Victor and Grace had been married sixty-two years, a lifetime, and each viewed the other as a best friend. Sitting in my office with his son, Victor felt enormous guilt talking about handing over Grace’s care to someone else. With one look, I could tell he was not taking care of himself; he needed a shave and a change of shirt. While his son Tim did most of the talking, Victor alternately closed his eyes and looked at his lap. As I questioned him directly about Grace, he silently wept. I asked him how Grace spent her day. What event had made him consider long-term care?
Two months earlier, Grace was diagnosed with cancer of the kidney, and she currently required dialysis three times a week. With each procedure, she became weaker and weaker until caring for her became a formidable task. Her husband could no longer bathe and dress her or monitor her diet.
“My son says it’s not fair to his mother to leave her alone with me,” Victor lamented. “I guess I just can’t do it anymore.”
“Victor,” I gently responded, “making the responsible decision is not easy. If you allow us to become part of your caregiving team, it does not mean you will no longer care for Grace. On the contrary, it means you will begin to care for her in a different way. She will always need you to be her champion.”
Where Are You Right Now?
If you are thinking about long-term care for someone, where are you in the process? Have you noticed changes in your parent, but your siblings disagree? Do you occasionally think about long-term care but feel your parent is “doing just fine” most of the time? Denial can leave you ill prepared for a future crisis.
The idea of a quick, peaceful death is a common myth. After a fulfilling life, our parents should die peacefully in their sleep. But today, the elderly live longer than ever before, and death is more likely to follow a long, weakened state or disabling illness. If talking about this brings up uncomfortable feelings, you have a lot of company. Most families who come to see me simply did not expect this to happen. They do not know what questions to ask or what to look for in a facility, but their situation is often urgent. Hospitals frequently give only twenty-four hours’ notice to find a care facility.
When placing a family member in long-term care, feelings emerge that can be confusing and overwhelming. Each family brings its own dynamic to the situation. Many are truly saddened, thinking they have let their parent down. Those with no options feel trapped and angry to find themselves sitting in my office. Others may not have had a good relationship with their parent but dutifully accept the responsibility to see that needs are met. Regardless of the circumstances, I salute anyone who steps up to the plate to care for an aging parent.
Here are some stories of families who have shared the journey with me. Each one illustrates a different response to the need for long-term care.
DENIAL
Jeanne, a well-dressed, take-charge executive, came to me reluctantly. Although her seventy-nine-year-old mother, Emily, was physically strong and lived alone, she suffered from dementia. When she attempted to cross a busy boulevard against the signal, a friend stepped in and said, “Like it or not, Jeanne, you have to get involved in your mother’s care. She can’t live alone anymore!”
For the majority of us, denial will be the first hurdle we deal with as we step in as caregivers. As adult children, we don’t always look too closely at our parents’ developing needs because it’s easier not to confront them. Although Jeanne had always honored her mother’s choice to live independently in the comfort of her own home, Emily clearly was no longer able to manage an independent life. By not looking at her mother’s situation realistically, Jeanne was neglecting the responsibility of a caregiver.
As we talked, I knew Jeanne was trying to convince me that Emily did not need help and was hoping I would confirm her assessment. Instead I said, “Jeanne, you owe your friend a thank-you. She took a risk being the bearer of news you did not want to hear.”
Two months later, her mother joined us in assisted living. To Jeanne’s surprise, Emily slipped easily into the new routine of meals and activities. “Except for the last few years,” Jeanne admitted, “Mom has always been very social. Since my focus was on keeping her at home, I guess I gave more attention to her house than I did to her. Now that I think about it, maybe she missed being with people.” Jeanne understood that denial had held her back from an earlier intervention.
ANGER
At eighty-three, Valerie needed long-term care, and her daughter Cindy was angry about it. Sitting in my office, Cindy looked tense and annoyed. Her mother had been a college dean but was now becoming forgetful, not bathing and eating regularly, and forgetting occasionally to take her medication. Cindy was convinced Valerie’s lapses were intentional. “Mom had diarrhea last night,” she asserted, “and I’m sure it was just a way to punish me.”
Since Cindy had not had the best relationship with her mother, she was resentful of the enormous responsibility and inconvenience of taking care of her. In addition, she was angry with me and disliked being in my office as she reluctantly faced reality. And perhaps foremost, she was angry about the promise she had given Valerie years ago. “My mother made me promise never to put her in a nursing home,” Cindy said.
Eventually Valerie did join us. As time went by, my staff and I became more of an advocate for Valerie than her daughter was. When Valerie’s doctor ordered an antibiotic for a urinary tract infection, I notified Cindy. She was curt. “I told you, Stella,” she said, “I want no aggressive care for my mother. Antibiotics are aggressive, and I don’t want her to take them.” Acknowledging her wishes as to caring versus curing, I nevertheless explained that this treatment was a matter of normal pain control and care, not a heroic measure. By the end of our conversation, Cindy approved the antibiotic.
Not long afterward, Valerie, who suffered from end-stage congestive heart failure, began having difficulty breathing. To ease her discomfort, oxygen was now required. Again I notified Cindy. And again, her voice was tense. “Who pays for the oxygen?” she asked impatiently. “Money is an issue, Stella.”
I answered, “You will be responsible for it, Cindy, because Medicare does not reimburse for oxygen given in a nursing home.”
“Does she really need it, Stella?” Cindy demanded. “Or is it only to prolong her situation?”
“Cindy,” I responded, “oxygen is a comfort measure. Being short of breath is frightening, and Valerie should not experience shortness of breath or fear.” After further discussion, Cindy grudgingly gave permission to order oxygen for Valerie.
During the time Valerie remained with us, Cindy was never able to resolve her anger. Although I do not know what Cindy’s true feelings were, I have seen anger function in adult children as a holding pattern against sadness and grief.
SADNESS
“I had given up. I had decided I would never meet the right man. Then I met Jim,” Laura began as we sat drinking coffee in my office. “When we met he was sixty, and I had just turned forty. Immediately becoming best friends, we married eight months later. For the next twenty years, we lived, as Jim described it, ‘on our own private island.’ I learned to sail. We traveled and saw parts of the world I had never imagined. Since Jim had three children from a previous marriage, I found myself surrounded by a good-sized family. Life was good.”
Leaning across the desk, I placed a box of Kleenex in front of Laura, who had begun to cry. “About two years ago,” she said softly, “I began to notice little changes. Jim forgot things he never would have forgotten before, and he got angry with me if I drew his attention to it. This anger was new, and because being around groups of people agitated him further, I began turning down invitations.”
As Laura described an elaborate system she had set up to keep Jim functioning, I felt her sadness. “How is Jim doing now?” I asked.
“After dinner last Sunday,” said Laura, “Jim didn’t recognize me and thought I was a stranger in the house. He asked me where Laura, his wife, had gone. As I tried to explain to him that I was Laura, he became angry and began to hit me. When he wouldn’t stop, I finally had to push him back. Losing his balance, he hit his head. After I called 911, Jim was admitted to the hospital. My friends suggested I start looking into different options for when he’d be discharged,” continued Laura. “I just can’t believe I won’t be Jim’s caregiver anymore. I owe it to him.”
“Laura,” I said, “your caregiving does not stop the day Jim enters a nursing home. You will remain a critical source of support for Jim for the rest of his life.”
“Stella, the sad thing is,” said Laura, “Jim was such a wonderful man. You will never meet the person everyone loved and admired.”
“Your job, Laura, will be to introduce the staff and me to the Jim that you knew. Your valuable input will help preserve his dignity and validate his individuality for us.”
Joining us a week later, Jim needed assistance with bathing, dressing, and eating. Even though his communication skills were poor, when Laura entered his room, it was obvious he recognized her. His face would light up as he tried to say her name. Two weeks after Jim’s arrival, Laura admitted, “I still cry at night, but I know there is no way I have the skill or stamina to properly care for my Jim anymore. In fact, I know he would back up my decision. I just wish I could stop feeling so sad about it.”
“Laura,” I consoled her, “the reason Jim is with us is not your lack of willingness to care for him yourself. If you had become more physically drained from caregiving than you were, you would have had nothing left to give emotionally. By making the long-term-care decision, you have entered into a partnership with us to provide the physical care that you can no longer adequately provide. But no one will be able to replace the love and affection you give Jim. You are his connection between his old home and his new home.”
GRIEF
Fay, ninety-eight, had been with us for four years and was dying of cancer. At eighty, her son Stan had been his mother’s caregiver for twenty years. “Mom has always been fragile, in need of my care,” said Stan. “Relocating her into assisted living was the most difficult decision I’ve ever made. I felt as though I were giving up a part of myself.” Every morning at ten and again every afternoon around five, Stan visited his mother, but lately he was having a hard time dealing with his mother’s mortality. In the past, Stan had always stopped in to chat with me after he saw his mother. As Fay weakened, Stan’s visits with me became less frequent. At the same time, he became unrealistically demanding with the staff, even instructing that the nurses get Fay in and out of bed every half hour. In her condition, this would have been much too hard on Fay. When told that Fay was only eating 20 percent of her lunch, Stan became upset. He tried feeding her himself, but she would not eat for him, either. Frequently, as he entered his mother’s room, he became teary and emotional. During one of his visits, I asked him to come back to my office. “Stan,” I said, “you have been her son for eighty years. Whether you are fifty or eighty, the loss of your mother will bring enormous grief.”
“I know, Stella, I know. I lost my father thirty years ago, and even though I’m eighty now, I’m having a hard time letting go of my mother. It’s almost like I’m not sure who I’ll be when she’s gone.”
No matter how old we are, parents give us a sense of place in the social order. Even if you no longer go to them for advice, it is a secure feeling just knowing that you have parents. The loss of the second parent is a transition for which few of us are prepared; we find ourselves not only orphaned but facing our own mortality.
GUILT
“I knew I was in trouble,” Debby said, “when my mom, Anita, got up from the sofa and it was stained with urine.” Diagnosed four years ago with Parkinson’s and dementia, Anita had managed fairly well for a while. “But by the time Mom came to live with us last year,” Debby continued, “she was losing weight, not changing her clothes, and forgetting to take medication. In just the last two weeks, Mom has taken a sudden spiral downward. Now that incontinence is an issue, she is taking up a lot more of my time, and I have a two-year-old daughter who’s competing for my attention. To complicate matters, Mom has had a couple of falls and just yesterday fractured two ribs. Now she’s getting confused at night; when she walked into our bedroom at three A.M. by mistake, I actually yelled at her. Although my husband loves my mom and has been a real trooper this last year, his primary concerns are my little girl and me. He told me, ‘You’re a nervous wreck. Things have to change.’ How do I tell Mom she needs more care than we can give her at home? I feel so much guilt over this decision!”
“Debby,” I said, “as we become caregivers to our aging parents, we will always experience some guilt. Falling, incontinence, and confusion at night are all signs that your mother needs more care. At this point in your life, are you able to provide her with all the care she needs? That is the question you have to answer. As caregivers, we find ourselves attempting to solve all of our children’s problems and all our parents’ problems as well. Most of us can’t do it. But we can be our parents’ advocate, finding a quality long-term-care facility when it’s needed, and we can continue to be actively involved in their health care.”
The following day, Anita joined us. The relocation phase for Anita took about two weeks. Initially, she would not attend activities and her appetite was poor. Even her granddaughter could not cheer her up. As her family visited daily, the staff continued to encourage Anita to attend activities and special events. Throughout the day, Precious, our facility dog, visited Anita. One morning, Anita unexpectedly said, “Okay, little doggie, you can be on the bed with me.” Precious hopped up. That was the beginning of Anita’s transition to her new environment. Soon, she began to ask for Precious after breakfast, and the little dog would ride in the wheelchair with her to activities. Family visits became less strained and more meaningful.
“I think,” said Debby tearfully, “when Mom has a clear day, she knows that I can’t care for her anymore. I hope she does.”
The role conflict Debby was experiencing is common among middle-aged daughters and daughters-in-law who find themselves parent, spouse, and caregiver in addition to housekeeper and employee. Debby’s loyalty to her mother was real. Yet her concern for her family was equally real. Guilt, or fear of guilt, can cloud one’s ability to make responsible decisions. But with the help of her husband and with clear, honest communication, they were able to confront the situation and bring it to a resolution that worked for everyone.
As a caregiver, you will always feel guilt to some degree. But once you acknowledge you can’t do everything for everybody, guilt loses some of its power.
Assuming the Caregiver’s Role
I hope the stories of others who have made this journey will help you as you begin the difficult, delicate road to caring for your aging loved one. There are classes on how to care for newborns, toddlers, and preteens, but classes on caring for aging parents are few and far between—there are no real guidelines. Each family will have different needs, circumstances, and interpersonal dynamics.
Knowing how long to allow a parent in transition to make her own decisions is a tough call. At what point is it necessary to step in? When Jeanne described her mother’s precarious walk across the boulevard, I said to her, “Just as you cannot leave a child home alone, you cannot leave parents who are no longer able to make safe decisions.” They need safe boundaries.
Jeanne felt strongly that her mother would want to maintain her independence, yet allowing Emily to live alone when she could not sense danger crossing a busy street would have been irresponsible. As those of us who have gone through it can confirm, becoming your parents’ decision maker is a time of awakening. In the past, we looked to them for advice, opinions, assistance, and protection; now we return the favor. While it is not an easy role to slip into, it is a gift we give our parents: good, appropriate care for the remainder of their lives, whether at home or in a quality facility.
If You Can’t Step in as a Caregiver
Perhaps your parents are not ready to allow you to step in and make decisions with them. If they won’t relinquish car keys or accept help at home, they may be unwilling even to consider the notion of long-term care. Remember that if your parent is mentally alert, she should make her own decisions, whether you agree or not. However, if your parent is placing herself in imminent danger, or if her health is seriously threatened, you do have the responsibility to become involved. At least have a backup plan in place to avoid finding yourself in a crisis with nowhere to go. Here is how you can start:
Unfortunately, you may have to wait for the inevitable car accident, fall, or medical crisis before you are able to step in and help your parents. If a call comes from the emergency room, and one of your parents has broken a hip or suffered a stroke, you won’t have much time to think about the next level of care; frequently hospitals will not notify you of a discharge decision until there is only twenty-four hours to find a facility. In a crisis, it is difficult to make a major decision to best suit your parent.
Seventeen Hours to Find a Nursing Home
On a Tuesday morning, Betsy sat in my office, anxious, angry, and frightened. Ever since Betsy’s mother died, her eighty-nine-year-old father, Larry, had lived alone and seemed self-sufficient. However, when Betsy visited him that Friday afternoon, he was disoriented, hadn’t changed his clothes for a few days, and felt hot to the touch. “The ER doctor told me that along with a temperature of 103.2, Dad had a severe urinary tract infection,” said Betsy. That night, Larry was admitted to the hospital. At six-thirty Monday night, the hospital discharge planner informed Betsy that Larry had to leave the hospital by the next morning and would need a nursing home. “How,” she asked the discharge planner, “am I going to find a nursing home by tomorrow morning, if I only have tonight to see them?”
Betsy continued, “I went home, and began calling anyone I could think of—friends, relatives—to see if they knew of a facility. Finally, I reached my rabbi, who gave me your name. Do you have room for my dad?”
Regrettably, I had to reply, “I’m so sorry, Betsy, I won’t have a bed until next week. Let me make some calls for you and see if there’s a bed in a facility I can recommend.” The majority of nursing home admissions from the hospital are made under this type of pressure.
Have a Plan
Armed with knowledge and a plan, you will have more choice and more control. A plan stabilizes a crisis; it replaces confusion with assurance. As your parents enter their eighties or nineties, they will need guidance and support. Although you may feel you can and must do everything for them, this may be an unrealistic expectation, a prescription for heartbreak which can lead to denial, anger, sadness, grief, and guilt. With a flexible plan in place, these ever-present feelings lose some of their power. While there are no perfect answers, preparation, communication, and a realistic assessment of your parent’s situation will lead to sound decisions.