Author: Thomas Baird LCSW, Mdiv
Quick reminder: In this space, we will regularly be writing about topics pertinent to dementia care, while focusing on articles, books, or online publications that have caught our attention. See our first post for more details.
From Loving Someone Who Has Dementia, by Pauline Boss, PhD:
"Although stressors may differ, each of you will have your own perceptions about your loved one's dementia and what that means to you. Whether I meet with individuals, couples, families, or groups of families, I always ask this question: 'What does this situation mean to you?' Rigid thinking blocks coping. Indeed, answers often vary within couples and families, but it's all right for family members to see the situation differently. When a loss remains unclear- as it does with dementia- people understandably disagree on what it means. I tell them to simply listen to each other's views." ( p. 49)
The author of this book is known for her remarkable work on the topic of "ambiguous loss," in which she makes sense of deep pain that hadn't previously been given a name. You can find some small tidbits on this topic HERE on our website, but you really should read directly from the source. Identifying one's pain can be truly cathartic, and grasping the ambiguity of an ugly situation can often allow one to strive less for finite answers, and attain some peace.
Dr. Pauline Boss goes on to explain that ambiguous loss will lead to diverse coping responses. While there is no "right" response, it is vital that loved ones do not think "rigidly" when interpreting others' perception of loss, because it limits their ability to communicate with one another and cope together.
During my first job in hospice, I worked with a large number of patients living with dementia. During this time, my direct supervisor continually stated that judgement has no place in our work, because individuals cope and live so diversely. It is easy to look at someone and say "They should visit their mother more," or "They obviously care more than the rest of their family." We all have this response at some point (even if we've been trained to have awareness of such responses!). However, these statements are mostly counterproductive. The experience of dementia symptoms is unique to each individual, and our responses to these symptoms are unique as well.
It will always be easy to get frustrated by other family members when a parent or loved one is suffering from dementia. You will each view the disease process differently, and this can lead to deep arguments regarding care. Family members can feel betrayed when others don't seem to care as much. In turn, those other family members may be offended by the implication that they do not care. Some may view the loved one as "entirely gone" and may flippantly dismiss efforts to bring higher quality of life. Others may view the afflicted loved one as having no problem whatsoever, and minimize symptoms. It is best to allow others to have their views, while encouraging education (for each of you). Seek out experts that can help. If the family conflict is disrupting care in some way, it is vital they they feel heard so that your loved one can experience some peace and continuity.
Thomas Baird LCSW
Maggie Dawson MSW