I thought I’d take a moment and share with you a resource that has come my way.
This guide aims to help make the federal grants available to seniors, veterans, and disabled people much easier to understand and take advantage of, particularly for remodeling homes for accessibility.
Click on the image below to access the guide
The reasoning behind Expertise.com is to help people make truly better decisions by clearly laying out their options, with content written by industry experts. Because of their non-biased approach, they’ve been a trusted source for government entities and organizations throughout the US. Many publications and businesses already use our guides as resources for their readers.
So give it a look-see. I think you’ll be impressed.
Drugs used to prevent the so-called “death rattle” of dying patients can have unpleasant side effects and may not be “morally and economically” justifiable if used only to reduce the distress of relatives, according to new guidelines.
The death rattle is a common symptom in the final days and hours before death. It is one of most well-known indicators that death is near and can be extremely upsetting for relatives at the bedside.
It occurs when secretions such as saliva collect at the back of the throat – often after a person has lost their ability to swallow – creating a hollow, gurgling sound.
Clinicians often use drugs called anti-muscarinic agents to ‘dry up’ the secretions, in order to reduce the symptoms.
However, according to new draft guidance on the care of the dying from the National Institute of Health and Care Excellence (NICE), there is little evidence that the drugs are effective, and they can also cause side effects including dryness in the mouth, blurred vision and retention of urine.
The guidance says that repositioning the patient or using suction tubes can be just as effective at reducing the symptoms.
“It is common to experience noisy respiratory secretions at the end of life…and the death rattle is a strong predictor of death,” the draft guidance says. “The noise can cause considerable distress, both at the time and possibly after death, due to concerns that the person may have drowned or suffocated to death.
“For many years it has been the practice of clinicians to administer subcutaneous anti-muscarinic agents in an attempt to ‘dry up’ secretions and relieve any distress primarily to carers and relatives despite a lack of evidence of any beneficial effect to the patient or improvement in distress levels.”
It goes on to say that, along with the side effects, the cost of using drugs makes it “hard both morally and economically to justify their continued use when the current evidence does not support them and treatment is usually aimed at minimising distress of people other than the dying person.”
The new guidance also includes recommendations on fluid intake for dying people, decision-making around medication and communication with patients and relatives.
Their publication follows the abolition last year of the controversial Liverpool Care Pathway (LCP), which was withdrawn after a review found serious failings in the way it was being implemented, including concerns that decisions around end of life care were not always being made by experienced clinicians.
NICE also said the LCP had suffered from a “perception that hydration and some essential medications may have been withheld or withdrawn, with negative impact on the dying process.”
The new guidelines, which will now go out for consultation, state that people in the last days of life should be encouraged to drink if they are able and wish to.
Sir Andrew Dillon, chief executive of NICE said: “Recognising when we are close to death and helping us to remain comfortable is difficult for everyone involved.
“Earlier this year the Parliamentary and Health Service Ombudsman said that end of life care could be improved for up to 335,000 people every year in England. The guideline we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care.”
Gail Schwartz, 78, helped her husband David, 85, out of his wheelchair at their home in Chevy Chase, Md., where she thinks he does better than he would at a nursing home.
Gail Schwartz wants to keep her 85-year-old husband out of a nursing home as long as she can, but it isn’t easy.
Because David Schwartz, a retired lawyer, has vascular dementia and can no longer stay alone in their home in Chevy Chase, Md., she tends to his needs from 1 p.m. to 11 p.m. every Monday through Saturday and all of Sunday.
When she dashes out for errands, exercise and volunteer work in the morning, she checks in by phone with the aides she has hired. “I’m always on alert,” she said. “At the grocery store, I’m thinking, ‘Is David O.K.?’ ”
An aide now stays overnight, too, because Mr. Schwartz awakened so frequently, disoriented and upset, that his wife began to suffer the ill effects of constantly disrupted sleep. She has moved into the bedroom across the hall.
“I need my rest,” she said. “I’m no spring chicken myself.”
Indeed, Gail Schwartz is 78. While she thinks her husband does better at home — “he’s getting 24-hour attention, and you don’t get that in a nursing home,” she said — friends point out that the arrangement is much harder on her. She worries, too, about costs climbing as Mr. Schwartz’s health declines and his needs increase.
For now, though, she manages, part of an apparently growing phenomenon: the old taking care of the old.
Every few years, the National Alliance for Caregiving and the AARP Public Policy Institute survey the state of American caregiving; their latest report, published last month, focused in part on caregivers over 75. They constitute 7 percent of those who provide unpaid care to a relative or friend, the survey found — more than three million seniors helping with the so-called activities of daily living (bathing, dressing, using a toilet), instrumental activities of daily living (shopping, transportation, dealing with the health care system) and a rising tide of medical and nursing tasks.
Almost half of them report caring for a spouse; the others assist siblings and other relatives, friends or neighbors, most also 75 or older. About 8 percent of these oldest caregivers still care for parents.
The aging of the population has thrust more seniors into this role, said Gail Hunt, president and chief executive of the National Alliance for Caregiving. “There didn’t use to be so many 95-year-olds,” she said, “and someone’s caring for those 95-year-olds.”
That’s challenging for anyone, though the extent of what’s called “caregiver burden” remains a subject of debate. For years, researchers have presented caregiving stress as a potential source of depression, compromised health, even premature death.
Some of those findings are being reassessed; a recent study in The Gerontologist, for instance, argues that the picture is “overly dire” and that several studies find benefits for caregivers — the “healthy caregiver” hypothesis.
(My own hypothesis: Both responses can be true, with caregiving providing purpose and activity in some situations but proving exhausting in others.)
People over 75, however, can find caregiving particularly taxing. They spend an average of 34 hours a week on caregiving tasks, the National Alliance for Caregiving report found, 10 hours more than caregivers over all, and they are less apt to have other unpaid help.
Because 46 percent take care of spouses, they are also more likely to be live-in caregivers, a known source of strain. “You’re responsible for their safety,” Ms. Hunt said. “You have to interact with the person all day long and maybe all night long, so your sleep is disturbed. It’s more stress than if you’re coming over periodically to help.”
The typical older caregiver in the study had been providing care for over five years.
“Just the physical part of it, the lifting and bathing and all of that, can hurt you,” said Donna Wagner, dean of the College of Health and Social Services at New Mexico State University and a longtime researcher on family caregiving. Older caregivers, typically women, have their own health issues.
“My mother is a perfect example,” Dr. Wagner said, describing her as a 4-foot-10 woman who cared for her husband, an obese man with heart disease and diabetes, for seven or eight years. “I don’t even know how she managed,” Dr. Wagner said. After he died at 85, “it didn’t take her long to slide right into dementia. It’s as if she put it off while she had responsibility for him. There are a lot of mysteries.”
There is no great mystery about the kinds of policies and programs that could better sustain caregivers. Ms. Hunt rattled off several, including regular respite care, home aides covered by Medicare, tax credits for family caregivers and more subsidized adult day programs. When asked if she foresaw more government support for such efforts, she laughed. Other Western countries do a better job, she said.
Yet people like Alvin Vissers, 75, still shoulder the role. He retired from his job as a construction project manager near Brevard, N.C., two years ago to help his wife, Ronda, who is also 75 and in the later stages of Alzheimer’s disease.
Mrs. Vissers, a nurse, can no longer speak much and needs help with nearly everything — bathing, dressing, eating. Without constant monitoring, she may wander outside. She sometimes calls her husband of 54 years “honey,” but “I don’t think she realizes our relationship anymore,” Mr. Vissers says.
Spouses can be reluctant to seek help, even if they can afford it. Who else could possibly be as sensitive and steadfast as the partner who’s lived with this person for decades?
But Mr. Vissers, in generally good health despite elevated blood pressure, began having chest pains at night (from reflux disease, it turned out). Another caregiving husband he knew from church had been hospitalized with heart failure, sending his dependent wife to a nursing facility.
“I won’t be any good to Ronda if I give her all this care and she outlives me,” Mr. Vissers said he realized. “The stress of caring for her 100 percent was too much.”
Last year, therefore, Mr. Vissers began driving his wife to an adult day program three days a week. “It worked out so well we went to five days,” he said. The couple’s youngest daughter, who had moved into an apartment in their home with her own daughter, makes dinner most nights. Mr. Vissers can find time to exercise, volunteer and attend caregiver support group meetings.
One day, he knows, his wife may become too immobile for a day program. He may need to hire home care or, eventually, find a nursing home.
But not yet. “I told her when this started, ‘Sweetheart, you’ve cared for me for 50 years; I guess it’s my turn,’ ” he recalled. “Now, I’m finding out what those words mean.”
I was 25 when I flew home for my father’s last birthday. His cancer had returned and he would die three months later at the age of 57. What I remember most about that weekend was the large rectangular gift box he opened. My mother had bought him a new suitcase.
I don’t know if that suitcase qualifies my family for the Denial Hall of Fame. There are so many contenders for that honor. But I’ve carried the psychic baggage over the years. I have never forgotten that image and how we lost a chance to say goodbye. I still wonder if my father was lonely in the silence that surrounded our inability to talk about what we all knew.
Decades later my mother began a long slow decline. By then, I was a newspaper columnist, a job that I often described as “telling people what you think.” I was professionally outspoken. But little had changed since my father’s death.
Yes, my mother and I talked about everything — but we didn’t talk about how she wanted to live toward the end. The closest we ever came to discussing her wishes was when she would see someone in dire straits and say, “If I’m ever like that, pull the plug.” But most of the time there is no plug to pull.
Gradually and painfully, my mother lost what the doctors call “executive function,” as if she were a C.E.O. fumbling with Excel spreadsheets, not a 92-year-old who couldn’t turn on the television or make a phone call. Eventually, she couldn’t decide what she wanted for lunch, let alone for medical care.
In some recess of my mind, I still assumed that death came in the way we used to think of as “natural.” I thought that doctors were the ones who would tell us what needed to be done. I was strangely unprepared, blindsided by the cascading number of decisions that fell to me in her last years.
I had to say no to one procedure and yes to another, no to the bone marrow test, yes and yes again to antibiotics. How often I wished I could hear her voice in my ear telling me what she wanted. And what she didn’t want.
When my mother died from heart failure and dementia, I began to talk with others. It was extraordinary. Everyone seemed to have a piercing memory of a good death or a hard death. Some of these stories had been kept below the surface for decades, and yet were as deep and vivid as if they’d just happened.
Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.
The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end.
So, a small group of us — each with his or her own story — started the Conversation Project, a nonprofit, out of the belief that surely we could make this easier. Our partners at the Institute for Healthcare Improvement gathered experts frustrated at the pace of change who believed that the health care system wouldn’t change until the culture changed. So we are trying to change the culture.
There is now, finally, a real momentum for improving end-of-life care. The signs range from the Institute of Medicine’s report, “Dying in America,” to the success of Atul Gawande’s book “Being Mortal.”
There is also a growing public awareness of the need to break through the reluctance that has kept us tongue-tied for so long. A survey we did last year showed that 90 percent of Americans now think it’s important to have the conversation. But the same survey showed something else: Only 30 percent of us have actually had these conversations. So the gap remains huge.
We still need to transform the cultural norm from not talking about how we want to live at the end of life to talking about it. The real work to close the gap is not just for doctors and patients. It’s for mothers and daughters, husbands and wives, families and friends. We have to bring people to the kitchen table to talk with those they love to have the conversation. And to do this before there is a crisis. Not in the I.C.U.
In our survey, the primary reason people gave for not talking to their loved ones was “It’s too soon.” But it’s always too soon … until it’s too late. Half of all elderly people in hospitals cannot make decisions for themselves at the end of life. Far too many health care providers are uncomfortable and untrained in these conversations.
From all the stories shared with us, we know that what people need most is help getting started. They need a travel guide to take the first steps down an unfamiliar and difficult road. So we created a Conversation Starter Kit, which deliberately avoids being a technical medical checklist for the dying in favor of a careful discussion guide for the living.
Our starter kit asks what matters to you, not what’s the matter with you. It asks what’s most important to you in the last phase of your life? Who do you want to make decisions for you? Where do you want to be? Do you worry that you won’t get enough care? Do you worry that you’ll get overly aggressive care?
About two-thirds of the nearly 300,000 people who have come to our website download the starter kit, which is free. We’ve been told repeatedly that conversations that had loomed as frightening and overwhelming repeatedly turned into the most intimate and rewarding moments.
Is it important to have the health care system ready to respect and record our wishes, to have health care providers become more comfortable beginning these talks? Of course. But the hard truth is that we have to begin ourselves — by thinking about our own values, by sharing them, by bringing our own beliefs into the center of the room when decisions will be made.
In my own adulthood, the culture of birth changed. It wasn’t doctors who first tossed out the stirrups and ushered in fathers and video cameras and “birthing rooms.” It was parents who said, birth is not just a medical experience, it’s a human experience. Now we are finally saying that dying, too, is not just a medical experience, it is also a deeply human experience.
Last winter we held a national dinner party to break bread and taboos, to eat comfort food and talk about dying. I shared the table with Nancy Frates, who is known for starting the A.L.S. ice bucket challenge to honor her son Pete. “Now I understand,” she told me. “The conversation is a gift to your family.”
When I helped found the Conversation Project, I thought we were doing this for people who were dying. I thought of my parents. I thought of “executive function” and “baggage.” What I have learned is that the conversation is also a legacy. This is the gift, maybe the last gift, we can give one another.
Even after the conversations are held and legal documents completed, reaching acceptance that a person is dying is a difficult path for the individual who is ill as well as for their family members.
Many recent news stories have focused on right-to-die issues — what options might we want, and what control can we exert, as we approach the end of life? When death is sudden and unexpected, there are few choices, and if there has been no preparation for this moment, events will unfold as medical and emergency staff see fit. But when illness is chronic or prolonged, or when pain, frailty and old age impact the quality of life, there are measures we can take to have our wishes respected, to share those wishes with others, and to request a dignified, comfortable death.
An NPR story last year examined why some health care providers are hesitant to discuss end-of-life measures, even with seriously ill patients. There are many reasons: not enough time; not wanting the patient to give up hope; discomfort with the topic. One suggestion has been to initiate a physician-patient discussion about end-of-life issues automatically each year. Not all patients welcome the discussion, but sometimes the increased feeling of control actually can make patients with long-term illnesses feel better. They can decide, for example, to refuse certain medical treatments. They can decide if they want “heroic measures” — feeding tubes, CPR, ventilators, defibrillators — to prolong their lives when a desirable quality of life (however one may define that) might not be possible.
Making these decisions isn’t easy, and for family members and friends, accepting these decisions may be challenging, even traumatic. In our recent NewsHour columns, we talked about Advance Directives, hospice care, and other measures designed to make — as much as possible — the end of life a more peaceful transition for the patient. But watching someone you love slip away can be so overwhelming that it is instinctive to want to do everything possible to keep that person alive, even against their own wishes. How do you accept letting go?
Where to begin
Sometimes we hear from our clients that the person they are caring for wants to discuss these matters, but they or their family members are reluctant to face the issue. Below are some ideas to help begin the process to help clarify decisions about the end of life. Experts advise that you begin by thinking and talking about values and beliefs, hopes and fears. Consult with health care practitioners when you need more information about an illness or treatment.
Consider first the questions below:
What makes life worth living?
What would make life definitely not worth living?
What might at first seem too much to put up with, but then might seem manageable after getting familiar with the situation and learning to deal with it?
If you knew life was coming to an end, what would be comforting and make dying feel safe?
What, in that situation, would you want to avoid?
How much control is important for you to have when facing a terminal illness?
Then, if you have the opportunity, and before a loved one is incapacitated, try to explore these more specific questions:
Whom do you want to make decisions for you if you are not able to make your own, on both financial matters and health care decisions? The same person might not be right for both.
What medical treatments and care are acceptable to you? Are there some that you fear?
Do you wish to be resuscitated if you stop breathing and/or your heart stops? What if there is no hope for full recovery?
Do you want to be hospitalized or stay at home or somewhere else if you are seriously or terminally ill?
How will your care be paid for? Have you overlooked something that will be costly at a time when your loved ones are distracted by grieving over your condition or death?
Will your family be prepared for the decisions they may have to make?
Write the responses down, and share with family members. To formalize the process, you can complete an Advance Directive and POLST (Physician’s Orders for Life-Sustaining Treatment). Both documents can be revised at a later date if you wish.
A note: This process is not appropriate for everyone. There may be historic, religious or cultural differences within families that affect their willingness to discuss these deeply personal matters. If it makes sense to bring up these topics, do so. If it is not something that your family is comfortable with, you might not be able to get the answers you seek. You can try again at a later time — or perhaps not at all. Families have their own dynamics, and for some, this discussion simply may not be achievable or desirable. In the case of a serious illness, events will unfold as they may. That is also a choice, and must be respected.
Letting Go
Even after the conversations are held and legal documents completed, reaching acceptance that a person is dying is a difficult path for the individual who is ill as well as for their family members. The person who is ill doesn’t want to cause grief. She may feel there is unfinished business within the family — a reconciliation not completed, an “I love you” never stated out loud. He may be fearful of pain, of the loss of control, of the loss of dignity. And of course family members share these fears. They may dread the grief or fear of losing this critical person in their lives. They may want to attempt the very measures — the heroic measures — that the individual specifically stated he or she does not want.
Despite the pain of grief for those we love, being able to let them go is not about our needs, nor about the physician’s need to try to heal even in the face of impossible odds. It is about what our loved ones need and want to reduce their suffering and help them die in dignity. When those wishes have been talked about, and when they are in writing, a family has the comfort and assurance that they are doing the right thing if they are asked to give permission to accept comfort measures instead of life-sustaining interventions.
A natural process sometimes occurs as an illness progresses. As death nears, many people feel a lessening of the desire to live longer. Some people describe a profound tiredness. Others may feel they have struggled as much as they have been called upon to do and will struggle no more. A family’s refusal to let go can prolong dying, but cannot prevent it. Dying, thus prolonged, can become more a time of suffering than of living.
Family members and friends may experience a similar change. At first, we may adjust to managing a chronic illness, then learn to accept a life-limiting illness, then accept the possibility of a loved one’s dying. Finally, we may see that dying is the better of two choices, and be ready to give the loved one permission to die. The dying person may be distressed at causing grief for those who love them, and, receiving permission to die can relieve their distress. There is a time for this to happen. Before that, it feels wrong to accept a loss, but after that it can be an act of great kindness to say, “You may go when you feel it is time. I will be OK.”
At the time a person is near death, sometimes touch is the best communication. Gentle stroking of a hand or a cheek, and quietly reassuring the person that you love them and that you will be all right is perhaps the most compassionate way to ease your loved one on his journey. In a situation where you are not present at the time of death, forgive yourself and know that you did the best you could to make the final hours or weeks of life peaceful and meaningful.
Grief
Each individual grieves in his or her own way and for an unpredictable amount of time—there is no “correct” way. Grief affects us emotionally, physically and spiritually. There is a deep understanding that nothing will ever be the same. Grief is most acute when someone dies or shortly thereafter, but there are also the effects of “anticipatory grief” and what is sometimes called “ambiguous loss.”
When someone has a long-term illness such as terminal cancer or Alzheimer’s or Parkinson’s disease, we may begin a grieving process long before the person passes away. Particularly when an illness causes cognitive or memory decline, we grieve the person who used to be. They were our partners, our siblings, our parents. We remember their personalities, their intelligence, energy, talent, humor. They were our best friend, companion, adversary, advisor or confidante. As those characteristics fade with increasing illness, we start grieving their loss. The body may be there, but the person has changed irrevocably. It may have been difficult, frustrating and exhausting to care for the individual, and sometimes, caregivers see death as a relief. As a consequence, for many family caregivers, there is an extreme feeling of guilt over that relief. This is not an unusual reaction, but if the emotions persist, counseling or support groups may help you get through the conflicting and troubling feelings.
For other people, there is a delay in feelings of grief, or the feelings may be buried or expressed in different ways — withdrawal, anger, escape through drugs or alcohol, or intense involvement in work. Grief reactions may be unexpected and waves of painful memories may assault you at unpredictable times. The anniversary of a person’s death or other important dates can be particularly tough. However the process unfolds, take care of yourself, cry when you need to, seek solitude if that helps, and try to give yourself the space you need to reach an even keel.
While the passing of time will not erase feelings of loss, the intensity will ease somewhat as months and years go by. If you find it too difficult to move on with your life, you may be facing situational depression. Find time to talk with a grief counselor or attend a grief support group (often available from hospice). It is very important to take good care of — and be kind to — yourself. The organizations and resources listed below, or those in your personal or faith network, may also be able to help as you move through this profound experience — one we all must face at some time in our lives. One that makes us human. Complete Article HERE!
Less than a third of people have discussed what they want to happen at the end of life. Just four per cent have written advance care plans for when they are dying. Yet more than two thirds of people questioned say they are comfortable talking about death.
Even older people are unlikely to discuss what will happen at the end of their lives.
The NatCen survey of more than 1,300 people showed seven in ten want to die at home. This is at a time when six in ten people die in hospital.
The research, commissioned by Dying Matters Coalition, examines public attitudes to issues around death, dying and bereavement.
While people have strong views about the end of life, they are still unlikely to have discussed their own death. This was mainly because people felt death was a long way off or that they were too young to discuss it. Nearly one in ten of people aged 65 to 74 years old believed they were too young to discuss dying.
Three in ten people had never seen a dead body. Just one per cent of the sample said they would go to a minister, pastor or vicar for information about planning the end of life. Most people’s preferred choice for seeking information was a friend or family member, or their GP.
This was despite the fact that nearly seven in ten of the respondents described themselves as Christian. Nearly two in ten said they were atheist or had no religion.
Professor Mayur Lakhani, chair of Dying Matters, said: “As a practising GP, I know that many people feel frightened to talk about death for fear of upsetting the person they love. However, it is essential that people do not leave it until it is too late. Planning for needs and wishes helps you to be in control, and it helps those we leave behind.”
One carer said: “It’s not easy to talk about end of life issues, but it’s important to do. Now that we’ve put our affairs in order and are talking about what we want, we can ‘put that in a box’ as it were, and get on with living one day at a time, cherishing each day together, as I know it’s going to end one day.”
A bereaved widow said: “If you talk about dying, you can say everything you want or need to. There are no regrets.” Complete Article HERE!
Margaret Leahy sits quietly beside a hospital bed, holding the hand of a dying woman. She knows her name, but that’s about all and — it is enough. Margaret talks quietly to the woman, breathes a prayer, strokes her hair, dampens her lips.
Margaret Leahy, 75, is part of a group of volunteers committed to the belief that no one should die alone — that’s the name of their group. Working at Saint Alphonsus hospital, they sit with patients at the end of their life who have no one else who can be with them. “There are people who don’t (have anyone else) and they deserve to have somebody there,” says Margaret. “It’s just being a presence, really, just being there. … Sometimes it’s just holding their hand or stroking their head or taking care of their mouth that gets all dry.” Here Margaret, a member of Sacred Heart Catholic Church, sits in their memorial garden.
For whatever reason, the woman has no family or friends to be with her in the last hours of her life. But she has Margaret, along with a small group of hospital volunteers, who will take turns being by her side until she dies.
She says: “Compassionate companionship …
“These people are at the end of their lives, but they have a whole story and history behind them. And I may not know (the story), but they have a life that deserves respect.”
This person might be a transient, just passing through, or had an accident far from home. Or be someone alienated from family, or an elderly person with an elderly spouse who can’t be at the hospital. All of them perfect strangers.
“They’re not. They’re family. …
“You’re able to be with somebody in one of the most critical moments of their life. There’s birth and there’s death. And there’s usually a lot of people around the birth and not too many people around the death. …
“It’s one of the most rewarding things I’ve ever done.”
Margaret is part of an all-volunteer group called No One Dies Alone, a national organization with local chapters where people are moved to create them. The nucleus of this group is a partnership between Saint Alphonsus Hospital and members of Sacred Heart parish, begun 10 years ago by Mary Fran Brown.
When death is imminent for someone without family, usually 48 to 72 hours more or less, nurses will contact the chaplain who sets into motion a beeper and subsequent phone calls to the small pool of 20 or 25 volunteers who will come in four-hour shifts around the clock. Margaret is one of the relief coordinators.
“You’re not always the one there when they die (it is someone else who is) but all the volunteers feel the same way: It is a wonderful gift that we’ve been given to be able to do this.
“ … It’s a gift to me, but it’s also a gift I can give to them.”
Everyone volunteers for different reasons, and Margaret’s are many. She knew from a young age that she wanted to be a nurse, and over the years, there have been many people who have died while she was working.
“They have not been ignored, but you’re in with them, you walk out — and they die. Or you go care for someone else, come back half an hour later — and they die. So I’ve seen people that have had nobody with them.”
Among the deaths in her own family, Margaret has been able to care for one sister. But she wasn’t able to be with her parents, another sister, her brother or sister-in-law when they died. She had been with them and then had to come home; other people were with them at their deaths.
“So I think it’s kind of a way of giving back.”
On just her third day on the hospital floor as a young nursing student, Margaret went into the room of a heart patient.
“He starts, as I now know, having chest pains. The dear nuns were very sweet; they felt I was young, so they had me leave the room. So I wasn’t in the room. … I’ve often felt that’s another reason I’ve been drawn to this work: because I couldn’t be there for him.”
When it’s their turn, volunteers check in with the volunteer office and the nursing staff and then go to the room. Most of their people are unconscious or semi-conscious.
“They say hearing is the last to go and they hear voices, they feel touch. So we hold hands, we talk. …
“I read a great article years ago that struck me. It said, ‘Even when you’re dying, you’re living.’ It’s a much more positive aspect to look at that. (Death has) become something you don’t fear.”
Margaret might read out loud or read to herself; she might say rosaries out loud or silent prayers, depending on the person’s religious preference. When she was with her sister, she knitted.
“It’s being the presence there, letting them know they’re not alone. It’s a very sacred time to be there. It’s sacred because it’s so real.”
One time, Margaret was sitting by the bed, holding hands with a woman. A nurse, a friend of Margaret’s, came by to check on both of them and they were talking softly across the bed.
“We both … looked down and she had very quietly passed away. And I thought, you know, that’s not a bad way to go, with people right beside you, talking, so you know you’re not alone. … A feeling of connectedness.
“(A peaceful death) — that’s what we wish for everybody. It doesn’t always happen, but when it can … There’s so much un-peaceful death in the world, it’s nice to be able to see that somebody does have one.”
The services that No One Dies Alone provides are for people of any or no denomination, but Margaret’s volunteering comes from a place of deep faith.
“Visit the imprisoned, visit the sick. Care for the sick, feed the hungry, shelter the homeless; take care of those that are in need — and these are people who are in need.
“That’s where my faith is coming from, caring for another in whatever way you can. It’s so integral, it’s so hard to put into words. …
“There are a lot of volunteers who are doing it to simply be of service to another human being — another type of faith.”
Margaret is also on the Board of Directors for Friendship Clinic, a free medical clinic on Latah Street, and is one of the clinic managers. She also does home visits for St. Vincent de Paul and does faith-based community nursing at Sacred Heart. Her husband, Rick Leahy, is a volunteer at Corpus Christi House.
“It’s a need to give. …
“If you had asked me at 25 (years old) what I thought I’d be doing at 75, I think I would have said I would be happy to be alive. But … I often just seem to step into things and, it seems, I seem to fill a need and it seems to fill a need in me.
“Maybe it helps me become a little bit more complete, a little more whole, a little less egocentric. …
“I always wanted to be a nurse (and) I’m still a nurse. I thought the other day: This is ridiculous at my age. But I know a lot of nurses who are older than I am that are still going. Maybe that’s it. (Volunteering) keeps you involved in life. Or death. …”
Margaret realizes that the volunteering she does isn’t for everybody. One of her daughters, for instance, works in an office in Minneapolis. On a recent Thursday, the daughter gave blood; on Friday, she tutored refugees; on Saturday, she fed the homeless.
“Her skills (are not nursing) but she still feels the need to go out and help. I think a lot of people want to help and try a lot of different things before the thing that really fits them comes along. I think that’s OK. Everything (you do) gives you a different perspective.”
And age has little to do with anything. When she retired, Margaret joked to an older friend that now she was an elder.
“(My friend) said, ‘I’m an elder, Joe’s an elder, Ellen’s an elder. You are an elder-in-training.’ I thought, ‘I can do that.’ (When I retired) at 65, you tend to think, well, this is it — and it’s not. (Life) goes on and on and if you look at it as an elder-in-training, then you have a job. …
“It’s nice to know I can keep growing at my age. You don’t think about it, but you do (keep growing). Sometimes faster, I think, than when you were younger.”
Sometimes, Margaret will be with someone when they die.
“(I say), ‘Goodbye. You’re free to go.’ I usually say a prayer.
“The staff has procedures to follow (and) one time there was a nurse and a student nurse when this lady died. Or gentleman, I can’t remember. The nurse said (to the student), ‘You just stay here while I go do this.’ I could tell the poor girl was just really not comfortable.
“I finally said, ‘You know you really don’t have to stay here.’ I said, ‘I’m OK. I’m not afraid to be alone with them.’
“You don’t learn that young, you learn that as you grow, and it’s not (at all) fearful.”
Margaret will stay for a while longer in the hospital room.
“I guess I don’t think about it as they’re going to heaven. You want them to go to peace, to go wherever they want to go — back into the universe, whatever. At that point, it’s their individual destiny.
“For me, it’s just … being able to be there for somebody. So they’re not alone.
