As we navigate the intricacies of life, one of the toughest things to do is to see the world through someone else’s eyes. Even though hospice patients and their families often become very close to their care staff and vice versa, the person in each role experiences the relationship through very different circumstances. How does it really feel to take on the role of caregiver to a family member who is receiving hospice care? How can we prepare for something that so few of us have ever done? Hospice care teams know this problem intimately. A family member who suddenly finds themselves in the role of caregiver often has no experience with anything like the realities of helping a loved one through end-of-life care.
The hospice team is there to help the caregiver understand what is happening and what needs addressing. However, the question of what the caregiver will go through as a caregiver is hard to answer. Every situation is unique.
Mary Minor has quite a bit of perspective on her new role as caregiver for her older sister, Anne Marie Lippert, who is in hospice with a diagnosis of Lewy Body dementia. Mary, retired since 2018, spent many years as a hospice nurse at Housecall Providers. She started shortly after Housecall Providers began offering hospice services in 2009, at the urging of her friend and founder Dr. Benneth Husted. Benneth knew Mary’s dedication as a hospice nurse and wanted Housecall Providers’ newest program to have the very best clinicians. We consider ourselves fortunate to have had her expertise on our team, and fortunate still that she has agreed to share some of the lessons drawn from these two different perspectives.
Understanding both sides of the coin
Mary begins by saying that, as a nurse, she knew the other side of the coin is difficult, so she was as prepared as she could be to take on the role of caregiver. But the difficulty of being the person to make hard decisions regarding her sister’s care cannot be overstated.
One example Mary gave of how the caregiver role expanded her perspective involved the decision of whether to treat a complication even when her sister had given clear direction on the matter. “Particularly with dementia, the path isn’t so clear. My sister – when she was still [mentally] here – was clear that she didn’t want to prolong her life, but having medical power of attorney can be complicated,” she says.
Mary explains that a hospice nurse provides the available options to the caregiver, but actually making the decision is not always simple. “For example, if I stop this or that medicine, is that included? When she was still up and around, what if she had gotten a bad pneumonia? How would I have dealt with that? I don’t know.” During her time as a nurse, Mary couldn’t think of any family that chose not to treat a complication like that. “And I understand that now,” she reflected. “But in retrospect that might have been a blessing when I see where she is now.”
Importance of naming a medical power of attorney
Reflecting on her experiences on both sides of the relationship, she offers the following advice “If you are cognizant, you need to get a medical power of attorney lined up ahead of time because that’s a huge responsibility that you are asking of someone.” She explained that this matters so much because, if you should end up on life support, would the person you selected be able to turn off the machine if that was your wish?
She further explains that family dysfunction is somewhat typical in end-of-life situations, not as a reflection on families or society, but rather because the situation is extremely difficult. Each family member may be grappling with their own issues at the same time they are making major decisions for their loved one.
Six seconds from a crisis
Knowing the supportive environment that Housecall Providers Hospice fosters with patients and family members, she knew her sister would receive the best care and also what it meant to have a nonprofit hospice directing that care. “When I was working and such an advocate of Housecall Providers, I would be in adult care homes, and some of the owners would tell me about the other hospices and the level of care they received, and it was troubling.” Now Mary worries about the surge in for-profit hospice companies here in the metro area. “My generation is next in line. Who’s going to take care of us? What if there is no organization like Housecall Providers when I need it?”
Expanding on the larger lessons she has taken from being on both sides of the hospice experience, Mary suggested that compassion is easier to cultivate when we remember that things can change on a dime. “We are always six seconds from a crisis,” she says, “and keeping that in mind can help make the world a better place.”