Malevolent transformations, post-ambiguous loss.
Sharon R. Kahn, Ph.D
[I wrote this three years ago. The only thing that has changed is my mother is now in a rehab facility in NJ].
Every night, I talk to an elderly woman via telephone. Every night, I put down the phone and wonder to myself, like that fictional Seussical creature, “Are you my mother?” But I don’t laugh, but weep. Three months ago, my mother had a total left knee replacement surgery (TKR). Two days after that, she was placed in a rehabilitation facility. There, I discovered the surgeon had not only replaced my mother’s arthritic knee and given her a plastic replacement, but ripped out my mother’s very essence. My mother is my ambiguous loss. She doesn’t act like my mother, but a patient, wanting reassurance, emotional support, and advice. And I feel angry and withholding, because my mother shouldn’t be in that position to me. And I don’t want to serve as such to her.
Ambiguous loss is a construct coined by Pauline Boss in 1999.[1] She defines this as a:
…loss that remains unclear. The premise of the ambiguous loss theory
is that uncertainty or lack of information about the whereabouts or status of a loved one as absent or premise, as dead or alive, ambiguity… freezes the grief process…blocking coping and decision-making… (Boss, 2007).
Later, she defines the consequences: “when relationships are unclear and closure is impossible, the human need for finality can ….traumatize families.” (Boss, 2007) Ambiguous loss is “not quantifiable, it exists phenomenologically” (Boss, 2007)[2].
I have no surety that my mother will recover from TKR sufficiently to ever regain the limited quality of life she had previously
I first noticed emotional changes in my mother after the death of my father 2 ½ years ago. I first noticed physical changes in my mother 10 years prior, when on a visit to me in New York, she was walking carefully, slowly, and delicately. I asked her “why are you walking like a ruptured duck.” She say, “I’m not. Nothing’s wrong.” But I knew something was. Almost a year later, she arose from her desk at work to copy some file and “got her heel caught in a carpet fiber.” She fell to the ground and fractured her hip. I did not find out till a week later. Whenever I called home, my father answered the phone and told me, “She’s in the shower.” Scarcely five minutes would pass and she would call me back. I started to get suspicious after the third time this happened. I said to my father, “Why is she always in the shower at this time of night?” He had no response. That night, my mother called me back and said, “I’m in the hospital, I fractured my hip at work.” I said, “Why didn’t you tell me in the first place?” She replied, “It’s none of your business.” That’s my mother. She doesn’t need caretaking. She is the caretaker. And certainly her daughter would never be her chosen caretaker. Up until three years ago, I have never needed to buy postage stamps. She would regularly mail care packages replete with stamps, high percentage cocoa chocolate bars, office supplies, and novels.
On January 6, 2013, my father passed away at age 88 ½. My mother has not been the same since. My mother has known for years she will require total knee replacement. She has “bone-on-bone” arthritis and alleviating measures had no impact. Last March, she decided that she would have the surgery and it was scheduled for May 2015. A few days later, she had trouble arising from a seating position and realized that she couldn’t wait for May. Total knee replacement on her left knee was done a week later. The surgery seemed uneventful. However, within 24 hours, when the nurse got my mother up, my mother cried out, “Oh, I broke my new knee.” However, the x-ray showed nothing.
My mother and father relocated to Northern Virginia from New Jersey 30 years ago. I was studying for my doctorate in psychology in New York City and living independently and saw no reason to go with them. Now I support myself as a full-time academic psychologist teaching undergraduates. My employer offers no pension. I have little savings. I pay for the bulk of my health insurance. I have long accepted that in my life, it is work or die. My employer’s philosophy is, “thanks a lot and out with the garbage.”[3] My brother, a software engineer who resides in New Jersey, and with whom I’ve long had a difficult relationship with, has a more flexible schedule and owns a car. He did go down after the surgery with his wife and stay for two days, until she was transferred to a rehab facility. Then he left, right after the transfer. I begged him not to. The one thing I always tell people, having been in a health care facility for four days following a bike-riding accident, is that no one should be alone in any large institutional setting. Period. I wanted him to stay so that I could have time to go down for the weekend and he could at least give me a ride to the rehab facility and back to my mother’s apartment during that time. My mother was insistent that I not make the journey. “I’m begging you not to come here.” Like my wanting to see her was an act of malevolence against her. She told my brother to go home and not bother with her. My brother told me he was leaving Friday and he was “respecting her wishes.” I said, “You are heartless.” He said, “I’m hanging up now.” I said, “I’ll go first.” I believe I did. I burst into sobs. I cried so hard I thought I would never stop. There seemed no end to my tears. I tried to stop by going to the bathroom and staring at my pathetically swollen, red-eyed, tear-stained face and watching mucous tumble speedily out of my nose, onto my shirt hoping the appalling spectacle of horror would shock and calm me, to no avail. You don’t respect the wishes of someone who is severely depressed when it is antithetical to good emotional health or only furthers psychopathology. If my niece tells my brother she wants to get married on the beach at sunrise with only the groom and her two best friends, he can respect her wishes. If she tells him all she wants as her wedding gift is the antique table she damaged as a five year old, he can respect this. When his mother tells him she wants to be alone and be unattended in an institution, that is not something to respect. But how could I get to the rehab facility in a remote area of Virginia that had no public transport. I called up the rehab facility and they could give me information only for how to get there by car. It was possible to take the Metro to a stop and then get a cab to the facility too. But public transit alone would not avail. I looked up web site for the taxi company that my mother always uses at her home and found there was a trip calculator on site. I plugged in the information and found it was a $40 ride to and fro—which when you figure that Amtrak charges $170 for a one-way ticket to Washington DC, didn’t sound horrible. I stopped weeping and the next day, purchases my ticket to DC and arrived Friday evening at my mother’s apartment. I called her at rehab to let her know where I was and that I was visiting tomorrow. She again insisted I not come and again, “begged” me not to. I held on to myself long enough to insist and then when I rung off, started to weep over and over again, till I was in physical pain. Why does my mother treat me like a malevolent manqué? I want to make sure she is safe. I want the staff to see she has children who care and come around. I want constant visitations to chase the dark thoughts and fears from my mother’s psyche to the utmost extant. I feared her being retraumatized by her institutionalization. When my mother was an infant, her mother fell ill with pneumonia, received too much oxygen and was hospitalized for a lengthy period of time. My grandfather had to work, there being no insurance to pay hospital bills and doctor’s fees in those days (much like our own). My mother was farmed out to elderly aunt-in-laws, who were disinterested in her infant care. They shoved a cookie into her mouth whenever she cried. They ran vacuum cleaners to frighten her into quiet. Until Hilary Rodham Clinton talked about her mother’s childhood, I had never heard of a more Dickensian start to life. I feared being in rehab would retraumatize my mother—indifferent, underpaid, understaffed place that any institution is these days.
I went out the next day to visit. McClean Virginia is a elegant town with many beautiful residences—none of which I will ever be able to afford in this life or in any other to come. My mother’s rehab facility was gorgeous—like a fine old European hotel, replete with little cafes, a library area, ginormous screen television (showing the movie, “Caine Mutiny” that day). Mobile elderly people were pegging along using canes and walkers. Everything was clean. There were stanchions of water, tea, and coffee placed on every floor. Staff were friendly to me as I asked directions to my mother’s room. I was told she was in 410B. I found 410 B and walked in. Only one woman was in that room. She was not my mother. Her face was longer than I remembered. She was shorter than I remembered. She was more haggard than I remembered. Where was my mother. I walked back out and asked where my mother was. They again replied 410 B. I went back in and out. Where was she. An aide walked me in and my mother looked up. I still didn’t recognize her as my mother, but she was responding to that name.
I had brought single serving boxes of cereal and a puzzle. I had downloaded a manual of recovery for TKR, as she was complaining that her feet felt like lumps. She was not interested. She was distressed by the gifts. They were clutter. She didn’t want clutter. She didn’t want information. She didn’t want consensual validation for her somatic differences. She didn’t want to go out to the common room to see the movie. During my stay there, a social worker came in because my mother had not yet completed the forms necessary for the rehab to get reimbursed. After two hours, my mother shooed me away, worried that I would have trouble getting the cab to pick me up or that I would hit traffic. She insisted I not come the next day, which was Sunday, so I went back to New York that day. Needless to say, I went back to my mother’s apartment, weeping and weeping again on Amtrak. Monday morning I tried to get my mother friendly visitation from the various Jewish agencies in Northern Virginia. The first one I called I made the mistake of telling the social worker a little of my mother’s Dickensian childhood, in hopes that they would fast-track some sort of friendly visitation, some Virginia equivalent of New York’s Bikur Cholim, Jewish volunteers who visit hospitalized individuals. She tried to find out if my mother belonged to any Jewish institutions or society. My mother was never a joiner. In the 30 years she has lived in Northern Virginia, she worked full-time until she retired six years ago. She doesn’t join social organizations. She doesn’t volunteer. She doesn’t take academic courses. My mother was married to my father for almost 60 years. Her whole identity is based on being Sam’s wife, Sam’s helpmate. When my father passed away, she was 78 years old. She’d been with my father since she was a teenager. Now she has to find a new identity, and she resists resentfully. This social worker decided that if she sent a rabbi over for friendly visitation, since he could only stay a short time and might only be able to come the once, it would “retraumatize her.” They did nothing further. Finally, I ended up calling the JCC. They didn’t care that she was not a member. They had a nursery school class make cards wishing her a speedy recovery. They tried to send her visitors, but when they phoned to try and find out my mother’s schedule, she brushed them off. I tried. She wants my father there to reassure her, but he cannot do that for her now.
I went up two weeks later again to the rehab and she was much the same. She was not making a speedy recovery. She could not walk with a walker. She could not pull herself out of bed to the walker. However, her orthopedist took another x-ray of her knee and discovered a fractured femur right above the TKR. They put a brace on it. I tried reassuring her that she knew her body best—she knew something was wrong right away. It takes 10 days for a hairline fracture to show up on an x-ray—and that only because it shows mineralization then.
After that, I had several conferences to attend in far off cities. When I came back, the rehab facility decided that she was not making “sufficient progress” there (translation—no Medicare payments) and turfed her out to her home. Since then, she has had to hire two assistants for 24 hour care out of her own pocket. Medicare does pay for physical therapy and occupational therapy---and so far she is making progress, so Medicare will renew them on a monthly basis. Although she is making enough progress to get these services, she is depressed that she is not making clinical progress—she cannot walk straight with a walker, she cannot walk with a cane yet, she cannot walk the distance from her apartment door to the building’s elevator (a distance of about 50 yards). Her left leg is now shorter than her right by a good two inches. Her right knee is also going to require surgery one day. Her feet still do not feel like her feet.
Nothing medically is wrong with my mother. She does not have a heart condition, diabetes, thyroid problems, kidney disease, or, circulatory problems. She takes no medication. She does not complain of pain. She just had TKR. She has tremendous anxiety about her prognosis. The combination metamorphosed her into a patient, but not of mine. And so I lost my mother in a Northern Virginia hospital.
I have not visited since she left rehab. I feel angry that she not only is this woman not my mother, she simultaneously seems to have no motivation to resume her life. I feel guilty that I am angry at this frail, elderly person. I don’t have the emotional energy to go down there. I can’t put my feelings on an imaginary shelf and pretend that she is a patient or some acquaintance’s mother for whom I am doing a good turn by visiting. I worry about the finances of travel. I feel alone. I seek consensual validation. So I took an informal poll of two girlfriends, who are much in the same position with their mothers. Both women are in their early fifties. Both chose not to bear children. Both are in stable heterosexual relationships.
One friend, who is my guitar instructor, told me she had started to notice changes in her mother about four years prior. She would go out to visit once a week and help her mother buy groceries. Her mother started to have trouble remembering how to get to the supermarket, how to make turn signals on the car. It was “terrifying” driving with her. Then she started to notice that the food wasn’t being eaten—it was still in the pantry. She’d ask her mother, “what did you eat?’ Her mother would insist that she’d eaten the food previously bought—but it was still in the house. My instructor and her sister decided they didn’t want their mother driving. They didn’t want her living alone. It made her feel sad. She said to me, “Getting old and losing yourself. It wasn’t who she was. She stopped doing anything social. She used to have bridge partners and friends in the community.” It made my instructor unhappy. She and her sister began to cooperate: “We couldn’t let her live by herself. My sister made a bedroom for her. I made room for her in my apartment.” Her mother now divides her time with her daughters. My instructor does her best “not to show impatience” in front of her.” It requires a new relationship between her and her sister and her mother. They must coordinate their schedules as to who will be caring for their mother. Although she and her sister were not close, they now cooperate with each other for the benefit of their mother. So the loss of their mother has positively transformed their relationship. She compartmentalizes how she feels about caring for her mother by transforming this change into one required of having long-term house guests with special needs.
Another friend, who is a physician, noticed her mother changed five years prior, about a year after the death of her father. She was depressed and lost weight. She was frailer and losing memory. She said she didn’t need help, as husband left her well situated financially. Three years ago she started to have lung difficulties. She walked less. She tired easily. She was sleepy. Her memory deteriorated. She is more unrealistic. This friend has an older brother. He is a recovering drug addict with serious health concerns. He has Hepatitis C and memory problems (which might be the beginnings of Wernicke’s). He lives on disability income and may be stealing money and valuables from his mother’s apartment. He doesn’t drive or even have a license. Yet, her mother prefers the brother to care for her, as unreliable as he is. This makes my friend feel sad and frustrated. She lives in California with her husband and comes to New York to care for her mother several times a year, each time from four to six weeks. Her mother has an “impressive” list of medications that have to be monitored. She has Diabetes 1 for almost 75 years. She has a heart condition. She takes memory medications and anti-depressants and thyroid medications. Her mother is aware that she doesn’t look as good as she used too. She’s not as social. She has a limited circle of relatives who visit. My friend feels “sad and frustrated…I wish she’d appreciate me more. She doesn’t say she loves me. I always come back here, do her exercises with her, massage her neck. I wish she was better, but she wasn’t that great. She didn’t love me before.” Her relationship with her brother is just as strained as it ever was. He is on disability and wants her to give him money. She limits how much money he receives from her mother. He finds her intolerable and disparages her caregiving because she places boundaries on him and insists he follow rules. “It’s never been done, “so he feels she’s treacherous.” Other relatives can be stress-inducers. A cousin threatened to call her mother and tell her she needs to “teach us to play nicely.” My girlfriend, meanwhile, bought her brother a one bedroom apartment on the Upper East Side, less than five blocks from where her mother lives and from where they grew up. Her brother doesn’t appreciate the fact that he received an apartment without a mortgage and that his lover pays the monthly unit fees and taxes. However, this person also finds a positive virtue in her mother’s changes, because, “I feel more in control.” She has power of attorney and manages her mother’s monies. “I don’t feel guilty.” She too has transformed her mother into a pet for whom she can provide concrete services. Her sibling relationship too has been transformed by forcing her brother to deal with reality. This aspect, however, has not been appreciated or even tremendously successful.
From this short and decidedly unrepresentative sample, it would seem there is a gamut of emotional expression and subsequent adaptation surrounding ambiguous loss among professional women. Most women make a sacrifice of their home or of their time and other intimate relationships. It would seem that women find peace in caring for their mothers and find a way to concretely resolve the ambiguity and even positively transform their relationships, into well-behaved guests or pets. If you wish to cope, forget that she was once your mother.
I usually cope by transforming tragedy into comedy. Most people view me as arrogant, because my humor leans toward the scornful. My mother still ends every conversation with, “What can I do for you?” I replied: “Go to the post office and buy me some stamps.” My mother used to tell me every day, “The more you do, the more you can do.” She used to say when I was an adolescent, “Stop looking at yourself. There’s nothing wrong with you.” I now say those to her.
[1] Boss, P. (1999).Ambiguous loss. Cambridge MA: Harvard University Press.
[2] Boss, P. (2007). Ambiguous loss theory: Challenges for scholars and practitioners. Family Relations (56),
[3] Sondheim, S (1962). Rose’s turn (Recorded by Ethel Merman). On Gypsy: Original Cast Album.
SONY Entertainment: Masterworks, Broadway.