By Harold W. Anderson, Ph.D., M.Div, LMFT
There is a moral task of caregiving, and that involves just being there, being with that person and being committed. When there is nothing that can be done, we have to be able to say, ‘look, I’m with you in this experience. Right through to the end of it.
Have you ever walked into a room and then wondered what you were in there to get? Or perhaps you are in a conversation and the word, no matter how hard you try, just doesn’t come to mind. On other occasions, you can‘t find your wallet or purse. You are quite sure you got home with it, but you just don’t remember what you did with them. Or, this is my favorite, you can’t find the TV remote or better and more frightening, you can’t find your phone. You search your home frantically and you can’t find it, so you search your car to no avail. Panic begins to set in and frantically you use your partner’s phone to call your number. Hopefully, you haven’t silenced it but then, you hear it…that familiar ring allowing you to locate its where abouts. Whew! Many more examples could be given, but you get the idea. Memory is sometimes a challenge and many of us, throughout adulthood, struggle with these challenges. In most cases, there isn’t anything wrong with us. For whatever reason, we forget. But imagine if these sorts of things become chronic and are combined with a host of other difficulties such as a language deficit, which is not just a loss of words, but a condition where words lose their referent and with that, their meaning. Or think about aphasia or trouble recognizing objects, persons, sounds, shapes, tastes, or smells. Executive function deficits also complicate memory loss. This deficit makes it difficult to focus, stay on task, control emotions, tune out irrelevant information, etc. When memory lapses become a loss of working memory and are complicated by other issues caused by a deteriorating brain, life is not just frustrating, but it might be likened to staring into a dark abyss…when the light fades there is darkness and the normal things that orient us to our environment and make sense of the narrative that is our identity begins to fade. This is the life of one struggling with Alzheimer’s disease.
Researchers estimate that 1 in 3 seniors will die with Alzheimer’s or another form of dementia although Alzheimer’s is the most common form. That is more people than those who die from breast cancer and prostate cancer. In 2023 Alzheimer’s and other forms of dementia cost the nation $345 billion and that number will rise to $1 trillion by 2050. All of this translates into a 1 in 3 lifetime risk for women and a 1 in 10 risk for men at the age of 45. Over 11 million Americans are unpaid caretakers for the people who have this dreaded disease. 4 in 10 Americans say they would talk to their doctor right away when experiencing memory or cognitive loss, and 6 in 10 would want to know if they have Alzheimer’s disease right away if it meant early treatment of the disease (Alzheimer’s Association, 2023). Sadly, while today much more is understood about Alzheimer’s, its etiology is a mystery and while there are some medications that may slow its progression, there is no treatment that can stop or cure people of this dreaded disease. These are startling numbers leading some to say that those living with Alzheimer’s have two deaths…the first one when the death robs them of their identity and the second when their bodies finally quit working.
You can’t explain what it’s like to mourn someone who is still alive unless you’ve experienced it firsthand.
How does one live with Alzheimer’s? This question immediately poses two answers: First, if a person is diagnosed with Alzheimer’s, they experience a transition that involves fear, denial, anger, trying to rid themselves of the disease in various ways, depression and maybe…acceptance. In other words, living with Alzheimer’s is a grieving process where one must somehow prepare themselves for the days, months, and years to come. Rarely does the cessation of life predate the loss of memory and the other associated challenges that come from a deteriorating brain. But living with an Alzheimer’s patient is something that family members, loved ones and friends must also learn to do. The transitional process is similar. “This just isn’t fair!” are words uttered in anger. “Why does this have to happen to Mom/Dad/Wife/-Husband/Brother/Sister/Friend, etc.?” And then the process of bargaining begins. “We need to get a second opinion” a family member insists, a good idea given the complexity of an Alzheimer’s diagnosis. “I know that Mom is having difficulties remembering things, but that could just be old age. The older people get, the more problems they have with memory. It doesn’t mean they have Alzheimer’s.” Or someone might suggest that what is needed is a better dietary regimen that contains less carbohydrates, less alcohol, and more exercise. “If Dad eats better and gets more exercise, I’m sure he will be fine.” Yet, the disease progresses. “How am I going to live without you? How am I going to take care of you? Where will the money come from?” are questions of intense fear growing out of an unknown future. Not only do individuals experience depression, so do families and other support persons. When Alzheimer’s is diagnosed, family and loved ones begin a grieving process just as much as the one diagnosed and this transition, as long and heart-wrenching as it is, is one that millions of people in the United States attempt to live with each year, day after day, week after week, month after month.
So again, how does one live with Alzheimer’s and the tremendous challenges it presents to those living with the disease? In what is to follow, I wish to address this question. Right now, there is no cure, but there are ways to live with the disease that will make the transition, while difficult, more tolerable.
Improve Your Brain:
There’s an association between higher education levels and a lower risk of Alzheimer’s disease. More formal education may shape the brain differently starting from a young age. Learning new things creates more connections between neurons and may make the brain more resistant to damage. It’s never too late to learn something new and expand your social networks. Doing group activities or having more social contacts may also lower your risk. Consider the following things that are especially good for your brain:
- taking classes
- learning languages
- playing musical instruments
- joining community groups to increase social contact
From HealthLine
Grief is something that people experience differently. While Elizabeth Kübler-Ross’ stages of grief (See her On Death and Dying) have brought understanding to the process, mental health professionals no longer think that people progress through these stages in the same way. Some may begin at one point, e.g., depression rather than denial and may never have a bargaining stage. Some may experience denial and anger and then move to acceptance, etc. Grief is an individualized process, but the five stages identified by Kübler-Ross are helpful in knowing what to expect. What I tried to explain to my clients is that the process is not linear, that is, it may not move from one stage to another. Whereas one’s anger may have dissipated and become depression, anger may return later to exacerbate the depression, which may lead once again to denial even though the grieving person may have thought they had worked through it. The reason for this is the complicated nature of grief itself. When a traumatic event takes place—such as the diagnosis of Alzheimer’s disease—people get caught up in the moment and cannot think about tomorrow much less imagine what life will be like a month from now. In the midst of the “now,” grieving people are looking for a glimpse of the future, one in which they long for hope. While questions of what is next often accompany a diagnosis of Alzheimer’s, the trauma gets stuck and is the primary focus not only of the one diagnosed, but this “stuckness” impacts family members and loved ones as well. It is as if a thick fog has settled around them, and they cannot see tomorrow.
In such moments, the temptation is isolation, which easily leads to depression. However, in the moments surrounding an Alzheimer’s diagnosis, relational support is of the utmost importance. People should not be afraid or ashamed to ask for help. A PCP may understand the physiology of Alzheimer’s and may not be equipped to handle the emotional problems it creates. However, they know someone who does. Psychologists and mental health providers are an invaluable resource for those trying to live through the trauma of an Alzheimer’s diagnosis. These providers are, if you will, professional carers. They will help the diagnosed and their family members find a focus that lies beyond the disease. When I was teaching marriage and family therapy, I drew upon narrative therapy and encouraged my students to instruct their clients to “externalize the problem.” Put differently, Alzheimer’s is the disease, it is not and never will be who the person is, and this distinction is an important one in working through the trauma of diagnosis. It is important that the entire family know this and so I encourage family therapy for those going through it. This is relational therapy, and it draws upon the strengths in the family structure and minimizes weaknesses. Reminding families of their strengths empowers them and moves them through the trauma. It reminds them that no one is facing the future alone. The family is surrounding the diagnosed with their love for as long as the diagnosed one has life in them. This reminds them that they are loved and that will never change. The relationality of families and their association with friends and neighbors tends to normalize the abnormal and makes the task ahead seem much more doable.
Still, Alzheimer’s places a tremendous strain on family dynamics and demands change (Luiu, et al., 2020). As the disease progresses, the diagnosed one is less able to carry out daily routines, care for themselves and often, the children find themselves becoming the parent of their parents. These types of role reversals challenge even the strongest of family structures and greatly increases anxiety levels, which stresses relationships and challenges normal channels of communication. However, Luiu et al. (2020) point out that family therapy helps and notes:
The interplay between family caregiving and [Alzheimer’s disease], with particular focus on the family relationships, plays a role in the improvement of many caregiving aspects including the management of [behavioral and psychological symptoms of dementia], caregiver burden reduction, and a general better quality of life (p. 1596).
Families are immersed in a network of relationality, with the relationality of the immediate family being the primary focus. When help normalizes the stress of an Alzheimer’s diagnosis and helps family members begin to understand the progression of the disease and its impact upon the family system, the different structures in which the family system is immersed become systems of support rather than greater elements of stress thereby reducing caregiver burden and increasing quality of life. Asking for help and realizing the relational nature of the family, empowers the family to move through the fog of trauma coming closer to the prized goal of acceptance.
As Lynne Howarth (2020) points out, people tell stories. It is in these stories that they learn how to prioritize and make sense of the many experiences life brings. Howarth, then, concludes that the stories told give meaning to notions of self. A person’s identity is developed by autobiographical stories that provide a context for a person’s values, norms, expectations, and intentionality giving them a sense of self-worth and purpose. These autobiographical accounts become so routine that they organize other memories and guide a person’s life not only in the present but also guide them into the future (Howarth, 2020). As people age, retire and face the challenges of aging bodies, the future grows shorter and shorter. “This is the last house we will ever live in,” an aging person might say. Or “this is the last car I will own.” “I loved my work as X, but I’ll never do it again. I’m enjoying my retirement.” These statements may not be sad statements; they may be statements that grow out of one’s satisfaction with their lives. However, no matter the emotional connotation, they are acknowledgments that the future does not stretch out as far as it did in the days of their youth. This, too, has a bearing on their identity and their self-worth. Rather than looking forward, their narratives of self-identity allow them to look to the past and gain satisfaction from jobs well done, whether that applies to work, families, or both. Even though the future may be short, the life lived makes the finality of the future less important. Still, it is the autobiographical stories that provide comfort when one’s future may be shortened by age.
How does Alzheimer’s affect these stories? The answer to this may sound obvious, but it may be more complex because of the relational nature of families and the role that objects play in this process. Let me explain.
Have you ever been digging through a box of stuff saved by your parents from your childhood. A lot of it is a bunch of paper and perhaps a few pictures, but then all of a sudden, there it is…that one object that you had forgotten about but becomes an instant metaphor of who you were as a young person. It could be a button, an award, a baseball glove, a doll, a doll’s dress, etc. It could be just about anything, but to you it is special because it exemplifies you. We all have these kinds of objects and studies suggest that creating a shadow box full of memoranda for those with Alzheimer’s helps orient them to the narratives of identity that grow dim with the disease. However, as is the case with some people whose vision and hearing are poor, these objects may be as faint as the narratives they represent. This is where family and loved ones come into the picture. According to Howarth (2020), even though people with Alzheimer’s may have lost not only memories but other important bodily processes, “it is still possible to reach people with Alzheimer’s disease even in the very late stages” (p. 11). They still feel and the objects associated with narratives of identity are primarily emotional. “Look Mom/Dad. Do you remember this?” “What is it?” they ask. “It’s your X…” and then tell the story of identity associated with it.
I remember a time when I was doing Sunday services for a memory unit. They were short services but at the beginning of one, a lady came in saying “Hey batter, batter, batter” as she took her seat. As it turned out, this woman loved baseball; she may have even played ball when she was younger, but baseballs and baseball gloves were a part of her cherished memories. “Do you think you are at a baseball game?” I asked. Blank stare. “Do you like baseball?” Again, a blank stare. As I worked through the service, I would look at her and relate what I was saying to baseball. I don’t know what I said, but something clicked with her and when the service ended, she stood up and came over to me. “Where are you going?” I asked. “With you” she replied. I walked with her back to her room, and we talked about baseball, an “object” that evoked “the practice of common reminiscence” (Howarth, 2020) with this wonderful woman. Imagine if I was a family member who knew her story and had objects that reminded her of that story. Imagine how that might have brought meaning and a shred of identity into her presence once again.
The practice of common reminiscence means drawing upon stories and objects of identity to bring meaning to the one with Alzheimer’s. This takes patience. A comical anecdote quips that people with Alzheimer’s never run out of stories to tell when talking to each other because they forget the stories that they have already told. While amusing, this anecdote is not far from the truth. A person with Alzheimer’s will repeat themselves quite often and they will ask the same question over and over again because they can’t remember they have already done so. They don’t mean to be annoying. They just can’t remember. Getting frustrated with this redundancy does nothing for the patient nor is it helpful to the caretaker. Learning how to deal with this amicably is part of accepting Alzheimer’s disease, but the practice of common reminiscence can help. “Where are we?” the one with Alzheimer’s might ask. It is easy to reply glibly that “we are home,” or “we are at the retirement home,” etc. Often, these responses have little impact upon the one with Alzheimer’s and within a few seconds they will ask again “Where are we?” A different response might be: “Do you remember when us kids would ask you that in the car? Every time we went to visit grandpa and grandma, we ask constantly ‘where are we?’ Do you remember that?” [Showing them a picture of the car or grandpa and grandma would be good at this point.] Car trips and a kid’s constant “where are we?” (or its corollary, “Are we there yet?”) are a form of common reminiscence that may touch base with a loved one. It won’t cure the redundancy of questions and statements, but it might remind them of a story of identity that for the moment, brings a little meaning and perhaps cheer into their lives.
Common reminiscence and narratives of identity along with the objects that represent them are powerful relational tools. They draw upon family events that can easily be recounted by family members. When family members tell these stories, it is important that they emphasize the emotional tone that accompanies the event. This is true even if the event or story predates the family members. Children have heard stories of their loved one growing up and can tell these stories even if they weren’t there by reminding their loved one of the emotional tone they experienced. “Do you remember Joan?” an Alzheimer’s patient might ask their child caretaker. Joan is a person the Alzheimer’s patient grew up with and the child has never met. Still the child remembers their mother talking about Joan as they grew up. “Oh, you really liked Joan, didn’t you? You guys used to get into all types of mischief. What is your favorite story about Joan?” Sometimes they will not or cannot answer this question, but the feeling of Joan touches their life. This, it must be understood, is the life of a person living with Alzheimer’s. It may be all they have, and learning to live with that is important in transitioning to acceptance in the care of a loved one with Alzheimer’s.
Finally, it is important for family members and caretakers to accept that their loved one will never return to a normal state of functioning. This is a particularly difficult thing to do, especially in the early stages of the disease because there are so many lucid moments shared with their loved one. As the disease develops, however, and their loved one retreats into the darkness of an Alzheimer’s abyss, family members may find themselves wishing for their loved one’s death. The darkness can be accompanied by behaviors that are very unlike their loved one. They may say things they’ve never said. They may become violent at times, and they may have mood swings that are difficult to explain. As the disease progresses, they may become very paranoid distrusting the care that is given to them by caregivers, and when the caregiver is a family member, feelings may get hurt. During such times, the caregiver must not take these behaviors personally, which is easier to do when realizing that these are symptoms of the disease and symptoms of an impending death. Wishing that a loved one would die in the late stages of Alzheimer’s may cause guilt,
but guilt is not warranted. The end of Alzheimer’s is death and there is little wrong with hoping and praying that the end will come sooner rather than later. No one knows when the end will come. However, it would be cruel to hope that life is elongated when it means the increased meaninglessness of a life well lived.
It is no wonder that Alzheimer’s is replacing cancer as one of the most feared diseases. There is no cure and living with Alzheimer’s seems, in the end, to be an unjust and cruel disease. It is a disease that exhausts families and often riddles them with guilt. If there is anything that we can learn from this disease, however, it is that the relational nature of families provides a foundation for living with disease. It is in families that stories of identity are remembered even when loved ones can’t. It is in families that objects of identity are rescued from obscurity and in the context of these stories, brings moments of meaning to the loved one who is suffering from Alzheimer’s. While the one diagnosed with Alzheimer’s will slip away into the darkness of the Alzheimer’s abyss—that is the inevitable progression of the disease—their stories and objects of identity also provide meaning for family members. Stories and objects of identity unify families and it is these stories and objects that transcend death. While Alzheimer’s brings death to the ones it affects, their stories live on in the relational nature of families, and that truly is a blessing.
Works Consulted:
Alzheimer’s Association. 2023 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2023;19(4). DOI 10.1002/alz.13016.
Baylis, F. (2017). Still Gloria: Personal identity and dementia. IJFAB: International Journal of Feminist Approaches to Bioethics, 10(1), 210-224.
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Fishman, E. (2017). Risk of developing dementia at older ages in the United States. Demography, 54(5), 1897-1919.
Howarth, L. C. (2020). Narrative, Objects, and the Construction of the Self: How We Might Remember When We Have Forgotten. The International Journal of Information, Diversity, & Inclusion (IJIDI), 4(1), 5-19.
Kübler-Ross, E. (2014). On Death & Dying: What the Dying Have to Teach Doctors, Nurses, Clergy & Their Own Families. Scribner.
Luiu, A. L., Favez, N., Betrancourt, M., Szilas, N., & Ehrler, F. (2020). Family relationships and Alzheimer’s disease: A systematic review. Journal of Alzheimer’s Disease, 76(4), 1595-1608.
Malcorra, B. L. C., Mota, N. B., Weissheimer, J., Schilling, L. P., Wilson, M. A., & Hübner, L. C. (2021). Low speech connectedness in Alzheimer’s disease is associated with poorer semantic memory performance. Journal of Alzheimer’s Disease, 82(3), 905-912.
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