"Away From Her": Ostracism and Alzheimer's Disease
As Anna and I discussed the movie, “Away from Her,” one scene – albeit a small one – rang very true for both of us, based on our caregiving experiences. The main characters, husband and wife Grant and Fiona, are having dinner with another couple. Fiona, who is suffering from the beginning stages of early-onset Alzheimer’s, struggles to remember a point that she wants to make in the conversation.
The couple’s comments to fill in the silence appear to be nice and joking, but there’s a hidden dagger lurking inside. At least to Anna and me, the comments were the telltale sign of early ostracism setting in, the “you’re different (and failing mentally), and we’re going to make a point of bringing attention to that fact.”
Anna and I both found that scene heartbreaking. Just when Fiona needed some positive attention and empathy, the friends started to pick at her because of her memory loss. They couldn’t find empathy for Fiona’s condition, or, at least, the scene didn’t show it.
Ostracism, unfortunately, was something my mom faced during her experience with Alzheimer's. My parents moved back to West Texas in 2000. About two years later, Mom was showing signs of memory loss. I encouraged her to get out and visit with her long-time friends, but she said they were too busy. I even called her friends on the sly and told them about my concerns; they promised to follow-up, but really didn’t.
Mom got more and more withdrawn and isolated. Just when she needed support, there was none to be found. Now let me also say that I do realize that Mom was at fault for not seeking out her friends as well; her theme song concerning reaching out to folks (whether family or friends) always was the same: “I don’t want to be a burden.”
Still, I think that if some of her friends had made consistent efforts to get in touch and stay there, Mom would have perhaps opened up and discussed her concerns about her memory loss and related issues. We might have gotten an early diagnosis of what was going on and could have gotten her on medication much sooner.
I’ve found that those with Alzheimer’s and dementia are left alone in nursing homes as well. I can remember vividly when I was visiting Mom one time when she lived in the secure unit. One of the residents, who appeared to be a very sweet lady, never had any visitors. I asked the nursing staff about her situation. The staff told me that this lady’s son would only come to the door of the secure unit to drop off necessary supplies (and expensive presents), but would not come in to actually sit down and visit his mother. So this lady spent all holidays (such as Christmas and Mother’s Day) alone without the support of her adult son.
Anna’s experience with ostracism was similar, in that it also involved family members. In one case, Anna's mother, who didn’t have dementia and who lived with Anna and her husband, was assumed by her siblings to be Anna’s sole responsibility. These siblings, one of whom lived in the same city as Anna, didn’t check to see what they could do for the mother, instead assuming that it was Anna’s place to take total responsibility for caregiving.
Then there was Lorraine, Anna’s backyard neighbor. As Lorraine was battling Alzheimer’s, Anna ended up becoming the main person to oversee Lorraine’s care until her death a year ago. Again, Lorraine’s family didn’t come to visit and rarely tried to figure out how to offer their support to their mother. They left Lorraine alone; without the support of Anna and the team of nurse’s aides, Lorraine could have placed herself and others in serious danger (especially since she was still driving).
I admit that it’s uncomfortable being around someone with dementia, no matter what stage. In the early phases, you want to keep the conversation flowing, not wanting to pause to let the person work through and then verbalize his or her thoughts. In the later stages, there often isn’t a conversation; instead, it’s silence or a jumbled mass of words with no coherence. Still, Anna and I both have come to believe that empathetic support is important to the emotional heath of the loved one who is facing such a difficult situation. This person deserves the care and support of each and every friend and family member who has prevously benefitted from the relationship with that person in the past before dementia was diagnosed.