The Trauma of Caring for a Spouse with Alzheimer’s

While there are several forms of dementia, the most common is Alzheimer’s disease, which accounts for 64 percent of dementia. Its hallmark symptom is the progressive loss of cognitive function, and a gradual loss of memory. When the person with Alzheimer’s experiences this decline, he or she may no longer remember even the people he loves the most.

This loss of memory can be profoundly traumatic for caregivers, particularly when the carer is the spouse. As time passes and the condition worsens, both partners lose the shared history that they may have spent decades building.

A recent article in Trauma and Mental Health Report focused on Moise, a 98-year-old who has been caring for his wife for the past twelve years. They have been married for 65 years; now she is afflicted with Alzheimer’s. Moise’s story is a difficult one, but he wanted to share his experience. He first explained her current condition:

[It] 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 of patients generally includes impaired gross motor skills, such as walking, balancing and sitting, as well as the fine motor skills needed for writing and using a knife and fork. Language abilities are lost, beginning with a mispronunciation of words and progressing to a total inability to use words.

Along with the functional deterioration are the personality changes, which may include mood swings and aggression. There is a phenomenon called “sundowning”: During the evening, the Alzheimer’s patient may become more suspicious, disoriented and suspicious. The spouse must change roles, from lover to parent.

Moise says:

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.

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.

Moise’s story emphasizes the importance of recognizing the trauma suffered by spouses and other familial caretakers of Alzheimer’s patients. Caretakers are deprived of loving companionship and the future for which they hoped and planned.