Volunteer Caregiver Guide Lucy Di Cesar on the grieving process, the value of open dialogue and care circles, and the role of guides in preventing caregiver burnout
“It hurts me that a lot of caregivers slog through it by themselves and it’s so hard. We are not islands and we need to help one another. Our healthcare system is probably not the best but I think there are ways we can help each other and services we can tap into.”
By Devon Phillips. As a volunteer caregiver guide, Lucy Di Cesar has been an enthusiastic participant in the research project led by Dr. Robin Cohen entitled, “Empowering Family Caregivers to Maintain Their Own Wellbeing.” Having been both a family caregiver herself and a guide helping other caregivers, Lucy advocates for the provision of concrete services tailored to caregivers, including active listening as well as the sourcing of specific services, as a way to support caregivers in the months preceding and following a loved one’s death.
Q: I understand that you served as volunteer caregiver guide for the research project entitled, “Empowering Family Caregivers to Maintain Their Own Wellbeing.” How did you come to be involved in this project?
A: I was taking the course at the Jewish General Hospital to be a volunteer on the palliative care ward. Dr. Robin Cohen was there and she asked if anybody would like to volunteer to take an additional course to become a guide for the caregiving program so I offered, a few of us offered as a matter of fact. After that six to eight week course, the caregiver’s project was launched, this was a research project. It started in about 2013 and I was involved from the beginning and just up until now when the research portion completed. We followed caregivers in the Montreal area for a few months before their loved one died and in bereavement for anywhere from three to six months.
When Robin introduced this project I had an ah-ha moment! I thought, “This is wonderful. This is so important.” I had helped make sure my mother did not burn out caring for my dad. I helped get her services even though she struggled accepting this. She did not want people in the house, but when she accepted more help, she was able to keep my father home for a longer period of time. This was such a good mix for all of us− we were all helping each other. It’s important that we jump in and see if we can help whoever is taking on the brunt of it. And sometimes help can just be somebody to listen to you.
Q: Why are caregiver guides needed?
A: For most people, caregiving can be hard. While it’s a way of loving the person who is ill, it does take a lot of energy. There is also anticipatory grief going on because the caregiver knows their loved one is failing and things are moving towards the end. It's an emotional downward spiral at that point and caregivers often don’t take care of themselves. When you are a caregiver, you are just doing the work at hand and you don’t have the extra time to think beyond that little box you are in.
We, as caregiver guides, are there to support them and encourage them. We try to help caregivers find a way to change their environment−go for a cup of coffee, go and listen to some music, take a half hour and have somebody sit with the patient, try to do something that is just for them. These are little things that might not mean a lot to people who are just living a normal life, but for people who are caregiving, it’s a removal from the vortex that they are in, the difficulties they are experiencing.
Q: What kinds of things did you learn in your training about being a caregiver guide?
A: The most important thing is that you can’t rush the grieving process. A lot of people experience waves of grief. Just when the person thinks things are getting better and settling down, then another wave comes and they don’t know where it come from. It can be the smallest thing, like putting their loved one’s clothes away, that triggers it. And you just go back down. This surprises the caregivers because they felt like they were at a stage where they were ready to move on. The stages of grief are very different for everybody and when those waves come, we help them to ride them, and let them know that it’s perfectly normal to go through this. We are taught active listening.
You know the first month or two after your loved ones die, you are in a bit of a fog and it’s a difficult time to be making big decisions. You are often involved with paperwork, and this can be a good distraction but at the same time, overwhelming. Often once you get through that paperwork, then you start grieving because until then as a caregiver, you are just doing, doing, doing. When the paperwork has been completed, the caregivers may finally allow their emotions full rein to begin healing through their grief journey.
Q: As a caregiver guide, were you meeting with caregivers in person? Were you talking on the phone? How did it work?
A: Both. There were occasions where the caregiver could not leave the patient so we would go into the home. There were occasions where they did not want to meet in the home because they needed the time away from the patient to be able to express everything. These meetings gave them the opportunity to be able to speak about things that are very important to them that they couldn’t necessarily tell a family member. We are strangers and we have this confidentiality agreement so whatever caregivers say to us, it stays there and they are able to unload what is going on.
Q: Can you give me an example of the kinds of things a caregiver might need to talk about to help them cope better?
A: They might say, “A family member is driving me nuts. A family member thinks they are helping, but they are not.” It’s just a lot of little things and sometimes just unloading this information really helps, even though their situation doesn’t necessarily change. We talk with them about it, maybe put some humour into it, find a way around it because family relationships are very intricate and everybody has their level of comfort. In a palliative situation, everybody is struggling in their little corner and the guide works with the caregiver to say, “Well, let’s see if you can do things differently so you don’t have to encounter this.” So it’s just another set of eyes looking at the situation. We listen, we talk together, we do not offer solutions. We ask, “What do you think? What would this do for you? We are not psychiatrists. We are not social workers. We just speak with the caregivers - we support them.
Q: How would you describe the role of the caregiver guide?
A: I’d say the guide is someone that you can bounce off your ideas, your hurts and pain, like a sounding board. One of our caregivers felt like everything that was happening in her life got unloaded, boom, and then it was over and she could return to her difficult situation.
It’s important to validate a person’s feelings. We tell the caregivers, “It’s okay to feel sad. It’s okay to be hurting.” If they are in that place too long, they may be stuck in a complicated grief process and we would consult with the team about whether our sense of the situation warrants further intervention and, if so, we would ask the caregiver how they would feel about seeking professional intervention.
One particular caregiver had been doing so well and then all of a sudden he went into a deep depression so he sought out psychological help. We continued meeting throughout and now he is so much better. He’s back to himself, going for walks, doing his art. He is an artist and we were happy to hear him say, “I can draw again.”
Q: It sounds like the guides provide a wonderful neutral place for caregivers to take their feelings, a place where there are no repercussions.
A: Exactly. And no one is telling them, “You have to go see the doctor”; no one is pushing them to do things. It’s an open dialogue where we are saying, “What do you think? Do you think you should go see the doctor? Does your loved one need extra care?” It’s not our place as guides to impose anything on the caregivers.
Q: What was the experience of being caregiver guide like for you?
A: It’s rewarding. We are taught to listen, just be present, not absorb it, just let people say what they need to say. You become intuitive about what the needs are and if you don’t have a solution, we talk about our concerns at team meetings. When we bring our concerns to the table, it’s amazing how many solutions come up, so then we can call the person and say, “What do you think if we try this or that?” The input from the team, made up of the other guides, Robin and the project coordinator, was so wonderful. We helped each other a lot.
Q: Are caregivers getting the support they need in our society? Are there enough resources?
A: Not enough support and definitely not enough resources. But there are some resources, and if the caregiver is unaware of them, we can make them aware, so then he or she has the choice to say, “Yes I want these people in my home, yes I want extra help", or, "I’d rather do it myself”. It’s always good to know you have options.
Q: What does caregiver burnout look like and what are the consequences?
A: Not sleeping for days at a time- the caregiver is just putting one foot in front of the other, no longer eating or sleeping properly. They are just functioning on autopilot and it’s very difficult to keep going on like that. And there are risks involved. When you are too tired, the medication is not given correctly or the care is not what it should be, there are so many implications with burnout. And even if it’s not burnout, you are still burning the candle at both ends. We don’t want to see the caregiver crash after the person passes with still so much to do and go through.
Q: Why do you think our society does not value caregivers and does not support them more?
A: A lot of time we feel like caregiving is our job. If it’s our dad, we feel that because he has done so much for us, we have to give him back 200%. But on the other hand, a lot of us caregivers are still working, many have children. There are so many aspects to our lives, so we try to do the best we can but we may burnout from trying to push too hard. This something we want to avoid so the guides can buffer the situation. We listen and we say, “You are doing too much, maybe you need help, maybe you want to ask the CLSC, you might want to see if NOVA can get involved.” We try to find resources for them. Oftentimes, nobody tells you that those resources are out there.
Q: My impression is that caregivers are almost an invisible population out there and yet the backbone of care. Am I on track with this perception?
A: Sure you are and nobody is paying caregivers, right? They are caregiving out of love and charity. Caregivers are siblings, parents, spouses, children. There is an emotional component that is so important, and for some people, it’s hard to accept help. One particular older caregiver was looking after her husband and she said, “I am the only one who can do this for my husband.” You can understand that mindset. But it got to the point where she just could not do it anymore. Then she said, “I need help.” So then we said, “Let’s find what’s available for you.” And this was the best thing for her. It gave her a little bit of reprieve in the moments when she really needed it.
The guides can’t make everything perfect but we can help you understand that there may be things that you can tap into. I think the biggest thing is the care circle which allows people into your life.
Q: What is a care circle, and how do you establish that?
A: It’s one of the first things we do with caregivers. We ask, “Who are the people around you that you can ask to give you a hand, to sit with the patient? Is it a next door neighbour, a sister, brother, cousin, good friend − someone you trust who can let you have an hour to yourself?” They become your care circle and caregivers should not be shy to tap into it. People often say, “Let me know if there is anything I can do to help, just call me.” Yet people don’t call. We encourage the caregiver to give them a call and if they are not available, all they can say is no. Sometimes it makes a difference in the caregiver’s life – just being able to go for a coffee.
Q: Was this project associated with success stories? Did you feel the guides really helped the caregivers take better care of themselves?
A: Absolutely. I met with a caregiver whose spouse had died more suddenly than she or the doctors had anticipated. After the funeral, she found herself alone and still in shock with deep feelings of abandonment that appeared almost childlike. She was in a very difficult place and at such a loss. As we spent time together away from her home, eating dinner, walking and talking, she felt free to speak from her heart without reservation. She felt the impatience of many around her who wanted her to snap out of it. We understood together that the grieving process could not be rushed. It remains personal and different for each person. Within a year, I saw her perspective turn around and once again, she became vibrant and excited about life. I felt she had become a stronger version of herself impressing me with her resilience. My role in that difficult first few months after her spouse's death was to accompany her on her journey by listening and being empathetic. She has done so well for herself −she still amazes me.
Q: We are stronger than we think!
A: We are! I have followed four caregivers and it has impressed me that they don’t know their strength until they are faced with bereavement. When they come out the other end they are surprised and often say, “I cannot believe I did this on my own.”
Q: Now that the research part is complete, do you hope this project will continue?
A: For sure. We are in the process of working on continuing this project right now. Robin has been instrumental in this. We are working on the actual framework and how to set it up with the organization, Hope & Cope. We need to recruit a whole lot more guides because once the requests start coming in from caregivers, we want to have the people in place ready to go. Hopefully we will get the green light for it.
Q: Sounds like the program has been successful. What do you think the caregivers you were teamed up with would say?
A: I think the program has been a success. Once we finished our service, the project research assistant interviewed them at the end and I don’t think she had one that was negative about it. They were all encouraged by the program.But you know we do not want to take any accolades for this. The caregivers are doing the heavy lifting themselves. The guides are helping them, perhaps by presenting options, but we are not telling them how to navigate it. You cannot be pushed through the grieving process, you have to actually go through it.
Q: In Quebec, supposedly there is going to be a shift to people at the end of their lives being cared for at home whenever possible, rather than in hospitals. That might mean that there will be more caregivers and thus more support needed for them. I hope the support will be there.
A: For the most part I think that patients want to be in their own environment. They don’t want to be in a hospital setting for as long as it is possible, so it makes sense to put the money into keeping the patients in a place where they are happier and with the people they are happiest with. If we get resources and support services for homecare and for caregivers, then that’s an ideal situation, it’s win-win, right?
Q: If someone reading this would like to become a caregiver guide, who should they contact?
A: Dr. Robin Cohen at Palliative Care McGill (robin.cohen [at] mcgill.ca)