All of us at some point will have someone we know, and love, die. All of us will die one day. Some will have the gift of time because we know we have a fatal disease and for others it will happen without warning. Those that know they are dying and have time to work through the process of death will often have the choice of hospice care.
The very idea of hospice can be unsettling. It means we are contemplating our death, and to the degree possible planning our last breath; a bit daunting to say the least. We must be confronting our own death or that of someone close to us for hospice to have entered our world unless you are Jean. Jean is a hospice social worker. Hospice is her professional world five days a week, and maybe evenings or weekends if the people on her caseload enter her mind off hours.
To know Jean is to know joy, contentment, kindness, and humor. Her humor is silly, a bit offbeat, and makes one feel good to be enveloped in it. She laughs easily. Her Facebook profile photograph is of her with a moustache drawn on her face. It is appropriately Jean in all of her silliness. If I didn’t know she was a hospice social worker I would have denied it, vehemently. My perception of hospice and anyone who works for one are they are very serious, and maybe have emotional barriers up to protect themselves in this kind of work, work that is always shrouded with the shadow of death. Jean has enlightened me in this regard.
The positive power of hospice shines through when Jean speaks of her work. The team approach is important she says. They are back up for the person who is dying and the caregivers. The team is composed of two nurses and a social worker. When a team is assigned to a person it is this team that sees them through until the end. They take care of the nitty gritty details such as discussing advanced directives, power of attorney, and end of life comfort choices. They also will step in for a while to take over someone’s grieving. They can be a grief-holder at times when it overwhelms a person and they need a break from it.
Jean’s particular power lies in her empathy. She says social work choose her instead of her choosing it. “I don’t know that I ever choose. I learned a lot about the world really young…I had watched some pretty awful stuff happen to loved ones, and for a long time I was going to avenge the wrongs of my childhood, I was going to save abused and neglected children.”
For a while Jean was a case manager for mental health that included children and adults. Maybe she would still be in this area of social work had she not been laid off. Losing her job led her to the decision to go back to graduate school for a master in social work. As part of the program she had to complete an internship. Five years ago she completed the internship with hospice and has been there ever since. The personal blends a bit with the professional for Jean. As a young person she was introduced to hospice through her grandmother and aunt’s experiences. She was determined to “go back and help” and she has many times over.
It would take a while for Jean to give an idea of how many people she has touched. Some folks, a term she uses over and over again when referring to the individuals and the caregivers on her caseload are on service for a day and some for years. For this reason it is impossible to get an accurate number of folks who have passed through her life since she entered the field of hospice social worker.
Jean speaks to the pressure when there is a short length of stay, a person who enters hospice and is going to die within a few days, at the most weeks. “It’s great that I have teammates I can rely on. We are going to get this done together; we are going to help this family, that’s really all we can do. We don’t like for it to go that way but you know it’s what we do.” The team works for the patients and their families and as a pillar of strength for one another.
On a typical day Jean will see three to four patients, though lately it’s been more like five, six, or even seven. The caseload has grown over the last few months with shorter lengths of stay. It is a lot of people, and their families, to see in one days work. Before the day gets going she checks the morning chart to see if any crisis happened overnight that she needs to address. Even though she has people on the schedule to see, maybe two pre-arranged appointments, she could end up packing her day with unscheduled visits. For the most part she works out of her car going into the office periodically for meetings. In this way she is more accessible to the needs of her patients.
If someone is considering whether to be admitted to hospice care or ride it out alone Jean says to remember with hospice “you have back up, when its you and your spouse, it’s your spouse trying to coordinate everything or your family member or your friend, and some people do not even have that ….with hospice you have access to someone 24/7.”
There have been times when Jean has been cussed at when she’s called a referral. She was told not to call again and she is okay with that. It doesn’t hurt her feelings and she doesn’t take it personally. She understands how difficult this time is in someone’s life. For Jean that’s as negative as it gets which isn’t negative at all, it’s part of the process and she gets that.
Jean explains how she is a part, but not a part, of this last stage of death, and how it seeps into her own life. “A couple of months ago I saw this couple that had been married for sixty-five years. He was not doing well, and he had agreed to go to our care center. And we were trying to coordinate this, the nurse and I. His wife goes in there, and I went to walk in and she was just kissing him and loving him, saying I love you but I can’t do this, and he was like I know honey, it’s okay, she said but I’m not ready, I don’t want to, and he said I know. And it’s one of the most touching things I’ve seen in a while. I mean it was just one just one of those, and I didn’t eaves drop, it was just a flash, it was like I hope I picked my spouse well. You have that moment that was a beautiful moment that I caught a glimpse of. A couple truly, madly love each other after sixty five years. And that’s a real gift, I think.”
Even though she says she “hopes” she picked her spouse well, she knows she has, their relationship has been put to the test at a poignant time in their lives. They had a daughter a year ago that died before birth. They went through labor together knowing their baby girl would never grow up to smile, or laugh, or cry, or take a first breath. Her husband was with her every step of the way; they grieved together, and took care of one another in the days and weeks after their sweetheart died.
Jean’s personal life has added a compassionate dimension to her professional life. While she was grieving she learned to set boundaries and she teaches her patients the lessons she learned. She empowers them to set limits when people can come by and visit and to never feel guilty when you turn them away. Take care of yourself; take care of each other, even if it means saying no to others when you are not ready for them to help you. At the same time she encourages her “folks” to open themselves up to others who offer help.
One might think that after the death of her daughter she might have had enough of hospice. She has not. She doesn’t feel her work is done yet. She is a “big girl hospice cheerleader”. Yes, there is sadness but at the same time there is this ability that she has to ease the journey of death for her patients and their loved ones that keeps her going and she confidently knows this about herself.
I asked Jean what advice she would give someone who has a terminal disease. She said “this is probably the truest thing I can tell you, trust your gut. Trust your gut, follow your heart, people want to know did I do it right. Did I do it right. I tell them you can’t do it wrong. I’ve had patients tell me when their loved ones aren’t around ‘I’m really tired’ and I tell them it’s okay to be tired. You can say you’ve had enough. People know, if you trust your gut and do what you think your loved one would want you to do or do what you feel is in your best interest you can’t do it wrong.”