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Writer's pictureJeremy Smith

The long goodbye: The harrowing impact of a terminal diagnosis on a family

Updated: 5 days ago

This post is adapted from a preclinical grad school assignment, "The biopsychosocial-spiritual impacts of a terminal diagnosis and caregiving: A personal reflection."


The dementias, including Lewy body, vascular, frontotemporal, and Alzheimer’s dementia, represent a quintessential family systems therapy issue. Despite advances in our understanding of dementia pathology and progress toward treatments, dementia patients and their families continue to face a progressive and terminal illness, often over a prolonged period. Pharmaceutical interventions can address the patient’s symptoms, including cognitive decline, psychosis, anxiety, and depression, but only preserve functioning and quality of life for a limited time, and although individual psychotherapy can ameliorate affective symptoms for at-risk and prodromal patients, there is little evidence for its efficacy over the long term as the patient declines. Meanwhile, the patient’s family must manage financial demands, changes in roles, responsibilities, and family dynamics, in addition to coping with pre-bereavement and grief for the loss of physical, emotional, and sexual intimacy (for the spouse) with their loved one. Additionally, in the United States, where insurance and other financial issues determine the level of care received by the patient and their family, caregiving responsibilities often fall upon one family member until the patient’s death or consignment to a nursing home or end-of-life facility. These caregivers experience high rates of burnout, subjective burden, depression, anxiety, and other symptoms of traumatic stress. Familial caregivers often lack formal training in supportive care or coping strategies and, in addition to stress symptoms, are particularly subject to feelings of guilt, grief and anticipatory grief, discomfort with the patient’s symptoms, and fears of inheriting the patient’s condition, and are often the target of emotional and physical abuse as the patient’s condition declines. They may experience ambiguous loss for their own identity, dreams and ambitions, and for the increasing unfamiliarity of the patient as the disease progresses. Familial caregivers also face role alterations in their own marriages and families, fears of incompetence in caregiving, guilt incurred through the criticism of family members who are not directly involved in the patient’s care, and resentment for siblings and other family members who negatively affect, or do not participate in, the caregiver’s or patient’s emotional support system.

So, while the linear orientation of the traditional medical model identifies one “dementia patient,” a relational-systemic orientation identifies many, and there is a distinct need to reformulate the “problem” from diagnosis and treatment of the dementia and to include the emotional, psychoeducational, and relational support of the patient’s family, with a particular focus on the needs of the de facto caregiver and the autonomy, safety, and quality of life of the patient. The biopsychosocial-spiritual (BPSS) model of Medical Family Therapy (MedFT) was formulated to recognize the patient, family, and healthcare team as members of, and participants in, a holistic system, and to incorporate family members into treatment as sources of support or as “hidden patients” who are themselves in need of intervention. Other authors have identified the apparent tension between the patient’s and provider’s problem formulations, and the conflicts between the linear and relational-circular conceptualizations of the biomedical and systemic/BPSS models, as areas which need to be addressed by MedFTs in practice.

This post, however, takes a less academic approach to advocating for systemic interventions in dementia diagnosis and treatment. It is a deeply personal reflection on my own experiences as a child and caregiver to a patient diagnosed with Alzheimer’s dementia – my mother – and how both our lives were altered by her illness, her diagnosis, and our encounters with the healthcare system and medical providers. I feel that it stands as a strong statement in favor of a more holistic, relational approach to patients and their families, and a heartfelt explanation of why it was so important to me to transition, in the middle of my life, to a new career as a therapist and a specialist in MedFT.

Case history and dementia diagnosis

My Mom, a lifelong smoker and social drinker, had been dealing with a number of health issues for decades prior to her dementia diagnosis. She had been diagnosed with major clinical depression and post-traumatic stress disorder (due to childhood abuse); kidney stones, which had led to kidney necrosis in the 1980s, during which she had nearly lost one or both of her kidneys; with Barrett’s esophagus in the 1990s, the pain from which had initially led her to fear that she was having heart issues, and which explained why, in the mid-2000s, she ignored the debilitating pain from an anterior ST-segment elevation myocardial infarction – in layman’s terms, a “widowmaker” heart attack – while working in the yard. However, Mom remained socially, physically, and intellectually active through the 2010s, primarily by looking after her neighbor Ken after his wife passed away. Ken, like Mom, was a chain smoker with high cholesterol, and Mom took it upon herself to accompany him to medical appointments and errands, prepared him two healthy meals a day, and spent most of her time with him between meals watching movies, playing cards, sitting by the pool, and endlessly debating topics on which they were almost always diametrically, but affably, opposed. As a result, Ken’s hypercholesterolemia improved to the extent that his type II diabetes went into remission, and both he and Mom attained a healthy weight. Mom, too, retained her intellectual capacity and social connections, largely, I think, through this friendship. I was located several states away but called Mom daily on my commute, and she seemed very content, although she did occasionally complain of forgetting to complete items on her To Do list, or used odd terms to describe things, during these conversations. But when Ken passed away from a major stroke in 2013, Mom began to recede from her social life, spending less time with her neighbors, less time outside, and more time indoors, chain smoking and playing solitaire on her computer. When I visited her, I noticed that her home – which had always been kept unimpeachably clean – had begun to accumulate grime, and her belongings kept in unusual places.

In July 2015, Mom left her phone off the hook for three days until I called her neighbors to check on her, and when she called me, she admitted that she had no recollection of where she had been for the past several days. My wife and I had been having marital issues and, despite couples counseling, we had agreed to a divorce. Deeply concerned with the revelation of Mom’s memory issues, I laid aside my plans to move out, gave my notice at work, and relocated to live with my mother in August of that year. Mom underwent neuroimaging, which revealed gross atrophy of her brain and leukoaraiosis – white matter hyperintensities on an MRI, suggesting small vessel disease and old infarcts – and a battery of neuropsychological tests, which revealed moderate-to-severe cognitive impairment with respect to autobiographical memory, vocabulary and semantics, and orientation to place and time. These results were strongly indicative of Alzheimer’s disease (AD), her tentative diagnosis. Additionally, she had begun to complain of severe, debilitating gastrointestinal (GI) pain. Her primary care physician prescribed her combination therapy with Namenda (memantine, an NMDA receptor antagonist) and Risperdal (risperidone, an atypical antipsychotic) for her dementia and Aricept (donepezil, an acetylcholinesterase inhibitor) for her memory issues, and sent her for an ultrasound for her GI pain, which was ultimately inconclusive. (It later turned out to be severe diverticulitis.) Her medical providers, perhaps limited in their training to the biomedical model, or constrained by Mom’s bare-bones insurance (Medicare), offered no referrals for psychotherapy or other support or resources for her or for me, her sole caregiver.

With the benefit of hindsight, particularly with regard to the results of her neuroimaging and the trajectory of her disease, it is likely that Mom suffered from mixed dementia – that is, a combination of Alzheimer’s and vascular (blood vessel) disease – but knowing that would not have changed her treatment or altered the progression of her symptoms. The vascular component of mixed dementia is due to atherosclerosis, heart disease, and/or stroke which leads to diminished blood flow to the brain and impairments in executive function (reasoning, planning, judgement) and memory. The cause of the Alzheimer’s component is currently controversial but appears to result from dysregulation of certain forms of the β-amyloid protein (Aβ), which is usually neuroprotective but, when dysregulated, accumulates as amyloid plaques between the dendrites of neurons in the brain, and the interaction of Aβ with some variants of the tau protein, which participates in the “skeleton” (microtubules) of neurons and regulate transport of molecules within the cell, and, when pathologically altered, results in the accumulation of neurofibrillary tangles within the neurons. Although the trajectory of mixed dementia differs somewhat from AD, both types generally progress through seven or eight stages: subjective cognitive decline, mild cognitive impairment, mild cognitive decline, early AD or moderate cognitive decline, moderately-severe cognitive decline, severe decline, end-stage AD, and, ultimately, death. Each stage represents further loss of memory, personality, and functioning – more violent mood swings, depression, personality changes, irrationality, inattentiveness, and paranoia – in addition to memory loss.

Beyond the “presenting problem”

My mother was likely in the moderately-severe stage of AD when she was diagnosed and would not succumb to the disease for another six years. Over the interim Mom, and I, as her son and caregiver, would experience repeated episodes of anger, grief, suffering, and – all too infrequently – happiness. We had little medical or psychological support for much of this time, since Mom’s physician limited her care to medication management, and no emotional or physical support, as Mom’s neighbors and friends quickly vanished after her diagnosis, we were geographically isolated from our extended family, and could not afford a professional caregiver. (Medicare may have paid for hospice, but at the time, I believed that “hospice care” was equivalent to “end-of-life” care, and my outreach to social services, who may have made me aware of our options, was quickly short-circuited, as I discuss below.)

Mom and I were therefore left to cope with each emergent crisis on our own, and these crises – along with the objective realities of our respective needs – lent momentum to any relational tensions between us. Our needs and tensions, in turn, were amplified by emotional contexts which pre-dated her diagnosis. In this section, I will list a few details of these personal contexts and needs as I perceived them at the time. I will then re-examine them as I see them now, in hindsight, through a systemic-relational lens.

My mother’s needs

Due to her depression and other health issues, I had seen my mother as “vulnerable” for a very long time – perhaps since childhood – vulnerable to loneliness, isolation, sadness, and anxiety. My concern for her had increased since Ken’s death. When I moved back to care for her, however, I realized that her vulnerability was now of a far greater magnitude. Not only was her home dark and dirty, as it had never been, but it was also falling into disrepair, and she had been washing her hands and dishes with laundry detergent and floor polish. She had withdrawn $20,000 from her retirement over the previous year and given it as “gifts” to her neighbors, friends, and strangers (such as $20 tips to grocery baggers at the supermarket). Worse, she had signed over a $400 “deposit” to two men who had told her she’d needed to have a tree taken down but then disappeared with the money. Mom needed a caregiver to look out for her finances and physical health and safety and to ensure she was not taken advantage of by her “friends.” Bills needed to be paid on time and funds earmarked for food, healthcare, and cigarettes. As her GI pain worsened, and lab results and imaging for it came back negative, she began to spend all day in bed and wandered the house at night, half-conscious of what she was doing. During these wanderings (called sundowning), she would consume copious amounts of alcohol, possibly due to her pain and depression, leading her to feel even more unwell and spend even more time in bed the next day. And although I eventually convinced her not to drive, I discovered that she would go out to purchase more alcohol and cigarettes when I was out of the house.

My own context

The collapse of my marriage, the necessity of resigning my job as a science educator for children – which I had loved, and where I had been highly respected by my colleagues and adored by the children, teachers, and parents – and the farewells to my friends, neighbors, and beloved home – had left me with a deep sense of loss even before Mom’s diagnosis and its associated grief. Additionally, I had developed an identity for myself as a scientist, teacher, inventor, and mentor, a self-sufficient individual, and an avid craftsman and gardener, and having lost my home, job, marriage, and income, I found myself in an identity crisis as well. This was compounded by my lack of financial independence after my move: I had no job lined up; my “Quit to Care” form and, therefore, unemployment insurance, had been denied by the state; and I soon received a notice for back taxes – meaning I was entirely dependent on my mother until I could find work. I withdrew all my funds from my retirement account and set it aside to help pay Mom’s bills and my own, but my pride in being self-sufficient and my identity as an adult and a professional dissipated nevertheless. I felt profoundly guilty at accepting her money while trying to protect her from others financially. Worse still, all my training and experience as a neuroscientist – who had specialized in memory disorders, no less – was worthless when it came to Mom’s daily care. All these factors contributed to acute depression, trust issues, stress, and guilt. However, I had no emotional support: all my friends as a child and teenager had moved away or were busy with families of their own, and my Dad, who lived in Maryland, could offer nothing on a daily basis beyond “moral” support. Nor could I obtain counseling or medical treatment for my depression until enrolled in an ACA plan, and even then, treatment consisted of the “bare minimum.” I felt completely out of my depth, not only personally, but as a caregiver for Mom’s safety, security, and physical and emotional health.

Conflict between roles as a son and caregiver

My sense of duty as a caregiver – protecting Mom physically, mentally, and financially – often conflicted with my love and respect for her autonomy, joy, and quality of life as her son. Although I tried to help where I could, almost everything I did increased Mom’s paranoia and trust issues. When I tried to insulate her windows for the winter, she cried that I was making them look “tacky” with the plastic; when she found my application to social services for financial and medical assistance, she scrawled obscenities all over it and told me that if I did “anything like that again,” I could “leave.” She would also call and cancel her appointments without my knowledge, and when she threw away her medication while sundowning, her primary care physician refused to provide emergency refills, and her paranoia and other symptoms quickly became worse. Coupled with her alcohol abuse, she soon became physically and emotionally abusive, hitting me when she decided I’d stolen her oven rack and threatening to have my two cats put to sleep and throw my belongings to the curb while I was out of the house. If Mom later recalled these events or was reminded of them (which I tried not to do), she naturally felt guilty, anxious, and depressed at the prospect of being out of control of herself or her actions. Even when we agreed on important aspects of the caregiver responsibilities, including officially documenting power of attorney, giving me oversight over her bank accounts, paying bills, and making appointments, Mom would either apologize that she had “put [me] in this situation” or I would later find that she had been ruminating on these agreements and grown angry about them. And although she usually tried to make me feel better when she was coherent, she sometimes made me promise things I knew I wouldn’t be able to keep, such as letting her stay in her home until she died.

Looking back from a systemic perspective

I have already made several observations regarding the systemic-relational patterns which permeated my relationship with Mom following her diagnosis, and it is readily apparent that our pre-diagnosis lives, her diagnosis, and her decline affected both of us not only biomedically and psychologically (Mom’s depression and alcohol abuse, my depression and anger, our shared grief) but socially and “spiritually” as well (our social isolation, trust issues in the relationship, ambiguous loss for our identities and dreams). It should suffice here to accentuate some of these patterns which led to the devolution of her health and our relationship (see the image below). First, Mom had learned not to trust herself, and revelations that she had behaved in some way she could not recall compounded this lack of self-trust and sense of identity loss. She was also aware that she had been the victim of grifting and, rationally, understood that she had taken money out of her account, but as irrationality prevailed became increasingly paranoid that I and “her family” (unspecified, geographically-distant family members) had taken money from her, making her even more suspicious of her neighbors, true friends, and me. My well-meaning attempts to “fix” things – her home, her appointments, her finances – often led to deeper distrust, as did my short-term financial dependence on her and the necessity of making financial and legal arrangements. Second, her social isolation meant that she could not maintain her cognitive capabilities, causing her to decline more quickly and contributing to her alcohol abuse, which, coupled with her disease, further heightened her paranoia and irrationality. Third, my own trust issues from the collapse of my marriage, discovery of my ex-wife’s affair, and knowledge that Mom had been taken advantage of; my guilt that I was dependent upon my Mom and could not help her despite my professional background; my own social isolation; and my loss of my subjectively-constructed identity, all led to me hiding my feelings from her and, admittedly, not including her in some decisions (such as reaching out to social services). My trust was also diminished with each episode of physical or verbal abuse. I internalized my isolation and withdrew, in some ways, from her, emotionally and physically, increasing her own isolation. With minimal assistance, and sometimes active disregard, from medical providers, no funds to pay for an attorney, and no option for me to reach out to social services, we had no recourse or outlet for our shared anger, fear, helplessness, and feelings of invisibility.

Aftermath

Eventually, Mom’s alcohol abuse, paranoia, and physical and verbal abuse culminated one night when she threw me out of her house and said she’d tell the police I’d abused her. Afraid for my physical safety, that of my cats, and my fear of being forced into homelessness, I moved into an apartment using my remaining retirement funds. Mom didn’t answer the phone or come to the door for the next two weeks, until she called me and asked me to come by. She had no recollection of what had happened. Three weeks later, a neighbor tried to visit her and, hearing her struggling behind the door, called the paramedics. Mom was admitted to the hospital with near-fatal blood alcohol content (.38). The attending ER physician had no sympathy for her and treated her as a drunk (which is to say, rudely). She was transferred to acute care for a week, where the care team, which consisted of psychologists, psychiatrists, gerontologists, and social workers, determined that she required 24-hour care and could not go home, but would require placement in memory care, where she remained for the next three years before succumbing to the disease two days before Christmas, 2021. I had since remarried, three years after my divorce, and, through my own dedication and encouraged by the continual and loving support of my wife, a nurse, I’ve worked through many of my issues, although I still feel pangs of guilt and sadness. I had also found a new job as a researcher, where I was once again respected and successful, but Mom’s experience with AD and the healthcare system, and my experiences as a son and a caregiver, had changed me: I was no longer content to contribute to medical research in the abstract. Although no intervention could have prevented the ultimate course of her illness, a systemic orientation to her care may have been able to diminish our respective guilt, fear, and distrust, engaged Mom more deeply in the decisions that affected her, and potentially delayed her consignment to full-time care. Systemic support could have helped me take better care of her at home and prepare both of us for her unavoidable demise. I was determined to do my part to ensure that other families dealing with chronic or terminal illnesses, or with bereavement, would find a partner in “the system.”

The need for systemically-oriented support for families and caregivers

There is a growing recognition in primary care that the high cost of healthcare, provider burnout, and insufficiencies in treatment delivery place high burdens on the patient and their providers, particularly in the context of chronic and terminal diagnoses. Doherty et al. (2014) and McDaniel et al. (2013) have argued in favor of a paradigm which sees the patient and their family as active participants in their own healthcare and recognizes that family members are often “hidden patients” who also need support to advance their family member’s holistic health and outcomes. MedFTs extend this systemic orientation to the healthcare team and system as a whole – they not only acknowledge the patient’s experience of their diagnosis and the role of family and peers in their support system; they also facilitate collaboration and communication among the care team, patient, and family. As a result, the patient regains their sense of agency and becomes less marginalized. The experiences of my mother and I accentuate the issue with a linearly-oriented, biomedical-only approach to problem formulation: as there was no way to “fix” her terminal illness, the diagnostic decision tree terminated at diagnosis and medication management, and the physician ceased to play a role. The problem was made worse by the fact that Mom only had Medicare coverage, and since I had no insurance, we could not afford more than palliative care until Medicaid took over toward the end of her life. Without additional resources or advocacy, we frequently found ourselves at an impasse with medical providers – such as had occurred when she’d disposed of her medication – and had few options for recourse when our appeals to the state regarding financial, healthcare, and legal needs were denied. In the United States, primary care providers are often the gatekeepers not only for routine medical assistance, but often for social services as well. They have the connections and expertise to refer patients and families to resources which can enhance quality of life and the ability of family members to support patient health. When theoretical or practical considerations, such as provider burnout, caseload, or a linear approach to problem formulation, prevent such referrals, however, patient outcomes are more negative. Conversely, research indicates that therapy for AD patients and their families and caregivers, when coupled with pharmaceutical management, is associated with lower rates of depression and better physical health for caregivers, and postponement of nursing home placement for patients, after two years. Family functioning and communication have been shown to influence caregiver life satisfaction, subjective burden, stress, and depression, and can protect or worsen the overall health and well-being of both AD patients and their caregivers.

An integrated care approach in these cases may therefore improve patient care and safety and maintain cognitive capacity, to some degree, by facilitating a benign and enriching psychosocial environment. That is, systemic treatment might only stave off a terminal patient’s death by a minimal amount, but it can improve the quality of the time they have left to them.

Case conceptualization from the MedFT's perspective

I have already delineated some of the relational-systemic considerations which might occur to a MedFT in the presented case – namely, how my and my mother’s pre-existing emotional pain, anger, guilt, and isolation, our financial uncertainties at the time, changes in familial rules and roles, and the grief and identity crises which began with, or were at least perpetuated by, Mom’s symptoms and diagnosis, compounded the biopsychological sequelae of AD and intensified incipient issues of trust, substance abuse, and subjective burden. I have also noted that a MedFT would have considered Mom’s AD, and our relational dynamics, in the context of our participation in her care plan and in the healthcare system. In an integrated care setting, a needs assessment would likely have been conducted by the primary care provider, MedFT, or other staff, and referrals made for social services, legal aid, and perhaps individual and family therapy. As shown in the above image, many of the relational and emotional processes Mom and I exhibited would also have served as feasible entry points to therapy. Beyond financial and legal needs, which could have been addressed by social services, and Mom’s physical, psychological, and affective symptoms and comfort, which were addressed by her physician, our shared issues of fear, grief, guilt, isolation, identity, and trust would have been targets for family therapy; we could have worked through them, in the early phases of the AD, as mother and son, and reflected on our daily treasures, circumventing some of the guilt and grief we later experienced. A referral to group therapy would have also decreased my own sense of isolation, addressed my anger and pre-grief, and served as a resource for the practical concerns of caregiving. Just as importantly, the expanded healthcare team of a fully-integrated practice would have served as a holistic support system for both of us.

Potential approaches and interventions

Although caregiver family therapy – which, despite its name, is primarily focused on the diagnosed patient and the family decision-making processes and relational processes which support them – was proposed in the early 2000s, it remains a young and emerging field in family therapy, and there is, to date, limited evidence for the efficacy of specific family systems models in the context of dementia. There are two exceptions to this observation: Structural Ecosystems Therapy (SET, a subtype of structural family theory) and Cognitive-Behavioral Family Therapy (CBFT, which focuses on mental assumptions and reactions which sustain symptoms), both of which have moderately strong research support. SET is a stress-process model -- it seeks to strengthen or restructure familial patterns which have a protective effect against family members’ stresses. SET has been associated with lower rates of caregiver depression, anxiety, and burden, and higher caregiver and familial agency, affect, support, and cohesion, based on self-report, particularly when staff members made themselves available to patients and families by phone or email. Paradoxically, however, this availability was correlated with more negative affective outcomes for some participants (Hispanic but not non-Hispanic; daughters of the patient, but not husbands or spouses), perhaps highlighting the necessity of considering sociocultural context during treatment and intervention planning. Likewise, there is compelling, yet conflicting, evidence for the efficacy of the CBFT model for patients and their families; a large, randomized/controlled study in the United Kingdom found statistically-significant improvements in depression and quality of life ratings among participants treated with CBFT, compared to individual psychotherapy and welfare services, whereas another large, single-blind study in the Netherlands found none. It is, of course, plausible that a number of factors, including specific family and caregiver circumstances, determine whether it is beneficial in ameliorating caregiver depression, anxiety, and subjective burden, but MedFTs must, at present, use their own judgement when selecting a model for treating dementia patients and their families.

The bottom line

A terminal disease affects not only the patient but their families as well, particularly those family members who function as caregivers. The diagnosis forces patients and their families to adapt to new needs, roles, ways of interacting with each other, negotiate new responsibilities, and cope with novel stress, grief, uncertainty, anxiety, guilt, and anger. Too often, however, the dementia patient and their families are rendered “invisible” in the healthcare and social systems when they are at their most vulnerable. My own experience as a caregiver and son to a parent with dementia, my concomitant emotional state, and my interactions with bureaucracies and healthcare systems changed me forever: it left me with emotional scars and regret for lost time which, while I have confronted, and continue to confront, with deep self-work, have motivated me to dedicate the remainder of my own life to caring for patients and families who are suffering the ravages of illness and the invisible agony which accompanies it. So, although there is scant evidence that any one systemically-informed treatment model is more efficacious than any other, these families are better served by providers who at least acknowledge a systemic-relational orientation, if not a fully-integrated practice. Such an orientation makes for better patient outcomes and quality of life for as long as possible.

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