Social Security and the newly single

Social Security and the newly single

Life has a way of throwing us curveballs.

The unexpected death of a spouse—or a divorce—can certainly wreak havoc on your emotions. It can also throw a wrench in your finances.

If you are age 62 or older, here are some Social Security basics to bear in mind as you regain your financial footing or make contingency plans.

Survivor benefits. If you find yourself widowed after at least one year of marriage, then you are eligible to receive monthly survivor payments.

Did you also work outside the home? If so, you can choose the higher of the two benefits: yours personally; or as a surviving spouse.

Before deciding, confirm the amount for each one for three points in time: collecting now; waiting until age 70; or at your designated retirement age (as determined by Social Security). While you cannot receive both benefits at the same time, you can strategically claim the highest one now and then switch to the one that becomes higher later.

Spousal benefits. A divorce does not erase the contribution you made to the household. As a formerly married spouse, you are eligible for Social Security benefits based on the earnings of your breadwinning partner. As long as you were married for 10 years or more, you have earned spousal benefits.

Receiving spousal benefits does not affect what your ex will receive from Social Security. What’s more, your ex does not need to know, give permission, or sign any papers. All you need to provide is the marriage certificate, divorce papers, and your ex’s full name.

If you were also employed and are eligible for your own Social Security benefits, investigate which benefit will pay more: now; when you turn 70; or at your designated retirement age. Unlike survivor benefits, you cannot switch benefits at a later date. Decide when is the best time to apply, and choose the larger amount.

It’s important to make a fact-based decision. The difference in monthly payments, added up over many years, could mean there are thousands of dollars at stake. There are many more details than we can cover here, including information about benefits in same-sex marriages. Consider working with a certified financial planner who can run the various calculations for you and suggest the wisest strategy. There’s too much to lose to depend on Social Security staff for detailed guidance.

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BALANCING FEAR WITH KINDNESS

BALANCING FEAR WITH KINDNESSThere are many things to fear in our world today, the most recent being the outbreak of the COVID-19 coronavirus around the world.  But, recent events in my neighborhood completely unrelated to coronavirus reminded me how just easily our fears and biases can cause us to overlook concern for the welfare of others.

I live in a community that is known for kindness and a history of taking care on one another.  Unfortunately, a few criminal events rooted in domestic violence over the span of several months had our very close-knit neighborhood on edge (and the neighborhood Facebook page on fire).  Every “stranger” in the environment became a suspect with unusual sightings reported (and commented on) in great detail.

With this as background, it is no surprise that when doorbells rang unexpectedly at 1:30 in the morning, people responded with fear.  Most people admitted to not opening the door to a stranger in the middle of the night.  The few people who did open the door reported that a menacing-looking middle-aged man dressed all in black said he had lost his phone and asked to come in to use a phone.   He was turned away from multiple houses who reported a fear for the safety of their family.

As it turns out, the man ringing the doorbell was the mentally challenged father of a family who had just moved into the neighborhood.  He had left the house without his cell phone, had gotten lost, and he was himself panicked and afraid.  Gratefully, his daughter found him and was able to return him safely home – but not with the help of our usually kind and generous neighborhood.  Part of the reason people responded as they did was because this man did not “look like” the typical person in need.

I like to believe that had he been a young child or an obviously senile older adult that we would have been more responsive as a community. But, it WAS the middle of the night, and I have still instructed my teenage daughter to NEVER open the door in the middle of the night to a stranger no matter what the circumstance.  So, as a family, we have also discussed that we should have called the non-emergency number for our local sheriff’s department to request a welfare check on the stranger.

We immediately jumped to the fear-based conclusion that the stranger was up to no good when, actually, he was a fellow human in need.  We overlooked the fact that there are options available to safely balance the concern for our own welfare with the responsibility to extend kindness to a stranger.  It never occurred to us to request a welfare check in this kind of a situation, but I have been assured by several local law enforcement agencies that they would have viewed this as an appropriate use of services and would have been happy to come out to ensure the well-being of everyone in our neighborhood as well as the stranger in our midst.

So, whatever your position on the necessity to stock up on toilet paper and bottled water in the face of the current coronavirus pandemic, I hope we all remember to stock up on an extra supply of human kindness.  I have no idea what unexpected needs might present themselves in the coming days, but I plan to do what I can to help my friends, my neighbors and strangers as we navigate this uncharted territory together.  After all, I didn’t stock up on extra toilet paper, and now the store shelves are empty.  So, I hope that one of my neighbors will come to my rescue if we have a toilet paper emergency at my house.  Be safe and be kind!

Written by: Darra Wray

Darra Wray is a Care Consultant and Certified Senior Advisor with My Care Companions in Boise, Idaho, a company she founded to streamline and simplify the administrative side of care.  You can learn more about My Care Companions and the My Data Diary+ family information management software tool at www.mycarecompanions.com.

 

What a doctor wishes patients knew about the end

As a hospice and palliative medicine physician, my job is to help reduce suffering. At the end of life, that job becomes especially intense when time is short, when machines and data seem to be taking over, and so many intense emotions surround a body that is trying to die.

BJ Miller

BJ Miller

But here in that narrow trench, both providers and patients do have power to shape their experience together, especially if they take the time to have a few crucial conversations. In the spirit of palliation, here are a few things, as a physician, I wish I could share more often with patients and their caregivers.

You don’t need to be dying to receive palliative care

In hospitals, it is still common for palliative care clinicians to be pulled aside by a well-meaning though misinformed nurse or doctor who says, “This poor family is miserable, but they’re not ready for palliative care yet.” They imply that either the patient is not dying, or the patient does not realize that he or she is dying. But what this statement does is to conflate hospice or end-of-life care with palliative care. Palliative care is an approach, framed within the context of serious illness, where easing suffering is the goal. So, you just need to be sick and suffering to qualify for palliative care, not necessarily dying any time soon. Don’t be afraid to say you want it.

Don’t wait for your doctor to bring up hospice

What a doctor wishes patients knew about the end

Doctors tend to wait too long to acknowledge when death is close. And as research has made clear, the closer we feel to the patient, the more wildly we overestimate their prognosis.
The median length of stay in hospice care in the United States is 24 days.
As a rule, this is too short. So here’s an inside tip for patients and loved ones starting to wonder about hospice. In an effort to get primary physicians to think sooner about recommending hospice, researchers came up with the “surprise question.” As in: “Doctor, would you be surprised if your patient died within a year?” If the answer is no, then that doctor should start considering a referral to hospice. But there is nothing stopping you from asking the surprise question yourself. If you live with advancing chronic illness and are thinking about how you want your life to go, you might turn the table and ask: “Hey doc, would you be surprised if I died in the next year?” This is a good and bold way to open an honest dialogue with your doctor and get the sort of support you need.
The healthcare system is wired to extend physical life, without much regard to the psychological, spiritual, or financial costs. With advances in technology, we are able to prop up a body practically indefinitely. And it’s well known that doctors tend to presume you want aggressive care, even when care geared toward your comfort may be more in line with your wishes. Unless you say otherwise, the doctor’s presumption rules the day. This means that at some point you may need to say “no” to that next treatment. So be sure to look up now and again and check that the care you’re getting is the care that suits you.

It’s OK to laugh

Deaths from dementia have more than doubled in US, report says
In my book, “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” someone tells of their stepfather wearing a shirt that read, “I’m so old I can’t find my own nuts,” with a doodle of a squirrel on it. His dying wish was to make his daughter laugh, and it helped both of them immensely. To honor him, she buried him in that shirt, sealing his personality in death as it had been in life. Illness isolates people, not just physically. When we get sick, people around us start censoring themselves. The solemnity is supposed to be a form of kindness, perhaps, but it can feel more like yet another loss, almost a premature death. As patients and caregivers know, illness and its indignities offer plenty of rich material for humor. The joke is only on us if we don’t find some way to laugh back.

Those guardrails on the hospital bed go down

Dr. Marianne Matzo is a PhD nurse who researches sexuality at the end of life. She told me a story about a patient who died in his hospital bed while he and his wife were in the middle of oral sex. Dr. Matzo tells this story as a triumph rather than a tragedy: The couple had found a way to maintain intimacy until his last breath. We are still living when we are dying. When those guardrails go down, it is possible to cuddle or caress one another. Those moments are about feeling connected, sexually or otherwise, and finding ways to be in that body while you have it. They are about reminding yourself and each other that you are still here, both of you, able to love and be loved. This is how healing works, and it is very much possible to be healed — to be whole — even as your body falls apart.

To the caregivers: Don’t be afraid to leave the room

In their final days and hours, dying people are usually in and out of consciousness; even when awake, they are often delirious. That means your loved one might say or do things that are completely out of character. Behavior ranges from sweet to insufferable. I met an elderly woman at a conference once who nervously relayed the story of her husband hurling strange and vulgar accusations before losing consciousness for good. Now there was trauma on top of sorrow. I wish someone had told her earlier about the very normal condition of deathbed delirium.
I also wish that caregivers knew it was OK to leave their loved one’s bedside. How many times will they have spent hours gathered in the room, not eating or sleeping for days, barely blinking, not wanting to miss that last breath, only to have the person die just when they nod off or use the bathroom?
As any hospice worker can tell you, this is also a well-known phenomenon. It’s almost as if the presence of others — especially deeply loved ones — gets in the way of the dying person’s final step. That big moment may need to happen alone. What dying people seem to need at the very end is to know that the people they love are going to be OK; that life will go on and that you — the person they care for — will be able to take care of yourself. So, the kindest thing you can do is to demonstrate that care by leaving the room when you need to. Just be sure to give a kiss and know that it may have to be the last.
Source: CNN BJ Miller, M.D.
BJ Miller, M.D. is a hospice & palliative medicine physician who sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center. Miller’s career has been dedicated to moving healthcare towards a human centered approach and he advocates for this on a policy as well as personal level. He is the co- author of “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.”
The opinions expressed in this commentary are his own.

Emergency Planning: Is Your Loved One’s Long-Term Care Facility Prepared?

Each year, nature pummels the United States with various natural disasters. Americans find themselves contending with tornadoes, hurricanes, earthquakes, blizzards, wildfires, floods and heat waves that only seem to be increasing in frequency and intensity.

Individuals who are elderly, disabled or have special needs are particularly at risk during and after these events. Preparedness is crucial for those who are still living in the community and for those who reside in residential care communities like assisted living facilities, memory care units and nursing homes. When disaster strikes, long-term care facilities are responsible for ensuring the safety of all their residents and staff on site. In some cases, evacuation and transportation to another care facility out of harm’s way may be necessary.

Securing the safety of frail elders is a huge undertaking. Many long-term care residents are unable to walk on their own, connected to life-sustaining medical equipment or have severe cognitive impairments due to Alzheimer’s disease and other types of dementia. Every senior living facility should have a comprehensive disaster preparedness plan in place that establishes protocols for both evacuating and sheltering in place.

It’s beneficial for family members who have relatives in senior living to learn about how these communities handle potential emergencies. This will help families understand exactly what the plan of action is for their loved ones and how it may or may not mesh with their own emergency preparations and plans.

Questions to Ask a Long-Term Care Facility About Disaster Preparedness

The following list highlights crucial information on emergency planning and evacuation procedures provided by The National Consumer Voice for Quality Long-Term Care. You can print these questions out and use them to help guide your discussion about emergency procedures with the administrator at your loved one’s long-term care facility.

General Emergency Planning

  • What is the facility’s emergency plan for evacuation and for sheltering in place? (Plans will be different for hurricanes, tornadoes, etc.)
  • How are these plans coordinated with community resources, the city, county and state emergency management?

Emergency Training for Staff Members

  • What staff training procedures are in place for emergency evacuations?
  • Are evacuation drills practiced with both staff and residents?
  • Are there enough staff available to execute emergency plans during all shifts? For example, if a fire breaks out in the middle of the night, will the skeleton crew be able to handle the emergency?

Family Communication

  • How does the facility discuss emergency planning with their residents?
  • How and when will families be notified about a loved one’s status and whereabouts?
  • Is there a phone number for out-of-town family members to call for information before, during and after an emergency event?

On-site Emergency Resources

  • Does the facility have an emergency backup power system or generators? If so, how long can this back-up system provide power? What parts of the facility will have electricity?
  • Are extra medical supplies, equipment and medications (at least a 7-day supply for each resident) stored on-site?
  • How much emergency oxygen is available in portable cylinders?
  • Is the facility prepared with enough potable water and nonperishable food for residents and staff?
  • If the facility is multi-level and the elevators cannot be used, what is the procedure for evacuating physically impaired residents quickly and safely down the stairs?
  • Do residents have emergency supplies and first aid kits in their rooms? (Kits should contain clothing, toiletries, a flashlight, ID and other critical items.)

Evacuation Procedures

  • How will residents be evacuated? Are there contracts in place with transportation providers to relocate residents?
  • Where will residents be evacuated to? Are there contracts in place with other facilities to provide temporary housing for displaced residents?
  • Do family members have the right to evacuate their loved ones on their own if they choose? How would this decision affect a senior’s residency in the facility and associated costs?
  • How are elders who are on life-support or receiving hospice care transported?
  • If the building must be evacuated quickly, what procedures are in place to ensure that no residents are misplaced or left behind?
  • How will residents be identified during and after an evacuation?
  • If the facility is evacuated, how are residents’ charts, medical information, medications and other supplies transported and when?
  • Can family members meet residents at a designated location? Can they assist loved ones at the facility to prepare for evacuation?
  • Will a trained employee ride with residents on each vehicle to oversee their care as needed?

Source: AgingCare by Marlo Solitto

The End-of-Life Doula Movement

The End-of-Life Doula MovementA doula shares her role in bringing comfort and empowerment to dying patients.

In ancient Greece, doulas were servants who supported women through childbirth. The reemergence of doula work began in earnest during the 1960s, this time featuring trained professionals providing emotional, informational, and physical support. The essence of being “of service” remains.

Doulas establish relationships with clients, gaining trust and developing rapport, clarifying the goals, fears, and wishes of each expectant family. Then, during labor, a birthing doula provides continuous support—wiping a brow, holding a hand, fetching ice water, rubbing an achy back, suggesting positions and breathing techniques, whispering encouragements, and ensuring all invited are operating within their preferred roles. As a laboring woman weathers the ups and downs, the doula remains steady and calm, believing in the woman and in the process.

More recently, doulas have begun offering support to people at the end of life as well. Dying and death offer many striking similarities to birthing. There’s unpredictability. There’s a unique unfolding of events. Time fades away, as do the usual distractions of daily life. As doulas, we tune in. We listen more deeply. We feel compelled to take each moment as it comes, knowing we cannot make assumptions. Clients face intensity, doubt, and suffering, which takes many forms, including spiritual, emotional, physical, intellectual, and psychological. There’s difficulty. There are heightened feelings and reactions. Dynamics shift and sway, threatening our sense of foundation—the anchor to our past, present, and future.

Both birthing and dying become a sort of liminal space, thresholds to mystery. Doulas honor them as such. They are rites of passage that have three distinct features. As people enter into the rite, the initial experience is one of severance. We exit the usual pace of our schedules. We separate from our responsibilities. We put life on hold.

In early labor, women generally return to or remain at home (in their comfort zone), giving full attention to the beckoning task at hand. They shift between working through intermittent contractions and preparing for their journeys into motherhood (gathering supports, nourishing themselves, arranging and organizing).

In early dying, we often notice changes in a person’s breathing, communication, and physical activity. People spend more time sleeping, less time socializing, and occasionally appear to be in a separate realm. In the case of both birthing and dying, consciousness and presence seem to waver between complete embodiment of awareness and what seems to be a level of dissociation with the reality those surrounding the person are experiencing.

Gradually, people enter the transition period of the rite. For birthing women, this could be considered the time between laboring and delivering the baby, ie, pushing. Contractions now bring different sensations and the body propels the process onward. Hormones shift and surge. The end goal is within sight. Women may experience exhaustion, exhilaration, fear, and excitement.

In the case of death, a person enters into active dying, the time of deep rest. Sometimes this is a quiet, peaceful phase. Sometimes there’s persistent pain and relentless agitation. Loved ones and care teams attempt to meet the needs of the dying person and lessen suffering as much as possible. It can be a time of great worry. Support people ask: How long will this go on? Am I ready for it to end?

Birth and death end relatively abruptly due to the incomparably momentous nature of both. For birth, it is the emergence of new life. For death, it is the end of a life. Reintegration is the final act of the rites of passage. A woman is reincorporated as “mother” into her community. Anything beyond death remains best understood by belief systems and mortal imaginings. We are without certainty. Survivors of the deceased reemerge as mourners, however.

How Might Doulas Serve? 
The main task of a doula is to offer emotional support. In every word, touch, approach, and method used, we bring careful attention to the inner well-being of our clients. We believe in people. We honor life and the mysterious enigma of death. Our aim is to listen deeply and provide personalized, nonjudgmental care to promote our clients’ growth and sense of agency.

Doulas have a number of compassionate offerings available to clients, although personalization is always key. We align with the goals, wishes, and needs of our clients and we respect their choices. Throughout the University of Vermont Larner College of Medicine’s End-of-Life (EOL) Doula Professional Certificate Program, we illuminate ways of being a doula (the heart of the work) and ways of doing doula work (techniques and approaches), including the following:

• discovering a client’s wishes;
• working through a client’s anxieties;
• honoring and holding sacred space;
• leading guided imagery, visualizations, and breathing exercises;
• promoting informed consent;
• assisting with legacy and completion work, as well as advance directives;
• conducting life review sessions;
• providing resource referrals;
• coordinating care; and
• vigil planning and sitting.

Doulas support both the dying person and their natural network, knowing that by attending to the needs of loved ones or incomplete life tasks, we enable our clients with more opportunities to consider deeper meaning and connection. We expect that different personalities will present at varying points along the spectrum of disbelief, anger, sadness, and acceptance. The components of grief are not good or bad, right or wrong—they just are. And doulas meet people where they are as they vacillate, remaining neutral and caring.

Like a birth doula, an EOL doula can help prepare clients and their loved ones for what is to come. In the case of pregnancy and a terminal diagnosis, there’s time to plan. EOL doulas can help families develop wishes for this often overwhelming period. Just as a birth doula inquires about a client’s postpartum plans, an EOL doula can ask about a postpassage plan: What expectations do you have? What might help you feel most supported? What do you have in place and what can we consider arranging?

These conversations require grace. Doulas need to recognize the appropriate moments to broach these topics—or, if clients and their loved ones are not ready, to plant seeds for future talks. Minimizing surprises helps enhance people’s sense of confidence as they enter into the unknown. We can alert people to what commonly occurs, nurturing foresight and readiness.

This focus on planning and plan implementation is integral in doula work. It’s how we ensure support is unique to each client. It’s how we respect each client’s dignity. We assist families with preparing for loss. Additionally, doulas help arrange clients’ calendars to honor their priorities for time spent while weighing energy levels. We ask questions such as the following:

• Which appointments and visits are most important?

• Can we create a meal train so that friends, neighbors, and family members can deliver food and necessities?

• Are there any additional services available that we might consider suggesting?

• Would our clients like to finalize expressed wishes for care (before, during, and after dying)?

• Can we work through some options for visualizations, keeping clients’ “special places” in mind, as we develop a personalized script to read?

• Would our clients like to complete a life review?

• Can we work on legacy gifts together?

• Can we plan for the vigil time (ie, how the clients would like their spaces to look, smell, and sound as well as who they would like to have present)?

• Are there readings or rituals we can explore and include?

Doulas carefully consider how we fit into the care team. Is a social worker already drafting funeral plans with the family? Is the hospice chaplain or priest from the client’s church meeting regularly to discuss existential questions? Would an aunt love to organize the creation of a giant photo collage? Is there a brother who feels compelled to manage the appointment and visitor schedule?

Doulas don’t duplicate. We provide complementary care, honoring the roles of all involved. No two clients will require the same level and type of doula support.

Why Does Doula Support Work?
Studies repeatedly demonstrate positive outcomes associated with birth doula care. According to researchers, “The presence of a trained doula providing continuous support to laboring women and their partners appears to have a significant effect on rates of instrumental vaginal deliveries and cesarean sections,”1

Furthermore, say the authors of a study comparing doula care with standard care, “Continuous support during labor may improve outcomes for women and infants, including increased spontaneous vaginal birth, shorter duration of labor, and decreased caesarean birth, instrumental vaginal birth, use of any analgesia, use of regional analgesia, low five-minute Apgar score, and negative feelings about childbirth experiences. We found no evidence of harms of continuous labor support.”

They add that “Continuous support from a person who is present solely to provide support, is not a member of the woman’s own network, is experienced in providing labor support, and has at least a modest amount of training (such as a doula), appears beneficial.”2

Why might continuous support from a doula be advantageous? When reviewing similar benefits of birth support in their research, Gruber and colleagues speculate: “Communication with and encouragement from a doula throughout the pregnancy may have increased the mother’s self-efficacy regarding her ability to impact her own pregnancy outcomes.3

We imbue our commitment to positive regard into our approach to care—every touch, gesture, and conversation. We do not dip into internal reserves to replenish a client’s sense of emptiness. Instead, a doula believes in the inherent wisdom and strength of each human being and their limitless potential to evolve. We recognize the tendency toward self-doubt during times of intensity and firmly believe in people’s capacity to find their footing and next steps, even—especially—when they feel lost or overwhelmed.

In the throes of liminal space, doulas remain the calm in the chaos. We encourage a thoughtful slowing down when many feel rushed to get past a hurdle. We nurture contemplation as clients consider tumultuous periods, questions, and crossroads. We turn toward and lean into suffering with our abiding faith in people and know we are not meant to “save” or “rescue” people from their journeys.

Might there be comparable opportunities and equally beneficial reasons to include doula support at end-of-life in addition to birth? In a study investigating the effectiveness of lay health workers, researchers from Stanford University Medical Center found that “Patients with advanced cancer who spoke with a trained nonclinical worker about personal goals for care were more likely to talk with doctors about their preferences, report higher satisfaction with their care, and incur lower health costs in their final month of life.”4

In these cases of research on birth and death, a nonmedical emotional support person provided the listening ear required to forge connection, cultivate honesty, and improve outcomes. Satisfaction went up; costs went down.

Barriers to Providing Doula Care
There are a few marked obstacles EOL doulas face as they enter the field, the most pressing being role recognition and financial structures. Currently, there’s no credentialing body overseeing doula work. Doulas are not licensed professionals. This remains true of birth doulas, who have been completing training protocols since the early 1990s with the inception of DONA International, the oldest and largest doula training organization.

There are myriad options for becoming a doula (birth and EOL). Most programs are rigorous and comprehensive although they range in terms of the breadth of topics covered, length of studies, and required assignments.

In recognition of this burgeoning field, the National Hospice and Palliative Care Organization (NHPCO) has established an End-of-Life Doula Advisory Council that “provides information and resources to NHPCO, its members, affiliated organizations, and the general public to promote awareness and understanding of the end-of-life doula role. It also informs those constituents of the benefits of doulas for dying people and their families, and guides them on incorporating doulas into existing services and how to access outside doula providers.”5

Doulas and medical teams need to work collaboratively, respecting our common goal of providing superb, holistic care. Increasingly, hospice and palliative care programs are including doulas on their teams, although mainly in a volunteer capacity thus far.

How do doulas establish this new role? Doulas often balance this effort in the workspace and in the public sphere. When serving clients, we are introducing our scope of offerings. We are indirectly educating as we allay the fears of care providers who wonder about our place in the realm: Will doulas invade? Will we push people to the side? Will we take over? Will we make/question medical decisions? What do we do? What is our agenda?

Doulas have numerous jobs, activities, exercises, and techniques to administer, but we are also there as a companion, witness, and listener. This requires graceful flexibility. Meeting people where they are means not always adhering to a premeditated itinerary. We need to be versatile and adaptable while remaining within our scope.

As team members witness doula work, they begin to value our contributions and realize what we offer is augmenting what’s already available. We add harmony. We complement care. We acknowledge the varied personalities and gifts of those present and involved.

Doulas do not offend. We are anodyne in our neutrality. Our presence is innocuous and does not arouse anxiety. We offer support without drawing attention to ourselves. This is not ego work; this is heart work. While supporting clients, we become caregiving chameleons. There’s shape-shifting involved. We read the room. In accordance with the needs of the moment, we step forward or back.

Financial structures also present issues for doulas. Charging fees for this type of work has been and will remain a challenge. Doula work primarily has been a private pay transaction or volunteer work. Insurance programs offer very little in the way of coverage. In a few states, birth doulas have worked to pass legislation to require Medicaid coverage, but the low reimbursement rate has prevented most practicing doulas from completing and filing the necessary paperwork.

There is some potential for more inclusionary coverage as hospitals shift away from fee-for-service models to value-based reimbursement.6 Also, choices for care and long term care programs offer options for fund allocations, which could perhaps include doula support.

Core Care Components
What remains at the core of doula efforts, and enhancing the experience of death at large, is our fellow humans. How do we want to be treated? How do we want to be honored? What would we want for ourselves? What can we make available and possible?

Options are empowering. There is work to be done. There is a place for doulas by the bedside. As I explained in my book, Cultivating the Doula Heart, “We are sensitive and affirming, soothing in our care. We are not dismissive. We do not minimize a person’s interpretation of what they are undergoing. Through all the ways we doula, we promote empowerment and healing born of processing and bravely facing that which threatens one’s sense of intactness. This healing—not in the sense of a cure, but in the sense of an unbroken soul—generates peace in the face of chaos.”7

— Francesca Arnoldy is the author of Cultivating the Doula Heart: Essentials of Compassionate Care.

Source: Todays’ Geriatric Medicine

Why Does My Elderly Loved One Sleep All Day?

As people age, they tend to sleep more lightly than when they were younger and often wake up during the night from achy joints or the need to use the restroom. Many seniors compensate for this lost sleep by catching a restorative nap during the day. That’s normal.

Daytime sleeping only becomes a problem when an elder spends most of their time dozing in bed or their favorite chair instead of engaging in life. If you want your elder to stay awake more during the day and sleep better at night, you will need to discover the underlying reason(s) why they are napping excessively. In some cases, you may need a doctor’s help to narrow down the cause and recommend treatments. Knowing what to look for can give you a jumpstart on improving a loved one’s sleep schedule.

Common Reasons Why Seniors Sleep So Much

Boredom in the Elderly

As people age, they may suffer from chronic health conditions and age-related changes that affect their ability to do the things they enjoy. When options for outings, activities and entertainment are limited, it can deal a serious blow to an elder’s quality of life. They aren’t working anymore, they may struggle with reading or puzzles because of poor eyesight, and eventually they get tired of watching TV. In these cases, elders may not be clinically depressed or even all that tired. Instead, their fatigue stems from the fact that they are incredibly bored. With no schedule to keep and not much going on in their lives, they slide into the habit of napping throughout most of the day.

Medication Side Effects and Interactions

The average senior in the U.S. takes several different medications each day. All medications have side effects, so it should come as no surprise that taking multiple drugs can produce interactions that magnify these effects. In addition, older individuals metabolize medications differently than their younger counterparts, meaning that they are even more susceptible to adverse effects like drowsiness and dizziness.

Over-the-counter and prescription medications for conditions like anxiety, depression, high blood pressure, insomnia, chronic pain, Parkinson’s disease, nausea and allergies can all cause excessive sleepiness. Atypical (second generation) antipsychotics are notoriously hard on most elderly patients as well. If your loved one is on one of these medications, discuss the side effects and alternative medication options with their physician. You may even find that there are some medications in their regimen that could be reduced to smaller dosages or discontinued completely. Sometimes simply altering the timing of a senior’s medications can improve their alertness during the day.

Depression and Sleep

Many elders become sad and lose interest in life, but depression is in no way a normal part of aging. Most people are familiar with the basic signs of depression, but for older individuals, the red flags can be a little different. Sleep issues and fatigue can often indicate that a loved one is suffering from a mental health disorder. If you notice these symptoms in a loved one, do your best to talk with them about how they are feeling and make an appointment with their physician.

If a loved one is already on antidepressant medication or begins antidepressant therapy, keep in mind that finding the correct medication usually takes some trial and error. Again, sleepiness is a common side effect of these prescription drugs, so be sure to communicate with the doctor about any adverse effects to ensure your loved one finds the right medication.

Dementia and Difficulty Sleeping

Many seniors with dementia experience a wide array of sleep problems, especially in the later stages of the disease. As the brain deteriorates, issues arise with circadian rhythms and temporal awareness, making it difficult for dementia patients to sleep through the night and keep a normal schedule. In some cases, sleeping during the day is the only way that patients can make up for the shuteye they lose at night.

The resulting odd schedules can be frustrating for caregivers, but sleep deprivation can also exacerbate the symptoms of dementia, like sundowning. While there aren’t many foolproof methods for helping a loved one sleep through the night and stay awake during the day, sleeping pills typically aren’t advisable. The best methods for encouraging good sleep habits include using engaging activities during the daytime, scheduling brief naps as needed during the day, and sticking to a set sleep schedule as best as you can. A solid routine can be very helpful for helping a loved one stay oriented and managing behaviors and symptoms of dementia.

Excessive Sleep in the Elderly

In some instances, excessive sleeping in individuals with one or more serious medical conditions can indicate that their health has taken a downturn. This may not necessarily mean that death is near, but it certainly is cause for contacting the doctor to see if a specific treatment should be altered, added or removed. If a loved one is spending a great deal of time asleep, it is important to devise ways to ensure they still get the nutrition, personal care and medications they need. Otherwise, complications like dehydration, malnutrition and pressure ulcers can arise. In the most severe cases, the doctor may recommend an assessment for a different level of care, such as skilled nursing or hospice.

The Importance of Staying Active

In addition to being vigilant about an aging loved one’s medications and health, it is also important to encourage them to participate in life as fully as they can. Providing plenty of opportunities for social interaction, mental stimulation and physical activity is key to a high quality of life. But, for many family caregivers, seeing to all these needs in addition to their hands-on responsibilities and personal schedules is nearly impossible. Seeking out respite care that doubles as a source of stimulation for a loved one is a common solution for many families.

In-home care and adult day care are two such options. Both professional in-home caregivers and adult day care staff can help set and maintain daily routines, provide engaging activities and outings, and broaden a senior’s social circle. Assisted living and nursing home care can also offer these benefits in a residential setting. When elders spend more time engaged in life during the day, it reduces boredom, minimizes depressive symptoms and typically leads to better quality sleep at night.

Your goal is to determine why your loved one is so fatigued and how you can boost their spirits and energy level. The problems and solutions above may not apply to every senior, so don’t try to solve the problem alone. Communicate with your loved one as best you can and ask for help from physicians, friends and other caregivers. By doing so, you’ll get the support and reassurance you need, and you may find a workable solution.

Source: AgingCare by Carol Bradley Bursack

Why Do People Die from Alzheimer’s Disease?

Alzheimer’s disease (AD) is a very complex condition that is always fatal. It manifests initially with marked memory failure and lapses in judgement, but as it progresses, it also has a devastating effect on higher brain functions that many people take for granted. In the later stages of the disease, balance and coordination as well as autonomic functions like heart rate, breathing, digestion and sleep cycles are severely affected.

In the final stage, patients will be unable to perform the tasks that keep their bodies alive and functioning. Neurological damage and muscle weakness cause patients to lose the ability to coordinate even simple movements. Eventually, they are unable to walk, communicate, maintain control of their bladder and bowels, feed themselves, chew, and swallow food without significant assistance and careful supervision. The later stages can be both emotionally and physically taxing not only for patients themselves, but also for their family caregivers. At this point, if the subject has not already been discussed, family members may wish to consider hospice care for their loved one.

Read: Hospice Care for Advanced Dementia: When Is It Time?

A lack of self-awareness and self-care, prolonged confinement to a bed, feeding failure, inability to receive proper nutrition and dehydration are all factors in the development of other life-threatening health conditions. While brain damage associated with AD is the driving force behind the patient’s decline and incapacitation, these secondary illnesses and conditions are ultimately responsible for causing the patient’s decline and death. Complications from Alzheimer’s disease are commonly cited as such on death certificates. Because of this, deaths with a primary cause of Alzheimer’s disease and other forms of dementia are seriously underreported. This is especially true since dementia can go unnoticed as it progresses slowly over the course of many years. Furthermore, a significant number of patients never receive an official neurological diagnosis while alive or after passing.

The most prevalent cause of death in dementia patients is a secondary infection, commonly pneumonia. Bacterial infections could be easily remedied with a course of antibiotics in healthy individuals. However, advanced AD patients are usually too frail and immunocompromised to fight bacterial infections, even with the assistance of these drugs. Infections often return after treatment, and many patients or their family members make the decision to forgo aggressive treatment options and/or resuscitation efforts that may cause pain and discomfort for only a short-term benefit.

The following conditions can cause or contribute to multiple organ failure and death in seniors with severe Alzheimer’s disease:

  • Heart attack
  • Dehydration and malnutrition, whether due to a voluntary stopping of eating and drinking (VSED) health care directive or due to the natural dying process
  • Injuries and fractures caused by falls
  • Thromboembolisms
  • Pressure ulcers (bedsores)
  • Stroke
  • Kidney failure
  • Lung infections like aspiration pneumonia caused by dysphagia and inhalation of food particles
  • Sepsis (if infections like urinary tract infections and pneumonia spread)

Because these secondary conditions and their treatments can cause a great deal of anxiety and discomfort, many patients and their family caregivers prioritize quality of life over quantity and opt for comfort care in lieu of extensive life-sustaining measures. This is a difficult and highly personal choice for families, but it should be taken into consideration as early as possible before Alzheimer’s disease progresses to the point where patients can no longer make informed decisions about their own end-of-life care.

Source: AgingCare – Dr. Maurizio Grimaldi

How to Console a Senior Who Is Afraid of Dying

“I’m dying.” These are words that most of us dread hearing from the people we love. However, death is an inescapable part of life. If it hasn’t happened already, chances are you’ll be called upon to help a parent, spouse, friend or other loved one through the valley at some point. Yes, it can be a terrifying prospect, but it is also an honor. This is a valuable opportunity to help your loved one make the most of their remaining time on earth, to assist them in taking the next step without regret, and to create priceless memories for you to cherish once they’re gone.

There are some hurdles throughout this process, though. The end of life often stirs up many powerful emotions, among the most poignant being anxiety. Because death is different for everyone and we know so little about what happens after a person passes, patients and family alike are often overwhelmed by fear of the unknown. Below are the seven most common fears associated with dying and how caregivers can help console their loved ones at the end of life.

Fear of the Dying Process

Apprehension about the actual dying process typically stems from a fear of pain and discomfort. People at the end of life may wonder, “How will I get through this?”

Make sure your loved one knows that they will experience little or no pain unless they choose to. Hospice care providers specialize in providing pain and symptom management for terminal patients. Staff members are trained to interpret what patients need by reading verbal and nonverbal cues, and they will discuss the benefits and drawbacks of each option with patients and their families.

Fear of Losing Control

Some individuals who are dying are able to continue leading a relatively active and normal life until the very end. But those who are very ill typically must rely on family members and caregivers to help them with activities of daily living (ADLs) in their remaining months, weeks or days. Many patients are uncomfortable with the thought of depending on others for supervision and assistance, and this is normal.

To help dispel this fear, encourage your loved one to stick to their usual routine for as long as possible. A life-threatening or terminal diagnosis does not change who the person fundamentally is. When it becomes clear that they will need to accept care from others, arrange for them to meet with and get to know their caregivers in advance, especially if medical professionals are involved. Becoming familiar with nurses and aides before their full services are required can alleviate discomfort and fear.

Furthermore, if you haven’t already discussed end-of-life wishes with your loved one, time is of the essence. Most people execute a living will, do-not-resuscitate order (DNR), physician orders for life-sustaining treatment (POLST) form, or other legal document to spell out the type of care they DO and DO NOT wish to receive. Discussing these matters and putting them into writing while your loved one is still competent to make decisions will help them feel more confident that their wishes will be respected even if they are unable to convey them.

Fear of Leaving Loved Ones Behind

Some people at the end of life wonder less about their own predicament and more about how their loved ones are coping and how they will handle the loss. They may wonder, “What is going to happen to my family? How will they manage after I’m gone?”

Only those closest to the dying person can alleviate this fear. Be willing to frankly discuss with your loved one what will happen to everyone once they die, and do everything you can to reassure them that you will all be okay. If children or dependent adults are involved, help to formulate a detailed plan for their future care.

Fear of Others’ Reactions

The focus during a loved one’s end-of-life experience is to keep them as comfortable and relaxed as possible. This is not an easy process to go through or to witness, and emotions usually run high. It’s natural to feel fear and sadness, but after the initial shock has worn off, try to behave normally. Relish this time together instead of dwelling on the inevitable loss. It is okay to express your true emotions but remember that this experience is not about you. Be respectful of your loved one’s need for peace and support.

Make sure that all caregivers and family members (yourself included!) are getting enough sleep, healthy meals and emotional support. The effects of going without these necessities is evident in both appearance and demeanor and may cause your loved one additional worry. Lastly, ensure that all caregivers and visitors are told in advance what to expect. This will help to avoid reactions of shock or fear that can be unsettling for the dying person.

Fear of Isolation

Fear of any kind typically causes us to long for the company and reassurance of those we love most. The possibility of facing the end of life alone would cause anyone considerable anxiety, and this is a common concern for many seniors. They wonder if their friends and family will come to visit them and if they will continue being attentive and supportive until the very end.

Quite simply, make sure that regular visits with close friends, family members and volunteers are scheduled. Ensure the senior feels loved and important, but avoid exhausting them with nonstop visitors. If you don’t live near your loved one or cannot commit to frequent visits for other reasons, consider taking advantage of hospice care providers, volunteer organizations or church ministries. End-of-life care from these groups may include regular visits from nurses, aides, clergy, musicians or volunteers that can dramatically increase a patient’s quality of life.

Fear of the Unknown

Will there be life after death? What can I expect? Everyone has dwelt upon these questions at one time or another. Even the greatest self-professed skeptic wonders what will happen after they take their last breaths. Addressing this concern has physical, emotional and spiritual implications. Even if your loved one is not religious, consider asking a priest, rabbi, minister, pastor, etc. to come speak with them. Outside resources such as these can offer a gift of peace, regardless of past doubts and skepticism.

Fear That Life Has Been Meaningless

People who are leaving this world need to hear that they are valued, that their accomplishments had a positive impact on the world and that they won’t be forgotten. Don’t miss the chance to tell your loved one how much they mean to you and remind them of all the good they brought to your life. Reassure them that their life had purpose and meaning, and encourage others to do the same, either in person or through cards and letters. Also, take time to go through photo albums, share memories and absorb life lessons from your loved one.

Source: AgingCare – Donna Authers