Remember when Princess Diana said that the problem with her marriage is that there were three people in it? She was referring to Charles’s liason with Camilla that lasted throughout his marriage to Diana.
Caregivers of Alzheimers patients can have the opposite problem. As one caregiver said, “There’s only one person in this relationship, and it’s not me.”
Strong healthy relationships require some give-and-take between the parties: each party gets to take the stage and hog the mic some of the time, but then has to give it up to the other.
If one person says, “I had a rough day today!” the other one is supposed to ask, “What happened?” When one person tells a funny story, the other gets to tell one too. One person gives his explanation for what’s wrong with the country; then it’s the other one’s turn. It’s this sharing of experiences and creating lines of thoughts together that builds relationships.
Unfortunately, Alzheimers sometimes makes any semblance of equality in a relationship difficult or impossible. When the person you care for cannot understand what you’ve been through at the office today, or what’s wrong with the car, or why you feel bad, they can’t empathize. When they can’t remember that your hands hurt with arthritis or that your sister is sick or that your boss is unreasonable, they can’t support you.
As occupational therapists often explain to family members following a stroke that caused memory loss, the person may lose the ability to focus on external events, remember them, and account for them in their interactions with others. What is real and important to them is what they are noticing, thinking, feeling, remembering, wondering about, worrying about, or interested in at the moment.
And of course, because short-term memory is absent, they have no way of tracking how much they have talked compared with how much others talk. They have no clue that they are dominating a conversation - or the relationship.
One cause of stress in caregiving for someone with dementia is that the caregiver feels alone, neglected, and isolated in a constant stream of attention directed toward the other. One woman who was caring for a husband with Alzheimers said, “There’s no room for me anymore.”
This is no cause to blame or shame the person with dementia, of course. It’s not their fault they can’t remember. But it’s one of the reasons that it’s so important for caregivers to be supported by family, friends, community groups, and professionals. We all need relationships where we count.