“I don’t have time for this!” – A Compassionate Guide to Caring for Your Parents and Yourself

Guest blog post by Katherine Arnup – life coach, speaker, and a retired Carleton University professor.  Author of the award-winning book Education for Motherhood, a history of advice for mothers, she has pioneered studies on the diversity of family life. In her latest book, “I don’t have time for this!” A Compassionate Guide to Caring for Your Parents and Yourself, she tackles the last taboo—death itself. 

Almost twenty years ago, my sister Carol died of cancer.

She was a gifted Special Education teacher, director of countless school musicals, and my big sister. In January 1997, 19 years after her first encounter with melanoma, her cancer returned with an unstoppable force. As part of a team of friends and family, I cared for her during her final six months: the saddest, most terrifying and most transformative experience of my life.

Shortly before her death, Carol quipped, “You’re going to be an expert at this by the time you’re done with me.”

“Maybe,” I protested, “but I don’t want to learn it from you!”

We both laughed, knowing that, of course, this was precisely what was happening. I had a lot of learning to do because, before my sister got sick, I was more terrified of death than you can imagine.

Caring for my sister as she was dying transformed me.

Four years after her death, I took the volunteer training course at a local residential hospice program. From the moment I entered the hospice, I knew that it was where I belonged. Week after week, I found myself talking to family members, caring for dying people, helping to teach others what my sister had taught me.

I was 47 when my sister died (she was 51). Though often scared that I might not be able to endure the situation, my love for her enabled me to face my own fear of cancer, illness – even death itself. In facing those fears which had both dominated and limited my life, I was able to bring comfort to hospice patients and their families, to friends and relatives facing their parents’ aging. And I was empowered to face my own parents’ final years when that time came.

Throughout my years of caregiving, including 14 years as a hospice volunteer, I have written about my experiences. That work culminated in the publication of my book on caring for our parents and ourselves.

The book provides a roadmap for the journey into aging, illness, and dying that we will all travel—ourselves and the people we love. With stories from my family, my coaching clients, and my years as a hospice volunteer, I encourage people to overcome their fears of aging and loss so they can show up for the challenges in their lives.

We will all go through this in our lives. Everyone has either already lost their parents or is going to at some point in their lives. That’s just a hard fact of life. And of course, each one of us will face our own death.

I want people to know that they’re not alone.

When you are faced with caring for someone you love, you feel as if you’re the only one. It’s a very difficult time, especially if you still have children at home. Hence the title of my book – “I don’t have time for this!” But you don’t have to do it all by yourself. Family members, friends, neighbours, and professionals are all able to ease our load if we are willing to reach out for help.

You can contact Katherine Arnup at katherine@katherinearnup.com.

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 | Your Personal Soundtrack

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.”

Exercises

Your Personal Soundtrack

With a piece of paper by your side, or on your computer, construct the following chart. Make one age category per page. That way, if you need to use more paper—say for your teen years – you can do that and not get the age groups mixed up. That’s very important actually as you want to recognize when you were listening to what music.

 

Age The Music You Listened To During this Time Associated Memories
Birth to Grade School
Grade School
Adolescence
Adulthood
Later Life

 

Identifying Preferences

Your preferences are your greatest triggers to snap you into the mood you want to be in but first we have to identify our preferences. In order to do that we have several considerations: style preferences, tempo preferences and timbre preferences.

Style preferences are often one of the easiest markers of music preferences. This is the kind of music we like. From classical to country, there are definite styles that we gravitate towards. It is fun as well as important to recognize what your style preference are, but always leave yourself open to surprises. The activity forms on www.tuneintomusic.ca will help you begin to address the styles you most gravitate towards.

Your tempo preferences vary more often each day. The tempo of a song we like in the morning is often different than the speed of songs we like in the afternoon or just before we go to bed. When selecting a song for a party we often think of tempo first and select what we perceive is upbeat or relaxing depending the mood we want to evoke.

Finally there is your timbre preferences. Every instrument or voice carries with it its’ unique timbre. All timbres attract or repel the person who hears it.

Once you have addressed your music preferences, perhaps even documenting them you may begin to see patterns to your day, week, month or experiences.

So as you tune in to your music, may you find the peace, the joy, the laughter, and even sometimes the tears, that I have found with my music.

 

The McDonald Family

The McDonald family thought they were choosing just the right music until they heard it. This wonderful family spent every Christmas together. When the matriarch of the family was in the hospital, the entire family came to visit. Sharon McDonald, the head of the family, had always been close to each of her four children. Even after they were grown they all continued to live near each other and visited regularly.

Now in the hospital for Christmas, Sharon always had at least one family member at her side, if not two. When you walked past their door, the room was regularly filled with animated voices and laughter. I first met them a week before Christmas. I was walking to another patient’s room when Sharon’s son ran up to me and asked if I would come into their room for a moment. As I entered I was greeted by four other smiling faces. Each person had a bit of red in their hair, and it was easy to tell they were related. In the centre was Sharon. She lifted her hands and welcomed me with a two handed shake.

Then she said, “Christmas is a very important time for our family. We would be grateful if you would sing some of our favourite songs.”

I agreed. Before I started everyone was lively and cheerful. I sat down amidst the group and pulled out my guitar. Sharon turned to me and said, “Jennifer, I think we need a song that we won’t cry to. How about ‘Jingle Bells’?”

I played my liveliest strum and opened into the first verse, “Dashing through the snow,” I didn’t even make it to the chorus when the entire room stopped singing and started crying. The Christmas music, although the most suitable choice, was reminding the family more about what they wouldn’t have this Christmas (their mom at home) than what they did have. I slowed the music down and was about to stop when Sharon started laughing. And soon everyone else was laughing with her. “I guess it doesn’t matter what we sing I guess we are needing the music to help us cry.”

Music can positively and negatively trigger our feelings and memories. When we choose our music intentionally, amazing things can happen. Our choices are critical when finding the right music for the right moment and for the right purpose. However sometimes, as Sharon recognized, the music can help you understand what you truly need in a moment more than anything else can.

Jennifer Buchanan, MTA is the owner of JB Music Therapy and Author of this story and exercise found in her book ‘Tune In: use music intentionally to curb stress, boost morale and restore health.’  Jennifer is a popular keynote speaker at healthcare and education conferences.