparents and parents, and so on.

But patients also often tell stories that illuminate their legacies - stories, for instance, about the challenges they faced and the lessons they learned that offer wisdom and guidance to future generations.

What is usually revealed in these stories is that our legacies are shaped through an accumulation of daily actions, particularly those that contribute to the quality of the lives of others.

At any point in our lives we can affect our legacies by:

• Reflecting on our values and important goals and making adjustments when appropriate
• Preparing a written "legacy statement" explaining the values and personal qualities we want to demonstrate in our daily lives
• Determining the extent to which our daily words and actions match those values and goals and making necessary changes.

By reflecting on the nature of the legacy we desire to leave and by taking deliberate steps to cultivate the qualities that will produce that legacy, we are likely to look back at the end of our lives with a sense of satisfaction and completeness.

The accumulated effects of these actions across a lifetime will be the source of the wisdom we share with those we love and those who follow us whom we shall never meet.

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