Caring Wisely

Geriatrics: Dementia, Delirium and Depression - UCSD-TV - University of California Television

2010-01-09T12:08:00.000-08:00

Geriatrics: Dementia, Delirium and Depression - UCSD-TV - University of California Television

What is Old?

2010-01-09T07:43:00.000-08:00

This summer I turn 50. In between the moments when I have to face myself in the mirror each day, I feel like I'm 30. Years ago (in my real twenties) my friend Carrie emailed me the question, "How old do you feel?" I remember writing back a long response that went something like this: On Saturday mornings with nothing to do but play, I feel like I'm 12 years old. On Monday mornings when my alarm clock pulls me out of bed for work, I feel more like a very responsible 45-year-old. When my girlfriend cries about her fourth romantic breakup in a month, I feel like I'm 60. And, so on. The point being that for me age is a relative experience.

Like many of you, I fall in the sandwich generation. I have middle-school-aged boys and a mother who will turn 80 this year. The definition of my roles as wife, mother and daughter are ever-changing and complicated. Initially I found these roles confusing. I caught myself acting like a daughter with my highly intense and demanding older son and as a mother to my increasingly more confused mom. I had experiences of complete bafflement when my mother would say, "Here, let me get that book. I'm taller," because she wasn't taller anymore. Poor health has shrunk her frame and in fact, when I'm wearing my comfy Dansko clogs, she's a whole four inches shorter than me. But she doesn't see this. Tall is her story and it has been probably since she was a skinny teenager a full head taller than her peers. Many of us don't see those age-related changes in ourselves because they don't fit our self-image. Take a look at the Internet. Just google the word Fifty and you'll find a number of entries debating whether 50 is the new 30, new 40 or just a new 50. Nonetheless, the discrepancies between one's biological and self-perception of age becomes more significant as we get older.

Erik Erikson referred to the final stage of life as "Old Age" and lumped everyone from the age of 70 to 90 into this category. As more people have survived "old age" psychologists have broken down this 20 year span into subgroups like Young Old (66-74), Middle Old (75-84) and Old Old (85+) to better reflect the issues and characteristics of each age group (Hartford, 1985). Hartford explains that, "The physiological changes, psychological changes, social experiences, and personal characteristics of people beyond early 60s are as dramatic in five- to ten-year age spans as they are earlier in life." Ashworth, et. al. (2001) writes that "with increased life-expectancy, it is not uncommon for individuals to live nearly a third of their lives in the arena of late adulthood." As a geriatric care manager and a daughter of a Middle-old mother, understanding the myriad of issues and the needs of our senior clients is critical and I probably won't really fully "get it" until I, myself, am 85 years old.

Over the holidays we visited my husband's family in Virginia. My mother-in-law is the same age as my mom, 79. She now lives alone since the death of her husband three ago, but she is an active, independent woman. I'd describe my own mother as active and independent but her poor health prohibits her from getting out and doing things as much as she'd like to. In fact, due to poor health, my mother has become dependent on me to manage her care. Usually, any visits to the doctor, changes in medication, even changes in lifestyle are initiated by me and for the most part my role as her personal care manager has been greatly appreciated. While this is appreciated by my mother, my mother-in-law on the other hand doesn't need nor want me to take charge of any aspect of her care. During our visit this winter, I forgot this and along with my brother- and sister-in-law started taking charge of her care by offering to call for a doctor's appointment, take her to the appointment and then by making recommendations for the type of care she should have to deal with her ailment. My mother-in-law is a kind, wise and diplomatic woman. She very subtly stated that she could handle these matters herself, though she appreciated my concern, and would prefer to handle them, thank you very much. Two people, same age, different needs.

So what is old? Are you old when you start accepting help? No! I wrote about this in my article about hospice care. But, the reality is that as we get older, we do need more help with some things. That's probably why so many elderly people are resistant to getting more assistance. They know it's a sign of aging. We frequently get calls from children of middle-old seniors who are exasperated because their parent refuses to accept outside help. Maybe its simply a weekly housekeeper to wash and change sheets, clean bathrooms and floors or a hired caregiver to take the parent on errands once a week or a Stephen Minister to visit weekly to talk through those feelings of loss that come with aging. Whatever the suggestion, Mom is refusing. It's a delicate situation. Remember that mom still sees herself as that tall young woman who can reach higher than her best friend and when she isn't looking in the mirror, she's fifty not 75.

Middle Old (75-84) is an age group of great diversity according to Hartman. While some people in this age cohort are continuing to manage their affairs and lead creative, productive lives, others are finding their life space increasingly more constricted. By the time we are brought in to consult with families about care, the elder may have suffered a number of significant losses in his life. In a matter of months, he may have lost a spouse or a best friend, his ability to drive, read or even communicate clearly. When we meet the family, the elder may be extremely depressed and withdrawn because he is grieving from a multitude of losses. How elders deal with these losses depends on their life experience and worldview. Edith Ratliff, a wonderful senior therapist located in Franklin, Tennessee and a strong proponent of Erikson's stages of development explained to me once that her mission as a therapist was to guide her clients toward overcoming despair. Erikson believed that an individual's final stages in life were marked by two opposing possibilities which he referred to as Integrity versus Despair. "A person who feels his or her life has been appropriate and meaningful achieves integrity. But someone who feels that his or her life has been unfulfilling, that the time remaining is too short, and that death is to be feared falls into despair" (Quadagno 2002).

In one of my favorite book about aging, Aging: the Fulfillment of Life (Nouwen 1974) Nouwen writes, "To receive the elderly into our inner self, however, is far from easy. Old age is hidden not just from our eyes, but much more from our feelings. In our deepest self we keep living with the illusion that we will always be the same. We not only tend to deny the real existence of old men and women living in their closed rooms and nursing homes, but also the old man or woman who is slowly awakening in our own center. They are strangers, and strangers are fearful. They are intruders threatening to rob us of what we consider our own." I have to admit that the longer I work with older adults, the more comfortable I become with my own aging. Again, it's all relative. My clients are much older than I am so I feel young. That is I feel young until I go home and my sons tease me about being "so old" because I need reading glasses to look at their artwork...Lauren Kelley LMSW, CMC

Who Said Anything about Hospice?

2010-01-07T12:06:00.000-08:00

Recently the husband of an elderly client was presented with the idea of calling in hospice care for his wife who has been struggling with a debilitating illness for several years.

"Why would we need hospice?" he wondered. "Why would I want to send her somewhere to die? She's doing fine."

As I listened to his troubled words, I was reminded of how much work we have to educate our clients about what "time for hospice" means. I was also reminded of the overwhelming flood of emotions I felt three years ago when a doctor announced to my family that my father-in-law should start thinking about hospice. We didn't hear the words, helpful, stay home longer, pain management, nursing visits 24/7. We heard, I can't fix this man. He is dying.

We knew that the chances of him surviving from his cancer was less than five percent. We knew his body had been wasting away, that he needed a feeding tube to get nourishment and that the pain kept him awake night after night. But, it wasn't until the doctor said, "Let's talk about hospice care," that we really grasped the possibility that this dear man would not be in our lives for long. So remembering these feelings, I listened to the fear in the husband's voice and searched for words of comfort and assurance and for the best way to start talking to him about hospice care.

David Kessler writes about hospice in his book The Needs of the Dying (2000).

"When I first began working with the dying in hospice settings in the early 1980s, I thought of a hospice as a physical location, a facility where the terminally ill were cared for. Through my work, I came to realize that hospice is a philosophy, a way of caring for loved ones." During a Death and Dying workshop I attended a few years ago Kessler described the difficulty many physicians have in discussing hospice care with their patients because they felt they had failed the patient. Over time, more doctors are becoming comfortable discussing hospice with their patients and they even stay involved in the care throughout the patient's lives as the primary decision maker for medication changes and procedures.

Hospice is a team approach to care. It is the patient's physician working with a team of nurses, social workers, aides, chaplains and volunteers to provide the best care possible for the patient and family in the home. For our client hospice care would ease the physical burden of care by providing help with bathing three times a week, a nurse visiting his wife at their home rather than the two of them trekking out into the cold to see the doctor, medication delivered to the home and peace of mind knowing that he can call the nurse in the middle of the night if his wife becomes uncontrollably agitated or in pain. Signing up for hospice doesn't mean that our client will die any sooner; however, it may mean that her quality of life will be improved for the duration.

The challenge for us as geriatric care managers is to communicate these benefits to our clients in the most sensitive and timely manner. I've learned through my experience working with families that hospice care is an emotionally-loaded subject requiring a great deal of skill, finesse and intuition. I've elicited more tears and awkward moments than I'd like to admit because I wasn't sure how to talk about it. Over time I've learned to approach the subject carefully with our clients. Questions like, "What do you want to do when you can no longer care for yourself (or your wife)?" is a better opening than, "Let's talk about how great hospice is." Also, asking them "What would make their life easier?," works better than, "You need help now!"

A friend of mine once told me to never turn down help. It seemed trite at the time, but I've never forgotten it. It's hard to admit that we can't do something, regardless of the reason. Caring for someone with a terminal illness is exhausting work, especially later in the disease process when the person can no longer handle daily activities like bathing, toileting and self-feeding.

"If you find that you insist on trying to do everything yourself without help, try to figure out your motivation," suggests Joan Furman and David McNabb in Practical Wisdom for the Dying & Their Caregivers (1997). With family members scattered across the country, help is not always readily available. Then, the issue becomes a financial matter. The average middle-class family can't afford to hire caregivers at a rate of $16-$20 an hour. At the usual four-hour minimum per day, the cost would be around $500 a week. Or maybe they can afford the costs for the short-term but they're terrified that it will deplete their life savings leaving the survivor destitute. Long-term care insurance can offset this expense significantly, but many people don't have it. Caregivers also tend to refuse help because they believe the patient will think they are uncaring. What they don't realize is that they are at a high risk for caregiver burnout. Resentment, depression, depersonalization and illness are sited as common signs of caregiver burnout.

Hospice care in the home is covered at 100% by Medicare Plan A. It is designed to provide support to families who are caring for a terminally ill person. This support includes medication management, weekly nursing visits and 24/7 nursing consultation, help with bathing two or three times a week, a social work visit for emotional support and planning a couple times a month, a chaplain visit for spiritual support and funeral planning once a month and a weekly one-hour visit from a volunteer. The hospice staff are trained to understand and deal with issues of dying. Why turn this kind of help down? It's true that it doesn't replace the need for a sitter or caregiver for blocks of time, but it does share the burden of care. You don't have to do this alone and you don't have to wait until the final weeks of life to get this help...Lauren Kelley LMSW, CMC

The Needs of the Dying, David Kessler

The need to be treated as a living human being.

The need to maintain a sense of hopefulness, however changing its focus may be.

The need to be cared for by those who can maintain a sense of hopefulness, however changing this may be.

The need to express feelings and emotions about death in one's own way.

The need to participate in decisions concerning one's care.

The need to be cared for by compassionate, sensitive, knowledgeable people.

The need for continuing medical care, even though goals may change from "cure" to "comfort" goals.

The need to have all questions answered honestly and fully.

The need to seek spirituality.

The need to be free of physical pain.

The need to express feelings and emotions about pain in one's own way.

The need of children to participate in death.

The need to understand the process of death.

The need to die in peace and dignity.

The need not to die alone.

The need to know that the sanctity of the body will be respected after death.