A powerful story was recently posted by a relatively young man living with Parkinson’s Disease in a long-term care facility in the US. This was posted in a group I belong to on Linkedin. I posted these comments on that forum.

This powerful piece by Martin Bayne told of him seeing the despair in his fellow residents as they lived their lives and how the staff and others no longer saw the pain in the faces and in the lives of the people in their care.

It reminded me of the words of an older nurse after she had watched a film of children affected by prolonged hospitalisation and separation from their parents. She said, ““This film brings back to me the first child I ever nursed in hospital. He grieved for his mother and it simply broke my heart. After that I never saw grief again till I saw this film” (Robert Karen: Becoming attached). A pediatrician who also saw the film said, ““I was angry but after the film I really heard children crying for the first time”.

For me the despair of Martin and his friends is something I sense when I spend time with people living in long-term care, and it overwhelms me at times. I spend days at a time sitting observing and recording their activity and their wellbeing levels in Dementia Care Mapping. I get angry and sometimes I have to debrief to my wife and my colleagues. I get incredibly sad and moved by the pain, despair, and sometimes the lack of pain I sense, the deadness inside that many people live with in long-term care. Add a dementia into the mix and the person struggles to hold onto a sense of themselves as alive and present.

It is important to be clear about the difference between sadness and despair. Sadness is a feeling/emotion that tells us how much we love or value the focus of our sadness. Despair is an experience we have when we cease being active in the face of insurmountable difficulty, ie lose hope. Psychologically I think we defend against the feelings that come when we are confronted by this despair in long-term care so we switch off from the sadness and rage it causes in us.

Most of the staff are well motivated and kind if at times perfunctory in their care. They do their best with schedules that are tight and that restrict their imagination that might otherwise help them imagine another way of caring. These are good people, paid little and given minimal support with training and on-the-job reflective guidance. Yet we expect them to engage in the most insightful and reflective practice with the most challenging of care situations. We switch off from others’ despair and then we don’t think it is so bad being in care. We don’t feel sad or angry about it anymore and just accept it as “that’s the way it is and it seems OK”, until someone like Martin shows us that its not OK at all.

Enough. Can we each be alive in our own lives and model another way of being in tune with our own feelings of sadness (and feel them without anxiety) and so be unafraid of the sadness and despair of another so we can act with authentic caring.

It is extremely difficult for both family and paid caregivers with the competing demands and the intensity of caring. I wish I had a simple answer that works all the time. My experience is that it often takes a crisis for a person to be open to new ways of experiencing themselves. However I have seen a few leaders who create the “space” where a carer can safely and with validation experience their sadness and often their rage without discharging it inappropriately. It is a skill to support a work group to be able to function this way. Not at all easy.

In family life I think it is much more complex because you have family dynamics and attachment relationships that create multiple layers of emotional history that have an impact upon the caregiving son or daughter’s ability to feel the rage or sadness toward their loved attachment figure. In my experience with psychotherapy it can be successfully processed in the safety of therapy. But there is no reason siblings can’t help each other to process the rage and sadness they feel about their parent’s dementia or physical aging. Not all families can do this. And that is why therapy can be a safe relationship in which to do it.

I also think it requires time out away from the caregiving role to enable you to refocus and refresh your soul/self, and perhaps feel the cost of it on you. Experiencing one’s own emotions is the most self-caring thing we can do for ourselves as it enables us to be fully present then to the people in our lives, to find people who will care for us and have them in our lives and so be cared for when we need it. From my therapy work I would say the best strategy is to be alert to those moments when you don’t feel anything or not as intensely as you thought you might. This signals a defense perhaps and certainly time to step back inside and reassess what is going on within us.

If we can get through the rage and sadness we will find the pain and then the love we have for the person we have been moved by, and perhaps the love for other important people whose memory lives in us.

The managers and team leaders I have seen operate in this way are rare individuals who support their staff by sensitively encouraging them to be self-aware and value their own responses – not ignore them by pushing through etc. it means that they have at times had to send someone home and step in to complete a shift when someone is at the end of their rope and simply needs to leave the care setting to recover. She validates their experience by taking it seriously. This is not often done by managers I find. They are more inclined to ask their staff for an extra effort or a double shift. And this models to them that it is OK for them to ignore their own pain and push on, push it down, ignore it.

I have also seen managers ask a staff member who is not coping (perhaps noticed by being upset or by acting inappropriately toward a resident or about a resident) to come into their office and the manager to the utter surprise of the staff member asks them how they are coping, feeling, what is happening that has led them to act this way. The question invites sharing at a feeling and story level. In other words the manager validates their inner experience and gives it space to be present there in the office, in the workplace. Then they can problem solve, explore, work it through. This takes sensitivity, timing, and the gift of keeping it in proportion. In the following days the manager follows up and lets the staff member know the conversation is ongoing, she has not been forgotten and neither have her feelings, her perspective. IT also means that the manager must take seriously any problems that need to be addressed in the workplace that may have led to this difficult moment for the staff member.

By taking it seriously she signals that the appropriate action when you feel like this is to care for yourself, care about yourself by doing something that either comforts, heals, gives you rest or deals effectively with the problem – not implode, self-attack, repress, or discharge feelings over everyone around you. This is a powerful signal to send to a staff group – “I take your pain seriously – so should you. I care about you and your pain and I will care about you.” The flow on to residents is wonderful to see. There is a greater sensitivity to their pain because staff are not afraid of it and can be emotionally available to them.

As I said it is rare but wonderful when you see such a leader effective.