Why I Hate Alzheimer’s

Why I Hate Alzheimer’s

by Christine Hammond
Reflecting upon personal experience, therapist Christine Hammond takes us into the personal and professional world of working with Alzheimer’s Disease.

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Alzheimer’s is a Thief

As a therapist, to say I hate a disorder is a big deal for me. I specialize in personality disorders—narcissism, borderline, and anti-social—and have found beauty and giftedness where most see dysfunction. I don’t hate any of these disorders, even the ones that tend to be destructive for the client and their family, and exceedingly challenging to work with clinically.

But Alzheimer's is different. A personality disorder can be understood and even managed. Someone with a personality disorder can grow in their perception of how the disorder changes their perception of reality. They can learn new ways of coping and relating. But such is not the case when working with clients who struggle with Alzheimer's. Because people with a personality disorder tend to be long-term clients, I have the unique opportunity to see these clients, as opposed to Alzheimer’s patients, though many life stages, including the aging process.

Alzheimer’s comes like a thief in the night
Alzheimer’s comes like a thief in the night; except it keeps returning at random times during the same night and on nights thereafter for years at a time. Like a thief, it steals one item at a time—a memory, a possession, a skill—and moves around others, so they appear to be lost but are not. Sometimes it breaks things and leaves the pieces behind in unrecognizable forms. For the most part, it is sneaky, always moving and changing what is least expected. But in the end, it steals the whole house or the whole person leaving no remnant behind.

The worst part is not what it does to the person but what it does to the family and friends. The family remembers what was in the house and cannot forget what was lost or moved. With each visit from the thief, the family is traumatized by the stolen items or damaged goods. Bit by bit, the family suffers a new loss each time the thief comes. They cannot forget what is missing. They want to forget but are unable.
This is why I hate Alzheimer’s.

My Father’s Struggle

My dad had Alzheimer’s. Watching him fade away was one of the most difficult experiences of my life, both personally and professionally. It challenged my ideals, tested my patience, expanded my knowledge, and wore me out.

My dad was an exceptional person. He is credited as one of the pioneers of the computer age. He took the early building-size, main-frame computers and found practical applications for business such as the airline reservation system and the storage of security documents for the government.

His genius IQ, matched with a reserved but intense narcissism, made him a force to be reckoned with. In his personal life, he turned a paralyzing airplane accident into a triumph of brain over body. At 22 years old, he was told he would never walk again, but his determination, willpower and never-give-up attitude allowed him to walk until Alzheimer’s stole that ability away.

No amount of brainpower, willpower, determination, or perseverance could stop the negative progression of Alzheimer’s
No amount of brainpower, willpower, determination, or perseverance could stop the negative progression of Alzheimer’s. As a therapist, I am trained to spot changes in a person’s behavior. But seeing them firsthand was difficult, and even more difficult was placing my father in a brain clinic to see how far his dementia had progressed. It was what I feared, and even worse was the realization that he was rapidly headed towards Alzheimer’s.

To test the regression, I asked my dad for a ride to a local grocery store that he had been going to weekly for over 20 years. He could not find it, he could not stay within the lanes of the road, he was driving extremely slowly, and he was yelling at the other drivers as if they were in the wrong. That was when I made the decision to take his driver’s license away. He yelled. He screamed. He threw a giant temper tantrum accusing me of trying to keep him hostage and imprisoned. I was just trying to keep him and everyone else on the road safe. But he saw it as an attack on his freedom and came after me for it.

Think of it as a wave crashing onto the shore, this wave of confusion will pass but another will be right behind it
Nearly every time I visited him, some other decision like this had to be made. He sent a $3,000 check to pay a $300 electric bill, so the bills had to be taken from him. He called old business partners and started telling them about a “new project” that occurred over 30 years ago. His phone access was then limited. He left the house in his PJ’s and we would find him wandering the neighborhood lost. An alarm was always set on the house signaling an open door. He lit a candle and nearly burned down the whole house. With each restriction came more attacks.

This was not my dad. Bit by bit, the independent, self-assured, if somewhat narcissistic, man I knew was transforming into a dependent, emotional shell of a human. Nearly every aspect of his personality was erased. I dreaded my visits to him and the realization that some new restriction would need to be placed for his safety and my mother’s. I hated what was happening to him. I hated how my mother aged 15 years in the span of three. And I hated having to make the hard decisions. I fell deeply in hate with Alzheimer’s.

The Thief Unmasked

Confusion. One of the early signs of Alzheimer's is confusion about family members, favorite locations or regular activities. In the beginning, it seems as if the patient is playing a joke about what they can and cannot remember. At first, the patient goes along with the laugh but later it turns to frustration and then anger or worse, rage. The hard part is that the confusion is different nearly every time. One day a family member is recognized and the next they are a stranger. It is terrifying for the patient to be told they should remember something that they cannot. Think of it as a wave crashing onto the shore, this wave of confusion will pass but another will be right behind it.

Anger. Also known as Sundowner’s Syndrome, the Alzheimer's patient becomes enraged late in the day resulting in temper tantrums that rival those of a two-year-old. It is as if the confusion of the day builds to a crescendo which is then released in outbursts that are uncharacteristic, intense and extremely hurtful to those around. Foul language, throwing things, abusive speech and physical aggression are common. It is often impossible for the caretaker, especially if this is a spouse or child, not to take these words personally. But that is precisely what needs to happen. It helps to disassociate by seeing the outbursts like an acting performance instead of words from a person they love. The words spoken are not reality-based, but rather exaggerations and extremes of delusional thoughts.

Disintegration. The negative progression of the disease means that one day the patient can push a button and the next, completely forgets how to do so. One day, the patient remembers to eat and the next, they do not. Simple, everyday tasks become impossible feats where everything takes much longer to complete than ever before. Like pieces falling away from a formed puzzle one at a time, such is the disintegration of the patient’s mind. This is difficult for the caretaker to absorb because the pattern of deterioration is unique to each patient. Sometimes it helps to see this process as a reverse of childhood progressions and accomplishments. As the disease progresses, the patient becomes more infantile in every way.

Delusions. One of the scariest parts of watching the progression of Alzheimer's is witnessing the impact of the patient’s delusions—on them and those around them. A patient can watch something on TV and be transported into that reality as if they were the ones experiencing the program. Or they might call a hospital a prison, identify a friend as an enemy, or walk out of the house unaware of their nakedness. The temptation for the caretaker is to point out the delusional thinking as a way of comforting the patient. But this can and often does backfire into an angry rage where the patient can become paranoid and believe that everyone is against them. As painful as it is to watch, it is far better to accept the delusion and play along until the patient is in a safe location or has settled down.

Fluidity. Occasionally, the Alzheimer's patient becomes lucid and fully aware of their circumstances to the point that they seem normal again, if only briefly. The fog from their confusion lifts, their natural mood returns, and they are thinking clearly and logically. When this happens, the caretaker gets excited, relieved, and begins to wonder if they were imagining the whole nightmare of deterioration. The caretaker questions their reactions and judgment, putting aside the negative experiences. This is where things can become traumatic for the caretaker. They can begin to believe that it is all over when suddenly out of the blue, the patient snaps. The unsuspecting caretaker is caught off guard as the Alzheimer's patient sinks to a new progressive low point. The discouragement and depression that transpires with each event take a huge emotional toll on the caretaker.

What I didn’t know then but realize now is just how those years traumatized me. It is a form of C-PTSD (Complex- PTSD) to have a parent who was never abusive act in a manner so inconsistent with their personality. It shakes the foundation of their house and yet they are not to blame. Alzheimer's is.

It wasn’t until a client had a dementia-induced manic episode that I realized the level of trauma I had experienced with my father. Listening to the client’s illogical rants followed by emotional outbursts inconsistent with the topic brought back my dad’s behavior. At least with a client, there is the ability to emotionally detach and disconnect in a way that preserves perspective and clarity of thought. But with a parent, it is different.

My dad said things that he would never say. I was adopted by him at the age of 12 and he always treated me like I was his blood child. But, in the last years of his life, he told me he didn’t want me and that I was a terrible daughter. Logically, I knew he didn’t mean it. Emotionally, I detached because there were so many decisions to make. And now, looking back, I see the traumatic impact. This was not my dad. This was Alzheimer’s and I hate what it did to him, to us, to our family.

Looking back, there were a few things I learned along the way that helped me to keep my perspective and not completely lose it during the crisis. I’m a firm believer in losing it after the crisis is over.

Important Lessons Learned

They are not lazy. Alzheimer’s patients are struggling to do even the most automatic routine. As Alzheimer’s progresses, the brain loses its ability to process, recall, reason, and function. What took seconds to register in the past, can now take minutes and even hours depending on the subject, time of day, emotional awareness, and significance. It is not laziness to struggle with matters such as buttoning a shirt, reading a clock, or remembering how to use the microwave. It is a result of the disorder.

There is no significance in what they do and don’t remember. Looking at an old photo album, my dad was unable to identify family members, but he could identify people he worked with. The brain organizes information in a variety of ways, almost unique to everyone.
Alzheimer’s attacks the brain in random ways with some areas of the brain deteriorating more quickly than others
Alzheimer’s attacks the brain in random ways with some areas of the brain deteriorating more quickly than others. This makes the progression distinct for each patient, and the patient is not responsible for how any of these parts operate or worsen.

Their comments should not be taken personally. This is particularly difficult especially when the comments are hurtful and said in anger. Anger is a base emotion and is the easiest to express. My dad took his anger out on me. I preferred that over him taking it out on my mother, his caretaker. Alzheimer’s steals the house in pieces, changes the personality, and leaves mere shadows. When the patient speaks, they are rarely their true self. It is useful during these times to hold onto the comments that were consistent with past behavior and leave the other comments at the door.

They can perform when needed. Some Alzheimer’s patients can pull it together for a short period of time during certain special events, almost as if there is nothing wrong. This may cause family and friends to say the reports of the condition are exaggerated. They are not. Usually, after the event, the patient will become even more detached from reality and might even suffer a setback. The “show” is their survival instincts kicking in which can only be sustained for limited periods of time. Once their energy is depleted, they tend to retreat and shut down for a period of time.

They have delusions. As the disorder progresses, it is not unusual for an Alzheimer’s patient to watch something on television and believe it happened to them. These delusions are usually harmless unless they begin acting out paranoid thoughts. Think of the visions as part of an overactive imagination with no filter for what is real and what is fictional. If the fantasies are challenged, however, the patient can become unnecessarily confused, frustrated, agitated, and even violent. It is very important to remember not to challenge the delusions. Just go with them even though it might be painful to watch or hear.

They remember random events. Even the most significant days such as a wedding or birth can be impossible for an Alzheimer’s patient to remember. Showing pictures with names and dates can be useful with the expectation that it won’t work every time. The nature of the disorder causes memories to be recalled one day and lost the next, only to be recalled and forgotten again. Alzheimer’s patients are not in control of what is remembered when it is recalled, and what is not. Sometimes they assign great significance to minute moments and no value to major ones.

They still need visitors. It is easy to justify not seeing Alzheimer’s patients because they don’t remember, so there may seem to be no point in visiting. Stopping by to receive recognition, approval, or attention will not be rewarded with an Alzheimer’s patient. Often, the visits are very difficult and painful. However, it is precisely during these times that the character of a person is revealed. Spending time with them can be thankless but the internal rewards of determination, patience, and perseverance are worth the effort.

Their angry responses should be released. It is not uncommon for Alzheimer’s patients to become confused as the sun goes down, the aforementioned Sundowner’s Syndrome. As the disorder progresses, any change, including increased darkness, can be a source of uncertainty and fear. Anger is a base emotion and frequently is a go-to for anxiety, depression, loneliness, distress, and even terror. As the sun sets, the patient becomes fearful and reacts in anger usually forgetting the occurrence the next day. Holding onto the comments made in anger hurts the caregiver, not the patient.

They will not improve. This is a degenerative disorder for which there is yet no cure. Perhaps one-day things will be different as more research is conducted. The good news is that there is medication available to those who qualify to slow the progression. But there is nothing available to undo the deterioration of the brain. Hoping they will improve adds to the frustration for everyone, setting the stage for large amounts of disappointment.

They shouldn’t be compared. Each person is unique in personality, the associations they attach to an event, what they assign as significant and how they utilize information. In addition, Alzheimer’s impacts the brain in different locations at a variety of progression rates. This creates a distinctive experience for an individual. While it is helpful to be involved in a support group with others who struggle as caregivers of Alzheimer’s patients, it is not helpful to assume the journeys will be the same.

What was helpful for my family was a strong support network of empathetic people. My mother and I shared stories with each other and others who were on a similar journey. Today, we can be far more empathetic to others who are walking where we have gone. Seeking out professional assistance during this time to reset expectations, learn about the disorder, and process the difficulties is extremely beneficial.

Epilogue

As for my client with the dementia-induced manic episode, my ability to relate to the family’s experience was greatly improved because of the deep empathy I experienced rooted in the relationship with my dad and his disease. I found that I could better listen to their concerns, fears, and panic moments without judging, dismissing or overreacting. They knew, as I did, that they had shifted to a new normal and with each change, the grieving process evolved and deepened. We could work simultaneously in the present and future on behalf of the client, and of course, them.

My client will not get better. While the mania may pass, the dementia will remain, and her personality will transform into the same shell-like existence of my father’s. The thief has walked straight through the front door of their lives and begun cleaning them out, insidiously and ravenously, until there will be nothing left to devour.

I grieved when my dad was diagnosed, again when the restrictions began, once again when he had to be hospitalized, and finally when he passed. Each phase in the grieving process was familiar because it was the same issue and yet unique circumstances. What I didn’t expect was to continue my own grieving as I watched and witnessed my clients endure the same or similar loss.

But as I grieve, new insights and understandings form. I’m building a new house out of the remnants left behind by the thief. A house that embraces a new normal, gives allowances for grieving, sifts disorganized thoughts, and allows freedom of expression. And so, I am free as well. Free to hate Alzheimer’s.
 

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Bios
Christine Hammond Christine Hammond, LMHC, NCC, is a Licensed Mental Health Counselor in the State of Florida with over fifteen years of experience in counseling, teaching and ministry. She works primarily with exhausted women and their families in conflict situations to ensure peaceful resolutions at home and in the workplace. She has written The Exhausted Woman’s Handbook.