To say I hate a disorder as a therapist is a big deal for me. I specialize in personality disorders and have found beauty and giftedness where most see dysfunction. I don’t hate any other disorder, even the ones that tend to be destructive. But Alzheimer’s is different. A personality disorder can be understood and even managed. But Alzheimer’s cannot.
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 and moves around other items, so they appear to be lost but are not. Sometimes it breaks things and leaves the pieces behind in unrecognizable form. 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 dad had Alzheimer’s. Watching him fade away was one of the most difficult experiences of my life personally and professionally. It challenged my ideals, tested my patience, expanded my knowledge, and wore me out. What I didn’t know then but realize now is just how those years traumatized me. It is a form of C-PTSD to have a parent who was never abusive act and behavior 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. These are some of the things I learned along the way.
- They are not lazy. They are struggling to do even the most automatic routine. As Alzheimer’s progresses, the brain losses 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. This combination makes the progression distinct for each patient. The patient is not responsible for how either of these parts operates 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 their personality, and leaves a shadow of their existence behind. 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 condition is exaggerated. It is 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 it 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. They 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 them because they don’t remember so there is no point in visiting. Stopping by to receive recognition, approval, or attention will not be rewarded with an Alzheimer’s patient. More often than not, 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. This is called 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 no cure yet. Perhaps one-day things will be different as more research is conducted. The good news is that there is medication available 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. 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.