ElderCare Solutions

Geriatric Care Management Services

An Advocate and an Ally

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“Here’s your medicine, honey,” the nurse said as she handed Mrs. Smith her morning medicine. Mrs. Smith politely took the medicine and then turned to me and commented, “I’ve been taking that medicine for longer than she’s been alive.” Her nurse was distracted by grey hair and a diminutive frame and did not allow for a capable and intelligent 84-year-old woman in the bed.

No one should face aging and illness alone. Too often older adults find themselves without an ally or advocate when they are most vulnerable. It is not uncommon for an ill or hospitalized older adult to appear more confused, frail, and incapable than they actually are. Family members may accede to the advice or pronouncements of professionals without questioning assumptions made with limited information and thoughtful consideration of the individual. Illness and infirmity can diminish the best of us. This diminishment is more dramatic for older adults.

Informed advocacy plays a critical role in ensuring the needs, desires and values of a disabled or older adult are recognized, respected and protected. It can be easy and expedient to make assumptions or assign a label to an older adult. Too often deficits are the focus with little acknowledgment of individual strengths and capabilities. Likewise a deficit in one area does not translate to deficiencies in other domains. An older adult who does not know the date may be well able to express wishes regarding treatment. It is tempting to globalize limitations and not give strength and capabilities their full weight as short and long-term decisions are made.

Advocates advance the best interests of the individual whom they are serving. That charge is not always so straightforward. Many of us, no matter our age, choose unhealthy or unwise practices. One can be foolish without being incompetent. Likewise, professionals and institutions – hospitals, nursing homes and housing facilities – may have interest or values that are at odds with the interest and values of the older individual.

When an individual is voiceless and/or seen with a limited perspective, the advocate gives a voice and a full sense of the person on their behalf.

Effective advocacy involves:

  • Willingness to listen to and learn about the individual
  • Willingness and ability to intelligently investigate and even unearth options ask questions and, when needed, challenge assumptions and conclusions
  • Being an active participant in decisions and bring the individual into the discussion to the full extent possible

Health care advocacy requires both fearlessness – identifying and confronting conclusions that are at odds with the best interest of the individual – and humility – openness to ongoing learning about the person and how to best discern and advance his/her needs. Health care advocacy is not for the faint hearted. It involves an effort to acquire the required skills and the sensibilities to ensure that vulnerable individual are well served. That, in the end, is a service to us all.

A Reason to Wake Up

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“Did the staff tell you what you COULD do?” the nurse asked Leo as he outlined all the prohibitions given to him after suffering a stroke. Indeed, without assistance in how he might creatively adapt previous activities to his new physical limitations, he felt that “my life is over.” With a singular focus on safety, Leo’s caregivers neglected to see that he was given a prescription for a life he didn’t see as worth living.

All of us, no matter how what our circumstances, need a reason to wake up in the morning. In a rush to a remedy, well meaning family members and professionals can overlook an exploration of what brings meaning to an individual’s life.

How do we reconcile the reality of necessary limitations with a desire to maintain a sense of self, a sense of competency and worth? An older adult facing a loss in function and abilities may cling to “what was”, disconnected from the caregivers and providers who, with good intent, offer encouragement and support to “move on.” The challenge is to bridge that disconnect.

In the opening of A Poisonwood Bible, author Barbara Kingsolver reminds us “one has only a life of one’s own.” An extension of that obvious statement is the often-overlooked consideration that we all learn and grow in our own way and at our own pace. Coping with grief and loss is, in many ways, a solitary and individual experience. Caring for another who is in emotional pain because of a loss of health and function includes acknowledging the experience and its pain. When we see another suffer, we may too quickly look for a remedy to make it “better”. Support often involves simply being with the other, allowing time and space for grief before urging the individual to “go forward.”

Meaning in life, it seems, comes from authentic encounters. No one can create meaning for another, but perhaps in care giving we can make a contribution. How do we help an older adult continue to look for and find meaning as opportunities seem increasingly denied? Some suggestions for opening an exchange that can help the older adult find their own answers and their own sense of meaning:

  • Offer a large dose of listening before giving a small dose of advice.
  • Ask questions, rather than giving answers:
    • “What are you afraid of?”
    • “You seem sad, are you?”
    • “If we could change one thing to make you feel better, what would that be?”
    • “What would you like?”
    • “What did you like?”
  • Acknowledge feelings, resist labeling them as “good” or “bad”.
  • Express confidence, rather than pity.
  • Take time, not control.
  • Look to possibilities, rather than prohibitions.

Resiliency is a gift of aging — older adults don’t achieve longevity without a significant spirit of resolve. As we care for older adults and help them accept life losses with grace and a sense of meaning, we are well advised to look to our elders for that store of resiliency and take our cues.

Power of Attorney for Health Care: Choosing Your Agent

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The selection of an agent under the Power of Attorney for Health Care (POA) should be made with thought and care. The person you choose has a grave responsibility to act on behalf of an ill or elderly individual often under very difficult circumstances.

Some important guidelines in choosing and communicating with an agent include:

  1. Name someone you can trust with your life — in fact that is what you are doing.
  2. Don’t be afraid of hurt feelings. Choose the individual(s) you believe will serve your interests the best. Consider emotions, but don’t let them dictate the decision.
  3. Your agent should be someone you can comfortably talk with about your wishes for care during illness. These conversations are best made “around the kitchen table” and should include conversations about your values. If a prospective agent isn’t comfortable with such conversations, he/she might not be the best choice.
  4. Ideally, the agent is someone who can be readily available, and emotionally and intellectually capable of asking questions and of articulating and advocating the individual’s wishes in sometimes unfamiliar or overwhelming situations.

To insure that the POA is used as intended, the agent and all successor agents should have copies of the POA as should the primary physician and a family member or members. To be most effective and meaningful, it calls for an ongoing process of communication between the individual, the agent, family members and caregivers.

During illness and hospitalization, the agent should ask the physician in charge, the “attending physician,” to write an order to “contact the agent for consents for all tests and procedures” in order to ensure coordinated communication among other specialists who may be called in as consultants.

In considering interventions, the agent should consider the ultimate goals of the care. In consenting to tests, it should be clear how the information derived from the test would be used to promote the identified goals of care. It’s very easy, in this age of specialization, to treat the symptom or body “system” and lose sight of the person. The purpose of the agent is to ensure that all decisions regarding tests and procedures are made in the context of the individual and his or her values and wishes.

The Power of Attorney for Health Care is much more than a legal document. It establishes a sacred trust and demands the courage to consider the most critical life and death decisions we all ultimately face, for ourselves and for others.

When a Loved One is Hospitalized

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1. Get to Know the Staff

  • Will one nurse be consistently in charge of your elder’s care? If not, find out who will be coordinating care and the best time to call or meet with that person. While the physician manages the medical treatment, the physician doesn’t coordinate all aspects of hospital care.
  • Who will be planning for care upon discharge? Some hospitals have social workers, or in some cases, “discharge planners”. They are planning for discharge very soon after admission and so should you. Get in touch with this staff person to give you enough time to consider options:
    • Will my elder be able to be discharged to home?
    • Will my elder require and be eligible for home health care through Medicare upon discharge, including nursing care and physical, occupational or speech therapy?
    • Make sure that any equipment or services are put in place before discharge to home to provide for a smooth transition.
    • If my elder needs care in a nursing home, what are our options?
  • Contact the doctor to determine:
    • What is my elder’s prognosis/chance for full recovery?
    • What treatments/tests are being considered and what are the benefits and risks of these treatments/tests?
    • What happens if the treatment/test is not done?
    • Are there alternative treatments or measures that can be tried?
    • What are the costs? Will the costs be covered by Medicare?
    • Make sure the MD has a good sense of the pre illness functioning and all medications and treatments in place prior to hospitalization.
    • Can therapy be put in place to prevent loss of function due to inactivity
  • Designate one family member as the spokesperson and information gatherer for the family. Having more than one spokesperson can lead to misunderstanding and miscommunication.

2. Help the Staff Care for Your Elder

  • Provide information about your elder that will help the staff better care for him/her:- food preferences, ability to hear or see well.
  • Bring a picture of your elder during healthy, active days to post on the wall – it helps staff get to know the person behind the illness.
  • Ask questions. Research shows that when individuals are involved in care, recovery is improved.
  • Request that your elder be allowed out of bed, even if in a chair, if the physical condition allows. Inactivity and bed confinement can lead to complications and prolong recovery.
  • Bring up concerns respectfully. Most staff members want to do their best to care for your elder, but working conditions can be difficult. While protecting your elder, treat the staff as a partner in recovery. If you have concerns, bring them to managers and people in authority who can resolve them.

3. Take a Hands-On Approach

  • Offer to assist with little tasks- get water for your elder, help with eating and bathing, if possible – it makes you feel useful, provides an extra measure of caring and helps the staff.
  • Use touch to communicate. Your elder may be too ill or tired to talk. Silence can be golden. Sitting quietly at the bedside can bring great comfort. Try a gentle hand massage. Don’t let tubes and machines get in the way of human contact.

4. End of Life Decisions

  • Make the physician and staff aware of documents regarding health care decision making. A copy of the Power of Attorney for Health Care should be provided so all staff are aware of the wishes of the elder regarding use of measures to sustain life.
  • Despite the fact that hospitals deal with life and death on a daily basis, discussions about end of life and the elder and family’s wishes don’t automatically occur. If an elder is very frail and/or gravely ill, it is appropriate for the family to initiate a conversation with the physician and staff about measures that may be employed, such as resuscitation, to keep your elder alive.

5. Discharge From the Hospital

  • Before discharge, request written instructions for home care, goals of any home care services being prescribed, use of medication and follow-up treatment.
  • If you believe discharge is premature, talk with your doctor. If your elder is covered by Medicare, you do have the right to appeal a discharge decision. The steps for appealing a discharge decision:
  1. Request a formal “notice of non-coverage” from hospital personnel, before discharge;
  2. Once you receive the notice you have until noon the following day to contact Medicare (1-800-647-8089) and request an immediate review of the discharge decision. A review typically takes 24 to 48 hours — your elder will not be charged for the stay during the appeal process, regardless of the appeal decision.

How to Talk to Medical Professionals

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Even the most intelligent of us can become overwhelmed in an often-unwieldy health care system, in which a variety of consultants and specialists, tests and procedures demand attention and decisions.

Most decisions do not need to be made urgently, but can be deliberated. Take the time to digest the information and seek clarification as needed. Often, a “watching waiting” approach is indicated.

Most geriatric health professionals are willing to answer questions, but to make life easier for everyone, designate a capable “point person.” It’s also helpful to preface a conversation with, “ I need a few minutes of your time” or “when is a good time to talk with you?” or “who is the best person to talk with?”

The underlying question individuals and families want to consider is “What do we want to accomplish?” The answer to that question will guide further questions and decisions that are made. Remember that treatments (procedures and medications) can be effective, but not necessarily have benefit for each individual. All treatments should be made in the context of the individual, their life circumstance, other health concerns and individual values.

Some other medical intervention questions to consider:

  1. What conditions are you trying to rule out?
  2. What treatments and tests are being considered, what information are you looking for, and how will that information impact on treatment?
  3. What are the benefits and risks of treatment?
  4. What is the likely outcome if treatment is declined or delayed?
  5. Are there other treatments/approaches that can be tried?
  6. How will we know the treatment is effective and how long will treatment be necessary?
  7. What is the prognosis and chances for a full recovery? What will “recovery” look like?

Thoughtful dialogue creates a partnership that keeps the ill individual central to decision making. This partnership benefits everyone, patients and practitioner alike.

Holiday Tips for Families Visiting Elderly Relatives

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After many months of separation, the holiday season brings families together to celebrate and catch up. For families with older relatives, it is an opportunity to check in and make sure that all is well. Using your visit to be a thoughtful observer will help you assess an elder relative’s well being and, if necessary, take early steps to insure that small problems do not become large ones.

ElderCare Solutions, Inc., a Chicagoland area geriatric care management practice that assists families in managing the care needs of elder relatives, suggests families consider the following questions to alert them to subtle changes that may warrant professional investigation and medical intervention:

  • Is household maintenance up to established standards?
  • Does your relative tolerate activity as he/she used to? Does he/she get out of breath, easily fatigued?
  • Is your elder relative interested in participating in the family’s traditional holiday activities, such as visits to other relatives or friends or preparing special foods.
  • Does your elder have meaningful outside activity during your absence that he/she readily talks about?
  • Is your elder able to identify friends with whom he/she has regular contact?
  • Is your elder able to move around the house easily — climb stairs, get in and out of furniture — and use household equipment without difficulty?
  • Can your elder recall significant people and events?
  • Is there an adequate supply of food and household necessities in the house?
  • Has your elder had a significant, unexpected weight loss over the past year?
  • Is your elder keeping up with health care and finances?
  • Does your elder seem somehow “different”?

“Very often, problems that surface may be easily remedied with early and simple interventions,” says Signe Gleeson, a registered nurse and co-founder of ElderCare Solutions. “With support, most of our relatives age easily and gracefully, learning to adapt to the changes that are part of normal aging. The most meaningful holiday gift you give your elder may be a caring and observant visit to insure they are healthy and happy and remain so during the New Year.”

For more information on caring for your elderly relatives, call the nurses of ElderCare Solutions at 630-416-2140.

Reaction to a Recent New York Times’ Article

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Reaction to a recent article in the New York Times:

“Stepping In for a Parent With Alzheimer’s”
“Your Money” section
By TARA SIEGEL BERNARD
Published: November 5, 2010

“Stepping In for a Parent When Alzheimer’s Sets In” offers some good guidelines to protect older adults who face diminished capabilities. I take issue, however, with the “role reversal” suggestion, which implies that the parent is now a child. In fact, an adult with increased needs remains an adult who deserves that ongoing recognition, even as a decline continues. The decline in dementia is variable and can not always predicted, unlike the predictable milestones of childhood. The view of the older adult as child can lead to an overreach in interventions and create more restrictions than warranted. The challenge is to provide the right amount of assistance while maintaining respect for the history and life accomplishments, which remain within the person who, once independent, can no longer do it alone.

Signe Gleeson
President of ElderCare Solutions