Saying Goodbye and sharing memories with a simple online solution

Guest blog post by Maxime T, co-founder of www.remember-me.co website. Remember-me is a simple and safe way to share, preserve and send on personal messages and memories to loved ones once you’re gone.

The idea of a web-based service that would give the power to people to communicate a little bit longer than life normally allows came to me a few years ago. It was initially a response to my childhood anxieties about the death of my parents, but became more urgent after the loss of my grandmother to the progressive dementia of her Alzheimer’s. What remained unacceptable is not being able to say a proper goodbye after either sudden death or long degenerative disease. I had to find the time and the funds to give life to the project, but finally in October 2015 www.remember-me.co was born.

Unlike some “after life” websites, the purpose of remember-me is not to offer a one-stop-shop where people manage their digital afterlife. We used today’s technology to create a simple platform purely intended for our users to create and send posthumous messages. Besides taking all necessary security measures, our focus was to make this service simple, easy and accessible to the widest of audiences. What developed was a three step process: write a message and add some content such as a video or a selection of pictures, assign a contact and decide the moment of delivery.

Besides giving the possibility to users to reiterate their affections for their loved ones, family members and friends, remember-me can be a great support for those left behind, for those in grief and to get the proper closure they need. But mourning has to end and so does the messaging. This is why we decided to limit our service to the year following the death of the user.

As in my own case, remember-me can be a priceless tool for users suffering from dementia to be remembered the way we all deserve to be. For the users unable to do it alone, working together with a close friend or family member can be such a meaningful project.

There are as many good reasons as there are individual cases and personal situations to use remember-me, each one with their own value. We purely created this service to give the chance to those who feel the need to say a proper goodbye; the words that really matter.

We won’t solve the pain caused by death, but we hope it might help in some small way.

Behavioural Changes: The Importance of “Knowing the Person”

This story is shared with us by our colleague Andrea Leatherdale – RN, BScN, Practical Nursing Program Coordinator at Centennial College. In this story, the nurse observes changes in behaviour of one of the residents. The nurse is not able to shake off the concern that something significant is about to happen. The story illustrates the nurses listening skills and her attempts to alert others to the changes. 

A woman in her late 80s with advanced dementia and COPD with limited communication.  She was usually kept engaged in hand activities, like folding laundry and dressing dolls.  The usual practice on the unit was for nursing staff to play music during morning medication rounds and engage residents with singing and dancing.  Usually this woman wouldn’t engage, even though her family said she loved music.

This woman’s COPD was typically mild, but one morning she developed a new respiratory congestion, that was relieved with inhalation medications.   At the time that the morning congestion started, she started to sing spontaneously.  She was singing “Wake me up before you go-go, I’m not planning on going solo”.  She sang this phrase over and over again.

The nurses were surprised at this sudden change. The resident did not normally engage verbally. The nurses wondered what caused this change in behaviour, they discussed it as a team and reported it to the doctor and asked the doctor to assess the woman’s chest congestion. The doctor said that since the chest congestion cleared with the morning inhalation treatments, it was not a concern.

When her family heard their mother singing, they were excited that their mother was more alert and active. They attributed this as a positive change to the way the staff was interacting with her.

The nurse assigned to care for her, who was most familiar with her, still felt that there was something else happening. She talked with the doctor again. The doctor still said since the woman was eating and drinking normally and her temperature was normal, no further investigation was needed.

The resident sang this song every morning for 5 days.  On the fifth day, she had a sudden increase in congestion. She was sent to hospital.  She died 2 days later in hospital from pneumonia secondary to COPD. Her daughter was with her at time of death. Other family members were not there. The family was concerned that she had not died in place, in her home, at the facility.

 

We’d love to hear about your experiences and thoughts on this story. Please leave your comments below.

 

Advocating for the Family of Persons with Dementia

This piece was written by our friend and colleague, Andrea Leatherdale – RN, BScN, Practical Nursing Program Coordinator at Centennial College.

 

Depending on a long-term care agency’s policies, when a person with dementia enters the end-stage of life, management/administration may seek to transfer care to an alternate level of care (palliative care unit) away from the familiar long-term care setting.  Families are often caught unaware of this practice and often desire their loved one to remain in the known setting until death.

Families benefit from familiarity with staff, continuity of care, the permanent room setting is set as the person’s “home”, often for years, and it is less disruptive at the time when impending loss/grief is occurring.

The Practical Nurse can advocate for families to be informed of the level of care process/policy/practices upon initial admission to the agency.  This is more than advanced care directives. It is making sure the family knows the long term care policies and past practices on progression of care from admission to death.  The family should know if transfers may occur to/from acute care but also within the long-term care facility if/when their loved ones condition changes.

A key question to the family should ask is “Can the dying person remain in place (“home” room) in the final weeks/days/hours of dying?”

A woman in her late 90’s had been LTC for at least 20 years.  She had entered the facility walking and cognitively aware 20 years previous.  As her dementia progressed over the years, she was transferred within the facility to the special care unit (secured unit) in the last 10 years of her life.  She became familiar with that environment, could navigate room to dining room and back to “her apartment” which was filled with memories, trinkets and objects from her past.

Her family was highly involved and felt comfortable coming to the unit, knowing other residents there as well over the years.  Suddenly she experienced a rapid decline which required an acute care transfer.  Upon her return to the LTC facility, she was identified as requiring “palliative care”, and administration made plans to transfer her to an alternate unit in the facility.  Administration of the agency said she no longer had “special care unit” status and would be transferred to the palliative care unit.

When the family was informed about the decision to move her, they were very surprised and upset.  They expected her to be able to remain in the familiar setting until her death. The nursing staff of the special care unit went to the administration to advocate for the resident/family to remain on the unit.  However, the administration said the resident no longer fit the criteria of the unit and must be relocated in order to make space for a new admission to special care.  The nursing staff on the special care unit said that palliative care could be provided by their staff and they already knew about the resident and had a strong connection with the family to provide support.  The special care staff argued that the staff on the other unit would not have time to achieve the same level of trust with the resident and family especially since it was clear that the resident had little time remaining.

The resident’s condition was significantly deteriorated and was apparent death was imminent within days.  Administration still said the resident must be transferred off the unit.  Nursing staff went to the attending physician, who agreed that the woman should remain in a familiar “home setting” and also went to administration to add that it would not benefit the resident to have a new doctor on a new unit to take over care at this point.  Administration still said the resident would be transferred.  In the midst of all this, the family was kept informed of nursing and physician advocacy.  Unfortunately, the consistent message by administration kept adding more and more stress and worry to the family while they were coming to terms with their mother’s condition.  Ultimately, the nursing staff advised the family to advocate for themselves directly to administration.  The administrators were still saying no to the family until a member of the family identified themselves as a lawyer and commented that the situation was not fair or legal.  Upon this discussion, the administration agreed and the woman remained on the unit for two more days until she passed peacefully with the family present and familiar staff.

Ultimately, the person and family’s needs were able to be met.  However, this was not without significant worry and upset at a time when more support was needed.  The other resident’s family members were also witness to this (as they were present for the family since they were all consoling each other).  The other families could see the process of advocating that the nurses and physician were attempting.  This precedent did result in changes to agency policies and allowing a dying person to remain on the special care unit is more common though not guaranteed. Nurses are continuing to advocate for change.

 

What are your thoughts on moving persons with dementia when death is imminent? Please leave your comments below.

Music Therapy in Hospice and Palliative Care | Gwen’s Story

Guest blog post by Jennifer Buchanan of JB Music Therapy – a Canadian company based in Calgary, Alberta. “Our mission at JB Music Therapy is to transform lives through excellence in clinical practice and education by bringing music into the foreground. JBMT has been providing music therapy services since 1991. We offer personalized programs for individuals coping with brain injury, mental health issues, learning challenges, dementia, palliative care, addictions, long-term care, autism, as well as youth at risk.”

 

The Music Therapist’s primary aim is to assess, identify and provide music experiences that will evoke the greatest positive response from individuals and groups in the areas of: comfort, communication, self and social expression, mood, motivation and perception of self-worth.

Music Therapy is the study and practice of how music affects people.  Our music therapists use music as their primary intervention when working with all population groups.  The music therapists will incorporate singing, vocalizing, instrument improvisation, exploration of unique sounds and other sensory and sensitive experiences.  Tempo, timbre, melody, harmony, pitch and genre of music are always considered – with the primary aim of supporting the needs of the clients/patients by easing anxiety/stress, opening doors to communication, engaging  and creating opportunity for inclusive social interactions.

Integrating music with supportive care of the dying is becoming more common in hospice and palliative care programs.  Our clinical work has indicated that music therapy in Palliative Care can:

  • Help to Decrease Anxiety.
  • Help with General Feelings of Discomfort.
  • Address Spirituality
  • Enhance Quality of Life.

A certified music therapist is a graduate of a Canadian Association for Music Therapy recognized music therapy education program.  Music Therapist Accredited (MTA) is given to music therapists who have completed their education (undergrad or masters) in music therapy, a 1000-hour internship, and have passed the Certified Board of Music Therapist’s exam.

 

Gwen: will you remember me?

            Being aware of your personal soundtrack can have some profound consequences.

For Gwen, music enabled her to become all that she could be just a month before she would die. Gwen, a fifty-five-year old blonde beauty, sat in a warmly decorated room near the window. Sixteen months prior, she was diagnosed with cancer. Now she sat in a hospice room near the outskirts of town. She was a model patient going through many rounds of chemotherapy and radiation. After her initial diagnosis and for several months, her family and friends were not aware of her cancer. Gwen would rarely ask for help. The care staff were just around the corner and would often enter her room to check on her. Except for occasional pain medicine she would smile at them and say, “I’m okay.’ Her husband had passed away many years before and she would often say she was glad he went first as this would have been very difficult for him.

She never expected the breast cancer to metastasize at such a rapid rate until she heard those fateful words, “There is nothing more we can do for you but give you a comfortable place to rest.” She had dreaded telling her only daughter and her sister the news. When she told them, they both broke down in tears and were soon making sure the doctors had done everything they could. Now in hospice, Gwen did all she could in her fragile state to prepare her loved ones for the inevitable.

When I was introduced to Gwen, she was wearing a colorful head scarf that covered what was once blond hair. Pictures of her and her family were all around the room, interspersed with colorful paintings and drawings.

“Come, sit close to me, I have been expecting you,” she said.

She pointed to the chair next to her chair by the window and rested her hand on my shoulder as I sat down. She turned slightly and in a sweet, gentle voice said, “I have had a lot of time to process what is happening to me, and understand I must die. I am worried about my daughter, Hailey, and my sister Julia. They are very angry. She took a deep breath and said, “They are not accepting that this is happening to me or to them.” She brushed a few strands of what was left of her hair away from her eyes and said, “I need you to help me.”

She pointed to several pieces of art around the room that she had created over her lifetime. She spoke of how her daughter was as passionate about painting as she was. “It’s in the genes,” she assured me and mentioned to me her sister had started taking lessons over the past few years. She told me that she had some ideas of how to integrate art and music while also helping her daughter and sister come to the understanding that she is going to die—and soon.

Just as my grandmother had a plan years earlier reaching into a desk drawer for my grandfather’s favourite song, Gwen’s plan also rested in the desk drawer she had asked me to open. “Take out the small stack of papers.”

I looked at the ten songs in front of me.

“Will you please play the songs on your guitar on Saturday and meet us here precisely at 2:00 p.m.?”

Before I had the chance to say, “I don’t work weekends,” her blue eyes crinkled and she touched my shoulder again. I would change my weekend plans.

That Saturday, I had the songs prepared and arrived precisely at 2:00 p.m. Her daughter and sister were sitting on either side of her. She asked me to sit in the corner on a chair. Once we were all in place she sat up a little further in her bed. She started by saying, “Thank you for coming.” She then turned to her daughter Hailey and her sister Julia and said, “I invited you here today because we need to say goodbye.” Silence. “I know that this is hard for you as it is for me, so I came up with an idea that could perhaps help all of us. Hailey will you please go into the side closet and take out the piece of canvas I asked Julia to bring last week.”

Hailey slowly walked over to the closet, opened the door, and brought the canvas that had been leaning against the wall inside. “Julia will you please reach into that top drawer and bring out the pastels that one of the nurses brought for me.” Julia walked to the end of the bed and opened the top drawer where the pastels were. There were many colors.

Once the two women were back on either side of Gwen, they heard her speak again. “I have asked Jennifer to play ten songs today. During the first song I am going to start drawing and when the song ends I am going to pass the canvas to you Julia and you are going to continue the picture adding in whatever the music brings to your mind.

“When the second song is finished then you will pass the canvas to Hailey who is going to continue from where you left off. We will pass the canvas back and forth after every song for the first nine songs and then relax and reflect during song number ten. The tenth song is a special song I have selected for the three of us.”

Julia and Hailey stared at Gwen not saying a word. Gwen’s determination was clearly visible on her face and to say anything would break the spell she had on all of us. Hailey passed the canvas to Gwen and reached into the box on Julia’s lap to select a couple of pastels. I took a deep breath. When Gwen looked at me and nodded slightly I started to play. I could not see what was being created on the canvas, but I could definitely see a transformation happening on the faces of the three women. The canvas did what it was supposed to—passing between each family member at the end of each song. No tears were shed, just a change of focus and an occasional smile as they passed on their contribution.

We sang many powerful songs. What a Wonderful World. Lean On Me. You’ve Got a Friend. Soon it was time for the last song. I was nervous as I strummed the first few chords as I knew there would be no more pastels on the canvas, only reflections of what was created. The highly emotionally charged song Gwen selected as the last piece was Louis Armstrong’s, “Wonderful World.”

Gwen put a few finishing strokes on the canvas and then held it up for each of them to look at. The tears they held back released and two arms went behind Gwen in an embrace as they gazed at the piece of art they created. I finished the last words and put my guitar down quietly. Gwen passed the canvas in my direction as both her daughter and sister’s faces were now embedded in both of her shoulders. I carefully put the canvas on a high shelf looking down on them so it could dry. It was a beautiful meadow with flowers of many colours. I left the room so the women could say goodbye.

Gwen had set the intention of using her life’s music soundtrack as the backdrop to already powerful relationships. It was a non-verbal means of sharing herself and her heart, and those songs allowed her to say a touching goodbye.

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