Alicia watched the deterioration of her mother’s mind in agony. She wanted it to stop. The emotional pain was overwhelming. Her mother was becoming a shell of who she was and worse yet, her mom was unaware of what was happening. The diagnosis of Alzheimer’s seemed like a death sentence. Alicia wanted the progression of the disorder to slow down or at least pause for a moment. But it didn’t. One day her mom seemed normal and then within minutes, she didn’t know where she was or who Alicia was. The pain was unbearable.
Alicia was emotionally drained, physically exhausted and mentally challenged. Alzheimer’s steals parts of the brain in random patterns turning a functioning person into an adult like a toddler. What they can do one day, they can’t another, then they can again briefly, only to lose the ability once more. Alzheimer’s is like a reoccurring thief stealing bits and pieces at a time, rearranging items so they seem lost, and ransacking the brain so it is unrecognizable.
The hard part is that Alicia felt alone even with her siblings. The closer a person is to the Alzheimer’s patient, the worst they see. Many times, her mother could “pull it together” to impress Alicia’s siblings and seem relatively normal. But Alicia, her mother’s caretaker, the person who was there every day caring for all the needs of her mother, bared the brunt of her mother’s attacks, confusion, and deterioration.
Because the needs of her mother was so great, it became easy for Alicia to dismiss her own emotional well-being. As her mother transited into a worse progressive stage, Alicia needed to take some time to process the dramatic shifts. Here are some other areas to consider.
Confusion. One of the early signs of Alzheimer’s is confusion over family members, favorite locations, or regular activities. In the beginning, it seems as if the patient is playing dumb or a joke about what they can and cannot remember. At first, the patient goes along with the laugh but later it becomes 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. Caretakers should go along rather than fight the confusion. 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 a two-year-old. It is as if the confusion of the day builds to a crescendo which is 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 based in reality, rather they are exaggerations and extremes of delusional thoughts.
Disintegration. The negative progression of the disease means that one day the patient can button a button and the next, it is completely forgotten. One day the patient remembers to eat and the next don’t. 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 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. As the disease progresses, the patient becomes more infantile in their abilities.
Delusions. One of the scariest parts of watching the progression of Alzheimer’s is hearing and seeing the delusions. A patient can watch something on TV and be transformed 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 backfires into an angry rage where the patient believes that everyone is against them and can become paranoid. 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 fluid and fully aware of their circumstances to the point that they seem normal again. The fog from their confusion lifts, their natural mood is returned, 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. For they 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.
It is imperative that the caretaker gets help during this time. Alicia began attending a local support group with others experiencing the same circumstances. This helped her to cope with the dramatic shifts in her mother’s personality. More importantly, Alicia began paying attention to her own emotional needs by setting boundaries and resetting expectations when appropriate. This is not a task that can be done alone, it takes an experienced team to work with Alzheimer’s patients.