[N]o one can predict the moment of death. But physicians and nurses involved in end-of-life care know that certain symptoms are usually associated with the body’s shutting down. These signs of approaching death are specific to the natural dying process (apart from the effects of particular illnesses the person may have).
Not all dying symptoms show up in every person, but most people experience some combination of the following in the final days or hours:
1. Loss of appetite
Energy needs decline. The person may begin to resist or refuse meals and liquids, or accept only small amounts of bland foods (such as hot cereals). Meat, which is hard to digest, may be refused first. Even favorite foods hold little appeal.
Near the very end of life, the dying person may be physically unable to swallow.
How to respond: Don’t force-feed; follow the person’s cues even though you may be distressed by a loss of interest in eating. Periodically offer ice chips, a popsicle, or sips of water. Use a moistened warm cloth around the mouth and apply balm to the lips to keep them moist and comfortable.
2. Excessive fatigue and sleep
The person may begin to sleep the majority of the day and night as metabolism slows and the decline in food and water intake contribute to dehydration. He or she becomes difficult to rouse from sleep. The fatigue is so pronounced that awareness of immediate surroundings begins to drift.
How to respond: Permit sleep. Avoid jostling the person awake. Assume that everything you say can be heard, as the sense of hearing is thought to persist, even when the person is unconscious, in a coma, or otherwise not responsive.
3. Increased physical weakness
A decline in food intake and lack of energy leads to less energy, even for activities like lifting one’s head or shifting in bed. The person may even have difficulty sipping from a straw.
How to respond: Focus on keeping the person comfortable.
4. Mental confusion or disorientation
Organs begin to fail, including the brain. Higher-order consciousness tends to change. “Few conditions leave people hyperaware when they’re dying,” says palliative-care physician Ira Byock, author of Dying Well.
The person may not be aware of where he or she is or who else is in the room, may speak or reply less often, may respond to people who can’t be seen in the room by others (see Passing Away: What to Expect When Witnessing a Loved One’s Death), may seem to say nonsensical things, may be confused about time, or may act restless and pick at bed linens.
How to respond: Remain calm and reassuring. Speak to the person softly, and identify yourself when you approach.
5. Labored breathing
Breath intakes and exhales become raggedy, irregular, and labored. A distinctive pattern called Cheyne-Stokes respiration might be heard: a loud, deep inhalation is followed by a pause of not breathing (apnea) for between five seconds to as long as a full minute, before a loud, deep breath resumes and again slowly peters out.
Sometimes excessive secretions create loud, gurling inhalations and exhalations that some people call a “death rattle.”
How to respond: The stopped breathing or loud rattle can be alarming to listeners, but the dying person is unaware of this changed breathing; focus on overall comfort. Positions that may help: the head slightly elevated with a pillow, sitting up well-supported, or the head or lying body tilted to the side slightly. Moisten the mouth with a wet cloth and moisturize with lip balm or petroleum jelly.
If there’s a lot of phlegm, allow it to drain naturally from the mouth, since suctioning it out can increase its quantity. A vaporizer in the room might help. Some people are given oxygen for comfort. Be a calm, physical presence, stroking the arm or speaking softly.
[A]t 87, Maxine Stanich cared more about improving the quality of her life than prolonging it.
She suffered from a long list of health problems, including heart failure and chronic lung disease that could leave her gasping for breath.
When her time came, she wanted to die a natural death, Stanich told her daughter, and signed a “do not resuscitate” directive, or DNR, ordering doctors not to revive her should her heart stop.
Yet a trip to a San Francisco emergency room for shortness of breath in 2008 led Stanich to get a defibrillator implanted in her chest — a medical device to keep her alive by delivering a powerful shock. At the time, Stanich didn’t fully grasp what she had agreed to, even though she signed a document granting permission for the procedure, said her daughter, Susan Giaquinto.
That clarity came only during a subsequent visit to a different hospital, when a surprised ER doctor saw a defibrillator protruding from the DNR patient’s thin chest. To Stanich’s horror, the ER doctor explained that the device would not allow her to slip away painlessly and that the jolt would be “so strong that it will knock her across the room,” said Giaquinto, who accompanied her mother on both hospital trips.
Surgery like this has become all too common among those near the end of life, experts say. Nearly 1 in 3 Medicare patients undergo an operation in the year before they die, even though the evidence shows that many are more likely to be harmed than to benefit from it.
The practice is driven by financial incentives that reward doctors for doing procedures as well as a medical culture in which patients and doctors are reluctant to talk about how surgical interventions should be prescribed more judiciously, said Rita Redberg, a cardiologist who treated Stanich when she sought care at the second hospital.
“We have a culture that believes in very aggressive care,” said Redberg, who at the University of California-San Francisco specializes in heart disease in women. “We are often not considering the chance of benefit and chance of harm and how that changes when you get older. We also fail to have conversations about what patients value most.”
While surgery is typically lifesaving for younger people, operating on frail, older patients rarely helps them live longer or returns the quality of life they once enjoyed, according to a 2016 paper in Annals of Surgery.
The cost of these surgeries — typically paid for by Medicare, the government health insurance program for people older than 65 — involve more than money, said Amber Barnato, a professor at the Dartmouth Institute for Health Policy and Clinical Practice. Older patients who undergo surgery within a year of death spent 50% more time in the hospital than others and nearly twice as many days in intensive care.
And while some robust octogenarians have many years ahead of them, studies show that surgery is also common among those who are far more frail.
Eighteen percent of Medicare patients have surgery in their final month of life and 8% in their final week, according to a 2011 study in The Lancet.
Death is an ultimate cosmic constant. The stages of death herald the conclusion of all vitality in all mortals. Let us delve deeper into understanding the dying process.
by Ishani Chatterjee Shukla
“The pale, the cold, and the moony smile
Which the meteor beam of a starless night
Sheds on a lonely and sea-girt isle,
Ere the dawning of morn’s undoubted light,
Is the flame of life so fickle and wan
That flits round our steps till their strength is gone.”
[T]hat was Percy Bysshe Shelley on the approach of death. Death has been an object of fantasy and obsession for many a poet and philosopher, whether classic or contemporary. However, the physiological stages that precede and succeed this dire reality are far from the musings of the poetically inclined. The final phases leading up to death can be categorized as emotional and physical.
Emotional Stages During the Time Leading Up to Death
The emotional stages of dying are experienced by a person when he knows he is dying and is also shared by the people who are very close to the dying person. These emotional stages are also known as stages of grief and include:-
Denial: The dying individual has difficulty in believing that he is so close to death; he refuses to accept that anything could be wrong with him.
Resentment: Once he is convinced of his fate, he feels it is unfair and his frustration finds vent in anger and resentment.
Negotiation: The third stage is where desperation sets in. He tries to bargain with fate, people close to him, his physician, family, friends, etc. to find a cure, whether medical or spiritual, to prolong his life.
Depression: When he realizes that he cannot cheat death, despondency sets in and he begins feeling hopeless. The person suffers from loss of appetite and insomnia.
Resignation or Acceptance: This is the final stage. The person in question gives up all his struggle and accepts his fate and the finality of death.
The signs of approaching death set in about two to four months before death. The person becomes withdrawn and may feel detached from their surroundings. This is a time for introspection for most people and they recall their past to re-evaluate their lives. However, sometimes people suffering terminal illnesses tend to become hyperactive and indulge in their passions and desires. They put the remaining days of their lives in a fast forward mode so as to partake in those activities which they have always wanted to pursue in their lives but never got an opportunity, just like Jack Nicholson and Morgan Freeman did in The Bucket List.
Signs of death can be classified as close and distant. Close signs are the physical stages that start setting in from a couple of weeks prior to the exact time of death.
Physical Stages of Death
The physical stages are experienced solely by the person who is dying. These can be categorized into the stages at the exact moment of death and the stages that occur some moments after death.
Stages at the Exact Moment:-
The heart stops beating
The muscles loosen
The skin tightens and a grayish pallor sets in
The body loses heat and its temperature lowers to about 1.5°F (every hour; the liver retains heat for the longest time after death, based on which the time of death may be established (provided the body is found during that period)
The bowels and bladder become devoid of all contents
Stages After About Half-an-Hour:-
Terminal appendages such as finger and toe nails, lips, etc., become pale as blood circulation stops
The skin, hands and feet turn bluish due to lack of oxygen and blood circulation
All the blood of the body gathers at the lowest parts, making them appear darkish purple
The eyes begin sinking into the skull
The body starts stiffening, due to a phenomenon known as rigor mortis, after around 3-5 hours of death
Other than deaths by accident, most of the time, the stages start well in advance for people who are about to die, be it from illness or old age.
Distant Signs of Death
Distant signs start occurring between three to six months prior to death. These signs may be experienced even when the subject is not suffering any health issues. These signs may include:-
Having hiccups while urinating or excreting;
Inability to hear the buzzing sound of inner ears when ears are blocked;
Drop in normal body temperature;
Inability to taste or smell for no apparent reason;
Changed likes and dislikes;
Repeated dreams symbolizing increasing distance and misdirection.
About a six to eight weeks before death, the person may spend more time sleeping and lazing around. Diminished movement is witnessed, along with signs of disorientation. The person may either have hallucinations, feel paranoid, or he may be washed with a sense of peace and security. As the final stages close in, the person may feel a sudden, short-lived wave of euphoria and energy, the same way as a lamp flickers the brightest before going out. Breathing becomes irregular and then stops altogether.
The family and friends of the deceased person suffer a trauma of loss for a long time, sometimes for throughout their entire lives. Dealing with the death of a loved one, especially, coping with the death of a parent, spouse or sibling can be emotionally taxing and should be dealt with patience and sensitivity. In severe cases, grief counseling and sessions on death management can help ease the pain of dealing with the loss of a dear one.
Death is the greatest truth, even greater than life itself! There is no assurance of the fetus getting born even after being conceived in the womb, but there is the stoic assurance of encountering death even as the faintest pulse of life starts throbbing. It is not the end but a transition to the afterlife, the beginning of a new journey towards further education and enlightenment of the soul; and we all know that the soul is immortal. Death only marks the end of one aspect of our journey as the soul transcends to a higher realm of consciousness.
[T]hough it may seem bizarre today, having your heart buried apart from the rest of your body wasn’t uncommon for European aristocracy of the Middle Ages and beyond. The practice arose in part during the Crusades, when high-ranking warriors had a tendency to die in “heathen” places that weren’t seen as desirable burial locations. But transporting a whole body back to Europe made things pretty stinky, so corpses were stripped of flesh and ferried back to Europe as skeletons, with the inner organs (including the heart) removed and buried where the Crusaders had died. By the 12th century, members of the English and French aristocracy also frequently had their hearts buried separately from the rest of them.
Heart burial became less practical and more symbolic by the 17th century, partly as a religious practice associated with the Jesuits and other Counter Reformation groups. (Some scholars think the heart’s powerful symbolism became particularly important while the Catholic Church was undergoing a moment of crisis.) In Western Europe, it became common for powerful individuals, such as kings and queens, to ask that their hearts be buried in a spot they’d favored during life. In more recent years, Romantic poets and other artists also picked up the practice, which has yet to be entirely abandoned.
1. RICHARD I
Richard I, a.k.a. “Richard the Lion-Heart,” ruled as King of England 1189-99 but spent most of his reign fighting abroad, which is how he earned his reputation for military prowess. (He also may or may not have eaten the heart of a lion.) He died after being struck by a crossbow while campaigning in Chalus, France, and while most of his body was buried at Fontevraud Abbey, his heart was interred in a lead box at the Cathedral of Notre Dame in Rouen, France. The organ was rediscovered during excavations in the 1830s, and in 2012, forensic scientists examined it—now mostly reduced to a grayish-brown powder—to learn more about Richard’s precise cause of death (some think a poisoned arrow dealt the fatal blow). The crumbling heart was too decayed to tell them much about how Richard had died, but the scientists did learn about medieval burial rituals, noting the use of vegetables and spices “directly inspired by the ones used for the embalming of Christ.”
2. ROBERT THE BRUCE
Robert the Bruce, King of Scots 1306-29, asked for his heart to be buried in Jerusalem. But it didn’t get all the way there—the knight he entrusted it to, Sir James Douglas, was killed in battle with the Moors while wearing the heart in a silver case around his neck. Other knights recovered the heart from the battlefield, and brought it back to Melrose Abbey in Scotland for burial. Archeologists rediscovered what they believed to be the heart in 1920 and reburied it in a modern container; it was exhumed again in 1996, and reburied beneath the abbey’s lawn in 1998.
3. ST. LAURENCE O’TOOLE
ST. LAURENCE O’TOOLE
St. Laurence O’Toole, the second archbishop of Dublin and one of that city’s patron saints, died in 1180 in France. His heart was sent back to Dublin’s Christ Church Cathedral, where it rested inside a heart-shaped wooden box within an iron cage—at least until 2012, when it was stolen. The dean of Christ Church Cathedral has speculated that the heart might have been taken by some kind of religious fanatic, since it has little economic value, and much more valuable gold and silver objects were ignored. (Weirdly, the thief, or thieves, also lit candles on one of the altars before fleeing.) The item has yet to be recovered.
4. THE PRINCE-BISHOPS OF WÜRZBURG
The prince-bishops of Würzburg (part of modern Germany) practiced a three-part burial: their corpses were usually sent to Würzburg cathedral, their intestines to the castle church at Marienberg, and their hearts, embalmed in glass jars, to what is now Ebrach Abbey. The practice was common by the 15th century, though it may go back as far as the 12th. Their funerals at the Marienberg castle also featured what may be one of history’s worst jobs: a servant was required to hold the heads of the corpses upright during the funeral, which featured the body seated upright and impaled on a pole. The funerals lasted for several days. There were more than 80 prince-bishops; a German cardiologist who made a special study of heart burial says “about 30” of their hearts found their resting places in the abbey.
5. ANNE BOLEYN
According to legend, after Anne Boleyn’s beheading in 1536, her heart was removed from her body and taken to a rural church in Erwarton, Suffolk, where the queen is said to have spent some happy days during her youth. In 1837, excavations at the church uncovered a small, heart-shaped lead casket inside a wall. The only thing inside was a handful of dust (it’s not clear whether it was actually the heart), but the casket was reburied in a vault beneath the organ, where a plaque today marks the spot.
6. LOTS OF POPES
Twenty-two hearts from various popes—from Sixtus V in 1583 to Leo XIII in 1903—are kept in marble urns at Santi Vincenzo e Anastasio a Trevi in Rome. Traditionally, the hearts were removed with the rest of the organs as part of the postmortem preservation process, and kept as relics just in case the pope became a saint.
7. FRÉDÉRIC CHOPIN
Romantic composer Frédéric Chopin died in Paris in 1849, and most of him is buried in that city’s Pere Lachaise, but he asked for his heart to be buried in his native Poland. His sister carried it back to their home country, where it is preserved in alcohol (some say cognac) within a crystal urn inside a pillar at the Church of the Holy Cross in Warsaw. In 2014, scientists conducted a late-night examination of the heart to make sure the alcohol hadn’t evaporated, although their secrecy frustrated scientists who hope to one day examine the organ for clues about what killed the composer.
8. THOMAS HARDY
THOMAS HARDY
The English poet and novelist Thomas Hardy wanted to be buried in his hometown of Stinsford, Dorset, but friends insisted that a burial in Westminster Abbey was the only appropriate choice for someone of Hardy’s literary prominence. But when town officials found out that Hardy’s body was destined for the abbey, they threw a fit, and so a compromise was reached—most of Hardy went to Westminster, but his heart was buried in Stinsford churchyard (where it has its own grave marker). A persistent, but unproven, story has it that a cat ate part of the heart when the doctor who was removing it got distracted; a gruesome addendum says the animal was killed and buried alongside the organ.
9. PERCY SHELLEY
When the poet Percy Shelley died sailing the Mediterranean in 1822, local quarantine regulations dictated that his body had to be cremated on the beach. But his heart allegedly refused to burn, and a friend, the adventurer Edward Trelawny, supposedly plucked it out of the flames. After a custody battle among Shelley’s friends, the heart was given to Percy’s wife Mary, who kept it until she died. Her children found it in a silk bag inside her desk, and it is now said to be buried with her at the family vault in Bournemouth, England.
10. OTTO VON HABSBURG
The powerful House of Habsburg practiced heart burial for centuries, with many of the organs buried in copper urns in Vienna’s Augustiner Church. In 2011, Otto von Habsburg, the last heir to the Austro-Hungarian Empire (which was dissolved in 1918), had his heart buried in the Benedictine Abbey in Pannonhalma, Hungary. The rest of him was buried in Vienna. The erstwhile crown prince said he wanted his heart buried in Hungary as a gesture of affection for the country—one half of his former empire.
Rutgers palliative care expert Judy Barberio gives patients and their families strategies on how to ease the transition to end-of-life care
[A]lthough 70 percent of Americans die from chronic disease, most do not make their preferences for end of life care known to their families, leaving loved ones unprepared for their final days. Patients who wish to die at home and who can benefit from palliative or hospice care usually are referred too late – often in the last four weeks of life – to maintain comfort and quality of life and to better prepare for death.
The nation’s aging population is presenting new challenges to terminally ill patients and their loved ones, who must manage chronic pain, disability and questions over when to engage palliative or hospice care, and to health care providers who help them navigate the end stages of life.
To advocate for health care that maximizes quality of life and that minimizes unnecessary suffering in end-of-life care, Rutgers School of Nursing has partnered with Barnabas Health Hospice and the Visiting Nurse Association of Central Jersey Home Care and Hospice to educate nurses, physicians, social workers and other professionals on how to improve the end-of-life experience for patients and their families through the “Hope and Resilience at the End-of-Life” conference in New Brunswick on March 7 and 8.
Judy Barberio, associate clinical professor at Rutgers School of Nursing and one of the conference’s organizers, discusses some of the most pressing issues faced by terminally ill patients and their families.
How can palliative care and hospice improve the quality of life for the terminally ill and their families?
Palliative care assists a person who has been diagnosed with a life-limiting illness who might die within the next one to two years. It provides an additional layer of support and symptom management as the patient continues with disease-modifying treatment and provides bereavement support for families as well as addresses the patient’s physical, psychological, social and spiritual needs. Studies have shown that people who start palliative care early in the advanced stages of their illness can prolong their lives and have a better quality of life.
Hospice, which is engaged when disease-modifying treatment has ceased, is appropriate when the patient will most likely die within six months and the focus turns to making the patient comfortable and maintaining quality of life.
How can family members help a terminally ill person continue to live a full life with a chronic illness?
People don’t stop being who they are just because they are dying. They can still enjoy a full life by focusing on the small things that make a difference: wearing clothes they love, eating favorite foods, listening to music, reading books and spending time with friends and family.
Palliative care can help by supporting the patients’ family and friends, who often are grieving the illness and eventual loss of their loved one. The team can help family members come to terms with their confusing emotions and understand what the patient is going through. They also help with addressing pain and managing distressing symptoms as a patient goes through treatment and physical decline. They assist patients in expressing their decisions as to the kind of treatment they want at the end of life. They even can help patients live their dreams at a time when they need their dreams the most.
Can pain be controlled when you have a terminal illness?
Pain is one of the most frequent and feared symptoms in advanced disease. For many families, the last memory of their loved one may either be that of a “peaceful” and comfortable transition or that of a painful end. Most pain can be relieved or controlled. Effective pain control requires good communication among patients, caregivers and health care providers. Pain control plans are tailored to meet the patient’s particular needs and are adjusted as these needs change.
How can caregivers and family members combat “compassion fatigue?”
Compassion fatigue has been described as the “cost of caring” for others in emotional and physical pain. It is characterized by physical and emotional exhaustion and a pronounced change in the caregiver or family’s ability to feel empathy for the patient and can lead to depression and stress-related illness. Signs of compassion fatigue include feelings of exhaustion, reduced ability to feel sympathy or empathy, anger and irritability, increased use of alcohol or drugs, and impaired ability to make decisions and care for the patient. Once compassion fatigue sets in, a caregiver should receive assistance through a health care provider and counseling. Compassion fatigue counseling should screen for and treat depression and secondary traumatic stress as well as provide an early detection system to prevent relapse.
Self-care is the cornerstone of compassion fatigue prevention. Often family members or caregivers put their needs last and feel guilty taking extra time for themselves to engage in stress-reduction strategies, such as exercising, taking a long bath, sleeping well, meditating, doing yoga or getting a massage. It’s important for caregivers and family members to put their own health and wellness at the top of the priority list while caring for loved ones.
Often we struggle with finding the “right” words to comfort someone who is dying or who has lost a loved one but experts say all you really need to say is, “I’m sorry,” that being there for the individual already speaks volumes.
[S]he seemed asleep in the quiet, softly lit room in the hospice section of Advocate Christ Medical Center in Oak Lawn.
Her face was soft, relaxed, almost peaceful. Her breathing was steady. I didn’t know if she could hear me, but I struggled with what to say anyway.
The visit with my mother’s best friend, who lie dying, immediately took me back to the days before my mother’s death five years earlier, when the “right” words just wouldn’t seem to come, even though I had so many hours to formulate them.
Of all the phrases in the universe, the ones that we need in times of grief are often the most elusive.
What do you say to someone who is dying?
And what do you say afterward to those devastated by a loss?
How to navigate grief, whether it’s our own or that of someone close to us, seems a great mystery even to people whose college major was communication.
So this column will attempt to shed some light, to offer some advice and to serve as a virtual hug to those in need.
Because at some point in our lives all of us will be there, facing death, whether its our own or that of someone we love.
Joseph Masbaum has been bereavement coordinator for Advocate Hospice South for 13 years. He has comforted thousands of people as they were dying or through the grief process.
A person’s final moments, he said, are a good time to review. “Encourage them to feel good about their life.”
Regardless of how rich or exciting a person’s life may have been, Masbaum said, “When someone is dying, what’s most important to them is relationships. So talk about the people in their lives. Remind them that their family loves them. Just be reaffirming.”
It’s also important to not fear silence, he said.
While many people on their deathbed desperately want to be comforted by loved ones, some “don’t want to talk about it, some are bitter, some are in denial, some are avoiding it,” he said. Often, it can be hard to know what to say.
In those cases, he said, “I ask them what the doctor has told them about their situation. It gives you a start to know where they are.
“Ask them if they’re comfortable talking about themselves, about their life, their family,” he added.
“Some people avoid the dying because they’re afraid and don’t know what to say. So many of us are uncomfortable with silence — we fill it up with words,” he said. But when you know somebody is dying and are at a loss for words, he added, “Just be silent or say, ‘I don’t know what to say but I’m here because I care.'”
Steve Hoerger, pastor of Salem United Church of Christ in Oak Lawn, is a hospice chaplain. He said finding the right words can sometimes be tough “even for me who deals with terminal people daily.
“I think you let them take the lead and then be comfortable with wherever they go so they know they can open up,” he said.
“I rarely ask direct questions about how they’re handling the dying process. I ask questions about their life and then about their diagnosis and how it’s affecting them. This gives them the opportunity to say more about what they’re struggling with, or not. I’m comfortable with either,” Hoerger said.
Sometimes, he said, conversation can be shocking, but he remains nonjudgmental.
After the loss
Masbaum said, following the death of a loved one, it is common and normal to feel a multitude of emotions: shock, numbness, guilt, regret, sadness, anger.
It is most important, he added, to understand “there is nothing wrong with you” for feeling these emotions.
“So be careful to be very kind to yourself and avoid any negative self-talk,” he said.
Instead, “tell yourself, ‘I am doing the best I can. There’s nothing wrong with me, It’s the grief,'” he said.
Masbaum said when he calls to check on people following the death of a loved one, “They often tell me they feel lost, they feel empty, because their whole life has changed, especially if that person was one of their go-to people — someone they lived with, loved, saw everyday.”
Masbaum recalled a 12-year-old girl who was devastated by the loss of her grandfather because he was someone who really listened to her, someone who had been a key person in her life.
He recalled phoning one woman whose mother had died. “It was 1 in the afternoon or so. She said, ‘I’m in this chair all morning. Right now, I’m still in this chair. I just have no energy.’ So I normalized her feelings. I told her it’s normal to have fatigue and no energy,” he said.
“I only talked to her for about a minute but two hours later I was thinking of her and I called her back. This time, she was excited. She said, ‘I just came in from the yard. I was working in the garden for an hour.’ Prior to that, she was sitting in the chair, admonishing herself for being lazy. But when I told her that was the grief, and that it is normal, it really helped her,” he said.
Masbaum said he encourages people to talk about their loved ones, their feelings and about themselves.
“A lot of times we want people to be fixed — we think they should be getting over their sorrow — but (humans) need to process feelings,” he said. “Each person is unique in their grief and in how long it will take to adjust. Grief is a process that cannot be rushed. There is great wisdom in focusing and coping one day at a time as best you can.”
He also encourages those who are grieving to spend time with people who understand their grief, such as a support group or counselor or another person who also has experienced loss.
“Journaling your feelings is most helpful for many. Some bereaved who journal find it comforting to write a letter to their loved one each evening,” Masbaum said.
He also encourages people to talk with their deceased loved one.
“Some people may say ‘you’re crazy’ for doing that but for 13 years, of the thousands of people I’ve talked to, I’ve only met about four people who never talk to their deceased loved one,” he said. Just saying, “I love you, Mom, I miss you” can be cathartic, he said.
“There’s a gentleman I met in Oak lawn. He told me a story about missing his wife. In the end when he got up to go, I asked him if he ever talked to his wife. He stumbled and said, ‘Maybe a little, I just don’t know how I feel about that.’ I told him what I tell almost all the people I counsel, that it’s an individual thing but that it’s very common, very normal,” Masbaum recalled.
“The next week he came in, I asked how he was doing. He said, ‘I’m doing much better since you told me I can talk to my wife. I talk to her in the garden where we used to work together,'” he said.
Many people, Masbaum said, keep “transitional objects” such as jewelry or items that belonged to a loved one. Many wear a piece of their loved one’s clothing, such as their sweatshirt or jacket, to help them feel a connection.
Also, he said, maintaining a daily routine with some movement or exercise is especially important for those who are grieving, even if it is just a daily walk around the block.
The rituals of death
Peggy Schaffer and Brian Fitzpatrick, funeral directors at Brady-Gill Funeral Home and Cremation Services in Tinley Park, have had funeral attendees reveal that they don’t know what to say at a visitation or interment, particularly if the deceased was taken tragically or is a child.
“The best thing to say is, ‘I’m sorry’,” Schaffer said. “Don’t say, ‘It’s good you have other children’ or ‘You’re young enough to have more.'”
If words escape you, she said, remember actions often speak louder.
“It means more to someone (who is grieving) that you walked in, acknowledging that their mother, father, brother, sister, child lived and touched their lives. You don’t have to say anything,” Schaffer said. “The fact that you took time out of your day to be there says it all.”
Sometimes, she added, a meal a week or so after the funeral reminds the loved one that they haven’t been forgotten.
“Pick up the phone and share a memory,” she said. “It doesn’t have to be a long conversation.”
When it comes to attending wakes and funerals, Fitzpatrick said, there are no “rules” about how long to stay or what to bring.
People still send flowers, Schaffer added, but over the last 25 years, services have become shorter, more streamlined, often with both visitation and funeral service on the same day, and the “gift” of Catholic Mass cards, signifying a future Mass will be said on behalf of the deceased, has dropped off considerably.
“We’re seeing a lot more cremation, with a memorial that includes the urn and lots of pictures,” she said. “More people see the urn as not as traumatic as the (deceased’s) body.”
Picture boards and videos can be conversation starters for those who struggle with what to say, she said.
Schaffer suggested letting a sympathy card or a message left on the deceased’s page on the funeral home’s website do the talking if you cannot.
“Don’t fumble over words,” she said. “If you can’t think of what to say, a hug or a touch will do.”
Finding my words
Standing at the bedside of my mother’s best friend, I decided to say what I would want to hear if the tables were turned.
I told her that we loved her. I thanked her for being a good person in our lives, for being helpful and kind and funny and constant. I thanked her for all of the rides she’d given me to work and school when I was a kid. I thanked her for letting my siblings and me have sleepovers at her house and for coming to my college graduation and for all the times she made us laugh and all the times she brought the best kolachkes in the world to my family parties.
I thanked her for believing in my dreams as a child and for being the biggest fan of my column when I became an adult, even if she did joke that it was only “to keep her nose in all of my business.”
I hugged her, kissed her forehead, rubbed her arm, held her hand and then I thanked her for being a good friend to my mother because that made her a good friend to us.
Although she moved her mouth and raised her eyebrows several times, I’m not sure if she heard or understood. Because I will never know that she didn’t, I am choosing to believe that she did.
[B]ecause people are now living longer and often healthier lives, the rate of some illnesses that are more likely to develop with age has risen. These illnesses include dementia. In fact, the number of us living with dementia was already 47 million worldwide in 2015. It could reach 131 million by 2050.
Dementia is a general term that includes different types of mental decline. The most common type of dementia is Alzheimer’s disease, which accounts for 60 to 80 percent of all dementia cases.
As Alzheimer’s disease worsens, older adults may become more likely to have trouble performing daily activities, can develop trouble swallowing, and may become less active. This increases the risk for other concerns like infections. These infections, such as pneumonia, can increase the risk for death. As a result, the cause of death for people living with Alzheimer’s disease is often infections or some other cause, rather than the Alzheimer’s disease itself.
A team of researchers from Belgium recently studied how people with Alzheimer’s disease use medical services during their final months. The goal was to learn more about the best ways to help older adults with dementia at the end of their lives. Their study was published in the Journal of the American Geriatrics Society.
The researchers studied information from people with Alzheimer’s disease living in Belgium who died during 2012. They compared two groups of people who were diagnosed with Alzheimer’s disease.
One group had death certificates that listed Alzheimer’s disease as the cause of death. This was the group who died because of Alzheimer’s disease.
The second group included individuals diagnosed with Alzheimer’s disease but with death certificates that listed another cause of death (like infections). This was the group who died with Alzheimer’s disease (but not of Alzheimer’s disease).
The researchers looked at the healthcare resources the two groups used in the last six months of life.
Of the more than 11,000 people in the study, 77 percent had something other than Alzheimer’s disease listed as the cause of death on their death certificate while 22 percent died of Alzheimer’s disease. The average age of these individuals was 85, and most were women.
People who died with Alzheimer’s disease were more likely to have at least one hospital admission and more intensive care unit (ICU) stays. People in both groups had about 12 visits with a doctor during the last six months of their lives.
However, the people who died with Alzheimer’s disease received fewer palliative care services. Palliative care helps keep us comfortable when we are near death or dealing with a serious illness. This included fewer palliative home care services during the last six months of their lives. They also spent fewer days in a nursing home.
People in the study whose cause of death was listed as something other than Alzheimer’s disease were also more likely to have invasive procedures compared to people who died of Alzheimer’s disease. These invasive procedures included being put on breathing machines and being resuscitated (the medical term for reviving someone from unconsciousness or apparent death).
The researchers concluded that older adults whose cause of death was Alzheimer’s disease used fewer healthcare resources than people whose cause of death was listed as something else even though they had been diagnosed with Alzheimer’s disease. The researchers suggested that recognizing late-stage Alzheimer’s disease as an end-of-life condition could influence healthcare providers to use more palliative care resources and fewer invasive procedures.
