The Healing Nature of Music

“Somewhere out in the darkness the phoenix was singing in a way Harry had never heard before; a stricken lament of terrible beauty. […] Harry felt, as he had felt about the Phoenix song before, that the music was inside him, not without … How long they stood there, listening, he did not know, nor why it seemed to ease their pain a little to listen… […] They all fell silent. Fawkes’s lament was still echoing over the dark grounds outside.” —J.K. Rowling.

In the sixth book of the Harry Potter Series, “The Half-Blood Prince,” there is a scene in which Harry’s mentor and guardian Albus Dumbledore dies at the hand of Severus Snape.  It is a moving and powerful scene for many reasons critical to the arc of the story including Dumbledore’s magical Phoenix, Fawkes, crying a haunting lament at the death of the great wizard. Such a painful moment in Harry’s life needed the healing balm of Fawkes’ music.  Harry had suffered so much loss, and now with the death of his mentor and friend, he wondered how he could go.

Often a song or a melody can act as a key to unlock a memory or a moment in the grieving person allowing the life of a deceased loved one to flood back into consciousness in a unique way.  In a recent workshop on the healing nature of music the facilitator played a song requested by one of the grieving participants, a young woman whose father had died as a patient on our hospice program. The daughter shared that she had not been ready “till that moment” to truly feel the enormity of the absence of her dad. The melody and lyrics took the grieving daughter to a place, which, before that moment, was locked away. She left the session that evening more capable to engage the hard work of grief, knowing at a deeper level that healing could be possible.

At our annual Hospice Memorial Service family members join with hospice staff and volunteers to honor and remember the lives of our deceased patients in a service of readings, reflections and music. Music provides a pivotal component of the healing energy of that service.  This year young musicians from The Juilliard School, Vocalists from The City Bar Chorus, and The female a cappella Threshold Choir will present a variety of vocal and instrumental selections which promise to bring a profound element of healing ingredient to those attending the service.

I encourage you to connect with music that can offer you solace and bring you to a place of healing and remembrance. The following suggestions from psychologist and hospice music therapist Paula Marie Jones can provide a starting place to use music in your journey of grief.

Listen to Music and Journal

Sit in a private space. Play the music that will help you feel your emotions and write about your feelings. Let it flow from you naturally and uncensored. If you want to take these writings and create a more refined form such as poetry, you can always edit later. The primary purpose of free-form writing is to release the intensity of your emotions from your body. You may choose to take these writings and destroy them since they have served the purpose of release. You may also consider writing a letter to express how you are feeling and what’s happening in your world.

Listen to Music to Connect to Your Loved One

Sit in a private space. Play the music that will help you feel connected to your loved one and have a “conversation” with them. “Talk” to them through your imagination or mind or just talk to them out loud. Once you have finished talking, be quiet and listen.

Listen to Music at the Grave site, Seashore or Place of Remembering

Go to the grave site, seashore, place of remembering or any inspiring location of your choice. Bring a blanket or chair and plan to stay for a while. Play the music that will help you feel connected to your loved one. You might have a “conversation” with them… maybe talk to them through your imagination/mind or even talk to them out loud. Talk to them through your writings. Once you have finished talking, be quiet and listen.

Listen to Music for Meditation or for Respite to Heal Your Body

Sit in a private space and close your eyes. Play the music that will help you imagine a nurturing, quiet place that calms your emotions and nervous system. Allow the music to soothe your mind and heart. Perhaps you might connect with your own personal Spiritual tradition.

Listen to Music for Gratitude and Celebration

Play the music that will help you create a healthy connection and remembrance of your loved one. Reflect on your memories about them and the ways you know them now. Celebrate and honor their presence in your life with gratitude.

A Hard Day, the Right Decision

Up until this blog entry, I have been writing about topics related to grief and loss surrounding the illness and death of my Dad in July 2010. Of late, I have been struggling with a painful turn of events relating to the care of my Mom, who is 92. In many respects, the pain and grief emanating from my father’s illness and death were easier to cope with than the story I am about to share. I share these details and the story beneath them to support other adult children or families struggling with a similar set of circumstances. You are not alone.

In the Fall of 2009, before Dad’s death, Mom was diagnosed with memory deficit/dementia, which according to her doctors is the terminology used to describe the early stages of Alzheimer’s disease. She has seen a neurologist several times a year to check on the disease’s progress. This physician has prescribed the maximum dosages of Aricept and Namenda. (These are Alzheimer’s drugs designed to slow the progress of the disease, but they cannot stop or reverse it.)

In addition, Mom has suffered from depression for some time and is currently taking a low-level anti-depressant. Since September 2009, all of Mom’s doctors have made it clear to us that she cannot be alone, and as a result, we arranged that she be assisted 24/7 by a live-in aide.

My Mom has always been a very social person, thriving in situations where she could be interacting with others. Since my dad’s death almost 10 months ago, Mom has stopped cooking (something that always brought her joy and pride), her personal hygiene is minimal (she depends on her aide to remind and then assist her in bathing) and she continues to isolate herself more and more. It is not for lack of opportunity that Mom does not go out. My wife visits 4-5 times per week. We encourage and invite her to join us for church to hear our children sing; 9 times out of 10 she calls us that morning to cancel. She goes weeks without going to the hairdresser, often canceling the day before in anticipation of not feeling well enough to go out the next day. My very social mother was locking herself away; going over a week at a time without venturing beyond the walls of her small condo, not even to the downstairs of the building to retrieve her mail. When we are able to get her out for absolutely necessary doctor visits, we actually had to “trick” her into shopping trips. She stopped shopping for herself for clothing and uses safety pins to keep her pants up since her weight loss last year. This from a woman who truly loved to “take inventory” at her favorite stores and was always aware of the latest fashion.

The combination of depression and grief has advanced Mom’s memory impairment. Her conversation is increasingly repetitive and confused. While confident talking about stories in the past, she often uses generalities to cover for information she is less sure of. Last Tuesday during a physical assessment her doctor asked Mom some simple questions. When asked what year it is, she answered 2005; she did not know what month it is. She continues to recognize all of us, but usually calls her current aide by the previous aide’s name. When talking to others about her husband’s death, she relates that it happened as recently as the week before.

After much time, thought, research and emotional energy, my wife and I chose an assisted-living facility very close to her current home and ours. It is a beautiful residence very unlike any nursing facility I’ve seen. It offers increasing levels of skilled care as residents require it and contains a portion dedicated to the care of residents with Alzheimer’s disease, for when and if she requires such a level of care. The staff is competent and generous and has designed a program and living environment within which residents can be engaged and stimulated socially, intellectually, emotionally and spiritually. Meals are taken in common with table-mates set up according to compatible personalities, common interests and preferences. Residents are encouraged and expected to participate in activities with little time necessary to be spent alone in the personal living space. For all practical purposes, this new home seemed to be an answer to our deepest desires that Mom regain a deeper quality of life and reconnect with some of the social person that she has always been.

We took my mom to visit last week and showed her the entire place, including a choice of rooms she would reside in. She thought it was lovely and agreed to try it. Once the decision was made we acted quickly to maximize the benefit to Mom. In a matter of days, we arranged for her to move and contracted with movers to take significant furniture to beautify her new living space, which consists of a large living room, spacious bedroom and ample bathroom.

The transition and outcome were extremely difficult. We knew there would be resistance, but it came at a level unlike we had anticipated. On the day of the move, it took over an hour to get Mom out of bed, and almost four hours until she was in the car leaving her condo. She had no recollection of ever having visited her new residence, even though it was less than 72 hours earlier.  She had no memory of agreeing to try the new location and began to accuse us of “putting her away.”

In the week or so since she has moved to her new residence, Mom has been very resistant and angry towards us. She calls my home as many as 25-30 times per day. (In the first 36 hours she called almost 100 times.) We have been in touch with staff and see for ourselves that she is often actively participating, smiling and laughing, but she continues to insist that she hates it. She reiterates that we have put her away in an old-age home, and intimates that if we truly loved her we would not have “done this to her.” She can admit that the staff and some residents are lovely and even that the food is good, but insists she “doesn’t belong there.”

There are many layers to the struggles indicated above. Most obvious is the emotional tsunami afflicting my mother. She is the one experiencing psychological and emotional upheaval. Yet closely tied to her experience is the roller-coaster of feelings and the questions that arise as I analyze motivations and outcomes associated with making such a decision.

For those of my readers faced with such a decision one thing is certain: focus on the outcome. In this situation the only criteria is: What will best improve the quality of life for my Parent? When holding the responsibility associated with being Power of Attorney and Health Care Proxy for our parent(s), it’s difficult not to be swayed by feelings of guilt or other emotions that may cloud our judgement regarding what may be the best and only decision. It’s easy to write such a sentence in this blog, but it is very difficult to be in the moment, being buffeted by the opinions of others. There have been significant reprisals from the family balanced with gracious support from less expected places. Relish support from any person or place and disregard those who are unsupportive, even if they are family. Try to remain focused on what will be the best outcome for your parent.

Care for a parent is not a committee decision. The responsibility ultimately falls to the one who holds power of attorney. While you should garner input from “emotional stakeholders,” you should then move forward with the best decision you can make, even if it is not unanimously supported. As the Alzheimer’s Association warns, beware of guilt. Guilt can be related to:

• Thinking you could have done something differently.
• Being able to enjoy life while your loved one may not.
• Feelings that you have failed, especially if your loved one has been placed in a nursing home.
• Negative thoughts about the person with the disease — wishing that their suffering would come to an end.
• Conflicts with family members because they are uninvolved or critical of the care that’s being provided.

On the day of her move, we kept reiterating to my mother that we felt she had put herself away by isolating herself in her condo and crying for hours each day. We lovingly told her that we hoped with this move she could be more a part of our lives as she once was. As we drove her to her new home, she let these words slip out: “Maybe things could be better.” Though this transition continues to be a very difficult one for all of us, we try each day to remain focused on this hope, this potential outcome — that things could be better.

I will add to this story in the hope that my first-hand experience will provide some support to any readers undergoing a similar family struggle.

Please check out the links below for practical suggestions related to caring for elderly parents from the Alzheimer’s Association and “ParentGiving.”

http://www.alz.org

http://www.parentgiving.com/elder-care/experts

Celebrating First Anniversaries

I could never forget my Dad’s birthday, January 25th, exactly one month after Christmas. Every year I looked forward to it; this year, not so much. My father had died on July 27th.

 

I’ve said to myself: “Be realistic.”  On January 25th, I was in an all-day training for work; I was to be home in time to vote on an important local school board referendum; the President was giving the State of the Union speech; and the metro area was anticipating yet another winter storm. Isn’t that enough to keep me busy? Must I mark my Dad’s birthday? The larger question is, “do I want to?” And if I do, how should I mark it — privately, publicly, with my Mom, with my family?

 

The truth is, there is no correct answer to how a grieving person should mark the first “something” without their loved one. Yet my suggestion to our readers who are grieving is to “mark it” somehow. If you are grieving the death of a loved one you know there is no escaping the roller coaster of emotions that goes with the terrain of grief. Those feelings and grief reactions are there because the person who died had meaning in your life. So then, assess for yourself what you can handle, plan it and try to commemorate the day. If it goes the way you planned, great; if it turns out to be too painful, accept it and acknowledge that you did your best. This is no time for guilt!

 

Here are some suggestions:

• Spend 10 minutes alone with a photo of your loved one in a quiet place;
• Go out with family or a friend and enjoy a favorite food of the person who died;
• Have a birthday dinner complete with a cake to sing “Happy Birthday” to your loved one. (At our Christmas dinner my children asked to have a picture of my Dad with them on their “kid’s table.”)
• My grief is unique. My experience will be influenced by the type of relationship I had with my father, the circumstances surrounding his death, my support system and my cultural and religious background. As a result, I will grieve in my own way and in my own time. It’s best that I don’t try to compare my experience with that of other people, or make assumptions about how long my grief should last.  Taking a “one-day-at-a-time” approach that allows me to grieve at my own pace is my best advice to myself and others grieving a loss.
• Seek out people who acknowledge your loss and will listen as you openly express your grief. Avoid people who try to judge your feelings or worse yet, try to take them away from you.
• Sharing your pain with others will not make it disappear, but it will, over time, make it more bearable. Reaching out for help connects you to other people and strengthens the bonds of love that make life seem worth living again.
• Your feelings of loss and sadness will probably leave you fatigued. Your ability to think clearly and make decisions may be impaired. Your low energy level may naturally slow you down.
• Respect what your body and mind are telling you. Nurture yourself. Get enough rest. Eat balanced meals. Lighten your schedule as much as possible.
• Allow yourself to “dose” your grief; do not force yourself to think about and respond to the death every moment of every day. Yes, you must mourn if you are to heal, but you must also live.

 

Paul Irion, a well-regarded bereavement professional, writes:

“A death has occurred and everything is changed. We are painfully aware that life can never be the same again, that yesterday is over, that relationships once rich have ended. But there is another way to look upon this truth. If life now went on the same, without the presence of the one who has died, we could only conclude that the life we remember made no contribution, filled no space, meant nothing. The fact that this person left behind a place that cannot be filled is a high tribute to this individual. Life can be the same after a trinket has been lost, but never after the loss of a treasure.”

A Bittersweet Privilege

The last entry I contributed was one describing the experience of accompanying my Dad to our local hospital’s ER and the resulting aftermath that event.

 

 

My Dad died in July, not long after that blog entry. This is the first entry I have posted since then. I valued my privacy and needed that time to put my thoughts together in a readable and, hopefully, beneficial fashion. To be honest, for quite a while, it was just too painful to put down on paper the events and nuances of that time. Now that I am finally able to put pen to paper,  I hope that as I share the meaning of such an occurrence, my experience — while a personal one — can become a window into the universal experience of dying, death and grief.

 

 

On July 27th, my father was scheduled to have a procedure required to clean up the removal of tubes that had been placed in his kidneys. Dad was in a weakened state, and he and I knew that the procedure would carry with it some risk, but after many consultations with his physicians, Dad decided to move forward with it. Early on the morning of the 27th, the surgeon made a visit to my Dad’s room.  Doctor S. later remarked to me that my Dad was in a good place, at peace and commenting on the beautiful view as the sun rose over NYC.  But as I mentioned, Dad was aware of the potential difficulties inherent in the procedure for someone in his state. His leukemia was weakening him, as was the dialysis he endured four times per week.

 

 

As Dad was being readied in pre-op, he spoke of his profound fatigue and mounting frustration. He had become quite immobilized at the hands of his disease. He was apprehensive, but also at peace with whatever outcome would occur. As the nurses came to wheel him into surgery, I told him how much I loved him and he responded, “I love you too.” Those would be the final words spoken between us.

 

 

The surgery lasted almost two hours. Eventually, the doctor came out and said that Dad had made it through, but he was in a deeply weakened state.  Dr. S also said that given my Dad’s condition he felt that Dad had less than a month to live. Though my Dad had been reluctant to enroll prior to this surgery, it now seemed as if  hospice finally was to be in the picture.

 

 

About 30 minutes later the doctor emerged again, this time with two nurses. His facial demeanor was different this time, more serious, and the nurses looked as if they had been crying. I knew at that moment that Dad was gone. My suspicions were confirmed as the doctor told me that Dad had experienced cardiac arrest. While attempts were being made to revive him, the doctor was not confident that Dad could survive this additional ordeal. The doctor and I then discussed Dad’s wishes not to be resuscitated; the doctor understood. He went back into the recovery room one final time and emerged less than five minutes later with the sad news that Dad had died.

 

 

I was alone in the waiting area. I had never before felt so alone.

 

 

 

Regardless, my list of things to do and people to call kicked into action and I found myself on the phone calling my wife and urging her to get to the hospital with my mother as soon as possible. They arrived within 15 minutes. I also made a call to our pastor, who dropped what she was doing and got there just before my mother and wife.  I knew that the comfort of a spiritual presence would be essential for us and, in particular, for my mom while I was handling the necessary details required by the hospital. I knew that I needed to call other members of the family to inform them of the sad news. Needless to say, the following two hours were the most painful I’ve ever experienced. 

 

 

My mom was not at all prepared for the suddenness of the death of her partner of 60 years. Her pain was palpable and amplified by the stress of her battle with dementia. It was deeply touching to see the heartfelt display of emotion by Dad’s nurse-caregiver, a tenderhearted young woman who had lived with my parents and cared for my father for the previous eight months. For me though, having our pastor present was a true gift. She provided a quiet, practical compassion for all of us stricken with such sudden grief. The loving companionship of my wife, Christine, was a great source of strength for me as well, though she too was suffering the loss of someone she loved. These moments laid bare the quality and depth of love that we have for each other.

 

I share these brief vignettes in the hope of encouraging readers to surround themselves with people who care about them and can truly be of support during times of loss.  “Going it alone” can be a difficult option.

 

 

 

As a professional bereavement counselor, clergyman and social worker, I believed that my training would be of help to me in those moments. While it afforded me the intellectual foundation I needed to “do” certain tasks, I was surprised to realize another aspect of my role. I was, in a most profound and poignant manner, who I always was with my Dad: his son. I stand here grateful for that identity because as a son I was able to “be” myself, to feel and experience the waves of emotions as they unfolded within and around me. I often tell my clients to “let the feelings come” and “be prepared for the start of a roller-coaster of emotions.” I had no idea how true those statements were. In spite of all the schooling and clinical time I’ve spent over the past 30 years, I feel that I truly became a bereavement counselor on July 27, 2010.

 

I plan to keep writing over the coming weeks about the experiences and feelings I’ve encountered since July and hope that it will be especially helpful for readers who are themselves bereaved or professionals who are interacting with bereaved clients. My purpose is two-fold. First, I hope that in sharing those events I can shed insight onto the experience of loss for any reader who is in the same situation. Secondly, the writing process is, in and of itself, a genuine method of grief-work. By modeling this behavior, I hope that the same methodology may prove useful to some of you.

 

Embracing the Unexpected

It’s one thing for this hospice worker to go about his day in familiar territory aware of the curves, signals and speed traps that go into driving care for hospice patients. It’s quite another when the person being cared for is his parent.

 

 

One week ago, my Dad, who is 83, on dialysis and battling leukemia and lymphoma, was rushed to the emergency room with severe chest pain and shortness of breath. This was an unwanted twist in his disease progression. As the person responsible for his heath care decisions, Dad and I spoke to clarify his wishes should the outcome be a negative one. While Dad does have an advanced directive and wishes not to be resuscitated, we had to sit and talk about the outcomes of this unplanned bump in the road. I sat across from my dad and looked him in the eye. “Dad, I have to ask you a serious question,” I said. He looked up at me with knowing anticipation of the question. “What do you want to do if something goes south today?” I asked.

 

“I don’t want to go out like this,” he said. “I want to fight it; I’m not ready for this to finish me.” That was the green light for the medical staff to implement their plan of care with provision for resuscitation should it become necessary. A cardiac catheterization and valve replacement surgery were necessary.

 

 

Dad went on to have an unsuccessful cardiac catheterization due to dangerously low blood pressure. He was then transported to another, better-equipped hospital complex where a more extensive and successful procedure was performed. He returned home after a week with two unblocked arteries and renewed energy, all of us mindful of the fragility of life.

 

 

The reason I write this entry is to indicate that this was not what I expected to transpire. As I was driving to the hospital to meet my Dad in the ER I was running the gloom and doom scenarios in my head. “This is the end, he can’t survive this, he wouldn’t want to survive it,” and “Which funeral director do I call, how do I get the word to the family, how do I tell my mother who is in early stages of dementia?” This has been a 6-year struggle with two terrible diseases; my Dad is tired, my Mom is tired; G-d knows I’m tired. “Why can’t this just be over?”

 

I wonder if any of my readers have ever had such thoughts? Feeling uncertain as to the type of care and desired outcomes for our loved ones. Make no mistake; caring for elderly and ill parents is a difficult road. The momentum of caregiving often moves us in directions we wish could be otherwise. Sometimes it takes us to an unexpected place.

 

 

Sitting in the waiting room we received a visit from our friend and parish nurse, Sally. She has been a great support to our family throughout Dad’s illness. She could see the strain on our faces and quickly read the situation. “Were we making the correct decisions on behalf of my Dad?” Sally told us that we were giving my father a gift. How so, I asked? Because you were willing to listen to him and respect his wishes, she told us. This is the greatest gift you can give him. So much is lost as one approaches end of life—control, mobility, socialization, intimacy, the ability to work and contribute to one’s family. Arching over all of these domains is decision-making, being in the drivers seat. Without a true advocate so many people facing life-limiting and life threatening illness stand powerless to make decisions that reflect their wishes and their values.

 

 

So I’ll close by saying that in the midst of a difficult situation came a gift of profound meaning for my Dad and his life. Be sure to listen, be open and caring and embrace your loved one with the respect and dignity you would desire in your life.