Case Study: Multiple Losses as a Caregiver

This case study illustrates the complex experience, including ambiguous loss, of a client who lost both of his parents to chronic/terminal illness.

Related articles: Case Study: Working with Obsessive Compulsive Disorder, Case Study: Healing from Trauma as a Soldier, Case Study: DBT and Bulimia Nervosa.

Introduction

Disclaimer: This case study contains fictional names and modified details to protect the privacy and confidentiality of individuals and entities involved.

You may love your parents dearly, but are you ready to parent them as their caregiver if they become chronically unwell? John was confronted with this question when his five siblings (all sisters) and he began to talk about the needs of their parents. Their mother, Joan, had been experiencing worsening health for about seven years with the lung disease, bronchiectasis (a disease in which permanent enlargement of the airways causes chronic cough, mucus production, shortness of breath, and coughing up blood). Their father, Dave, had been diagnosed with Alzheimer’s disease.

The four siblings who lived in the same town as their parents had been doing a rotating “dinner run” (in which each person would bring dinner to the parents on their night) for a number of years, as Joan’s oxygen tanks prohibited her from standing near the stove, and Dave had never learned how to cook. Now, though, their needs were changing, becoming more intense. It was tricky to set up additional support for them, however, as Joan and Dave had always been very independent, and they remained fiercely so.

“They were slipping, showing signs of struggling to do basic, daily things,” says John, “they had begun to need more help, but with their desire to be independent, it took persuasion on everyone’s part.” In the end, the proposal put to the parents was that one of their children would just come to “help out” for two days a week. That someone was John. “When I realised they needed help, I stepped up to the plate”, he says, “I thought, ‘I’ve done really hard work in clients’ gardens [John is a landscaper], hefting around huge rocks, pouring cement all day in the boiling sun. I’ve managed teams of workers. How hard can it be?’ Well, it was the hardest thing I’ll ever do.”

Calming and losing mum

John reckons he began looking after his parents, with agreement from his sisters, about eight months before his mother passed on. By that time, Joan was seriously unwell, on oxygen 24 hours, seven days a week. Her airways had become so obstructed and weakened that what air she did pass through her lungs was not enough to fund a life of much activity, so ordinary events like a trip to the supermarket were exhausting, when even possible. She could go somewhere in the wheelchair (which, being independent, she didn’t like), but along with that had to come the ubiquitous oxygen tank. The latter meant that any expedition was strictly time-limited, given that without the flow of oxygen she would be dead in a few minutes. All of her children, including John, needed to learn how to operate the tanks, exchange the used one for a fresh one, and also learn how to operate the POC (portable oxygen concentrator, which ran on electricity/battery).

Loss of “sweet mum”

By this time, Dave’s Alzheimer’s disease had progressed to a point where, as John notes, “Dad just didn’t make sense anymore.” Joan had to face the grim reality, “I don’t have a relationship anymore.” John reflects how “It was tragic. She would cry to me, ‘We don’t have an emotional relationship. I’ve lost my lifelong partner.'”

As difficult as this severe ambiguous loss (learn more about this topic with the MHA course, Understanding Ambiguous Loss) was for Joan, the ramifications for John as caregiver were enormous. “Growing up,” he recalls, “Dad was the tough one. I was terrified of him. He would beat, kick, and pull the hair of my [older] sister if he thought she was out of line. Mum was the sweetest, nicest Mum you could imagine having. Then something happened; they switched. Mum became the mean one.” John realises that his mother’s unexpressed grief over the effective loss of her husband (“here but not here”) and her concomitant fear of being unwell with no one to care for her had caused her to react to his Alzheimer’s with a ferocity that took everyone by surprise. “She would have nothing but terrible remarks to say. She got mean toward the end [of her life]. Dad became the soft one.” John believes that his father’s consumption of alcohol, in concert with the Alzheimer’s, exacerbated Dave’s burgeoning lack of capacity. “Mum would get so frustrated with this. She was constantly correcting him. He would get this embarrassed look: like a six year old. [The really hard part] was the loss of the sweet Mum I grew up with,” John reflects.

Loss of son role; acquisition of mediator role

Thus John came to take on the role of mediator. “I would talk to Mum, asking her, ‘What difference is it going to make in a few months?’ I finally got her to be less tough. And you know, Dad never had a bad word to say about her. When my sisters would ask me what happened, I didn’t want to tell them the real story. I felt like, no matter how bad it was, someone had to be the rock, the man of the family, the stable one. But I was torn emotionally trying to come up with ways to calm Mum down. It was hard for her to grasp that concept. Each time [when his father would do or say something insensible or incorrect], Mum felt she had to set Dad straight. I know that part of it was fear. Her health was really failing by then and she would think, ‘I can’t take care of myself anymore and my husband is unable to do it.'”

As emotionally exhausting as it was to keep his mother relatively calm, John also has compassion for her situation. He notes, “I realise how much courage she had. She suffered so much. Nothing was working out. She did it [remained in her body for as long as she did] for us. She really did. She was smiling, but it wasn’t real. It was so sad.” Emotionally challenging, too, for John were the many visits to the emergency department. “Mum,” he recalls, “was close to death several times. I don’t think she realised. I tried to explain it to her. She’d talk about things after an incident, and I’d try to get her to recognise. I don’t think either Mum or Dad realised. But Mum really wanted to go. She was ready. There was no death anxiety for her!” Most of her children and, finally, Dave, gave her “permission” to go at her hospice bedside a few minutes before she died.

Without mum, dad needs round-the-clock care

When his mother died, John and his sisters realised that the need for caregiving had intensified. “Mum was like a babysitter,” he explains. Though she was frail in body, her mind was sound, and she could keep tabs on their father. “Dad was a handful.” They realised that, “We were going to have to have someone here looking after him all the time.” Already in the role of caregiver, John agreed to increase the hours he spent with his father – and the challenges began in earnest.

Loss of business/career status

“I felt like I couldn’t get sick,” says John. “If I had to be there for a medical appointment or to get a meal ready, come hell or high water, I would be there.” Dave needed to have multiple caregivers, because someone needed to be with him at night while he slept as well as during the day. “I would always arrive early for my shift so that the other caregiver could do a handover with me [explaining what he or she had done and what had transpired during the shift] and still get away on time. We had a caregiver named Josephine, and she was always 10-15 minutes late.” John was trying to march double time – keeping up his landscaping business as well as doing long hours with his father – so those 10-15 minutes, when Josephine was due to relieve him – were critical. “I ended up apologising to different clients for being late, but also explaining to them where my priorities were: with my father.” John states that his clients were “very understanding”. “They made it easy for me,” he says, “‘You just take care of what you need to do,’ they said. They were very gracious.” Still, John got to where the caregiving needs had become more than full-time. “I would go through whole weeks of having almost no sleep. I tried to keep my workers on, but [without having much time or emotional energy to devote to his business], I had to tell them, ‘I can’t promise you anything [in the way of job security]'”. By the end of his father’s life 18 months after his mother’s death, John’s landscaping business would be effectively ground to a halt: withered for lack of any sustaining business attention as caregiving demands intensified through the months.

Ambiguous loss is the big one

Experts on the loss and grief that comes with chronic and terminal illness make much of the concept of “ambiguous loss”: that loss of a person that comes, in the case of dementia and some chronic illness, when someone is still physically present, but not psychologically available (this MHA course explains what ambiguous loss and anticipatory and disenfranchised grief are, and shares which evidence-based theoretical models work within the context of missing persons counselling). For John, this aspect of loss was immeasurable. Early on in the caregiving, when both parents were still alive, John might pop into his parents’ home in the morning to make sure that they had gotten breakfast. Later he would come back around lunch and make sure that they were ok, and able to get lunch on the table without problems. He would arrive with a meal on his evening to do the dinner run; life seemed stable and predictable.

Unfit to drive?

With the death of his mother, all that changed. “I’d go to Dad’s and the house would be totally open – even the garage doors – and no Dad. He’d be gone. Neither Mum nor Dad were willing to use a mobile phone, so we had no idea where they were if they weren’t home.”

During that time, Dave’s doctors had declared that he was medically unfit to drive, so his licence was taken away. Dave spent many hours complaining to John about this, and trying to work out how to get his licence back. Ultimately, John recognised that “if that last bit of dignity or independence were taken from him, it would kill him.” He helped Dave get back on the road. John copped major criticism from his sisters for this, as they agreed with the doctors that Dave’s driving was not safe. John recalls somewhat ruefully, “Early on it was somewhat safe, but then it wasn’t anymore, yet Dad still couldn’t understand why he couldn’t drive. He was determined to drive, and we were determined that he shouldn’t anymore. But it was hard to stay ahead of him.” John recalls several times when “I’d talk to the neighbours” [to see if they had seen his father]. The girls would come over with a hot meal, and Dad wouldn’t be there to eat it. I guess I wanted Dad to still feel like he had his independence, so I let him drive longer than I should have.”

Beyond those worries, John sometimes had to negotiate between his father and other caregivers. One fairly young woman with “no personality” sometimes found that, when she arrived, Dave would run to his room and lock the door, refusing to come out. For all the caregivers, including John, getting Dave to shower was difficult as he was “set in his ways.”

Loss of relationship, loss of control

When asked if John experienced the typical caregiver challenge of staying emotionally engaged with the person being cared for while letting go – knowing that the person would be dying soon – his response was, “Absolutely. It was really hard. Dad just didn’t get it. One day I asked him if, theoretically, it were our last day together, would there be anything he wanted to tell me? He just didn’t get it.” John sadly realised that he would be unable to do any meaningful goodbye conversations with his father.

In other ways, too, John faced the balancing act of engaging enough to be a caregiver, one showing respect for his father, but holding that role enough at arm’s length to have a life. He had asked the other caregivers to call him if there was a problem, so he was on call all of the time, which meant that he lost control of his schedule. He was always concerned about having his phone sufficiently charged up to receive any emergency calls. And there was no question about not accompanying his father – and earlier, his mother as well – into the doctor’s office when they had appointments. “You had to go with them because they couldn’t remember what the doctor told them.” As his father’s health spiralled down, this became an increasingly large source of loss of time/control of schedule.

The period, says John, was an emotional rollercoaster, as his father had lucid days, but sometimes “he just didn’t grasp where he was. Did he not understand, was he in denial, or was he doing it [acting happy-go-lucky as if he had no cares] for us?” John observed that his sisters seemed similarly uncertain of how to regard their father’s mental status or presence; John noticed with chagrin that “My sisters sometimes would talk about him when he was right there – as if he weren’t.”

The problem of loss of relationship showed up in a substantive way for John in terms of his primary relationship. His partner had had to take care of her ailing parents several years earlier, so she knew what the caregiving journey was all about. “She wanted me to be there for my parents, like she was for hers,” recalls John. But giving John the gift of “permission” to do that came with consequences for their relationship. “There were many weeks where [with John doing night shifts at his father’s house] we only had one night to sleep together – and I don’t mean romantically. She would say, ‘Go be with them’. I’m sure it took some toll on us because after a year or so, I felt more like I was her flatmate than her primary partner. She was a sweetheart about it. It’s taken time, but we’re re-building.”

Loss of health, sense of self, and demoralisation

Not surprisingly, ongoing caregiving takes a huge toll on the health of the caregiver. Some mental health researchers claim that – especially among older caregivers – the risk of significant health problems and/or premature mortality is 63 percent higher for caregivers experiencing mental or emotional strain than for same-aged non-caregivers (Schulz & Beach, 1999). John would probably not be surprised to hear this. “I noticed after a while I had no appetite. I wasn’t sleeping, it was hard to eat. So many emotions would well up in me. I would just have to stop and cry. I was starting to fall apart, but I still had to keep a stone face. Should I join a support group for kids who love their parents too much?” John asks. “I guess I was always trying to please them. I felt like I didn’t live up to their expectations. I don’t know; maybe I made things hard on myself because of that. I think that it makes grieving harder when they go.”

We can wonder whether John might have suffered from the demoralisation syndrome – a sense of hopelessness and meaninglessness that may be a harbinger of depression – in the thick of the caregiving. John responds, “Very much so. You see people like Mum and Dad in their kingdom – they have it all, they work hard all their lives to raise a family, sacrifice having things for themselves – and then in a matter of weeks or months, it is just all stripped away. You realise you’re getting yourself into a depression [contemplating this]. This was happening before they died and has been happening since. Caregivers typically absorb some of the negativity. It was tough to get out of it. Maybe I didn’t get out of it; I just stopped thinking about it.”

Grieving the losses as a son/caregiver

How did John grieve these numerous and significant losses? For caregivers, there is always the need to pull back enough from the caregiving tasks to take care of their own needs, such as the need to grieve – and sometimes it just doesn’t seem possible to do. With over-the-top busy sisters and relatively small social support networks outside the family, John has had few avenues of support to count on.

Alcohol to assuage the grief

When asked how he has grieved, if at all, John reports a mix of adaptive and maladaptive strategies. First, he looks embarrassed. “I’m not proud of it. I used alcohol. It was the only crutch I had to cope. For a while, I drank a lot, just to cope with it, thinking about what was to come. It [the drinking] was something that gradually increased; what do you do?”

Reframing the losses as gains

More adaptively, John has repeatedly used a strategy of reframing his losses as hidden gains in order to be able to resolve and move on from them. He regards his whole caregiving stint as “a wonderful opportunity to spend quality time with my dad.” “I’m so fortunate,” says John. “That’s the way I try to look at it. Yes, there are bittersweet aspects; I try to keep it all in perspective.” While he acknowledges that “it was the hardest thing I’ve done in my whole life,” he also is quick to state the rewards of caregiving: “Every day was special in so many ways. I got closer to Dad than I ever had been. It’s like we were best friends.”

He regards similarly the inevitable storms of emotions which surged in him as incidents with both parents challenged his evenness of mood. At times, he says, “I wanted to lash out and scream at them, but then I’d realise it wasn’t their fault. I learned a lot about myself, and [also that] patience is a virtue. It made me be 100 percent responsible. I just had to take that attitude, or else it wasn’t going to work.”

In terms of other learning necessary to the act of caregiving, John could have rebelled against all the somewhat alien things he and his sisters had to learn in order to keep their parents alive. John reframed that work as a chance to learn new things: “like CPR [cardio-pulmonary resuscitation], medical things, and things about life and about letting go.” John reckons it was hard, but – again, in reframing mode – affirms, “I couldn’t have lived with myself if I hadn’t been there for them. They were always there for me.”

Doing the grieving, belatedly

John and his sisters repeatedly told each other before and after each parent’s death that that each person’s journey through grief is unique, and therefore must be respected by others whose journey may be different. Nevertheless, John seems surprised when he comments on his own way through grief that it mostly seems to have happened belatedly. “I’ve cried more in the last few weeks – with the sale of Mum and Dad’s house – than I ever did before. I didn’t grieve that much at the time [of his father’s funeral]. I now realise I have barely scraped the surface of my grief; for me, it’s only begun. I was denying what I needed to get out from within myself. Real men do cry. I didn’t do it then. There are so many different emotions swirling through me now. [Before he was able to bring them out as a grief reaction], “I found myself getting impatient with the girls, being insensitive and short-tempered with them. I’ve had to apologise a few times. I was kind of out of line.”

Getting help from things spiritual

A significant tool for reframing loss for John has been that of elevating belief and incidents to a spiritual level. Both parents had unusual occurrences just at or before their time of death. John’s mother was in the hospice and very close to death. All the family were keeping a bedside vigil. It was John’s turn to nip out and get dinner for everyone, so he brought back pot pies back for all his sisters and their husbands to eat. When he arrived back at the hospice, everyone told him that there had been “lights that came to Mum’s window: pretty, bobbing, blue-silver lights”. No one could figure out – on the tenth floor in the darkness of winter – what had caused the lights, but everyone saw them. Joan died almost as soon as John arrived back. Some of his sisters claimed that the lights reappeared right before their mother left her body.

John’s father suffered a seizure and went unconscious several weeks before his death. When Dave came back to consciousness, he announced – with a radiant look on his face – that he had been with Joan (whom he had stated how much he missed – sometimes multiple times a day – since her death). “I’ve been with Mum,” Dave exclaimed triumphantly, “and she wants me to come across NOW.” Dave didn’t make it that day, but he did die two weeks later.

John’s take on these two unusual events is open and allowing of transpersonal possibilities. “People that call themselves Christians [are ok with these things]. Dad wasn’t evil and his faith was important to him. When he experienced whatever it was in his unconscious state, it was far more than a dream. The stuff that happens at the end makes you wonder what’s on the other side.” John believes that his spirituality was enhanced during his caregiving period. “There wasn’t a day that I didn’t talk to God or send up a prayer,” he says. “Now, I don’t even think about God every day, but then it was multiple times a day.” Spirituality, for John, has clearly been a help in making sense of life events and sustaining him.

Low death anxiety, but no desire to be a burden

Perhaps his parents’ experiences with death and dying have informed John’s beliefs and desires around his own death. Watching his parents – both with low death anxiety – slowly die from their chronic illnesses has meant that John has taken the stance that “I don’t have a death wish, but I’m ok when my number comes up. I wouldn’t do anything reckless to make it happen. I’m not really anxious about it. I try to be a good person. When the time comes, I want to have the people around me that I love.” So dying is not the issue that is front and centre for John as a result of his caregiving. Rather, his fervent wish is not to live in pain, because “I would put a bullet through my head before I would allow myself to become a burden. After what I’ve gone through, I wouldn’t want to hang around being a burden. I would try to spare people that pain [of caregiving for me] as long as I could.”

Given everything that John has experienced – the losses and pain, the growth, and the deep (if hidden) rewards that caregiving has afforded him, his summing up of his experience may be resonant for many who have undertaken a similar journey to care for unwell loved ones. He is glad that he did it, yet also:

“I didn’t want to feel bad after they were gone that I could have done more. Giving them the care I could was the most important thing. By the same token it was the hardest thing. When I stepped up to the task, I was not aware of how it would be. It was the hardest thing I have ever done, and it changed my life forever.”

Questions for reflection and case analysis

Some of the questions posed by this case are below. Take a few minutes to read them and think about what you believe the answers should be before going on to the analysis:

• Name the losses which John identifies. Are there any which he does not name, but which seem significant for him?
• John seems to be able to hold a point of tension between seeing his mother as difficult – his experience – and having compassion for her – his psychospiritual aspiration. How would you help a caregiver-client who was able to hold only one side of the equation: either the side of seeing the loved one as difficult (thus experiencing little compassionate engagement) or the side of compassion (thus minimising their own emotional difficulties), but not both?
• John takes on the mediator role for his parents, mediating his mother’s frustration with his father. What, if any, potential pitfalls do you see in a caregiver doing this for their own parents?
• Joan had huge ambiguous loss with Dave in the grips of Alzheimer’s disease, but John experienced the ambiguous loss, too. Name some of the challenges from this source for John as caregiver.
• John names “seeing it all stripped away” from his parents in the context of potential demoralisation. How might you work with a caregiver-client with similar concerns?
• John identifies several strategies he uses to assuage his grief over his parents and also the losses he sustains in caring for them. Which strategies seem most effective, and why?
• Which strategies to assuage grief are maladaptive and how might they cause John problems later?
• John makes a number of statements, some of them contradictory to one another, about his experience of caregiving. Have a go at identifying the emotions and motivations – both named and implicit – which you can discern in his narrative. Overall, which do you believe to be the most significant? Why?
• What, if any, counselling work would be helpful for John? What might be the focus of the therapy?

Now let’s take a deeper dive into each of the questions.

Name the losses which John identifies. Are there any which he does not name, but which seem significant for him?

John first mentions the loss of several roles from his life. He talks about losing his mother in the way that he has always known her: as “sweet” Mum. Simultaneously, he loses the ability to be strictly in a son role, as he senses the dire need to mediate. He has substantial, if not overwhelming, loss of business while the caregiving ascends in priority. He experiences major ambiguous loss as Dave does increasingly inappropriate things (such as driving when he is no longer fit to drive) or shows decreasing capacity (such as when not being able to handle a goodbye conversation). John experiences a loss of relationship, both with his father, who is not emotionally present, and his partner, with whom he cannot often be physically present and a loss of control (of life and schedule linked to these). John’s health declines and with it, his sense of self, engendering a downward spiral into demoralisation: huge losses of health and wellbeing. These losses, in the aggregate, mean that, overall, the caregiving thrusts him into a daily regimen which might be life, but not as he knows it, so there is an implicit loss of certainty: an easy, predictable sense of how life was, or ought to be. It is perhaps this last category, bound up as it is with essential meaning and purpose for a person, which is most disturbing when it is disrupted, as it is experienced at the highest levels of being.

John seems to be able to hold a point of tension between seeing his mother as difficult – his experience – and having compassion for her – his psychospiritual aspiration. How would you help a caregiver-client who was able to hold only one side of the equation: either the side of seeing the loved one as difficult (thus experiencing little compassionate engagement) or the side of compassion (thus minimising their own emotional difficulties), but not both?

Psychosynthesis practitioners, working from a holistic, transpersonal paradigm, use psychospiritual developmental sequences which assert that the capacity to simultaneously hold two apparently contradictory notions in one’s same being is an encouraging sign of development. Thus, much therapeutic effort is directed toward helping clients validate both sides: that is, in John’s case, “My mother is tough on my father and difficult” and also “My mother’s behaviour is understandable as she is unwell and fearful of having no one to take care of her.” John got to that place of the “both and” on his own, realising that both propositions had merit, even though they seemed to contradict each other.

Mental health helpers working with caregiver-clients who are unable to hold both sides of a contradiction could assist such clients to explore the implications of experiencing each side. Being willing to do so typically evokes experiences and/or emotions that clients have been unwilling or unable to examine. Acknowledging, for example, that one’s own mother is “mean” as John does seems antithetical to creating a healthy, intimate relationship with her, yet by doing so, John is being true to his own experience, which bodes well for authentic relating. By adding in the other side of it – namely, “And Mum’s frustration is understandable in the circumstances” – he also manages empathy – that is, a comprehension of how her experience is valid as well – thus creating a much more spacious psyche than if he can only identify with one side or the other. When he can experience both her truth as well as his own, John can be capable of “right relating”: coming into relationship with “other” while staying in genuine relationship with himself. To be able to right-relate is to live in relative wholeness.

It goes without saying that caregivers who achieve this level of psychospiritual development will have superior capacity to tend to their clients in a compassionate manner, yet one which is self-respectful as well. Therapists can possibly do chair work with clients to help them put themselves into their cared-for person’s shoes. For more on this topic, read our article, The Fine Art of Compassion.

John takes on the mediator role for his parents, mediating his mother’s frustration with his father. What, if any, potential pitfalls do you see in a caregiver doing this for their own parents?

Children taking on the caregiver role for their parents soon come to see that the helping journey is fraught with obstacles. Will the parents accept the child in the new role, or will the child’s attempt to take it on merely be met with relationship-destroying resistance? When inevitable conflicts arise, will the child be able to truly mediate in an impartial manner, or will more damage be done to the relationships through the child favouring one parent and failing to appreciate the validity of the other’s stance? Will the caregiving child get sucked into the morass of hopelessness and depression that often accompanies chronic unwellness? Will the child have enough wisdom to parent his parents in healthy, adaptive ways? Will the heightening of tensions through possible role conflict mean that, ultimately, those presumably being cared for actually suffer abuse at the hands of their (desperate and unskilled) children?

In John’s case, it seems that, even in her serious illness, Joan was – to her credit – able to disidentify somewhat from her concerns and fears and re-appraise her reactions to Dave, so the mediation seems to have been at least partially successful. The greater peril in this case seems to have been to John himself, or rather his mood, which suffered significantly as he emotionally absorbed the sadness and intractability of his parents’ illness. Because John, too, was able to disidentify from his intense emotions, he was able to contain urges to lash out, either verbally or physically, against his parents when setbacks occurred. Not all parents are so lucky, and situations such as John’s with his parents are fertile grounds for elder abuse.

Joan had huge ambiguous loss with Dave in the grips of Alzheimer’s disease, but John experienced the ambiguous loss, too. Name some of the challenges from this source for John as caregiver.

As noted earlier, John was very aware of having taken on the physical as well as emotional care and protection of his father. While his father possessed a driver’s licence inappropriately, John had responsibility that he could not fulfil, as he did not have control over his father’s mobility. The term “ambiguous” captures well the foggy nature of such situations and decisions arising therefrom: that is, “Is it better care to allow the person to drive, thus preserving independence – a vote for possible psychological wellbeing – or is it better care to remove the licence and deal with the resistance to limiting independence – a vote for physical safety, not only of the demented person, but also for others who might be harmed? The angst over decisions like this is always a huge challenge for caregivers and John was no exception.

In terms of John’s own wellbeing and sense of closure, the realisation that he could not have a meaningful goodbye with his father, nor in fact, many deep conversations at all, is another manifestation of ambiguous loss. He experienced his father in the typical way that caregivers do those with dementia: “here but not here”. Indirectly, most of his losses, and particularly his sense of hopelessness at times, probably stemmed from the challenge of dealing with ambiguous loss.

John names “seeing it all stripped away” from his parents in the context of potential demoralisation. How might you work with a caregiver-client with similar concerns?

John felt sad to see the people that gave him life and brought him up, people he esteemed as the authorities in his life when he was young, be so reduced by illness to shadows of their former selves. He acknowledges hopelessness and demoralisation. John talks about these feelings just after wondering whether he was “good enough” as a son or whether he fell short of his parents’ expectations.

When there is demoralisation, the therapeutic work is about inspiring hope. The question is: what might John hope for? A therapist might work with John about the “story” he seems to have running, helping him change the narrative from “not good enough” to a fuller understanding of the contributions he has made to his parents and to his life. As John re-writes the script of his life, he can come to appreciate how it is not all stripped away. His parents’ legacy lives on in the form of the ideals, aspirations, and successes of their children. Moreover, as John has a spiritual holding, he may be able to look to that level of being to find meaning in his parents’ – and later in life, perhaps his own – suffering from ill health. As the work to infuse hope progresses, John may be helped to see other reasons to be hopeful, other ways to infuse himself with a sense that life is ok and so is he, despite the reality that his parents became sick and died, and one day, he will, too.

John identifies several strategies he uses to assuage his grief over his parents and also the losses he sustains in caring for them. Which strategies seem most effective, and why?

John identifies two chief strategies for moving on from his grief which seem to be adaptive for him. First, he re-frames many of his frustrations as “opportunities”. For example, time as a caregiver was not wasted; it was a chance to spend quality time with his father and to become his best friend. The period was an opportunity to learn many new things: medical procedures, things about life, patience, and intrapersonal things. Similarly, John’s comments about the unusual occurrences at or just before his parents’ deaths seem to indicate a re-framing of sorts. By taking the incidents to a “spiritual” level – that is, allowing the incidents to take on a spiritual significance – John can entertain hope that his parents still live, albeit in non-physical realms. He can feel hopeful that their deaths are imbued with meaning. The capacity to reframe and the concomitant ability to elevate incidents to a spiritual level in the search for meaning are potent tools for moving through grief.

Which strategies to assuage grief are maladaptive and how might they cause John problems later?

John identifies his use of alcohol as maladaptive, and he is probably right about that. While alcohol may temporarily anaesthetise a person against the pain of loss, ongoing use leads to dependency, which leads to addiction and a re-wired brain. Participants in alcohol and drug rehabilitation programs are sometimes dismayed to realise that, after all the hard work of giving up the substance, they still need to confront the pain from whatever they took up the substance to avoid. Were John to continue drinking to avoid doing necessary grieving, he would be likely to experience not only problems with alcohol misuse, but also, unexpressed grief over time becomes complicated grief and therefore more difficult to resolve.

John makes a number of statements, some of them contradictory to one another, about his experience of caregiving. Have a go at identifying the emotions and motivations – both named and implicit – which you can discern in his narrative. Overall, which do you believe to be the most significant? Why?

John says multiple times that his stint of caregiving was hard: “the hardest thing I’ve ever done” or “will ever do”. His body backs up that statement through his experience of reduced appetite and struggles with sleeping. Yet he insists that he do the caregiving, not wanting to realise later that he could have done more. These statements seem to symbolise a motivation of dogged duty – even when that is hard – and guilt as well. The statements exclaiming over the opportunity to become his father’s friend and to receive all the learning show openness to transforming his experience and an appreciation for what his caregiving could be about, if he were able to hold that perspective.

John’s comments about feeling like he would put a bullet through his head before he would put someone else through caregiving for him are perhaps the most telling of all. They speak to the emotional and physical exhaustion, the undermining of wellbeing, and, perhaps, the shame and loss of dignity he believes he would experience if he were to be sick enough to need to level of care that his parents did. It is probably these – the statements not even talking about his parents – which give us the strongest clues to the overall tenor of the experience for him. Caregiving for his parents was a necessary, sometimes rewarding, but ultimately, supremely challenging endeavour.

What, if any, counselling work would be helpful for John? What might be the focus of the therapy?

John states that he has only recently, since the sale of his parents’ home, begun to connect with his grief at their passing. He states that he has “only scratched the surface of it”. Given that delayed grieving often leads to complicated grief, it would be better for him to do it as soon as possible. He acknowledges that “real men do cry”, so he seems willing to open himself up to all the emotions that may be present: willingness that augers well for therapeutic outcomes. While the focus of the therapy should be on this grief, it is possible that the grief work will be the presenting issue leading, as the therapy deepens, to a focus on John’s sense of himself and his stated need to get others’ approval. John’s sense of himself may not be as robust as it could be, given his stated fear that he somehow fell short of meeting his parents’ expectations.

Secondarily, John may be aided by looking into what his next type of work will be. Will he start over again in landscaping, or is something else calling to him to do?

This article was adapted from the Mental Health Academy course, Case Studies in Loss and Grief from Chronic and Terminal Illness. This 3-hour course – a case study companion to Loss and Grief from Chronic and Terminal Illness – provides an in-depth look into several case studies of chronic and/or terminal illness where losses have been incurred and needed to be grieved.

Related articles:

• Assessing and Treating Prolonged Grief Disorder
• Disentangling Painful Emotions
• Why Addiction Training is Essential for All Mental Health Professionals
• The Five As of Healing

References

• Schulz, R., & Beach, S. (1999). Caregiving as a risk for mortality: the caregiver health effects study. Journal of American Medical Association, 282 (23), December 15, 1999.