How do individuals and families discern when enough – testing to find the answers to the “why” of decline or illness or the “what” might be done – is enough? How do we recognize when less is more? How can we come to embrace death as a reasonable and even good option, rather than a defeat or a sign that we didn’t do enough? It takes thoughtfulness and a measure of courage.

Clearly, such decisions are among the most difficult. Personal values, the meaning of life, and view of death are critical to decision making, and as important to consider as is medical information. There is no right or wrong, and each individual family must come to peace with it’s own decisions. Some considerations, however, can help a family be more clear and comfortable with their decisions. As tests or procedures are proposed, it’s important to ask:

• “What information will be gained?”
• “How will that information guide care decisions – will it make a difference?”
• “How much discomfort will be involved?”
• “What are the risks of not doing tests?”
• “What are the alternatives to tests and/or procedures?”

Most importantly, information needs to be evaluated in the context of an individual’s life context. An individual who was very active and engaged in life may have the reasons and reserves to withstand difficult treatment and will have a very different recovery than one who was bedridden and whose pre-illness physical and mental resources were near depletion. Ultimately, it’s important to consider: “Will the medical interventions merely forestall death or will they likely provide for a comfortable and meaningful life?”

Very often health care providers are foremost in helping the family with their decisions. It is important that those providers know the person, their history and values, their pre illness life circumstances. While specialists brought in for consultation can give information about tests and procedures, they are often less able to fit the information into an individual’s life context – that is for the regular care provider AND the family to do.
Valued friends and ministers or rabbis can be an important sounding boards and sources of guidance.

Choosing to forego tests and treatment is not the same as doing “nothing.” Choosing to accept death and support the dying process is a real and valuable intervention. But doing so can seem foreign and out of sync with a culture that strives to keep aging and death at bay. The opportunity to accompany someone in the dying process can be life giving and comforting. It is an opportunity lost if it is not actively considered as an alternative to treatment. Choosing death can be part of choosing and gracefully accepting all of life.

Our mother’s physical and mental health was steadily declining. She was taken to “experts” who advised a care setting that represented increased safety to some in our family and more restrictiveness to others.

How did we resolve our sibling differences amicably? Here’s what I learned that I think is worth passing on.

Don’t underestimate the emotional undertones in family discussions and decisions. I was surprised by the intensity of my own emotional reactions, which seemed out of proportion to events. It became clear that sometimes I was reacting as a vulnerable girl rather than an adult.

Many adults have unmet desires to be approved or to be considered “good enough” by parents and siblings. By taking the time to recognize the source of my feelings, I was able to slide into a more mature mode of interacting with my family and to acknowledge my feelings without holding others responsible. Having done so helped me to understand that some of my siblings were influenced as well by feelings that arose from long ago. The moral: Give yourself some slack and cut plenty for others.

Don’t underestimate personal communication. While email, voicemail and text messages can be wonderful tools in keeping everyone on the same page regarding facts, these tools are less effective, and maybe even harmful, in resolving emotional issues. The crucial nuances that make communication effective, such as the tone of voice or the ability to get an immediate reaction, are not available on email.

In the case of my family, I was angered by some of the email I received from siblings and felt my mother’s condition was misrepresented by some and misunderstood by others. I simmered quietly for a few days and nights, fearful that valued sibling relationships were disintegrating. The conflicts were not cleared up until phone conversations took place to “sort things out”. The moral: Make a personal connection by telephone, or if possible by meeting in person to clear the air and sweep out misperceptions.

Don’t underestimate the importance of tolerating differences. With most decisions, there are no absolute rights or wrongs. Caring people come to very different decisions. They also often come to make those decisions in different ways and from different perspectives.

Some individuals feel the new to review information in great detail and become intimately involved in making decisions. Others are glad to simply receive general updates and will delegate decisions to one or another person. Some family members make time and have energy to devote to care decisions. Others simply can’t.
The moral: Suspend judgment as you take time to listen to each other. While listening takes time, most decisions do not need to be made immediately and the investment of time can offer life-long dividends for healthy sibling relationships.

Don’t underestimate personal pride. I finally had to admit to myself and others that I was hurt my family didn’t call on me to help guide decisions. After all, I assist families with such matters every day. In my family’s case, my mother had designated a sibling other than myself with the Power of Attorney for her health care decisions. In the end, whether I agreed or disagreed, I had to remind myself that my mother trusted my sibling to make decisions for her. Perhaps the most important role I could play was to support the individual who had the burden of making the decisions. The moral: Respect each other for the important roles each of you has in the family.

Each of us can play a constructive role in helping our elders age safely and with grace. None of us can dictate how others will respond, but we can learn to be honest with ourselves and each other. When we do, be become more comfortable with each other and more productive as a family.

Meeting an elder’s needs can be exhausting and lead to a sense of failure. One critical element of effective caregiving is to learn to set limits for yourself.

Determine what you can and cannot do for an elderly relative. Doing so will help you establish and maintain a healthy relationship with your elder.

Caring for an elderly parent or relative is done best when it is a positive choice – not when it feels like an obligation or imposition. Look at your motivation and ask yourself “why do I want to help?”

The motivation for caregiving, unfortunately, too often arises from a sense of guilt or desire to repay a parent for what they’ve given you. A parent’s gift of life and rearing are not debts to be paid back – there is no way to do that. Caregiving can be motivated also by a desire for parental recognition, approval or closeness. Acting from a sense of guilt or need for approval may endanger your caregiving of a parent or lead to disappointment for you and your parent.

To determine what is best, begin by identifying your elder’s needs: the physical, social and emotional caregiving that may be required. What does your elder need to remain well cared for in his or her current environment? How much is the elder capable of doing independently?

The input of a professional may help you to understand your elder’s needs and to determine the best approach to take. Is dad’s refusal to walk alone based on a bona fide physical limitation? Is it rooted in fear? Is it the result of desiring attention? You can learn how much help is needed and what private and public resources are available to assist.

Once you determine the types of assistance an elder requires, decide what you are able to provide. Consider how your time at caregiving will affect other areas of your life, such as your relationship with a spouse or children or your career.

As you consider how to help an elder, do not underrate your own needs. As an airline attendant advises when starting on a journey, “the able person puts on their oxygen mask first.” During a crisis, elder care concerns may lead to temporary disruption in your life. But don’t allow long-term disruption. The health risks to you, the elder and to the relationship between you outweighs the benefits of putting your life “on hold.”

Don’t over promise what you will do. Be conservative in deciding how much assistance you can provide and how available you will be. It is better to promise less and do more, than to promise more and not fulfill your commitment.

If your elder wants you to do more than you can, be firm in your resolve. Focus on what you are doing and don’t let the focus shift to what you are not doing. Acknowledge the elder’s feelings with a simple, “I’m sorry you feel that way,” rather than giving a lengthy explanation that will merely exhaust you without satisfying the elder.

When you think about what you can and want to do for an elder relative, consider these questions:

1. Am I acting to relieve my own anxiety?

2. Does this situation truly demand my involvement or can somebody else meet this need for my elder?

3. How will my involvement impact other parts of my life?

4. Am I trying to meet someone’s standards other than my own?

Learning your limits and to say “no” are signs of strength. Make your caregiving a positive choice, rather than a response to guilt or a sense of duty. Doing so will give you more patience and energy for the care you do provide.

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.

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.

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.

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.

Most decision 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 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 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.

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 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.

“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