Ambiguous Loss and Other Ambiguities
# 8 AMBIGUOUS LOSS AND OTHER AMBIGUITIES
Ambiguity is significant in every aspect of life.
What movie should we go to? Movie A got good review, but our friend hated it. Or how much over the speed limit can we go and feel confident enough about not getting a ticket.
More serious ambiguities are medical decisions about, say, cancer treatment. Surgery, radiation, chemo all have different outcomes and side effects for a given cancer. With some cancers, there is no clear evidence that one is better or (sometimes) that treatment is better than no treatment.
The most striking ambiguity is called “ambiguous loss” faced by us in relationships, such as a divorce. We have “lost” this person, but they are still here and we have contact.
But a difficult “ambiguous loss” is with a loved one who has long-term dementia (they are gone, but not really gone). This situation is especially difficult because the ambiguity remains for many years and the person continues to lose functioning. More about that later. The current situation is ambiguous in many other ways as well.
First is the obvious issue: Who is this person now? The answer is no longer clear. With Beverly, it might seem clear as many positive elements of her personality have remained. She is still very outgoing and warm; her natural charisma is still neatly blended with caring for others. She looks much the same physically and walks and moves well. And she is often busy trying to help others, a result of her natural inclination and her experience as a nurse for so many years.
But…. Inevitably nearly all of what she says is not quite comprehensible, other than social niceties. The term “word salad” is often used. In recent times, she says words that are clear, but the string of words does not make sense. I have a video recording from February 2020 of Beverly, a staff person, and me; she could still make some sense. She said “Thank you” to a compliment. She said to me about the staff person: “Well I have to tell you. This is a very wonderful lady.” That made perfect sense. Yet other ideas are muddled: “She is having people, children, and bigger roses. One of us days…women…It’s huge; it’s huge.” This was in response to “What do you think of David?” from the staff person. In the following 6 months (mostly under COVID restrictions), the quality of speech has continued to worsen, so all of the sentences seem incomprehensible (by phone or by recent visits through a plexiglass barrier).
She no longer has the social facility that she once had; conversations with others in a group are too fast moving for her, which was never true before. She will try to make her contribution, but someone else talks before she can get her comment out. After this entry problem happens several times, she either gets outwardly upset or she simply withdraws. When I eventually became cognizant of the problem, I jump in and say, “Beverly wants to say something.” But her intended comment is “word salad” and she has likely forgotten what she wants to say after the struggle to get into the conversation.
Then there are boundary problems. Thus when eating out with her, it has been common for her to go to other people’s tables and enter into whatever they are doing. This is easier to justify when there are children there as she is grandmotherly. But, when there are not children, it was often awkward and she stayed too long. In addition, she sometime puts an arm over a stranger’s shoulder. On a few occasions, she put her hand on an unknown person from behind; of course, they immediately turned their head around and fortunately were usually tolerant. Her verbal “salad” must be a clue that she is not quite normal. The medical community seems to refer to this and other boundary issues as related to “disinhibition” which is a general consequence of the disease damaging the frontal cortex. Still what a great type of “disinhibition,” simply being sociable.
On more than one occasion, a new couple (man and woman) arrived to visit a resident and are signing in at the front desk. She will go straight to the man, put an arm around his shoulder and talk to him. The woman will look at all of this, seems puzzled but lets it pass. Some staff member may say, “Hey, Beverly, come see this.” (Redirection)
Then there is the issue of our relationship. It is hard to say how confusing our relationship is, in her thinking. For me, there is a complex ambiguity. We are married, but the marriage is obviously not normal. We cannot relate to each other in a normal way. More on this in a subsequent blog.
There is certainly ambiguity about what she understands. There are confusions that relate to the information she sees and hears. I took the brief “Dementia Simulation” experience, which is informative about the confusing, chaotic inputs that are experienced by those with dementia. Normal visual, auditory, and other inputs are very befuddling for them. Beyond that, it is not quite possible to read her mind. There is an emotional lability that is childlike. She can suddenly be upset, very angry or very sad. Then it may disappear almost as quickly. But she still has an enormous capacity to read other people’s reactions (often correctly), which has led me to know that our “reading” of others is less about words than it might seem.
Part of her inner self is limited by her memory. Of course, recent memories are quickly gone. Then there are many old memories, often out of date for years. She remembers her Mother, but does not know (forgets) that her Mother died more than 20 years ago. Most of us caregivers surely learned soon that we should talk to where they are about such issues; in this case, talk as if her Mother is alive. Otherwise she could cry many times a day if we keep telling her that her Mother has died. She wants to take her lunch to her Mother and I can only say that we will go to her Mother to visit and get food for her Mother when we get there..
Then there is ambiguity about responsibility for one’s actions. This is a frequent issue in the facility. People do inappropriate or harmful acts and they are excused: “It’s just the disease.” I overheard the following: A resident who has an ongoing inappropriate interest in sexual activity said to a very young woman employed as a caregiver: “”We’re having a sex party and everyone who comes has to have sex.” Such behavior he is considered as “not responsible for” because of dementia. But, even so, this man is not always reckless about what he says to whom and in front of whom. I happened to walk by at exactly the right moment or no one except the caregiver would have heard it. Much of the time residents have some sense of what they can get away with. There is some degree of inhibition (who and where) in spite of the disinhibition, This guy’s statement would likely not have been made to one of the savvy caregivers, so it is not that this guy has no responsibility for anything he does or says. Caregivers are skillful at dealing with something like aggression toward them, simply calmly saying, “Don’t do that. That Is not nice.” What the resident takes that to mean is a unclear but it is generally successful at bringing some responsibility into situations. We hold them to a lower level of responsibility. but it would be wrong to just let everything pass. Just how much responsibility to assign is an ambiguity.
To the starting point: there is great ongoing ambiguity about my loss and my grief. Beverly, the person with dementia that I love is gone, but they are still here. We mourn what we have lost, and the mourning never ends. (Note: This discussion relies on the work of Pauline Boss, a social worker who has written books about the issue: Ambiguous Loss and Loving Someone Who Has Dementia). Beverly is no longer here in many ways, yet she is here. I mourn for what I had before her dementia, but is it appropriate to mourn when she is still in my life? When a loved one dies, they are clearly gone and we have “closure” followed by a reasonable period of mourning. Extended mourning in this ambiguous situation involves the lack of closure; it is stressful and it can be lonely. We need others who understand and empathize. I feel fortunate that there are others for me, including our children, my siblings, and her siblings. Among the many elements of this ambiguity that Boss discusses is this: “I want this to continue (my life with her)” vs. “I wish this was over.” Both thoughts are there for me; though contradictory, they exist simultaneously. In a support group where this was discussed, one person said about her spouse, who was advanced, “This is not ambiguous; I wish it was over.”
I cannot control the process she is undergoing; we, like others, tried every intervention that seemed to us to be promising, and maybe there was some success. But we have to accept the reality that she is here and not here at the same time. One of Boss’s main messages in her books is that we need to learn that it is not “either/or” but “both-and.” She is both here and not here. The ambiguities are multiple in all of this: I went every day to be with her and cared much for her. But there were times, usually while driving to the facility, when I told myself that I did not want to go, followed by guilt about having that thought. We have to learn to accept the ambiguity of our feelings. And then there is the ambiguity of where I am in life. My life had centered on caring for her, but that life is so restricted that I need some life outside of my caring for her. I need activities and social relationships. And I need to manage the loss I feel for her. I have learned to tolerate these ambiguities most of the time. Still the reality comes up on occasion and the grief can be powerful & overwhelming.