My dad had Alzheimer’s. Watching him fade away was one of the most difficult experiences on my life. It challenged my ideals, tested my patience, expanded my knowledge, and wore me out. These are the some of the things I learned along the way.
- Don’t say they are lazy. They are not; this is part of the disorder. As Alzheimer’s progresses, the brain losses its ability to process, recall, and reason. 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.
- Don’t assign meaning into what they do and don’t remember. The brain organizes information in a variety of ways, almost unique to each individual. 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 operate or worsen.
- Don’t take comments personally. This is particularly difficult especially when the comments are hurtful and said in anger. The Alzheimer’s Disorder steals the person, 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.
- Don’t believe the “show”. Some Alzheimer’s patients have the ability to 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.
- Don’t challenge the 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.
- Don’t expect them to remember. 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 and what is not.
- Don’t abandon them. It is easy to justify that because the patient doesn’t remember, there is no point in visiting them. 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.
- Don’t hold onto their angry responses. It is not uncommon for Alzheimer’s patients to become confused as the sun goes down. This is called Sundowners Syndrome. As the disorder progresses, any change, including increased darkness, can be a source of uncertainty and fear. Anger is a basic 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 will hurts the caregiver, not the patient.
- Don’t hope they will improve. This is a degenerative disorder for which there is no cure. 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.
- Don’t compare. 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.
This is the time for a strong support network of empathetic family and friends. Be intentional about seeking out professional assistance during this time to reset expectations, learn about the disorder and process the difficulties.