Surviving

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Stan Silverman, PhD, CNS-P

Survivorship is more than a construct.  Psychologically and emotionally, it is a double-edged sword. Simplistically, its components are reactive to circumstances occurring in our lives. There may be one event or a situation in which many events coalesce causing psychological and emotional harm. Yet, too often in long-term care and assisted living facilities, survivorship and its ramifications are neglected. And that is unfortunate. It must be addressed and included in the provider’s arsenal.

Consider the following:

A seventy-two year old widow (MS. S.) was admitted three years ago to the facility after suffering a CVA which left her with left-sided hemiparesis. Following rehabilitation, her admission to the facility was made permanent, as there was no one at home to care for her. Six to eight months ago she was evaluated by the consulting psychiatrist for possible depression. She was placed on an anti-depressant and an anxiolytic.

I was asked by the attending physician to see her again because of increasing signs of depression (consistently sad, eating very little, and staying in her room over the past couple of days). Her psychotropic medications appeared to be effective, until then.

As I entered her room (private), she was in her wheelchair next to her bed. She was awake. Her head was down and she seemed to be staring at the floor. I noticed that she was holding a small, framed picture. As I looked more closely, it was of her son.

“Hello, Ms. S. Your doctor wanted me to see you. How have you been feeling over the past few days?”

Ms. S.: “Well, I don’t know if you are aware or not, but my son had been ill for the past couple of months-he had cancer!”

“You say, ‘had’!?!”

Ms. S.: “Well, my sister called last evening and told me that he died at the hospital two days ago. The doctors told her that he had pancreatic cancer.”

“First, let me say that I am truly sorry.” We both sat quietly for a few minutes until she spoke, quickly telling me about her son.

Ms. S.: “He was a good boy, a good son. He never had it easy; married a girl my husband and I didn’t really care for. They had two children we rarely saw. Well, they divorced and she and the kids moved to the mid-west. Never saw my boy much, after that. When I did see him, he seemed sad . . . he was a good boy!”

“Your husband died here about a year ago, didn’t he?”

Ms. S.: “That’s right; had a bad heart condition! That was hard. We were married for forty-eight years; good years. We traveled a lot; did a lot together. He was a good man; worked the factory for thirty-some years. It was hard work but he was grateful to keep his job. He took retirement, but after a year had a heart attack; then couldn’t do much of anything physical. We had a quiet life after that. You know Doc, he was with me in this place . . . I’m sorry I was going on and on.”

“That’s okay, Ms. S. I want you to talk and share with me how you feel now. Did you and your husband have a good relationship with your son?”

Ms. S.: “Well, it was at one time. We were very close, at least until he married that girl.”

“What did you and your husband not like about her?”

Ms. S.: “She seemed to keep him away from us; you know, they had their own life. Even some others in our family noticed that.”

“You’ve struggled for years on a number of levels. And now, this. To your credit, you have survived, but I can’t help but think that being a survivor is difficult!”

Ms. S.: “It’s terrible. When Jack died last year, I felt lost; after all those years together. Now with our son gone, I don’t know if I can go on. I know I need to but I just don’t know . . . Instead of my son, I wish it had been me!”

My note essentially indicated the following: Overarching are her tribulations, reflecting her losses: the continued grief over the death of her husband, the past alienation of her son, and her permanent placement in long-term care. All of these events, I concluded, sapped her strength; any that she could utilize now with her son’s death. Although obviously more depressed, she denied feeling suicidal (and contracted for safety). She did try to see things in a positive light- for example, “he was a good boy”- but struggled to do so. She acknowledged feeling alone, abandoned. Under my recommendations, staff was to monitor for increasing signs of depression; Ms. S. is to have her medications evaluated by the facility psychiatristthis same week; I wouldcontinue to see her weekly.

Among countless other demographics, their medical records may indicate: widows; widowers; orphans; mild to moderate dementia; or chronic, progressive neurological conditions. It is the eighty-two year old whose husband died a year ago and who had no children; the twenty-some year old widow whose husband perished in the motor vehicle accident that left her totally dependent for care; the one with Huntington’s Chorea (whose mother died of the same disease after a prolonged struggle)or the woman with Multiple Sclerosis diagnosed in the prime of her life and whose children now visit maybe twice a year; the fifty-two year old with early dementia whose memory seems to be slipping by the week; or the resident requiring frequent, almost regular, out-patient treatments in hospital.

No matter the diagnosis, limitations, the current family demographics, or their age, all of these residents are SURVIVORS.

Many of the issues inherent with survivorship present as a confluence of various medical, psychological, and situational factors. The devil here, as is often said, surely lies in the details. Various medical and psychological factors have an on-going effect upon the person’s emotional and behavioral responses to staff. Perceptionsand beliefs concerning his or her state of survivorship provide the nexus with the emotional and behavioral because certain past events impact the present and frequently solicit fear of the future.These spheres are not mutually exclusive, but are in fact, gelatinous and offer clues to the person’s longing and aloneness.

Many residents in long-term facilities feel trapped not only in a “broken” body and/or mind, but by memories pertaining to a distant or recent loss of a loved one or of the events leading to that loss. It is essential then, that a two-fold approach be used: noting the existing family composition, the frequency of the members’ visits, and their involvement in the resident’s care; then, taking on a specific focus- the resident’s losses. This is part and parcel of comprehensive care and treatment, especially for a resident showing signs of deepening depression or increasing anxiety. Admittedly, providing effective psycho-therapy in a long-term care facility can be problematic. The resident may be distracted by a mix of stimuli: the sights and sounds of his or her roommate; that resident yelling in the next room; or his/ her own medical problems and debilitation. With these preoccupations, the ability to first recognize, then to express any deeper unresolved issue(s), for example, regardingthe death of a close family member or friend, becomes even more taxing.

As providers in these facilities, we are aware that the locus of control for many residents has been diminished; for some, exponentially. Add the incidental death of a spouse, offspring, or close sibling, and the loss (and of control) can be overwhelming, along with the aloneness and sense of abandonment. My experience has facilities’ making every effort possible for a resident’s attending the funeral of a loved one or seeing that person when death is near. What becomes more cogent is the follow-up upon the surviving resident’s return,and in subsequent sessions when evaluating and providing counseling regarding the emotional effects surrounding that loss. As no two individuals are identical, some survivors do not show symptoms until long after a traumatic event.

The longer we live, the more regrets we may have, along with unresolved issues. Underlying many overt depressive manifestations- sad mood, physical and mental slowness, social withdrawal, anxiety or agitation- may involve subconsciously re-living painful events. But as with any issue in therapy, resolution is at the core. Imagine the impact upon the afore-mentioned resident who survived injuries sustained in a motor vehicle accident, but whose equally young, healthy spouse was killed instantly. That trauma must be addressed because it may do two things: 1- delay legitimate gains in the resident’s attempt to resolve more immediate problems; and 2- conceal effects of the earlier trauma.

Although this example may seem extreme, when we realize that younger and younger residents are being admitted to long- term care a more aware and insightful approach to therapy is required for this population. Their resiliency and coping skills may be less adequate and defined than an elderly resident’s whose mechanisms are presumed to be more adaptive when the factors of age and life experiences are considered.

Remember not too many years ago when long-term care facilities were referred to as “old age” homes. Now though, it’s apparent that surviving is not only problematic for the elderly. More contemporary profiles include the recently widowed after fifty-plus years of marriageand the forty-year old single male resident with cerebral palsy whose care had become too overwhelming for his single mother. In the case of the former, we frequently hear of that surviving spouse dying within a year or two; with the younger resident,staff deals with his untoward behavior, resistance to care, and frequent episodes of his anger and frustration.

 

 

 

FEELING GUILTY

Mentioned initially was the complementary nature of survivorship. Survivors’ feelings, as well astheir expressions, vary. He or she may use such words or phrases as “undeserving,” “unfair,” “why me,” “why not me,” “I don’t understand,” and “regret.” Levels of emotions change, as you would expect. I see the diversification in much the same way as delineated by Dr. Kubler-Ross in her Five Stages of Grief. Three of the stages- that of denial, anger, (bargaining, by implication), and depression- correspond well with many expressions by survivors.

All types of disasters affect each of us differently, both psychologically and emotionally. In specific circumstances, the feeling of GUILT, considered by some the most powerful of emotions,frequently surfaces and may predominate with those “left.”

There wasn’t a name for the syndrome of SURVIVOR GUILT before the 1960s, when psychologists started recognizing this condition among patients who all happened to be Holocaust survivors. It affects those who have endured war, natural disasters, the suicide of a loved one, and even epidemics.

As any of us have experienced, coping with the death of a loved one is often difficult and painful, whether that death is sudden or expected. When the survivor feels guilt regarding the death, pain and loss are exacerbated. In our example, Ms. S. expressed guilt concerning the alienation with her son- she used the word regret- in not confronting him and his wife and not trying to resolve the situation. Her “culpability” was now palpable and became a focus for subsequent sessions. She asked the next time we spoke, “Why wasn’t it me, instead of my son?” It offered a window to other feelings she had concerning her own life, struggles, and diminished locus of control. This guilt typically derives from a resident’s restrictive medical condition, communication difficulties with family members, and/or facility policies. These external factors tend to internalize in concert with aloneness and a sense of abandonment, as guilt, increased depression and/or anxiety become apparent.

 

CONCLUSION

Surviving trauma leaves all of us with emotional and psychological fall-out. Residents in long-term care remain particularly vulnerable to depression and guilt, whether directly involving themselves (ex., a necessary complicated surgery or terminal diagnosis) or more externally, (the death of a family member or close friend). Too often though, manifestations of their survivorship can be missed.

What these survivors both say and don’t say offer salient issues for providers and therapy.