The Team Approach to Caregiving



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.

Healthcare is a Grassroots Effort

I am fortunate enough to have the opportunity to talk to people about their experiences in healthcare all the time. Be they a patient or a caregiver there is a great degree of discourse out there. Maybe it’s because I’m a Market/Consumer Researcher? Maybe it’s because I’m a Sociologist? Maybe it’s because I listen? Maybe it’s just because I care. That being said maybe we all need to care just a little bit more because we’re in the midst of a significant shift and the writing is not only ‘on the wall’ but in the hearts of so many. I say it all the time that Millennials are teaching us how to live and the Baby Boomers are teaching us how to die and their wishes, their needs, their ways of doing things will alter how we do healthcare, whether or not the healthcare system is ready.

If you’ll come along and be a ‘fly on the wall’ for a couple examples of what I hear.

Caregiver/granddaughter: I just don’t know what to believe anymore. Hospice tells me one thing, the facility another, and the doctors a third, not to mention the in-fighting and competition between the sitters.

Caregiver/daughter: We never had a close relationship and now I’m the one in charge of her well-being. I just don’t know her wishes? We never talked about it? I want to do what’s right for her, she is my mother, after all, but I don’t know where to start.

Patient: I can’t get my doctor to listen to me. They’re in and out in no time and I just need more information. I feel like I’m being led instead of having a say in my treatment. This is my health after-all, right?

Caregiver/spouse: It’s my job, my obligation, to care for him. I don’t need help. This is the least I can do. I’m exhausted but I want to do everything myself. It’s the right thing to do.

Caregiver/daughter: It’s expensive! We’re talking $8-$11,000 a month for basic care and the facility. We’ll be out of money in three months. How do people do this?

Caregiver/daughter: We’re just living too long. When my day comes I say just give me something and let me drift away. You know there are states that allow that?

Caregiver/son: I think we’re regretting the decision that a few years ago, when mother was 90, we used heroic measures to save her and now she has dementia and what quality of life does she have? Maybe she wasn’t meant to still be here?

There are so many unknowns regarding healthcare and especially end-of-life, and that’s why we are where we are right now. This part of the journey is not scripted. There is no ‘So you’re expecting …’ manual for the end-of life like there is for the beginning. The multitude of the unknowns teamed up with various opinions, life experiences and technical know how bring us to the point where we are needing to strip down the system to its most basic and build it up again to suit the needs of the ‘new consumer’.

The younger generation is full of ‘want it now’ and ‘want it my way’ types. This is a good thing when you learn to adjust and listen well to their voices as you do so. Build in tools which bring healthcare to them where they are, when they want it and complete enough to offer them the options to choose the best course of action for them. Give them treatment options, pros/cons, costs, timing…give them the information they would have at the ready when purchasing any other good/service. They are fully aware they are capable and they insist on being empowered to make their own decisions.

The older generations have seen their share of grief and hardship. They were the children who witnessed the greatest generation fight in wars, as did they themselves. They were the generation who saw their loved ones through death in their own homes when they were children. They were the generation that came to adulthood as the boom of nursing homes took hold and we started the great shift toward ‘institutionalizing’ our elderly. There were scars left on their hearts when they saw their parents through end-of-life out of their homes and away from loved ones. This generation is opting out of that for themselves. This generation is of the belief that quality trumps quantity and they want to ensure when they have lived their lives that they can finish their journey with as much dignity and pride as the current state of healthcare will offer.

What’s happening now is ‘the great conversation’. Sometimes behind closed doors because people still don’t know where they (or others) stand in this new way of navigating the system, but often being had none the less. People are hungry for information. People are thirsting for support. People are desperate for insight on how to manage not only their own health but that of loved ones in a way which is dignified and affordable.

Enter Go-Fund-Me and other such tools which offer a platform to raise funds to help in many ways but more and more specifically for healthcare and end-of-life. With the restrictions of insurance and the limitations within traditional healthcare people are expanding their net and looking elsewhere and paying out of pocket.

Enter Caring Bridge and other such tools which offer an outlet to disseminate information to the masses to encourage group participation in your loved ones care. Caregiving is exhausting work and even those with the best intentions are due to burn out. Having people in the loop and ‘at the ready’ ensures that your loved one will always have someone to take them here or there or sit with them and hold their hand or, at the very least, offer them moral support or send lovely cards or gifts to brighten their day.

Enter Meal Train and other such tools which offers support to feed not only the bellies of those in needs but hopefully their souls as well. When people know there are others who care enough to build and deliver a meal for them it offers them hope and a certainly a glimpse of the good in humanity.

Enter Support Groups which give caregivers or patients an outlet to vent and realize their not alone, share advice and offer hugs. These groups also offer them insight that there are many ways to walk through this amazing thing called life and often there are options available they simply never knew existed.

Healthcare is a grassroots effort. We are using more and more tools to aid us as we journey forward. We are bringing more voices into the conversation, sifting through more information and building our own protocols that fit our wishes and beliefs. We are shifting away from an organized system with a set entry point, protocols which serve the masses and relatively predictable end-points. The script is being muddled, we’re living longer and people are taking their own lives into their own hands and all they ask is for support and access to information along the way. We find that the more one is empowered the better their quality of life. We have learned that the more say one has in their care the less of a burden they are on the system. We have studies that show us lower healthcare costs if only we can come to weave into our current system new ways, new processes, new opportunities, and, in the end, less heroic measures.

At the end of the day if you ask a patient it’s about quality. If you ask a caregiver it’s about quantity. Our loyalty to those we love leaves us fighting for more as that’s how we believe we show our love and devotion. It’s beautiful, it really is, but before we fight for someone else let them have a say before they lose their voice. Have the conversation. Keep your fight on task…fight to abide by your loved ones wishes not simply for more days. These are tough conversations to have but necessary and loving at their very core.

These are interesting times and I am honored to have been a part of loved ones lives and end-of -life journeys and I am empowered by the knowledge I gained during those days and months of care and constant researching to find the best ways to handle whatever was, and is, at hand. I am hopeful that when we step aside and set ego and greed on the back burner we’ll find a way to enrich the quality of our lives from start to finish. It’s not always about more test, additional surgeries and more days.  Of course, sometimes it is…and that too is a choice and one which ought to be respected. It is after all a journey and every journey must end.IMG_7610