Family of Resident’s Support Group: Living with Loss, Dealing with Denial

Previous articles on this topic from the author that have appeared in the Journal were, “Family of Resident’s Support Group: A Safe Place to Vent and Lament” in May 2002, and “Family of Resident’s Support Group: Sharing Disappointments and Coping With Anger” in September 2002.

The Family of Resident’s Support Group at Shalom Park, a senior continuum of care center, is now an established part of the services offered via the Spiritual/Pastoral Care and Social Work Departments. We have been meeting for five years. What began as a monthly get-together has evolved into a twice-a-month regular program. It is made up of the children and spouses/significant others of residents who live (or lived) in the Nursing Home or the Senior Residences. Mention of the group is made during Family Care Conferences or other appropriate opportunities. As Rabbi/ Chaplain, I serve as Facilitator. The participants have changed over the years. Most of those who attend have family members who are residents of Shalom Park, but a number of people continue to attend the Support Group months after their loved ones have died. Over the five years many of the themes have repeated: loss, anger, sadness, and frustration. Nonetheless, each story is in its own way unique.

The goals of the group are to provide a safe and caring environment for members to speak their truths, a place to voice common concerns, questions, and grief, and possibly some suggestions of how to cope with these difficult days.

The reality is that residents at any assisted living or long-term care center, by definition, are ill and/or aging. As time passes, their needs and fragility increase. For family members, it is (understandably) upsetting and unsettling, never mind emotionally devastating, to see the physical and psychological deterioration of someone you love. Relatives feel helpless and hopeless. When these caregivers speak about their feelings to friends, too often they find that they are misunderstood. Unless those friends have been through similar “valleys of deep darkness,” they do not, and simply cannot, comprehend the enormity of the issues involved or the overwhelming frustration one feels in the face of the inexorable movement of time. Yet, some of this painful edge is mitigated when these burdens are addressed and shared within a safe and caring environment.

In terms of demonstrable outcomes, the Support Group members speak about the fact that they often feel better after the meetings. Some of the weight they carry has been lifted off their shoulders. They also report that because they feel better, they are more relaxed with their family member in the assisted living/long-term care center. The residents themselves over time seem to be less tense, less irritable, less demanding. The Support Group not only provides a safe place to vent and lament, but it also helps people to be able to frame these “confessions” in a proper manner. These are not baseless complaints or frivolous grumblings. They are heartfelt laments, and in the words of Rabbi Bonita E. Taylor, they become proper and healthy ways of “singing the blues.”

LOSS

As we age, we face changes within our physical bodies. Our metabolism slows down, and we find it harder to maintain our desired weight without being more attentive to what, when, and how much we eat. Our skin tone is less taut, we sag and bulge, and our hair develops those silvery streaks that bespeak of the onset of “maturity.” For residents in assisted living or long-term care facilities, the changes in their bodies are even more dramatic. Physical losses are measured in terms of impaired or limited eyesight, hearing, and/or the literal inability to walk without a cane or walker. The person may be confined to a wheelchair for some, if not all, of the time. It might mean a lack of control of one’s bladder or bowels. Requiring toileting or not being able to shower because of fear of a fall is a diminishment of one’s self-image. It is a loss of dignity. Often one’s senses of taste and smell are impaired, which means eating is less enjoyable. Alternatively, it may mean having to eat pureed food, a humiliation in its own right.

For others, their minds and their memories seem to contract. Word retrieval can be a challenge. “Can you get me the…you know, the…the uhhhhh for my, my hair?”

In a discussion, the wrong word or a made-up nonsense syllable suddenly surfaces, a “gwedelp” or a “drannamud.” Sometimes the resident will fixate on some point and/or phrase and repeat it. The losses experienced by residents (and their loved ones) are enormous. In addition to the matters mentioned above, there is the loss of their own home, where they may have lived for decades. Possessions and property gathered over a lifetime, which filled many rooms and were rich with memories, now have to be disposed of or discarded. Even if they had “downsized” from their family home to a condominium with only a bedroom or two and living and dining rooms, they are now living in but one room, or maybe for the first time in their adult life, they are sharing a room with someone who is not a relative. In addition, every few months or so, they learn that a friend, a contemporary, or someone they have known for years, has died. “When will be my time?” they wonder.

There are other losses too. Once they were decision makers, and now most of the decisions are made for them. A number of people were entrepreneurs or professionals, they had people who worked for them, who depended upon them, and for whom they cared and felt a responsibility. Perhaps they were teachers, social workers, plumbers, or electricians who worked with colleagues, and who formed working relationships, no longer in place. Maybe they were homemakers who took pride in the layout of their house or the meals they served, and in the way they guided their children. Now those roles are over, those responsibilities part of their past.

Who they were is no longer who they are. What they did is no longer what they do now. Where they lived is no longer where they now reside. Their very self-identities, their measure of who/what/why defined them is gone; it has been taken from them, along with their health and their belongings. That certainly is terrifying and depressing.

Those who experience these losses are the real-life analogues of the image of devastated Jerusalem, as depicted in the biblical book of Lamentations: “Alas, lonely sits the city…How like a widow she has become…Bitterly she weeps in the night, her cheek wet with tears…[she] remembers…all the precious things that were hers in days of old…‘how distressed I am; my stomach churns, my heart is wrung within me…with no one to comfort me’” (Lamentations 1:1, 2, 7, 20, 21).

Singing the Blues—Losses
Each Support Group member has a story, and each is poignant in its own way. “Dad is so upset,” explains Deirdre. “He was not a health nut, but during the year he would go swimming on a fairly regular basis, and in the summer, in addition to that, he and Mom would go for day hikes in the foothills. Now, with his condition, he just does not have the strength in his legs. He has lost that part of his life, and it is not going to return. Often I find that he wavers between anger and depression.” The losses may be felt by the resident or, in some cases, particularly by the family members.

“Oh yes, I understand,” says Peggy. “I can relate to your Dad, but for me the matter is turned around.” Peggy’s husband, Victor, is in his early 70s. He looks healthy and happy, and one often sees Peggy and Victor walking around the perimeter of the Shalom Park property, presumably enjoying the view of the mountains to the west, and the sloping lawns and leafy trees that grace the property. Victor is a retired chemical engineer. He worked for Dupont for many years and has several patents in his own name. A good-looking man, tall and slender, his “salt and pepper” hair is one of his attractive features. He also has a lovely smile. The difficulty is that Victor has Alzheimer’s disease, and is slowly but inexorably declining year by year. For a period, Peggy was able to care for him at their retirement home, but now he requires full-time care. “He is there, but he is not there. He still can ambulate, but his speech is largely gone. Most of the time, he knows who I am. He still visibly brightens when I come to see him, but he is starting to get combative. This is so hard. I do not know what is easier to deal with: a decline in physical health, but you are all there mentally, or what I have to face—Victor still healthy enough most of the time, but the memories of the past, our past, his working past, our family memories, lost in that tangle of plaques in his brain. I find myself wavering between anger and depression and I try so hard not to show it, especially when Victor and I are together. But it is hard.”

“I know about that,” Ron adds. “My wife Margaret was a pianist. She had real talent, and now, with her dementia as well as her degenerative disease, that is all gone. All I am left with are memories of the woman she used to be. The children find it hard to come and visit her because the woman that she was, the woman they remember, just is not whom she is now.”

“How the mighty have fallen,” lamented David in the Bible. “In life…they were swifter than eagles, they were stronger than lions,” but now, “the mighty have fallen in the midst of the battle” (2 Samuel 1:19, 23, 25). David was mourning the deaths of Saul and Jonathan, which is its own form of sadness and pain. Yet, for these residents and their families, their battles and the war, as well as the losses, continue.

In addition to the physical and emotional losses, another aspect is the sheer physical fatigue of loss. Grieving really is work, and it is hard work at that. It is tiring and a drain on our vitality. Often, Support Group members report that they are experiencing a diminishment of their energy levels. “At times I go home and I just lie on the couch, or I find that I need to take a nap before I can get on with my regular work.” Explaining and understanding loss/grieving, recognizing the physical and emotional burden of loss/grieving, as well as accepting the universality of loss/grieving, can make it easier to bear. Ira J. Tanner,1 in his book Healing the Pain of Everyday Loss, offers helpful advice and an important perspective when he points out four verities: (1) loss is natural to life; (2) people and objects do not have permanence; (3) grief feelings are normal; and (4) grief offers opportunities to help establish or re-establish values and goals.

DENIAL

Though loss is natural to life and everything is impermanent, the desire to deny the inevitable is very strong. In the minds of many of these elders, as long as they have a plan of what they want, somehow they believe it will come about. With advances in medical knowledge and technology there is an unspoken message that all problems can be solved, that all illnesses or infirmities can be reversed, and that sooner or later, the unwell will return to their former lives, carrying on as if they were fully healthy and fit. As one of the Support Group members quipped, “Hate and love are strong emotions, but nothing is as powerful as denial.”

Singing the Blues—Denial
Bill’s parents are still living in the Senior Residences at Shalom Park, but it is only a matter of time before one or both of them will need to move to the Nursing Home. “Mom slipped and broke her leg,” Bill mentions at a session. “Among a variety of other matters, Dad has back problems, and he really cannot help her. He physically is unable to lift her, much less lift her wheelchair into the trunk of the car. And speaking of cars, just at the moment he cannot even drive because of his back ailment, but according to him, this is just temporary.” Bill then rolls his eyes, but the pain on his face is evident to all present. Bill’s parents, now retired, were both successful professionals. They lived in another city, but with their increasing health problems, and at Bill’s insistence, they finally agreed that they needed to give up their family home and relocate to Shalom Park. They have made a wonderful transition, but his father still thinks he can, and will, return to his former, post-retirement life, in which he had spent several hours a week volunteering his expertise with a project at the school where he had taught for many years. “As soon as Mom gets well, and my back is improved, I’ll be driving again. They need me there.”

“Well,” says Judy, “as unrealistic as your parents may be, they are miles ahead of my parents-in-law who are in total denial.” They (George and Selma), she explains, are still living in their home in another state with no family living nearby. They have dismissed out of hand any suggestion that they might need to move to Shalom Park, or even a local retirement community, or some kind of assisted living facility. George is a robust, unbending, and inflexible 90-plus-year-old, though he is younger-looking. While he has survived heart surgery and colon cancer, Selma clearly has dementia. In addition, she has poor physical balance, is incontinent, and suffers from limited hearing. Though they can easily afford it, George refuses to bring in part-time daily (much less 24-hour) help. The net result is frequent paramedic-driven trips to the emergency room of their local hospital. Though George thinks he is a capable driver, in fact, he has trouble gauging proper distance. He refuses to give up his license (“I’d be trapped in my own home! I would be a prisoner. I would have cabin fever within a month or less!! Besides, there are things that I still need to do.”) In desperation, one of his adult children contacted the Department of Motor Vehicles (DMV) in the state where George lives and “reported” him as an unsafe driver. The DMV called George in to retake his driver’s test; he flunked, and then flunked a second test. According to Judy, George has hired a lawyer and is appealing his case. If he does not succeed, he says he will sue the state for age discrimination.

An Unwillingness to Accommodate
These cases of an unwillingness to accommodate to changes in physical or mental health are all too familiar to members of the Support Group or to those who work in elder care. The results of this obstinacy is that those directly involved (the deniers) put themselves and others at serious risk; family members live in dread of the inevitable emergency phone calls, and the whole scenario is continually “crisis-driven” instead of following a reasonable plan of action. In these and other similar cases, because the elders seem to be functioning at some minimally acceptable level—impaired but functioning—there is no legal recourse. Suggestions by doctors, social workers, physical therapists, and family go unheeded, and everyone, but most of all the children, uneasily have to live with the facts that they have no authority to do anything, no power, and ultimately no responsibility. All they can do is to wait for the next crisis, which will come as sure as night follows day.

CONCLUSION

It is not possible to reverse time, to miraculously turn back the clock and restore physical and mental health to these residents. What we can do is to bring some kind of emotional healing to the Support Group members. In our experience in the Support Group, speaking with and listening to others who are suffering, even if the “why” of their suffering differs, often has a cathartic effect. It is one of the reasons to explain the popularity of the saying, “misery loves company.” It reflects real life experience, and we can learn from others. In terms of coping strategies or interventions, in addition to sharing our stories, we speak about the value of taking the time to speak to the professionals involved with the residents—the social worker, the nurse, the doctor, the chaplain—and to get their insights and their support. Where appropriate, we offer thoughts for other directions: perhaps being in contact with the person’s local DMV or, if necessary, Adult Protective Services. In the Support Group, we have spoken about how it is valuable to have the family members speaking directly to each other and, whenever possible, to have a common plan of action for dealing with the crisis at hand or the anticipated crisis to come.

At our sessions, we offer compassionate caring, an empathetic ear, a hearing heart, a gentle gesture of concern, a wise word, and, at times, a helpful hand during moments of distress. Though the details naturally will differ from person to person, in broad strokes these group members face similar problems. Simply knowing that “I am not the only one facing this, that I am not the only one who feels burdened and saddened” is an enormous relief. In some inexplicable way, it is the first step in bringing healing.