A dear friend is completing her life’s final journey…at home. Strong in her faith and experiencing joy with friends and family, she is at peace. At this stage her care is straightforward: Manage her pain, uphold her wishes, keep her comfortable, celebrate her moments of joy, and keep her safe. This is done through the loving care of friends and family who share in her days and nights, and the visiting hospice nurse who stops by a few times a week. Together, they are her care giving team.
This is the second time in as many years that I’ve shared in this sacred part of a friend’s final journey; winding down, buttoning things up and preparing for what comes next.
I’ve learned that seeing someone through the process at home adds extra challenges, but if it is important to them, it is worth the effort. People are more likely to visit and linger, and there is levity generally not found in a hospital or hospice.
So, how does a team of mostly inexperienced care givers do this and maintain their sanity as they help another through this final stage of living? Home hardly provides a controlled environment. There are issues with personal care, feeding, safety, and, of course, the cultivation of joy. The team that works best here consists of a Ringleader, a Researcher, a Social Media Manager, Doers, an Uber-Organizer, a Cheerleader and an Advocate.
The Ringleader knows the person journeying through (the Journeyer), all team members, and their roles. They need people to research, release information, gather food and supplies, or visit and offer joy to the Journeyer (or the team). They are the one that, when/if anything falls through, they must step in and take the reins and responsibility. This is the care giver who most needs support and encouragement.
The Researcher brings options for care, updated processes and opportunities and new insights. The Researcher is objective, yet thorough. There are multiple confusing choices available from doctors and facilities, to treatment and nutrition. Several people need to fill this role as it’s quite complex. One can focus on the traditional options, and the other on the alternatives. Remember, because something is proven to extend life, it doesn’t mean that’s the acceptable choice. It is up to the Journeyer and/or their loved ones to determine quantity or quality, and how they’d like to balance those to generate peace. Empowering the patient to make choices at this time can give comfort and control to one who is at the point of saying their goodbyes.
The Social Media Manager is the glue…the person who disperses information regarding the Journeyer. The key strategy here is to build a large team. There is heavy turnover since it is both mentally and physically draining. Time being unpredictable, one must be prepared to loop in others to keep moving forward with as few interruptions as possible. The Social Media Manager will frequently post updates and photos on various sites (e.g. Caring Bridge, Lotsa Helping Hands, Meal Train, GoFundMe, Face Book, Twitter, Instagram, etc). This keeps the journey at the forefront for those who will want to lend a hand.
The Doer(s) are the muscle and the heart. They are ‘boots on the ground’ and the lifeline for the Journeyer. This is the group with the highest turnover. It’s a lot to ask people to cut the grass, clean the house, cook meals, or drive for a few days let alone for weeks or months. Even loved ones reach their limits. It’s OK. Be prepared and have new people ready. Manage the Doers in a way that best fills vital roles but still speaks to their core capabilities. You may find some suited to cooking but uncomfortable with visiting. If you need something more than another, focus on that and let the rest fall into place. It will. The Doers need a leader. This Uber-Organizer is the person that takes the lead for all Doers. She/he utilizes resources wisely so as to not over-extend any one Doer. Tools are Voxer, Meal Train, Face book, or Lotsa Helping Hands.
The Cheerleader is the person who enters smiling. Their role is to lighten the mood for the Journeyer. This journey is stressful: it’s heart wrenching, it’s beautiful, it’s loving, it’s life and it’s death. We will all pass through this journey; some of us suddenly, and some will wish to wind down in as peaceful and loving a way as possible. It is this final option to which I speak. The Cheerleader helps the Journeyer to reminisce, share laughter and stories, and talk of joyful things. The Journeyer’s role is to absorb the good and put forth whatever they choose to leave behind. A great tool is Voxer.
The Advocate is similar to the Ringleader but may not have previously known the Journeyer. The Advocate is a professional touch point for the care team, objectively managing ‘the system’ and offering options that fall ‘within coverage,’ financial abilities or time constraints.
There are so many nuances at life’s end: constantly changing issues with healthcare, alternative offerings that need to be carefully vetted, managing the dynamics of the family; how to keep everyone in the loop and who has authority to do what and when? Conversations need to be held with the Journeyer regarding living will and their chosen course of care, who to connect to for a spiritual advisor, and discuss funeral arrangements and wishes for disbursement of specific mementos. Working closely with the Ringleader the Advocate is there to tend to wishes and alleviate any stressors along the way, helping to move toward joy in living and peace with passing. The Advocate is also there to lend support, a shoulder to cry on, an ear to listen and a caring heart for all those who are on the care giving team during and after the journey is over.
Here’s to health. Here’s to happiness. Here’s to finding one’s joy during each and every part of the journey.