Health,  Life

A Compassionate Look at the Journey of Dementia – What It Is, the Stages of Progression and How to Care for Loved Ones

“Dementia,” a progressive cognitive decline. We may not be familiar with this term, but the well-known “Alzheimer’s disease” (more commonly known as “dementia”) is one of the common types of dementia .

What kind of disease is dementia? How does it differ from normal forgetfulness? What do patients experience in the early and late stages of dementia ? How do we care for people with dementia?


Is dementia common?

People talk about dementia as if they were ticking time bombs.

In fact, the bomb had gone off long ago, just quietly and out of sight: covert destruction.

People with dementia often become “missing people” – forgotten and denied by a society that values ​​independence, prosperity, vitality and success and abhors vulnerability.

And they only remind us that we all grow old, we all weaken, and we all eventually die. Dementia is one of the diseases we fear most today . It is a “story of pain,” and like pain, it lasts.

This pain spreads from individuals to those who care for and care about them, to their communities, and to entire nations.

We can’t just talk about “them” anymore – it’s now “our” question, how we face this challenge, our collective humanity question .

In an age where autonomy and agency are highly valued, we urgently need to ask some questions: What should we do for others, and what should we do for ourselves? Who is more important? Why do some people seem less important than others? Why are some people overlooked, disregarded, neglected and abandoned? Why be a human being? What is the way people behave?

We often blurt out the word “we,” which represents collectiveness, democracy, and cooperation. It requires a collective voice and, as politicians like to say, we are all in the same boat. On the same boat – well, yes, but some are in first class with an ocean view and a cocktail with dinner, some are in a lower cabin, and some are not visible at all.

The sun doesn’t hit them and we don’t even realize they are on the boat with us. In addition, many people fell into the icy water and were swallowed by endless darkness, while the band on the ship continued to play.

Those we can’t see, those we don’t care about, those we don’t feel heartache for, those who have been ignored by us before they died… If my father was an important person during his lifetime, I want to be there when he needs him most When caring, you may be treated differently.

He was important, of course, but only to those who knew him, loved him, and were intimately involved in his life. Our systems and societies should value every life so that we don’t have to stress over emotional identification in order to save each other .

We all have a duty to save one another, even from our enemies, because the world is “ours all” and we need to share and pass on. Without you there is no me, without us there is no me.

We all ultimately depend on each other, and we should have a passionate, clear obligation to everyone and everyone—to respect them not out of love, but out of our common humanity.

We are all trapped by the limitations of our thinking. It is impossible for us to see the whole world in which we live. We can only see a small part of it that is enclosed by the glimmer of our attention .

As a teenager, I would only notice other teenagers; when I was pregnant, I suddenly saw all the other pregnant women, then the babies, and then I saw a world filled with little kids and their exhausted parents. , and then there were single mothers everywhere… Now, I see countless fragile and frightened people, but this is just because I saw my father being so fragile and frightened.

We can’t see everything, but perhaps we can learn to be more aware of our blindness and make appropriate adjustments.


What exactly is dementia?

Alzheimer’s disease causes nerve cell death and loss of brain tissue.

Over time, the brain shrinks dramatically, eventually affecting various areas of the brain. However, when some brains are dissected, it is found that although the subjects have been diagnosed with Alzheimer’s disease, the brains do not show any signs of the disease, while some subjects have severe brain damage even though they have no cognitive impairment. .

There is not necessarily a direct link between visible brain deterioration and the way a person behaves, feels and communicates. This is because the brain lives and works in an interconnected network.

Looking at the brain doesn’t tell us everything about the brain: the brain doesn’t exist on its own, it exists within a body that has a specific life. Factors such as exercise, diet, geography, occupation, and emotional and relationship status can all influence how a person responds to what’s happening in the intricate maze of layers in the brain.

The brain on the dissecting table is lifeless, just a lifeless beige object, but through the neural images of the living brain, you can see active connections, as well as all kinds of magic and mystery.

Functional magnetic resonance imaging records brain activity by detecting changes related to blood flow. These can show both static and dynamic images, like the Northern Lights, a coral reef or a flowering tree, ever-changing.

Looking at these colorful patterns is like looking at a brain immersed in love, fear, jealousy and hope. But brain scans are not direct s of brain activity; they show the areas of the brain that are working the hardest.

It’s a bit like looking down at New York City from a helicopter and seeing people moving through the streets: you can see people moving at different times and reacting to different events, but you don’t know what it’s like to live in New York. The brain does not reflect the mind.

Still, the images of brains damaged by dementia are depressing: brilliant colors punctuated by patches of dead gray.


How does it differ from normal forgetfulness?

“At your age, you start to fear memory loss. As you get older, people struggle to think and remember things.”

A lot of forgetfulness is related to age rather than health problems. As we age, we all begin to forget, which is a normal, natural part of the aging process. Dementia is not a natural phenomenon; it is a disease.

But there’s also a gray area, a state of uncertainty and uneasiness, when forgetfulness becomes severe and, as many people with dementia say, something doesn’t seem “quite right.” .

As people inevitably age but have not yet been diagnosed with dementia, they move through a swamp of mild cognitive impairment, a transitional stage that some view as pathologizing natural forgetfulness. Others see it as a friendly reminder of future problems.

There are no scientific boundaries between disease and normalcy that we can draw, but their exact location depends on evaluative judgment.

Claudia Wald raised her own question: “This is a gray area. In this gray area, what level of treatment is appropriate? What is considered ‘normal’ as people continue to age?”

She often sees situations change and life support being removed: the person in the couple who has been caring for the partner with cognitive decline dies, the patient goes into the hospital, breaks a leg, or moves. “These things may bring to light previously hidden difficulties.”

She also said depression “can be a precursor and a risk factor” and is difficult to treat. ” There are huge losses in aging: the loss of partners, family, friends, jobs and health, as well as endless feelings of loneliness and fear of death. ”

All of this means that diagnosis is often not straightforward, and it’s often a relative or caregiver who notices the change first, because how do I know I’m fading?


What is your experience with early stages of dementia?

“You have dementia.”

No matter how lovingly or subtly it is said, no matter how lightly it is said, it is a sentence. We all know we’re going to die, but we don’t really understand it until we’re sentenced to death.

Dementia is a terminal illness that often progresses slowly, gradually eroding the mind’s sense of itself.

A diagnosis of dementia often offers confirmation rather than surprise— a small step across an ever-changing, blurry, arbitrary line. Nothing has changed, but everything has changed.

This person is no different the day after diagnosis than they were before diagnosis. The world they inhabit is both strikingly the same and radically changed. For those who are unsupported and unprepared, this The world can bring unspeakable horrors.

The courage and perseverance required to seek a diagnosis comes from the patients themselves and those who care about them . This kind of courage and perseverance is great and should not be borne by the patient alone. But the reality is often like this.

Dementia crept slowly and silently into my father’s life. There were no broken windows or blaring alarm bells, just the occasional rustle in the night, the creak on the stairs, and things disappearing from their usual places. Not to be remembered again.

I don’t know when he started to be suspicious, I don’t know when we started to be suspicious, and I don’t know who started to be suspicious.

His mother developed dementia at a young age, as did his sister. My father was always forgetful, which is not a sign unique to dementia, but it felt like it was, as if his future was one with his kind and forgetful personality.

He seemed to disappear into his own secret world, and no one could follow him.

The fog is getting thicker. His confusion turned into confusion. His joy (or perhaps just a stoicism) was pierced by the anxiety that tormented him at times during the last decade of his life, even while he was still “living well” with dementia. No exception.

The general statement “living well” is clearly not enough to capture the full . Time heals everything and time destroys everything. There is no one thing or specific event that we can relate to during our days of deterioration.

Of course, looking back now, I can recognize those signals.

He was trying to remember the name of a flower in the hedge, and his hand holding a cup of tea began to shake. Once again he lost his hearing aid, didn’t know what he was talking about, or got lost (but that happens to us too). His car hit the gate. He left the key in the lock. When we asked him the time, he told us the cricket score (but he is always forgetful). when I saw an unreadable expression on his face (but he was always a bit incomprehensible and unpredictable). We didn’t discuss the situation initially. When would it be appropriate to ask: Do you think something is wrong? Are you starting to have trouble with your memory?

Finally, we all realized something was wrong. He went to the doctor and had a memory test. Although the doctor cleverly used various comfort strategies, he finally received the verdict – “You have dementia.”

To me, it felt less like a punch to the chest and more like a nudge that pushed him over that movable line, from doubt to certainty. In fact, I don’t even remember hearing the news.


Why is dementia so shameful?

This feeling of shame can come in many forms, felt by both the affected individual and their family.

Feeling ashamed because of the stigmatization of this disease, feeling ashamed because of the loss of power and control, becauseShame that one’s identity has been cruelly stripped away, exposing one’s fragile self, shame that over time the disease affects the entire body so that it becomes a poor, leaky vessel, shame that one’s dignity has been profoundly lost, because of dementia The patient feels ashamed when he repeatedly gets into trouble, and feels ashamed because bits and pieces of his hidden secrets are revealed.

Because we are all people who like to perform, we have learned to perform ourselves on the stage of life, but dementia brings us nightmares and humiliation. It seems that we are standing in front of the audience but cannot remember our lines, as if everyone is watching To the point where we are sitting on the toilet, as if everyone sees us naked.

Not only are our bodies naked, but our souls are also naked: that soft, quivering part of us that we spend our lives trying to protect from a judgmental world and, above all, from ourselves. s damage.

When people talk about the shame associated with dementia, it often has a lot to do with physical debility. It is also closely associated with chaos .

When we start talking obscenities, mumbling, crying, saying crazy and confusing things, the mind becomes out of control and logic, and the out of control physical reactions can be the most frustrating and humiliating.

From an early age we learn to hide our thoughts or say certain things only in private – this is an unbridled abuse of the self. When the boundaries that have long been tightly policed ​​collapse, the inside emerges in ways we don’t want to see.

“Don’t worry, it’s natural, it’s just something wrong with your body.” I heard a nurse say to a patient. But the body is never just the body. The body is both where we live and how we live.

People with dementia have an additional fear of not knowing what happened during those times when their memories , leaving only vague imprints of uneasiness. Something happened. what happened? What have I done? What did people see? Is it ridiculous? Am I ridiculous?

People who care for people with dementia often complete “make-believe” tasks with the person, especially if these caregivers are partners or spouses and have developed a mutually supportive relationship.

After all, they have been participating in the same show for so long, and they are both starring and each other’s audience. Caregivers make excuses for their loved ones, cover for them, finish their unfinished sentences, finish their stories, explain things to others, and even share the stress of pretending to be normal.

In a way, this is an act of kindness: if you know that this shame stems from a fragile inner self that needs protection, then of course you will use this protective behavior to help your loved one .

But in intimate relationships, where the other person’s identity and the self’s identity are more or less closely linked, shame can spread from one person to the other like a private contagion.

We are not just in pain and anxiety with another person, we are also in pain and anxiety inside because we don’t know when the pain and anxiety on both sides begins and ends.

When people shrink and distance themselves from someone with dementia, it may not be because they lack compassion and empathy, but because they perceive a great deal of danger.


How to care for people with dementia?

Caring for patients can be exhausting, hilarious, thought-provoking, frightening, and by turns fulfilling and miserable. In the process of caring for a patient, the caregiver’s body and emotions come together.

They find themselves and lose themselves; they give up some things and take on others; they feel both weakened and expanded; they behave sometimes badly and sometimes well; they feel proud and ashamed of themselves; they feel they never do enough. Well, they also want to exceed other people’s expectations of them.

“Care workers” – there should be other words for them.

The word “selfless” is almost always used as a compliment—the willingness to give up one’s own wishes and desires for the benefit of others. Over the past year, I have read numerous books whose authors spoke readily of selfless care, almost praising the act in pious or noble terms. The purpose of treatment is recovery, which is highly valued in society, while care is an end in itself. One writer compared this act to the mythical tale of the hero Prometheus and the stoic Sisyphus.

From a utilitarian perspective, care has little value; we should think of the act in terms of “contract” and “loyalty.”

Mutual benefit in caregiving is limited, and even in late stages of dementia, there is no mutual benefit at all between patient and caregiver, and the caregiver’s achievements often lie in unseen details: no bedsores, no malnutrition, no Fall… Regardless of the outcome, regardless of the recognition received, caregivers need to find meaning in the act of caring itself.

They are “guardians of the soul” and must be “people of faith.” Author and nursing professor Sally Gadot believes that care is the process of intervening in the vulnerability and frailty of others and “breaking oneself.” In this process of mutual destruction, behaviors that are considered degrading in the therapeutic model (such as lifting, cleaning, and feeding) instead become “bonds of contract.”

It’s pure selflessness—intervening in other people’s fears, losses, and vulnerabilities, leaving your own world behind, leaving yourself behind to be there for someone in need. This selfless act places a high value on self-renunciation and enduring pain.

While this idea of ​​care acknowledges the profound nature of the task and attributes it an unquantifiable value, it also attacks notions of autonomy, independence, and selfhood. Of course, the word “autonomy” is too simplistic, as is the word “agency.”

Growing up, I always said these words casually: Stand up for yourself and be myself. Can you really live so freely? We are all born to be interdependent, and dependence is an integral part of the human condition.

In the journey of life, as flesh and blood, as selves with bodies and embodied minds, as part of a rich and ever-changing web of relationships, we are an ongoing embodiment of vulnerability.

Perhaps the world of the 21st century has become too focused on self-preservation and has established too many boundaries. We must continue to push boundaries. Caring for others and being cared for by others is an integral part of civilization. The most basic issue that affects how to live a good life is the issue of interpersonal relationships. We are interconnected politically, emotionally and psychologically.

However, however…


What does late-stage dementia face?

No one has come back from the land of advanced dementia to tell us what it’s like there. Like the pulsing light on a sonar display, they gradually dimmed until they were no longer traceable, and we couldn’t imagine what they were going through in the cold, deep darkness.

The old woman lying next to my daughter screamed the same terrible words over and over: was she intensely experiencing a past trauma, or was she just haunted by a memory?

When my father also began to say “I must return to the sea”, I don’t know if what he saw in his mind was the splashing sea surface, sea fog and swaying white sails, or whether these words were just some traces of memory, just a The last spark that randomly bursts out from the dying consciousness.

To think about the late stages of dementia is to think about what it is to be human, to acknowledge the essential loneliness and isolation of the individual spirit.

We spend our lives connecting with others, trying to imagine our lives as theirs, trying to communicate our own feelings—building fragile bridges across the great divide between ourselves.

To fall in love with others is to believe that we can be known by others, truly known by others, and that in turn we can know others and feel with them through a fusion of intense attachment and desire—two stories in one.

We can reach out and draw closer to each other, tell our stories, pour out our hearts, and give each other secrets as gifts, but we can never enter another person’s mind, see the world through their eyes, or feel it. Specific pain in their body or mind . In the end, we were mysterious to each other.


How to say goodbye to relatives and friends with dementia?

Dementia is a special long goodbye to the self.

As with most diseases, death comes quickly. And with dementia, the end of life can be agonizingly slow. People with dementia may have plenty of time to think about their own mortality, and their carers even longer to think about it, often having many years to imagine, prepare and rehearse.

They have an anticipatory, vague grief and are able to mourn themselves or loved ones in advance.

In the final stages of dementia, loved ones may still be standing before us but absent, a powerful reminder of our loss .

In the long process toward the end, they are gradually dismantled, but still haunt us and themselves like ghosts: they no longer recognize the person in the mirror, or recognize the person in the mirror as their dead parents, Their shadow doubles.

Mourning someone who is still alive triggers a complex and special kind of pain, and often a sense of guilt: To mourn someone who is not dead is to send them on their way to death.

When people with dementia die, their death is often both a loss and a relief for them, who have been overwhelmed by the disease and have endured the pain long enough.

Their deaths are both loss and relief for those who loved and cared about them. We would say “They have lived through their time.” We also say “it’s time.”

If a person has spent the past ten years taking care of their partner, bathing him, feeding him, cleaning up his messes, crying for him, staying away from him, loving him, hating him, and is tired of this thankless job , trapped by it, exhausted, despairing of the lack of reciprocal relationship and loss of self, and not wanting him to leave despite the circumstances, not wanting this long and difficult journey to end, this person must be a saint.

We need to get our lives back.

When they die, grief is pervasive. Because even if we say that people with dementia have “gone” and become “empty shells”, “no longer what they used to be” and “walking zombies”, when they die, we will find that they are still there after all. alive.

They are still themselves, even though they have lost themselves.

In the weeks before he died, my father would still have his trademark smile on his face, that chuckle that was invisible to other faces, the living father who was the same as the dead one I saw in the small room of the funeral home. The differences between people are so great that they are indescribable.

People have told me that there is a spectrum in the world: people have a clear sense of self at one end, but they gradually slide towards the end of self-loss, such as ending up in a coma. They may still be breathing, but they no longer exist. Nothing is left but the body.

A friend of mine had to decide at what point to turn off the machine that was keeping her partner alive: he was in a vegetative state, and it was, without a doubt, the only thing she could do.

But this is a serious and painful decision. This means: this life is over.

Never again. Will not be returning.

This is the mystery of life. A person may have nothing left, no memory, no language, and no awareness of his or her existence in this world. However, within their broken bodies lies their indelible essence.

Derrida once wrote: “To live is another word for mourning.”

Staying alive is a complicated thing. Successful mourning is also failed mourning.

Grief is a memory, a loyalty, and the act of accompanying the deceased. Recovery is a necessary betrayal, the act of moving forward alone.

Many bereaved people feel guilty when they experience moments of returning happiness or when they realize that it has been a while since they thought of their deceased loved one. The dead become forgotten, if only briefly.

And we must forget, letting the dead sink gradually into the depths of our memory, where we do not often feel them. If we don’t do this and stay in the intense, frightening first stage of grief, we will go crazy (of course, some people do get stuck and go crazy).

The dead still live in our hearts, but we don’t think about them all the time because they have become a part of us, integrated into our bodies.

They are forever absent, forever present in the past, but also forever present in the present and our future. This is mourning, a painful, protracted, solemn and important work.

We recognize our own mortality by calling the dead to us.

No matter how peaceful the process is, no matter how brief the time span, death is never a small event. As soon as the breath stops, like a gentle blow of a feather, the whole world disappears.

Yet death can also repair a person, especially when that person has been ravaged by dementia. Once they die, they are no longer just old, fragile, sick people, they are no longer just confused and forgetful, no longer just a broken body and a weak spirit, no longer themselves.

Because they have left us, they can come back to us and become who they once were.

Young, old, and in between. Strong, vulnerable, and in between. We often fall head over heels in love with all of these selves, and we understand how they encompass so many selves.

This is what a good funeral can bring: the feeling of your whole self being remembered again, restored and redeemed.

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