Participants’ journals focused on the challenges and hopes that they experienced daily, and also described what fostered their hope. Participants did not always tell a linear story with a beginning, middle and end; some focused specifically on daily activities and tasks, or fully on the state of the care receiver. Others structured their journals exactly according to their daily hopes and challenges; others were a mix of events, plans for the near and distant future, and the emotional experience. From the events, experiences and evaluations in the participant journals, the following four themes emerged to characterize the journals: hope, practical and emotional challenges, self-care strategies, and the emotional journey. We first illustrate how hope was described and experienced by the participants, followed by the remaining three that are interconnected with and influence hope, and vice-versa, and address the specific aim of what influences their hope contributing to the description of the event and experience.
Hope, evidently, was one of the main themes that came through in the participant journals, as a significant goal of the journaling process was to document what gave them hope each day. Hope was described in many different ways; caregivers mentioned concrete, specific hopes they had for the immediate future; they described what hope meant to them; they shared what gave them hope; and they shared what took away their hope, or when they felt hopeless. One of the most common phrases that started or ended a journal entry was, “I hope tomorrow is better.”
Participants had specific hopes related to wanting the care receiver to feel better the next day, to not be in pain, hoping the weather is nice, hoping that therapy goes well, hoping for sleep and rest, for example, “My hope is that I can sleep tonight,” and, from another participant, “My hope for tomorrow is that [patient] will be stronger and eat better.” At the same time they wrote about a tension that often existed with their hopes, as “hoping against hope.” As one participant wrote: “To hope against hope is hoping even through there is no good reason to hope (which is where we were at today) is the kind of hope we have. No more can be done for my honey.” “Hoping against hope” is the tension between hoping for a cure for their family member and the recognition that this is no longer a possibility. At the same time they had other types of hope. Hope for these participants was also a choice and a mindset. Many women wrote about how they tried their best, despite extremely discouraging circumstances, to look for hope each and every day in the simple things, and in focusing on the present. They chose to look for the positive aspects of each day and also resorted to good memories of the lives they had lived with the care receiver. Choosing to be hopeful was not easy, and part of this mindset also involved acceptance of their circumstance, and striving to find a new ‘normal’ amidst so much uncertainty. The new normal and acceptance is described here by two participants:
“Now we have adapted to the new normal. We are still optimistic… I guess we both know the odds are not in our favour but it is hard to do anything else but push into it and hope for the best.”
“I know that we have changed our expectations of what is possible for our family and that’s ok. I think that my family has all adjusted to what our new “normal” is and we are trying to embrace our opportunities right now.”
Participants described several influences on their hope: temporal circumstances, social support, spirituality and faith.
The specific, temporal circumstances of each day could foster or take away from the participants’ hope. Caregivers’ levels of hope and their general mood were heavily dependent on the mood of the care recipient and the care receiver’s state of health. Good days were more hopeful days. The weather and environment played a role in the caregivers’ perceptions of their hope, as one participant shared, “Hope, well it was hard to find any today except that the flowers are blooming beautifully, and that is something.” Factors that detracted from the participants’ hope were dreary weather, stressful travel and medical appointments, family conflict, and the declining health and well-being of the care receiver. One participant described her stress with driving and how she felt alone: “I feel alone even when people are here! Nobody really understands! [Care receiver] is sick. I need to lift him into the truck… I am scared of getting him into the truck tomorrow to go to [location of appointment].”
Social support was found to be a key theme that fosters hope, whether this was support from family members, friends or health professionals such as doctors and nurses. Many caregivers mentioned how celebrating an occasion with family members, seeing their grandchildren, having extra support from their sons and daughters or their siblings, brought hope to their day and to their lives, for example, “Our friends and our health team give me hope for tomorrow… my support if & when [care receiver] needs them or we need them.” Loneliness, one of the emotional challenges of providing end of life care, can be combated through this social support. It must be noted that not all participants had supportive, positive family relationships which at times was the cause for additional strain and fatigue beyond the immediate caregiving experience. An example of this is one woman’s experience with her grown children: “I guess my nerves are frayed – I don’t seem to get too much support from my family – and I don’t have anyone to talk to and cry on their shoulder – my support person is dying – where is my hope?” Negative relationship dynamics took away from their hope.
Some participants also found hope through their faith, and the belief that their fate was in the hands of God, or something bigger than themselves. They relied on prayer to get them through the day, and attributed their ability to cope and get through each day to their faith: “I must admit there are times when I question why so blinking much is on my plate and I have the faith of Job. However, even that tiny bit will get me through each day when I’m at a low ebb.” This was not always the case, and several participants could not reconcile God’s role in the suffering their family was experiencing, such as this woman: “I am not accepting of this – it can’t be God’s will – as he/she is supposed to provide love not pain – but again maybe even God has chosen to vent out his/her frustrations and I was handy…”
Practical and emotional challenges
Participants extensively documented their various challenges in their journals, which were both practical and emotional. It was a challenge for participants to deal with the health struggles of the care recipient, and to complete the physical tasks of caregiving. Caregivers experienced the lack of time and energy to do everything they needed and to care for themselves. Family dynamics presented challenges, such as feeling controlled by their partner or feeling undermined and unappreciated by their children. These examples link back to the connection between hope and daily specific, temporal circumstances. An overarching challenge for the participants was the uncertainty, which presented a backdrop to every experience. Family caregivers realized that they, too, are vulnerable and have limitations; that they are not in control and cannot fix things on their own. This uncertainty was always present and could coexist with hope.
Participants employed multiple self-care strategies to cope through some of the challenges and emotions of the caregiving experience. These included physical outlets, such as eating well, doing yoga, and running. Many participants kept busy in order to cope, and socialized with friends and family, such as going to dinner or for coffee. Some sought professional support such as counselling, and set goals for themselves. This links back to the connection between social support and hope. Participants also made a conscious effort to focus on the present and what they were grateful for; some allowed time for reflection in the form of prayer or journaling, supporting the notion that hope could be a choice and a mindset.
Participants wrote considerably about the emotional aspects of the caregiving experience, and it was evident that numerous emotions were at play throughout their journey, emotions that overlapped and sometimes contradicted each other. The emotional experience of the participants included fear, worry, sadness, guilt, helplessness, anger, loneliness, empathy, love and gratitude. Participants were generally fearful of the future, and of the uncertainty of the state of their loved ones and their lives. They expressed worry about specific things, such as how the care receiver would respond to treatment, the stress of travelling to medical appointments, the concern and guilt they felt anytime they were away from the care receiver. They expressed sadness around missing the way life used to be and the way their loved one used to be, and in imagining life without that person. Fear could detract from hope, while the love they gave and received contributed to their hope. The participants’ emotional journey speaks to the co-existence of hope and hopelessness, and strength and weakness, in the caregiver experience, and how hope is a multi-layered phenomenon. Participants continued to hope and chose to hope despite knowing there was no cure for the care receiver’s illness.
Frank [42, 44] writes that a story can only be told in the context of a relationship, a dialogical relationship between the teller and listener. The researcher or analyst is a part of the relationship that a story asks for, as a listener and a witness, and any methodology we use must follow the ethical commitment of living and telling stories for the other, as “to tell any story of suffering is to claim some relation to the inter-human” (42, p. 180). We now present the story that is the outcome of the narrative analysis of the journals reflecting the themes presented above. It is entitled ‘Hope against Hope’ to depict the type of hope that many of the participants were experiencing while providing care. The bolded statements correlate to Table 1 showing how the themes in each of the categories are represented in the narrative.
Hope against hope
The initial cancer diagnosis was just over a year ago – wow, we have been through a life-changing journey. We have both journeyed through diagnosis, surgery, treatment, recovery, myself going with him to every appointment, going back and forth from the city to home. A few weeks ago we received bad news that was hard to take in. When we saw the oncologist, he left us with the clear message that we are on a different path now that the cancer is back. My partner is not showing emotion and says he accepts it, but I am feeling anger, sadness, and fear. I am still shocked with the soberness. I know that the Doctor and his team are trying, but it is hard to know what to feel. I am scared to get my hopes up.
Often, I am too tired to think about how I feel. Starting this journal has turned my focus within and that journey with self has been a bit rough. The busyness of life has not given me enough time to process all of what we've been through this past year. I am writing this at midnight as it seems to be the only time for me. I have no life outside of cooking, cleaning, laundering, driving into town for medical appointments, together with the constant focus on how my partner is doing. I sometimes feel very lonely living in this little ‘world’ of ours. Although receiving company is good for us, sometimes I don’t want to see anyone.
I try to be the best person I can be, but sometimes it is hard to find the strength to do that
.I am looking forward to seeing an old friend for coffee tomorrow, who has kind of been through the same thing. It will be good to talk to her. Our son is coming down to take care of my partner so I do not have to worry. I still feel guilty though, for leaving him. But I know I need time for myself.
I am having more difficulty now than I have over the past few months. My mood depends on how my partner is doing. I am tired; I need a break.
I am losing my grip on my future; the unknown scares me and hangs over my head
. Everyone says to live one day at a time but it is hard when your mind is racing with all the things to do, in addition to being constantly reminded that there is no hope; it is overwhelming.
My support person is dying - I just want to be able to fix things and that’s not going to happen
. I want my old life back. I am trying to adjust to a new “normal” but it is hard to find the balance; I know I am very vulnerable right now. My feelings are raw.
The kind of approach I currently have is
“to hope against hope”, meaning you keep hoping even though there is no hope for a cure
. I try to focus on living life to the fullest more than on dying. I am committed to my partner and he won’t go through this alone as long as I can dare these sore tired feet to carry me that extra mile. I need to be strong for him. Somehow, even a tiny bit of faith will get me through each day when I’m feeling low. Sunny and warm weather helps our moods. I am grateful for my family and friends. When there is laughter, that gives me hope. When we see our beautiful grandchildren, they give me hope. I guess I need to look for hope every day because it is the one part of the disease that I can control, unlike how the cancer progresses – that is a challenge as we wish we could do something about that the most.
But I can choose to hope. There may be light at the back of the tunnel yet – every once in a while it sneaks in when I’m not looking.