“It Was Very Embarrassing”

“Studies frequently describe the distress resulting from the [patient’s] wandering, embarrassing behavior, and verbal outbursts,” reports The Journals of Gerontology. For example, Gillian describes what happened after a friend at a Christian meeting asked to meet her aged mother. “Mother just looked blank and did not respond,” recalls Gillian sadly. “It was very embarrassing and brought tears to my eyes.”

“It is one of the most difficult things to cope with,” says Joan, whose husband has dementia. “It makes him a little insensitive to etiquette,” she explains. “When we are dining out with others, he sometimes goes to other tables in the dining room, tastes the jam, and puts the used spoon back into the jam dish. When we visit neighbors, he may spit on the garden pathway. It’s very difficult to rid myself of the thought that others are probably talking about these habits and perhaps regard him as sadly lacking in manners. I tend to curl up inside.”

“You May Grieve for the Way They Used to Be”

“Grief is a normal experience for people coping with a loved one who has a chronic illness,” states Caring for the Person With Dementia. “As the patient’s illness progresses, you may experience the loss of a companion and a relationship which was important to you. You may grieve for the way they used to be.”

Jennifer describes how her family was affected by her mother’s steadily declining health: “We felt hurt. We missed her vivacious conversation. We were very saddened.” Gillian explains: “I didn’t want my mother to die, and I didn’t want her to suffer. I cried and cried.”

“I Felt Rejected, Angry”

A caregiver may wonder: ‘Why did this have to happen to me? Why don’t others help? Can’t they see I’m not coping well? Can’t the patient be more cooperative?’ At times, the caregiver may feel very angry about what seem to be growing and unfair demands made on him by the patient and by other family members. Rose, mentioned in the introduction, says: “I am more often angry with myself—in my head. But Mom says it shows on my face.”

The one providing the care may bear the brunt of the patient’s own frustrations and anger. In the book Living With Cancer, Dr. Ernest Rosenbaum explains that some patients “may at times experience rage and depression that will seek as their target the nearest available person . . . This anger is usually manifested as irritation over trivial matters that in normal times would not even concern the patient.” Understandably, this can put added strain on the frayed nerves of the loved ones who are doing their best to look after the patient.

Maria, for example, did commendable work nursing her dying friend. On occasion, though, her friend seemed oversensitive and jumped to wrong conclusions. “She would be very cutting and rude, embarrassing loved ones,” Maria explains. How did this affect Maria? “At the time, one seems to ‘understand’ the patient. But on thinking it over later, I felt rejected, angry, unsure—and not inclined to show needed love.”

A study published in The Journals of Gerontology concluded: “Anger has the potential to mount to a high level in caregiving situations [and] sometimes results in actual or contemplated violence.” The researchers found that almost 1 out of every 5 caregivers feared he might become violent. And more than 1 in 20 actually did get violent with his patient.

“I Feel Guilty”

Many caregivers are plagued by feelings of guilt. Sometimes the guilt comes on the heels of anger—that is, they feel guilty because they feel angry at times. Such emotions may drain them to the point that they feel they can’t go on.

In some instances, there is no alternative but to have the patient cared for in an institution or a hospital. This can be a traumatic decision that can wreak havoc with a caregiver’s emotions. “When finally forced to take Mother to a home, I felt I was betraying her, discarding her,” says Jeanne.

Whether the patient is hospitalized or not, his loved ones may feel guilty that they are not doing enough for him. Said Elsa: “I often felt bad that my time was so limited. Sometimes my friend just wouldn’t let me go.” There may also be concern over neglect of other family responsibilities, particularly if the caregiver spends a great deal of time at the hospital or must work longer hours to help pay for mounting bills. “I have to work to help with the expenses,” lamented one mother, “yet I feel guilty because I can’t be at home for my children.”

However, there is a significant proportion of caregiving done by men, says Dr. Lewis. For example, husbands with wives who have Alzheimer’s disease are a fairly large group. And they are certainly not immune to the stresses of caring for a sick loved one. “These men are perhaps the most vulnerable of all,” Lewis continues, “because they are usually older than their wives and may be in poor health themselves. . . . Most of them are not trained in the practical aspects of caregiving.”