Keeping the Wrinkles out of Elder Care

By Penny Golden, RN

As science progresses and people are living longer, many of us find ourselves faced with helping to care for aging family members. This can be a confusing process. Which doctor does Mom see for her heart? Where does she get her prescriptions filled? If Dad can’t drive, how will he get his groceries? With a few simple organizational and practical tips, navigating your way through elder care can become manageable.
Ideally, steps should be taken before an aged person becomes too incapacitated to help with the process of planning for elder care.

Unfortunately, many people are uncomfortable discussing getting older, but trying to sort out doctors and medications and even who to call when a loved one dies can add more stress to an already stressful time. This is a situation where “an ounce of prevention REALLY IS worth a pound of cure!”

Accurate and regularly updated lists can help organize care of your elderly loved ones: medications; doctors and their specialties, phone numbers, fax numbers and addresses; health history, hospitalizations and surgeries; friends’ names and phone numbers. Keep all important lists in a file in a safe but easy to find location – i.e. a brightly colored file folder on top of the refrigerator.

Medications

Older people often take multiple medications prescribed by multiple doctors. Keeping a current list of medications is imperative — there can be dire consequences if some medications are mixed. Bring the list with when your loved one goes to a doctor; it can save time and possibly a life. Include on the list the medication name, dose, what it is for, times it is taken, and who prescribed it. If a medication is added or a dosage is changed, be sure to update the list accordingly. Include the phone number or email for the pharmacy where prescriptions are filled. If you have questions about a medication, ask the pharmacist!

Doctors

Because so many doctors are specialists, your family member may have several doctors to visit on a regular basis. Keeping a list of doctors and their contact information can help determine who should be contacted in an emergency or for specific symptoms. Keep a printout of directions to and from the doctors’ offices to help people who are bringing the patient to appointments.

Health History

Keeping an accurate health history with important papers can save valuable time at doctors’ appointments or emergency room visits. No one wants to have a test redone if it was done recently, and knowing when tests were done can also be helpful for comparisons. Keeping a running list of illnesses, injuries, tests and hospitalizations can help during current health crises.

Friends

Often people overlook the role friends play in their lives. At times, older people might feel more comfortable turning to a friend than turning to family. Keep a list of friends and their contact information handy. If you need answers to questions about your parents, aunt or uncle or grandparent, their friends may be your best resource. In addition, your loved one would want his or her friends contacted in the event of their death, so having all those names and numbers on one list can help at that time as well.

A Few More Helpful Ideas

Funeral planning should be done when individuals are healthy and able to let you know their wishes. Burial or cremation? Funeral Mass or memorial service? Flowers or memorial donations? What are their favorite hymns? Some individuals may even want to write their own obituary, or make a list of scriptures they want read at their funeral. Once you have these answers, write them down!
For a family member who can no longer drive or needs transportation for a short period of time, some grocery stores and pharmacies offer delivery. Check into these BEFORE you actually need the service. Another option is mail order medications, which can be sent in three month supplies and may be more economical.

Companion services can help your loved one stay in their own home. These services often include not only direct care of individuals, but light housekeeping, meal preparation, transportation services and grocery shopping.
Aging can be difficult for individuals and their families, but being prepared for aging can help! Facing later years head-on in a logical manner can prevent a world of stress and complications. Helena Rubenstein said, “Hard work keeps the wrinkles out of mind and spirit.” A little hard work can also keep the wrinkles out of elder care!

Will Your Family Need an Elder Care Advocate?

Will Your Family Need an Elder Care Advocate?

By Signe Gleeson, RNC, CCM, MS

No one should face aging and illness alone. Too often, older adults find themselves without an ally or advocate when they are most vulnerable. Illness and infirmity can diminish the best of us. This is more dramatic for older adults. It is not uncommon for an ill or hospitalized older adult to appear more confused, frail, and incapable than they actually are.

This is why an increasing number of families call on elder care advocates for assistance. At ElderCare Solutions, we support older and disabled adults and the people who care about them. Our role as elder care advocates is to help older adults achieve their goals and implement their choices when they can’t do it themselves.

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. It is tempting for physicians and family members to globalize an individual’s physical or cognitive limitations and to disregard the older individual’s strengths and capabilities as short- and long-term decisions are made. But as advocates, we recognize that a deficit in one area does not necessarily translate to deficiencies in other domains. For instance, an older adult who does not know the date may be well able to express his or her wishes regarding treatment.

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. Advocates seek information about the individual and anticipate their present and future needs. We help to take some of the emotion out of the decisions for care, treatment and medical intervention. Part of our role is to consider the result of intervention and how it will affect the individual’s functioning.

We often see situations where a doctor may make a recommendation for a medical procedure without fully understanding the patient’s circumstances. Most people have a hard time questioning doctors. For older adults, this is particularly difficult. Family members may accede to the advice or pronouncements of professionals without questioning assumptions made with limited information or thoughtful consideration of the older individual. One of the strongest contributions we make as patient advocates, beyond our clinical skills, is to ask questions and paint a picture for the physician or family member of who this person is as an individual, how they live their life and what they value.

When to Call an Elder Care Advocate
Elder care advocates are often called in when an older adult is resisting assistance or intervention. We are also asked to assist when family members are in conflict over difficult care issues. These conflicts can arise between the elder parent and his/her children or between siblings. Our role is to be objective, provide expert assessments of the older adult’s individual needs and make specific recommendations for their care. As the advocate for the older adult, we can provide a point of view from which other family members can make decisions.

Effective advocacy involves:
- A willingness to listen to and learn about the individual/the whole person – their values and how they derive meaning in life
- A willingness and ability to intelligently investigate and even uncover options, ask questions, and, when needed, challenge assumptions and conclusions
- Being an active participant in decisions and bringing 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 or her needs. Health care today has increasingly become a business, in which hospitals, nursing homes and housing facilities may have interests or values that are at odds with the interest and values of the individual. That makes it increasingly important to take a “buyer beware” stance to ensure that vulnerable individuals are well served.

When Enough is Enough

“Sometimes the gentlest of breezes can topple us off the precipice.” While we all know that death is inevitable, it is difficult to accept it as such. Often we search for answers through medical procedures and technologies when the true answer comes from nature, the “gentle breeze theory”. The world of technology and a “fix it” mentality is certainly a blessing, but it can also prove to be a curse. Instead of helping families experience death as a gentle breeze, it creates a stormy and troubled time.

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.

Helping Parents and Family Work Together – A Personal View

The experience of working with my many siblings as we attempted to make the “right” care decisions with and for my mother left me humbled and gave me a new appreciation for the challenges we face. It’s a lot easier to “talk the talk” than “walk the walk”.

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.

Learn to Set Limits

All of us want our elderly parents and relatives to be well cared for. Yet, despite the very best of intentions, we may be unable to do everything that is needed for our elders.

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.

An Advocate and an Ally

“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

“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.