Caregiving often has deep and widespread effects. Whether you are the primary caregiver or coordinate care for a loved one, recognizing the potential impact is important. Caregiving commitments can affect marriages, work or career, family dynamics, and financial stability. The statistics below show the ever-present ripple effect of caregiving.

Being a Caregiver

Marriage and Family Dynamics

Work or Career

Financial Stability 

Having a plan in place before there is a need can help ease the financial and emotional burden of caregiving. Start the conversation today to prepare you and your loved ones for the journey ahead.

(Sources: Genworth Financial)
 

The eighth and final station of late life (or Grieving/Legacy) requires emotional work and time to accomplish. Grieving for a loved one’s death takes place over a longer period of time. Different family members have different emotional needs during the process of moving on.

	“A good death for our parents means a better life for us.” – Dennis McCullough

Acknowledging Your Support System
As you look back, be appreciative of those who offered their help. There is a need to bring a formal end to the “temporary family” who gathered to provide caregiving. Acknowledging one another’s contributions helps each member move on in their lives. Say your thanks for the service of others.

Returning to Our Lives
After the death of a loved one, the pressure to return quickly to our lives is present. Resuming regular routines is difficult after an extended time of caregiving. Finding your own ways to grieve may include creating your own personal rituals, connecting with your religious community, or leaning on close friends.

Maintaining Communication
During the time of caregiving, you built the skills needed to talk with family members and others about your loved one’s care. Communication often turns inward for mourners. Respect the importance of these “internal talks” until you’re ready to share your emotions. Remember that you are modeling grief, celebration of a life, and strength for your children and grandchildren who have less experience with loss.

Accepting Kindness
Along with saying thanks, allow yourself to accept extensions of kindness. Friends often risk treading into uncertain territory to reach out. Don’t travel down the easy road of slipping out of friends’ lives. This is especially important for your widowed mother or father.

Late life journeys are unpredictable to the very end. The daily practice of caring for an elder’s needs increases our capacity for compassion. The human experience of death reorders priorities. Allow these changes to enrich your own life and relationships.  

By late life, most elders and their families recognize that life must come to it natural end. Often, the longer the journey, the more comfortable our aged parents become with the idea of death. Dennis McCullough, author of “My Mother, Your Mother,” feels that being fully engaged through all the preceding stations of Late Life builds the emotional and spiritual capital to support ourselves during the Station of Death. Caregivers are better prepared for “closing the circle of life.”

Care for Active Dying

Weigh the pros and cons of the locations of dying and the family work entailed with each choice. If your loved one must remain in a hospital, palliative care services focus on symptom relief without excessive testing or intrusive methods.

Know the difference between what is convenient and efficient and what is humane for the elder.

Remain present through the end of your parent’s life. By staying connected, you will experience the “ceremony of passing life to those who remain.”

Protecting the Elder

Get comfortable with how to handle visits and calls from supportive friends. If the time is not right, offer to meet at another time.

Know “how much visiting is too much.” Be aware of the elder’s responses, act as a gatekeeper, and guide activities to get the most quality out of those remaining days.

Let the elder admit to the anxieties surrounding death. Create a calm environment with gentle touch, soft music, and pleasant words.

Support at the End

The additional care needed by a dying elder can mean dealing with new faces. Keep the elder’s support system visible by introducing yourself to the new doctors and attendants.

Ask local religious professionals for their involvement and draw on their support.

Contact a funeral home in the final days before death, and meet the people who will help your family after your parent’s death occurs.

Working with Medical Staff

Medication in the final days “creates a positive sense of comfort for the dying elder.” If your parent is not comfortable, talk to the physicians and nurses to make sure that your goals are achieved.

While some may find comfort in the hums and clicks of medical machines, the sounds can draw attention away from the dying elder. Consider paring down machinery at the bedside.

In the final days, physical needs will be met by others. Share nursing care with professionals, and the “memory of your hands-on care will long remain with you.”

Acknowledging death is a challenge. By the sixth station of late life (or Prelude to Dying), families have learned to note the most subtle changes in an elder’s behavior and responses. Deciding to “walk the walk” consists of noticing clues that generally precede an elder’s passage into death. Dennis McCullough, author of “My Mother, Your Mother,” advises children of aging parents to be aware of what emotions you project onto your parent during this downturn.

By this station, the practice of slow medicine has given you confidence as a caregiver and allowed you to know your parent fully. Despite having less control at this stage, you can still be an active caregiver by taking these steps.

Keep elders moving.
With age, elders suffer from paper-thin skin with aching joints. Improve circulation and change pressure points with small changes in position like moving to a favorite chair or shifting in bed to look out the window.

Find single-person activities.        
Arts are a great outlet and easy to manage for elders who may be confined to their beds. Listen to music, read poems aloud, or look at family photo albums.

Accept uncertainty.
During the late stations of life, a feeling of uncertainty is ever present. Spend your energy getting “emotionally centered,” not trying to control the situation.

Take care of yourself.
As with the previous stations, taking time to address your own needs provides a better environment for yourself and your elderly parent.

Use a communication tree.
Have a written list of who will call whom when the loved one passes away.

Balance individual needs with standard protocol.
As with the Station of Decline, greater comfort and quality can be achieved by eliminating some medications. Slow Medicine teaches that a last-ditch treatment may relieve small symptoms but can keep an elder from enjoying the remaining pleasures of life.

Learn about POLST.
POLST (or physician orders for life-sustaining treatment) goes beyond DNR orders. Actions such as testing, intravenous fluids, tube feeding, and antibiotics are commonly used with failing and ill elders. Become familiar with the decisions you'll have to make before you have to make them.

Only 1 in 10 elders pass away in their sleep. More often, elders experience more complicated declines caused by strokes, cancer, or dementia. Despite the care and persistence you’ve used in the previous four stations of Late Life, an inevitable shift occurs.

During this time, also known as the Station of Decline, an elder goes from “disability-free” to “disability-burdened.” Author Dennis McCullough predicts in his book, “My Mother, Your Mother,” that an 80 year old elder will experience 7 ½ years disability-free followed by 2 ½ years of being disability-burdened.

As this happens, an elder will struggle with a loss of identity and loss of personal dignity. Seeing this causes Baby Boomers to begin wondering how they will be cared for when they grow old. McCullough believes that what children of aging parents do now establishes a pattern of commitment and provides examples for their own children.

Focus on Quality of Life
Is the surgery or therapy more taxing than doing nothing? Deciding where the greatest quality of life resides can be uncertain.

Be a Good Listener
Elders can experience “lows.” Try to discuss an elder’s feelings. Expressing what an elder is feeling can be therapeutic – for both parent and child.

Everyone Counts
Caregiver strain is inevitable. Stress can be offset by a fresh set of hands or community support groups.

Use Care Managers
Supplement your care by hiring a care manager to oversee your elder parent’s care. Experienced care managers know the medical system and are advocates for elders.

Make Adapting a Goal
In this period of decline, adapting is a primary goal. Both elders and caregivers must respond to anxiety, feelings of helplessness, anger, stress, or the temptation to avoid the situation.

Avoid Overmedication
Discuss the pros and cons of each medication with the elder’s doctor. Too many drugs, prescribed and over-the-counter, can increase the risk of falls. Geriatricians often reduce or eliminate medications for trial periods during a time of decline.

Listen for Life Review
Memories and life stories are fleeting. Recognize when your parent is telling their narrative (or life review) and be thankful for the experience.

After a crisis, the rehabilitation process (or “Station of Recovery”) can be a breath of fresh air. It is normally slower and less chaotic. The staff appears more leisurely and the patients are more mobile. According to Dennis McCullough, the Station of Recovery is “an opportunity; don’t let it slip away.” Structured rehabilitation can open the door to better functioning and health than might have been present before your parent’s crisis.

Adjusting to Rehabilitation
Prolonged bed rest causes an elderly person to lose strength daily. An elder is three times more likely to fall after one month of bed rest.

Find positive roommates and friends for your loved ones. Don’t let them get dragged down by negativity.

Use your best cheerleaders during this time, and “forget about being reserved.”

Learn the rules of reimbursement. Medicare and supplemental Medigap insurance has strict guidelines about what they are going to pay for.

Don’t confuse what Medicare benefits and insurance will cover with the real needs of an elder.

During Rehabilitation
Be a patient coach. Repetition is necessary to create new muscle memories.

Work with the team of rehab workers without becoming demanding or pushy, which will cause workers to disengage.

How are family members and friends doing under the stress of a crisis? This “opportune moment” will help you decide if you have the right leader for the next time the elder enters the medical system.

Set specific goals of what your parent will need to be able to do in order to return home. Respect your parent’s opinion and negotiate a family compromise.

Heading Home
Consider elder home renovations and age in place designs.

Evaluate emergency call systems for your parent after they’ve moved home.

Ask emergency responders about their protocol, and compile an emergency information pack.

Slow Medicine equips you with an understanding of your parent’s fears, hard work, setbacks, gains, and accomplishments. This knowledge will lead them back to an independent life.  

The first crisis in the life of an elder is a time for immediate action. Despite your vigilance in the past, some crises will be unavoidable. Understand that this is not the time of “why’s” and “what if’s.” During the Station of Crisis, you have become the older adult caring for your aging parents and making decisions about their care.

This third station of later life, described by Dennis McCullough in “My Mother, Your Mother,” may cause you to feel inadequate. By using these practical tasks, you can improve how you handle this time of crisis.

1)    Find out what happens when someone calls 911 in your parent’s area. What hospitals do they serve? What is the average response time? Are they covered by your parent’s insurance?

2)   Hospitals have a certain culture. Work patiently with nurses and doctors; don’t get labeled a troublemaker.

3)    Put your role as advocate into effect. Slow Medicine means that “everyone who cares needs to be heard and engaged.”

4)    Take time to bond with other patients’ families during a parent’s hospital stay. By comforting someone else, you gain perspective.

5)    Prevent harm by making “gentle” inquiries about every test and drug. Don’t let anyone convince you that you are becoming paranoid by asking questions.

6)   Start your preparations early by asking for a list of medications for after the hospital stay.

7)   If family members can’t come immediately, negotiate when they will arrive. Spell out what kind of support is needed.

8)   Beware of overly aggressive treatments on elders whose bodies are not resilient enough to handle them.

9)   Notice changes in your elder parent’s mental status. Depression, dementia, and delirium often work together.

10)  A crisis can cause an elder’s family to make premature decisions. Keep from making the easy decision to permanently relocate them to a nursing home.

In our third entry discussing slow medicine, we explore compromise or "the second station of later life."  For an elder, changing circumstances make the station of compromise a vulnerable time. "My Mother, Your Mother" author Dennis McCullough believes the Station of Compromise is the time when careful attention and intervention can make the greatest and longest-lasting difference.

Put Yourself in Their Shoes

Slowly join your parents’ conversations with their doctors.

Don’t turn to pills first. Realize that medications may alleviate some issues but still have consequences.

Don’t be afraid to ask for a diagnosis in “plain English.”

Be aware of subtle changes in behavior or lifestyle.

Change Your Approach

Use holistic methods to improve an elder’s health such as diet, rest, exercise, social engagement, and spiritual practice.

Be a witness instead of taking over. Give your aging parents time to explore their approach to a new situation. 

Build understanding and trust before bringing up your concerns.

Build Your Team

Don’t wait until an emergency to meet an elder’s friends and support system.

Find a physician willing to be the “go-to” doctor for guidance when you find medical care is becoming impersonal.

Use older grandchildren as advocates and observers.

Take advantage of the time before a medical crisis to speak with your siblings about shared care.

Be Proactive with Care

Avoid “fast medicine” by asking a doctor for more time, or leave a list of concerns for future visits.

Encourage coordination of care by using professionals such as geriatric care managers.

Monitor medication and educate yourself about interactions.


You’ll see the value in your persistence by “warding off a crisis.” During this time, use patience when negotiating your evolving role in the lives of your aging parents.

Stability for an elder may consist of a “set” schedule without the rigors of daily life imposed on them. A normal day consists of waking up without an alarm clock, reading the newspaper, collecting the mail, talking with friends over lunch, and taking a walk. Small illnesses or chronic conditions may come and go without much disruption to this relaxed schedule.

During this time of stability (or “first station of later life”), elders and their families must be proactive and prepare for the end of this period of stability. Change is inevitable. Slow medicine means being proactive with attentive listening. Listen to your aging parents as they talk about how they spend their time, observe how their mind works, and how they view successful aging. Small clues will begin to emerge along with a deeper understanding of each other.

In Dennis McCullough’s book, “My Mother, Your Mother,” he suggests using these tactics during an elder’s time of stability.

Put Yourself in Their Shoes

Learn about aging. Can you tell the difference between the normal aging process and concerning behaviors or actions?

Discuss how decisions get made. If a doctor tells your parent that the decision is “up to him,” can you be sure that it’s time for a decision to be made? Elders need time to think about their options. If additional advice is needed, slow medicine teaches us that it is okay to ask for more time.

Evaluate Denial. Be a “quiet anchor in reality” for a parent that avoids any planning for a future involving changes to their current way of life.

Put Yourself to Work

Assess Your Parents’ Health Habits. If your aging parent does not exercise and practice healthy habits, the stability stage is the best time to begin.

Keep a Connection to Community and Other Generations. The changes of life, such as moving or the loss of old friends, can cause aging adults to lose their connection to the outside world. Organize ways to re-ignite relationships. Visit senior centers to establish connections among others in the same age group. Begin new traditions with grandchildren with weekly or monthly activities.

Establish Advance Directives. Know how your parents would like to be treated if they lose the capacity to make their own decisions. It may be quite different than you’d expect.

Anticipate Interdependency. According to McCullough, using slow medicine can help you avoid “30% of all emergency room visits” by anticipating a crisis before it happens.

Talk with Physicians and Learn About HIPAA. Be patient yet assertive when building relationships with the doctors of your aging parents. Let the staff know “who cares” and the preferred ways of communication. Patient confidentiality (HIPAA) becomes important as you expand your role as advocate for the long run.

Coming up next: Impacting an Elder's Life Through Compromise

Dennis McCullough, M.D., explores the concept of slow medicine in his book, “My Mother, Your Mother.” According to McCullough, slow medicine is a movement to keep elders safe and comfortable while preserving their quality of life. It requires a “special commitment undertaken by families and health professionals working together.”

The concept of slow medicine focuses on elders at age 80 and beyond. Millions of families are coping with elder care needs without sufficient resources or professional advocates. By being aware of an elder’s changing needs, a medical crisis no longer dictates care. Slower decision making allows physicians to respect what the patient really wants and honor the normal aging process.

Slow medicine is a “commitment to care for those weakest among us in a way we would want to be cared for ourselves.” McCullough identifies five principles as a guide to enriching and supporting an elder’s life to the end.

I. We must understand our parents and other elders deeply.

Family and caregivers must always strive to see the person first when considering health care needs and decisions.

II. We must accept the need for interdependence and build mutual trust.

A sudden need for dependency is difficult for elders. Manage the pressures of decision making. Trust must be balanced by the need for some degree of intervention.

III. We must learn to communicate well and with patience.

Good communication requires a willingness to hear what is actually said, taking notes, and asking questions. Realize there may be many things unsaid because of fear, confusion, or uncertainty.

IV. We need steadfast advocacy.

Developing mutual trust between patients and physicians provides the foundation for care that elders need along their journey of later life.

V. We must maintain an attitude of kindness no matter what.

Elders are dependent on their caregivers. Kindness and patience is necessary when dealing with the “seemingly endless cycle of chores.”

Coming up next: Stability and Slow Medicine: The First Station of Later Life