Talking About Trauma

The causes, treatment, prevention, and implications of trauma

Forget Me Not: Caring for a Spouse With Alzheimer's

Caring for a loved one who doesn't know who you are

“It is very difficult to know that she does not remember the things from our past. It’s devastating.”

Alzheimer’s disease accounts for 64% of all forms of dementia and is characterized by gradual memory loss. As the person suffering from Alzheimer’s progressively loses critical brain functioning, they gradually experience a decline in normal cognitive abilities such as being able to remember past events, experiences, and feelings. As a result, the individual may not remember loved ones, including the person closest to them, their spouse.

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Profound loss of memory has serious implications for the spouses of Alzheimer’s patients. Over time, the common ground and shared history that allow a couple to remain together for years diminish and come to exist only in the mind and heart of the healthy partner.

The Trauma and Mental Health Report had the opportunity to talk with Moise, a 98 year-old who over the past twelve years, has been caring for his wife of 65 years; she is diagnosed with Alzheimer’s. Although it was difficult for him, Moise wanted to share his personal account. His description paints a rather grim picture of the realities faced by those affected by Alzheimer’s, and speaks to the challenges faced by family and friends of those living with the disease.

“[Her condition] is very difficult, impossible almost. She is incontinent, does not recognize or comprehend anything, and sometimes she is not even conscious…she was diagnosed twelve years ago, and with time it became worse and worse. This disease also has physical consequences, and those are very hard to live with. It is difficult for me to take care of her by myself so we have to have someone with us 24/7 to provide assistance.”

The physical deterioration may indeed become unbearable and may include compromised gross motor skills (walking, balancing, sitting) and fine motor skills as well (writing, using utensils). Linguistic abilities are also impaired, difficulties may begin with the occasional mispronunciation of a word and progress to an inability to use words altogether.

Structural and chemical alterations in the brain affect all aspects of the Alzheimer’s patient and often lead to personality change, affecting the couple’s relationship. Mood swings and aggressive behaviour are also common and require the healthy partner to remain understanding. One common phenomenon is referred to as sundowning: During the late afternoon to evening, the Alzheimer’s sufferer grows more demanding, suspicious, and disoriented, and may perceive things that are not real. Instead of functioning as partners in a shared relationship, the healthy spouse may take on a parenting role.

As Moise explains, “It is very difficult for me that she does not remember me… very hard for me to see her like this. It is a horrible disease that cuts through the person’s memory; it makes her create her own alternate realities, none of which I am part of. She does not know who I am, she can’t do anything on her own and she is no longer independent in any of the day-to-day actions she used to be able to do.”

The solid foundation of a relationship that stems from a life-long partnership is challenged by the fact that the other person simply has no recollection of past events. Without these memories, the individual suffering from Alzheimer’s can no longer fulfill natural family roles.

“She doesn’t remember her own children and grandchildren. It’s very emotionally draining so I usually don’t like it when people come to visit because she is never well and I don’t like people seeing her like this. It pains me that our grandchildren did not get to really know their grandmother, even though she is still with us.”

“She does not know who I am. For the most part, she keeps looking for the “other” Moise that is her husband. And according to what she perceives, I am not him.”

How can one continue providing love and support to someone who does not know who you are?

Losing one’s spouse to Alzheimer’s is often a slow and emotionally painful process. Many of us choose a life partner for reasons like companionship and security. We make the assumption that we will have someone to share experiences with over a lifetime. For the patient’s loved ones, such companionship is no longer possible. Are there moments of joy when the individual regains her memory? Moise says there are, but they are few and far between.

“Unfortunately, there is nothing special I can do to get her to remember me; it comes on its own. Comes and goes, and all of a sudden I am Moise again, her husband.” Those moments are precious, but they are the exception.

 

-- Contributing Writer: Noam Bin-Noon, The Trauma & Mental Health Report

-- Chief Editor: Robert T. Muller, The Trauma & Mental Health Report

Copyright Robert T. Muller

Robert T. Muller, Ph.D., is a Professor of Psychology at York University, and author of the therapy book, "Trauma and the Avoidant Client."

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