A Research Paper By Susan Haffner, Life Coach, UNITED STATES
Support for Informal Caregivers
One of the many things I have learned through my classes and experiences with ICA and peer coaches is the broad reach of coaching. It seems that coaching can be applied to practically anyone in any situation and life stage. While the diversity of potential clients intrigues me, I remain drawn to a unique group of people close to my heart, people who are caregivers. I have worked in the field of social work for over 14 years, primarily with older adults and their families. I also have personal experience as a caregiver for my grandmother I also had the unique experience of seeing my mother in her role of caregiver for my grandmother and how this role affected her and our family dynamic. I have coworkers who are professional caregivers, aides, and nurses at a care home. Also, I have worked with informal caregivers, the families, and friends of older adults who are caring for their loved ones at home. This variety of experiences has shown me firsthand how many people share the experiences of caregiving, and yet it has also shown me how different each person’s experience and challenges can be from another. Each caregiver has their own unique strengths which they bring to their caregiving role. Likewise, each caregiver has their own unique challenges and difficulties.
Oftentimes, informal caregivers find themselves suddenly placed in that role due to circumstances beyond their control. They may have very little time to make adjustments in their lives and often have very little to no training or outside support. Any caregiver needs support, however, it seems that these informal caregivers find themselves with the least amount of resources and the least amount of support due to the nature of their situation.
Nearly one out of every three people in the United States are caring for a chronically ill, disabled or aged family member or friend. Many of them need resources to learn how to take care of their family members, as well as themselves, in order to avoid isolation, burnout or illness. (1)
This is where I believe that coaching can possibly help to fill the gap. This great need as well as my previous experience is the reason why I have chosen coaching for caregivers as my niche. I have been very interested in how coaching helps facilitate growth with clients. I was interested to see how facilitating growth through coaching could blend with the resources and support provided for clients through my social work role.
What follows is an interview with coaching client “Samantha” who has been caring for her family member “Rose”. The interview was conducted with the permission of the client with the agreement that they remain anonymous, and therefore names used are fictitious.
Coaching Caregivers: An Interview With Coaching Client “Samantha”
Interviewer: Hello Samantha, how are you?
Samantha: Good, thank you. How are you?
Interviewer: Great, thanks. Thanks for being here today to talk about your caregiving role. I know from our previous conversations that this experience has really impacted you greatly. What does caregiving mean to you?
Samantha: Caregiving is a blessing and a challenge. I love my mom, Rose, and I’m so happy that she can stay in her home and receive the help that she needs there instead of going to a care facility. On the other hand, it hasn’t been an easy journey. Mom was totally independent and was doing really well living on her own, even being 80 years old. Then she had a stroke and went to the hospital. That’s when her world and mine really got turned upside down.
Interviewer: Did you ever see yourself being in the caregiver role prior to this unfortunate situation?
Samantha: No, I never thought of myself as a caregiver. I mean, I guess I did things. Like I might go with my mom to doctor’s appointments just to be a second pair of ears. My son would mow her lawn for her. But those are just like regular things, you know? I never would have called myself a caregiver. Even now, although I am with her every day, several times a day, helping her dress and getting her meals and all kinds of things…. It still feels strange to actually call me a ‘caregiver’.
Interviewer: Did you feel prepared to be doing the work you are doing now?
Samantha: No, not at all. There really is no preparation for this. I’m a mother so I’ve taken care of my kids obviously, but this is very different. I have been a businesswoman, I’m used to working hard and putting in lots of hours. I thought I could just quit my job and start taking care of mom, and like, all I needed was time to do it and I thought I would just naturally know how to do it all somehow. You know, it feels like it should be a woman’s intuition to do these kinds of things.
Interviewer: What do you think made it so challenging?
Samantha: Her life and mine changed so drastically in such a short amount of time. It was hard to adjust to such a significant change. I wanted to do it, I wanted to be there for her, and at first, it was just adrenaline I think that got me through because I knew I had to do it. After a while, that wore down and I realized that I really didn’t know what I was doing. After a short time, I started thinking to myself, what have I gotten myself into?
Interviewer: What support did you have?
Samantha: I had a lot of support in the beginning. In the hospital, there were doctors and nurses around. They were all very supportive and helpful. They were so kind and helped the family understand what was happening, and were very empathetic. The social worker there at the hospital helped us find a place where mom could go to do rehab and gave us a lot of resources. I had friends and neighbors who offered to bring meals and visit mom at the hospital. It made me feel really good to see so many people rally around us in this difficulty. These were the days of adrenaline getting me through. After rehab though, we didn’t have all the healthcare professionals around and family and friends tapered off. The social worker set her up with home therapy and got her a wheelchair and shower seat, stuff like that. Those things were helpful.
Interviewer: How was it for you after Rose was home from rehab and you took on that primary role of caring for her?
Samantha: I was really happy to be there for her, I was glad I was able to do it. But these kinds of tasks were not what I was used to. It was physically tiring, but also emotionally, I think.
Interviewer: How were you feeling, emotionally?
Samantha: It was like I was in this bubble, no one really understood and no one could really help because they just didn’t know. Friends and neighbors offered kind words, but it was only surface level, it didn’t really help because they didn’t really know what it was like a day in and day out. I felt like it was all on me. A lot of pressure. I wasn’t taking care of myself, I felt like I couldn’t. I just couldn’t take time for myself. I felt like everything else was too important, I kept putting myself aside and putting myself aside, until I got burned out. I didn’t know how to be otherwise though. I didn’t even know I was burned out at the time. It’s only in looking back that I can see that I was.
Interviewer: What would have been helpful for you at that time?
Samantha: Well, one thing is that I wish I would have realized that there were options to get more help for myself. I didn’t really think of myself as needing help. It was all about Mom. Of course, it should be about her, but what I didn’t realize then, was that it affects everyone in the family in different ways. I wish I would have known this before I got to the point of burnout. I think it may have been helpful to have someone to talk to who really knew what I was going through. I talked to some friends and church members, but if you haven’t been in the situation, you can try to offer encouragement, but you don’t always really know what is helpful. At the same time, I was terrible about letting people know how to help. I didn’t know how anyone could help me. So, instead of reaching out, I put on a happy face and told everyone I was fine. I guess in acting like it was all ok, I fooled myself into thinking it was all ok, and my very real stress just kept getting buried deeper and deeper. I wish I would have had a way to let that out so I could have dealt with it better.
Interviewer: Now that you have had the experience of being coached, what has changed for you?
Samantha: I really feel acknowledged, and I feel like my experience is valid and my feelings are legitimate. I don’t feel as guilty about not doing things good enough, or doing things the right way. I hadn’t realized before that there are other people out there who are going through the same thing. It felt really good to have someone focus on me and just me. Yeah, I talked with my coach about my situation with my mom, but the coaching was not about mom really, it was for me. I hadn’t taken time like that for myself in a long time. I didn’t realize how much I needed it. It also helps me to feel empowered. I do have the ability. I was able to get resources like home care aides to give me extra time. Coaching got me to a place where I was able to reach out, find and accept those resources. I realized I didn’t have to do it all on my own, and that was really a mindset shift for me.
Interviewer: Has the way that you care for your mom changed over time?
Samantha: Yes, it definitely has. Initially, I tried doing everything myself, and I didn’t realize the effect this had on me, Mom, or others in my family.
Interviewer: What are you doing differently now that you realize it’s not “all on you”?
Samantha: Now I am accepting help from others. For example, I previously was giving up a lot of things, like doing my yoga class, going to book club, and even going to my kids’ sports events. I always told my husband to go. I didn’t realize how much I was missing that. Now, I feel like I actually trust others to be with Mom, so that I can take time out to do those other things that are important to me. I originally thought, ‘oh, it’s just a yoga class, that doesn’t matter, I have to do this and this for Mom.” Now, I see how it’s not just a yoga class, it’s time to rejuvenate myself and decompress. I’m actually enjoying taking care of Mom more because I have some time away. So trusting others was really big for me.
Interviewer: You mentioned you are enjoying taking care of your mom more, how has this affected her care?
Samantha: I think she and I are both a lot happier. I hate to say it, but sometimes I would get short with her, frustrated that she was moving so slowly because I had so many things to do. I think that was the burnout phase. For me, things have really shifted from tasks to be done, to really caring. She likes being able to see other people and spend time with them, so it’s good for her socially, and it’s good for me socially to get out of the house and do other things too. I’ve also found that I’m more open to different ways of doing things and that those different ways are not better or worse necessarily, just different, and that’s ok.
Interviewer: It sounds like you have really grown a lot over the course of your journey. Is there anything you would want to say to someone who is just starting out?
Samantha: I would tell them to take care of themselves, it’s not selfish. You can only give from what you have, and if you become burned out and don’t have anything left, then you don’t have what you really want to give to the person you care so much about.
Interviewer: Thank you so much for your beautiful insights, and for taking time today to share your story.
How to Support Caregivers
Samantha’s insights into the need for self-care and support from others are echoed again and again in the literature and through organizations that support those with special illnesses. AAMDS.org writes the following on “How to Support Caregivers”
“Jane Hamilton and others suggest taking time to take care of yourself as well as your loved one. ‘Self-care is an investment in your good health, both physical and mental — it is shown to build resilience. Resilience is your capacity to respond to adversity, to bounce back from setbacks and challenges. Resilience helps you handle caregiving situations and sometimes, even to grow from them.’ Hamilton describes resilience as a bucket filled with your love and energy. ‘In caregiving, you are pouring out the contents of this bucket for the other person’s benefit. If you don’t refill the bucket, it will soon be empty. When your bucket of resilient energy is empty, the care you can provide diminishes in quality. Or you may become so depleted that you become unable to provide any care at all.’ “(2)
Caregiver stress or burnout can also be called ‘compassion fatigue.’ Some of the signs of compassion fatigue are the following: irritability, decreasing ability to function, pulling back from normal activities, canceling plans, increasing aches and pains, feeling bored and apathetic, fatigue, memory problems, and depression. (3) It can often be difficult for someone in this situation to be aware of what is going on and why. (3) This is where coaching can help by evoking awareness. Then once the caregiver is aware, they can work with the coach on the goals that they have about how to address these symptoms of compassion fatigue. “When things go wrong or when caregivers feel they can’t do one more thing, it isn’t a sign of failure or weakness. They just need to stop and take care of themselves. It is not being selfish to take some time for yourself. Caregivers cannot help others if they are not balanced.” (3)
There are many caregivers in the world both paid and unpaid, the assistance that is received by those they care for varies but is absolutely necessary for their health and wellbeing. We could not do without these caregivers, but it is important to recognize that they need care too.
Org website, an article entitled “Caring for the Caregiver”
“Compassion Fatigue: What Caregivers Need to Know” by Phoebe Ochman, Chapters Health System