Liberalizing Diets in Long-Term Care

Therapeutic diets are often ordered for residents of long-term care facilities. A therapeutic diet is defined as a diet intended to treat a disease or help manage a medical condition. Some examples include a 2 gm sodium, diabetic, and renal diets. However, many of these diets may not be appropriate for nursing home residents. Focus for the long-term care resident is on quality of life, quality of care, as well as residents’ rights. As a part of the The New Dining Practice Standards, The Academy of Nutrition and Dietetics reports that protein-energy malnutrition effects 23% to 85% of long-term care residents and most of these were on restricted diets that might discourage intake. Therefore, the Academy recommends that long-term care facilities individualize residents’ diets to maximize meal intake of those who are at nutritional risk. In many cases, a regular diet improves meal intake, minimizes struggles over dietary compliance, and improves residents’ quality of life. With assessment and monitoring by a registered dietitian, a regular diet (with texture modifications) can be appropriate for many long-term care residents, even those with a diagnosis of diabetes or hypertension.

Liberalized diets are defined by efforts to relax dietary prescriptions established to help manage or treat a disease like diabetes, high blood pressure, congestive heart failure, or renal disease. More than just supporting improved quality of life, a move toward liberalized diets has been shown to result in improved intake and a decrease in the malnutrition and unintended weight loss that often occurs when residents are served food they don’t want—and consequently won’t eat. As diets are liberalized, there is opportunity for experienced dietitians, dietary managers, chefs, and nurses to educate long- and short-term residents on making wise nutritional choices, and helping them understand how their decisions, good or bad, may affect their overall health.

You may ask: will we need to increase medication for all our diabetics? The answer is probably not. According to Nutrition411, “in many frail elderly patients, it is not realistic to manage medical conditions or change medication in an attempt to reduce blood sugar levels.” Glycemic goals for the elderly may include an HbA1c of <8.0 rather than the 7.0 guidelines set for other adults by the American Medical Directors Association. Also, support for the use of regular diets for nursing home residents with type 2 diabetes is provided by a study in which 14 nursing home residents received the regular diet and 14 received a no-concentrated sweets diet. At 6 months, there was no change among the subjects’ HbA1c in either group. The American Diabetes Association recommends the use of regular diets with consistent amounts of carbohydrate at meals and snacks. Calories should meet estimated nutritional needs. Regular menus in long-term care facilities are generally consistent in calories, served at consistent times, and portions are controlled. If desserts are served, the portions are typically small. A fat restriction is not indicated for the majority of this population due to a potential risk of malnutrition. Menus usually contain few fried items if any, gravies are broth-based, not made from meat drippings, and little salt is used in preparation of foods.

Most experts agree that a benefit exists to preventing and treating heart disease even in elderly patients (defined as 65 and older). However, there is evidence that the importance of serum cholesterol levels as a risk factor for coronary heart disease decreases, virtually disappears after age 65. One should consider the functional age of a client, quantity versus quality of life, presence of other risk factors such as dementia, terminal illness, and the resident’s wishes (advanced directives). Even in this case, a regular diet is appropriate to enhance the dining experience and allow choices.

Put yourself in the shoes of these residents. Would you want to finish out your days eating bland food, no dessert, low sodium bread and cheese, or would you rather have a slice of pizza and ice cream? We need to consider residents’ rights and give them choices because they have so few choices left. Mealtime is a way for the resident to take a very active part in their own healthcare. Let’s help them do just that.


This article was written by Lisa Stewart and can be found here.

What to Do When Siblings Can’t Agree on a Parent’s Care Needs

Siblings! For some lucky families, having a bunch of adult siblings gather around and plan how to take care of Mom and Dad as their parents’ health begins to fail is a great comfort. For some families, siblings who never got along as kids and have had little to do with each other as adults being thrown together to make touchy decisions is disastrous.
Two siblings hands facing each other one with thumbs down the other with thumbs up

For most families, the journey through the mine of elder care decisions falls somewhere between the two extremes. Elder care has a way of sneaking up on people. Generally, if there is an adult child living in the same town as the aging parents, it is this child who becomes, at the first sign of need, the default caregiver. That usually makes sense. You live in town. Your folks need some help with their Medicare forms, so you stop over. They need help with the yard, so you start taking time away from your family to help out. Then its grocery shopping and then, well, you’re on your way to taking on a second job.

Ideally, before things get to this stage, you’ve had conversations with your parents about how they want their needs met during their later years. They’ve made out the papers naming a Power of Attorney for Health Care (a health directive indicating who will make health decisions if they can’t and detailing their preferences for treatment) and a Power of Attorney for financial affairs. A will should be part of this, as well as other personal papers. Ideally, as well, all siblings are aware of these papers, what they contain and all are in agreement. Ideally – taking care of the elders becomes a family affair. However, life is seldom ideal.

Even in seemingly harmonious families, the person who slowly became a default caregiver can start to feel resentful. The out-of-town siblings can conveniently slide into denial. They aren’t around to see how much help is needed. They see Mom and Dad occasionally, talk to them on the phone, and all seems well. The fact that you, the in-town sibling, are the reason everything is going so smoothly doesn’t really register with them.

This is a red flag for you. It’s time to stop and consider how you are, as a family, going to handle the spiraling needs of aging parents. Most experts would suggest a family meeting. I agree. You, the hands-on caregiver, would explain all you do and give your siblings a chance to help.

You’d find each other’s strengths and weaknesses and work with those. You’d regularly check in with each other and update the whole family as needed. I would suggest this, because it is ideal, and many families can do this with a little work. If this works for your family, congratulations and you can quit reading here.

Those of you who read questions and answers in the family and relationships support group will see the cold hard facts. You will see that, for many, the chances of a civil family meeting where you hash out the needs of your elders and agree who does what are, well, nil. You will see caregivers stressing over siblings accusing them of spending too much of their parents money to care for their parents. You will read the pleas for help from the one sibling who has quit his or her job to care full time for an ailing parent being either ignored by siblings, or worse, being accused of predatory intentions because they are “running the show.”

Option 1: Geriatric Care Manager

When these ugly scenes pop up, there’s usually no way to go but through a third party. It’s nice if you can agree on hiring a geriatric care manager, if you can find one in your area. This person would do the managing, get the help set up, and offer a cool head to work out problems, since the manager is not emotionally involved and doesn’t carry family baggage.

Geriatric care managers are not available in every part of the country, and there is no over-reaching licensing, so you will want to do your homework. But sometimes, these people can make siblings see the light. They can help the ones in denial realize that the one doing hands-on care is “really working.”

Option 2: Counseling

Family counseling is also a good route, if siblings are willing to work on sibling relationships for the sake of their parents. Talking through the issue with an objective third party, who can guide the conversation and keep it civil, can help families work through the challenges associated with caring for an elderly parent. It helps everyone involved to better understand the other family member’s views, frustrations and challenges, and can sometimes offer a fresh perspective.

Option 3: Elder Care Mediation

Unfortunately, many family relationships are beyond that point. This is where elder care mediators come in. These people are trained to mediate family disputes. Likely you can find one through your local court system or in the phone book.

This article was written by CAROL BRADLEY BURSACK and can be found here.

How to Handle an Elder’s Controlling Behavior

Many caregivers have times they want to cut and run. They feel they’ve given their all to their elders, and then their elders want more. The parent wants the adult children to be there all the time. They won’t accept hired help. If the caregiver wants to go out with a spouse or friends, the parent whines about being left alone or wants to go along. The parent complains about the carefully prepared food, the specially chosen clothes, anything at all.

Family Dynamics Plays a Key Role

Sometimes the dynamics between caregiver and care-receiving parents are just a continuation of the family dynamics from the past— dynamics that were always there – a child trying to please a parent who can’t be pleased. The controlling behavior is abusive and likely handed down from generation to generation. This behavior is so entrenched in the family that it seems only therapy could change anything and family therapy is not likely to happen at this late date.

Sometimes, however, if the caregiver gets brave enough to decide what is just bad temper they can live with and what is abuse and then can set boundaries and stick to them, the situation can be made more bearable. There is something else to consider. If the controlling, abusive behavior is not deeply entrenched in the family, the caregiver may be helped to understand the situation by understanding that much controlling behavior by their elders is fear driven.

A Loss of Independence

As people age, they feel a loss of control over so many things, their bodies not the least of it. They often suffer chronic pain. They sometimes lose the ability to walk. The humiliation on incontinence is thrust upon them. So, they lash out at the one person they know (or hope) won’t leave them – you, the caregiver.

Family History May Play a Role in Elder’s Behavior

I’m not excusing the elder’s difficult behavior, and I’m not saying caregivers should allow themselves to be abused. I am suggesting that a caregiver analyze the behavior of the elder and the family dynamics, maybe even inviting a few other opinions, so they can see where this controlling behavior is coming from. This understanding may influence the way you handle the controlling behavior.

Giving Back Some Power

If it seems to be coming from the elders’ frustration of loss, of having everyone else make all of their decisions, you may want to see if there are ways you can hand back some power to the elders without doing harm. Think what you would act like if you had people swoop in and take over your life, even if they had the best of intentions. Then, look at your own behavior and see if you are taking more control than you need to, or doing so because it’s “efficient,” even if not totally necessary. If this is the case, you may want to relent a bit, and make sure the elder can control whatever his capabilities allow. By doing this, you may find life more peaceful all around this way.

No matter what the cause of the controlling behavior – entrenched abuse or fear stemming from uncontrolled loss – setting boundaries with an elder is necessary. You must decide how much you will take. How much negative behavior is excusable because of the circumstances and when does this become abusive? Sticking to the boundaries you set is hard, but consistency is important (unless you are faced by a medical change). Even when dementia is present, there is often some comprehension within the abusive parent that they have gone as far as they can go without losing the caregiver.

Bringing in Reinforcements

If you are in a no-win situation that stems from abuse from childhood, the only solution may be to have the parent cared for by non-family members in assisted living or a nursing home. That is one way to put some distance between you and the controlling parent, without giving up caregiving.

Caregivers walk a fine line with their elders between being caring and being abused. While for each person, the line will be a little different, family history often plays a large part in where this line is drawn. Third party help, whether from a trusted friend or a paid counselor, may be worth your time in finding this line, if you can’t do it alone.

This article was written by  Carol Bradley Bursack and can be found here. 

Families Say Hospice Better Than Hospital for Dying Cancer Patients

hospice better than hospital

hospice better than hospital

January 19, 2016

By Steven Reinberg

HealthDay Reporter

TUESDAY, Jan. 19, 2016 (HealthDay News) — Families of patients dying of cancer felt their loved one had better care and quality of life when they died in a hospice rather than in a hospital’s intensive care unit, a new study reveals.

Relatives reported a better end-of-life experience more often when their loved one received hospice care for more than three days (59 percent) than those who received hospice care for three or fewer days (43 percent). Moreover, only 45 percent of families reported excellent care when the patient was admitted to a hospital intensive care unit (ICU) within 30 days of dying, the researchers found.

“Our findings are a powerful argument for the importance of advance care planning,” said lead researcher Dr. Alexi Wright, an associate professor of medicine at Harvard Medical School in Boston.

How and where people die strongly shapes patients’ dying experience and how family members remember it, she said.

“In this study we found that patients’ preferences influenced the care that they received. Now we need to ensure that patients and their family members have the information they need to make choices about their end-of-life experiences and plan for it,” Wright said.

The report was published Jan. 19 in the Journal of the American Medical Association, a special themed issue on end-of-life care.

For the study, Wright and her colleagues collected data on more than 1,100 cancer patients. The investigators used data from interviews with family members of Medicare patients with advanced lung or colon cancer from a study of patients who died by the end of 2011.

The researchers also found that only 42 percent of families of patients who died in the hospital said their loved one had excellent end-of-life care, compared with 57 percent of families whose loved ones died at home or in a hospice.

In addition, family members of patients who did not receive hospice care or received three or fewer days of hospice care were less likely to report the patient died in their preferred location (40 percent) than those who received hospice care for more than three days (73 percent).

“Efforts to increase earlier hospice enrollment and avoid ICU admissions and hospital deaths are important areas to focus on to improve the quality of end-of-life care,” Wright said.

Dr. R. Sean Morrison is president of the American Academy of Hospice and Palliative Medicine and director of the National Palliative Care Research Center. He suggested that “patients who have access to hospice care have a better quality of death and a more peaceful death than patients in hospitals.”

One reason is that hospice care takes into account patients’ values and goals and matches treatment accordingly, explained Morrison, who is also vice chair of research in the Brookdale department of geriatrics and palliative medicine at Mount Sinai School of Medicine in New York City. “Hospice also provides an added layer of support to the family,” he said.

In addition, hospice provides home care for patients who prefer to die at home, Morrison said.

That so many family members report a poor quality of death for their loved ones “should be a wake-up call,” he said.

“If 50 percent of Americans said they were unhappy with their hip replacement, that would be a national outrage,” Morrison added. “The same should be said of the care of people at the end of life — we have to be able to do better.”

Hospice care is available to most patients and most hospitals have palliative care teams, said Dr. Joan Teno, a professor of medicine at the University of Washington in Seattle.

“Now we have to focus on changing physician behavior to improve quality of care,” she said. At the end of life, doctors need to take patients’ values and goals into account, Teno said.

In her recent study, Teno found that only one in five family members of someone who died in an ICU said that care was consistent with their preferences. “Care that is not consistent with your preferences is a sign that the health care system is breaking down. We really have to align care with preferences,” she said.

Moreover, hospice care needs to start earlier, not just in the last three days before dying, Teno said.

“We have to start paying doctors not for procedures in the ICU, but for quality,” Teno said. “The key is — were patients informed about their prognosis, their treatment options, and was the care consistent with their goals and values?”

More information

Visit the National Hospice and Palliative Care Organization for more on end-of-life care.

This article can be found not the website, or by clicking here.

Coping With a Loved One’s Terminal Illness

terminal illness

The Long Goodbye

Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Consider, for example, that two thirds of those who are diagnosed with cancer currently have a five-year survival rate.

The result of all of this is that death has become less and less a sudden and unexpected event. In its place has come a process that begins with a life-threatening diagnosis, proceeds through a period of treatment (or treatments), and ends eventually in death. This process means that both the terminally ill individual and the family are increasingly confronted with the need to “live with death” for a prolonged period of time.

Because the nature of death and dying has changed so dramatically, the way we grieve has also changed. The new grief differs from traditional grief in significant ways, not the least of which is that it includes the terminally ill person. In addition, what has increasingly become a protracted process as opposed to an event not only leaves individuals to mourn but typically draws in the entire family of the dying person for months or even for years. This process has the potential to alter lifestyles and force families to confront issues that once were dealt with only after the death of the loved one. It can easily evoke issues from the past that were never fully addressed or resolved.

Grief is a family matter

The fact that grief today is a family matter as much as it is an individual one. What is needed is a new template—one that is relevant to families and their experience. That is what we present here. This model is intended to be a road map that you and your family can turn to as you navigate your way through the current realities of death and dying. And by the way, when we use the word family, we include not only blood relations but all those who have a significant connection to the person who carries the diagnosis.

The challenges that families must face when confronted with a terminal diagnosis of a loved one are complex. They include evolving new structures and dynamics as the person they love slowly slips away. It means learning how to cope with setbacks and deterioration as well as periods of seeming remission. It means dealing with the complexities of extended grief, which can wear individuals down and lead at times to ambivalence or the unpleasant feeling we get when we find ourselves wishing that the process would end. It means talking with a dying loved one about mortality and other issues that do not arise when death strikes suddenly and unexpectedly. It means learning to make space for extended grief in lifestyles that are typically busier than those of earlier generations.

Perhaps most important, the new grief involves confronting family issues that may have been dormant but unresolved for many years. These issues typically reemerge as families move past their initial reactions to a terminal diagnosis and are forced to interact and work together through a process of extended grief. Finally, it means moving forward together as a stronger family after a loved one passes.

Without understanding and without guidance in each of these areas, family members who are forced by circumstances to cope with prolonged grief are vulnerable to serious psychological consequences, including depression, guilt, and debilitating anxiety. These circumstances can even lead to physical illness. Whole families are vulnerable to rupture as a result of a resurgence of unresolved issues that are unearthed as a result of a prolonged terminal illness in a loved one. Even loving couples may find their relationships in jeopardy as a consequence of unwanted lifestyle changes. What families need now—and will need in the future—is guidance for how to anticipate and deal with such issues.

We are proposing here a five-stage model for family grief. However, we want to caution readers not to expect that there will be hard-and-fast boundaries separating these stages. While virtually every family will experience each stage, you should not expect one stage to simply end and another to begin. On the contrary, anticipate finding yourself dealing with issues associated with more than one stage at any given time. In addition, the stages vary in length and intensity, depending, for example, on the length of the terminal illness and whether there are any significant periods of remission.

Stage 1: Crisis

The diagnosis of a terminal illness or a potentially terminal illness creates a crisis for the family. It disrupts the family’s equilibrium, just as a rock thrown into the middle of a still pond disrupts its equilibrium. Factors that affect how you may react at this stage include

  • The history of as well as the current status of your relationship with the ill family member
  • Whether the loved one is a spouse, a parent or a child.
  • What your and the patient’s past (and current) roles in the family are.

Anxiety is the most common initial reaction to the news that a family member is terminally ill. However, if your relationship with the terminal family member has been strained or alienated, you may also find yourself feeling guilty, resentful, or angry. If the terminally ill person is a child or young adult, anger at the seeming injustice of early death may be the dominant emotion shared by family members at this initial stage.

At this first stage of the new grief, all adult family members benefit from guidance issues such as what to expect in terms of their own emotional reactions, whom to seek support from, whom to share memories and emotions, with, and what to expect when they meet with the dying loved one and other family members.

Stage 2: Unity

The reality of impending death has the effect of pressing family members to put even longstanding complaints or grudges on hold as they pull together to move into this second stage of grieving. This may be no problem for family members who have no conflicted feelings or unresolved issues of their own with the loved one, such as favored children. On the other hand, if you feel that you were always a less favored child (or the family scapegoat), you should not be surprised if you experience a complex combination of emotions even as you strive to be a good team member.

In Stage 2, the needs of the dying become paramount. A major issue for all family members in Stage 2 is how they will define their roles with respect to one another and the terminally ill member. If they do not give some thought to this—a situation that is quite common—they may quickly find themselves having regressed into roles they played years earlier, as children and adolescents, but that they would not consciously choose now.

In this second stage of the grief process the family has much work to do, including:

  • Choosing and working with a medical team
  • Navigating the social services maze
  • Pursuing and qualifying for entitlements
  • Ensuring that critical legal work (wills, living wills, and so on) is completed

How the family organizes itself so as to complete these tasks can have powerful psychological and effects on each member, depending on how comfortable each feels with the role he or she is playing.

Stage 3: Upheaval

The family will eventually enter this third stage of grieving if the process of dying goes on for some time, which it typically does today. At this point, the unity that characterizes Stage 2 begins to wear thin as the lifestyles of all involved, whether they recognize it or not, gradually undergo some significant changes. Whereas thoughts and feelings about these changes may have heretofore been put on the back burner, they can no longer be suppressed and begin to leak out. One such feeling is ambivalence, meaning mixed feelings that many people experience when the process of dying evolves into a protracted one in which the loved one’s overall quality of life slowly deteriorates.

Emotions such as guilt, anger, and resentment are likely to emerge in Stage 3. At this stage the most important issue becomes being able to communicate honestly with other family members and with trusted loved ones. Suppressing thoughts and feelings about such upheavals can lead to strained relationships and eventually can cause the entire family to fall apart.

Stage 4: Resolution

As a family moves into the fourth stage of grief, the terminally ill loved one’s health is typically marked by gradual deterioration, punctuated perhaps by periods of stabilization or temporary improvement, and the effects of the prolonged grief process can and should no longer be ignored.

As they enter Stage 4, family members often find themselves having more memories—both good and bad—of past experiences which usually reflect relationships with the patient, these important memories are different, typically telling the story of how family members have viewed their place and role in the family. Often they point to unresolved issues. Some of these memories may evoke feelings of joy or nostalgia; others, however, may evoke anger, jealousy, or envy. Others still cause feelings of pride or, alternatively, of shame and embarrassment.

Stage 4 represents an unprecedented opportunity, if families only choose to seize it. It is an opportunity to resolve longstanding issues, heal wounds, and redefine one’s role in the family—indeed, to alter a family member’s very identity. Every family, as they say, has its share of skeletons in the closet. It is in this fourth stage of the grief process that the skeletons can be brought out of the closet, exposed to the light of the day, and cast forever into oblivion.

In particular, Stage 4 is a time when the following can be addressed and resolved:

  • Old rivalries and jealousies
  • Long-held resentments

These two issues stand in the way of families being able to bond together as strongly as they could and love one another unconditionally. Some family members, however, may react to this opportunity with anxiety instead of with enthusiasm. Rather than seizing the opportunity, they may try to avoid facing these issues. However, facing up to them offers the best opportunity for the family as a whole to move on together to a happier future. In this way the process of family grief can set the stage for growth and renewal for all involved.

Stage 5: Renewal

The final stage of grief actually begins with the funeral and the celebration of the life of the now-lost family member. This is a time of mixed emotions, to be sure, including both sadness and relief. If the family has successfully negotiated the previous four stages, however, this final stage also opens yet another door: to collective as well as personal renewal. It can be a celebration of life as much as it is a marking of a loss. It can be a time of creativity and planning, as the family decides, for example, how it will commemorate anniversaries and birthdays.

As much as Stage 5 is a time for remembrances, it is also a time for looking forward, to revitalized relationships and to new family traditions.

Adapted with permission from Saying Goodbye by Barbara Okun, Ph.D. and Joseph Nowinski, Ph.D. by arrangement with Berkley Publishing Group, a member of Penguin Group (USA), Inc. This article can be found here. 

Palliative Care

Palliative care: Symptom Relief During Illness

Palliative care can provide pain and symptom relief, support, and coordinated, holistic care for people who have serious illnesses. If you or a loved one has a serious or life-threatening illness, you might have thought about palliative care. To understand palliative care and how it can help relieve pain and improve quality of life, consider the following questions.

What is palliative care?

 Palliative care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness. A multidisciplinary care team aims to improve quality of life for people who have serious or life-threatening illnesses, no matter the diagnosis or stage of disease.

Palliative care takes into account your emotional, physical and spiritual needs and goals — as well as the needs of your family. It’s offered alongside curative or other treatments you may be receiving.

Who can benefit from palliative care?

 Anyone who has a serious or life-threatening illness can benefit from palliative care, either to treat symptoms of the disease, such as pain or shortness of breath, or to ease the side effects of treatment, such as fatigue or nausea.

Palliative care may be a good option for children and adults with a serious illness who need help:

  • Managing symptoms
  • Addressing concerns that matter most to them
  • Understanding what to expect with their care plan
  • Understanding programs and resources available to support them throughout their illness
  • Understanding the pros and cons of treatment options
  • Making decisions in line with their personal values and goals

How does palliative care work?

 Palliative care can be provided throughout treatment for a serious illness — whether you or your loved one is being treated in a hospital, at home or in a care facility. This specialized medical care is provided by a team of doctors, nurses and other specially trained people. They work with you and your family to create a care plan to prevent and ease suffering and improve your daily life. This plan will be carried out in coordination with your primary care team in a way that works well with any other treatment you’re receiving.

A palliative care specialist can also help you or your loved one communicate with doctors and family members and create a smooth transition between the hospital and home care or nursing facilities. The palliative care team will educate you and your family members about what to expect and schedule routine meetings to discuss ongoing care throughout the course of your illness.

What are some real-life examples of palliative care?

 Here’s one example of how palliative care works: You have a history of heart failure and are increasingly short of breath. This makes it hard for you to do even simple chores around the house. You live at home with a partner who also has health problems. You find that getting all of the care you and your partner need is becoming more difficult, and you’re not sure how to plan for the future. This has been stressful for you and your family physically, psychologically, spiritually and financially.

Your primary care doctor suggests that you consider palliative care and explains that a palliative care team will work with you to determine how to ease your symptoms and improve your quality of life.



This article and others like it can be found here or by visiting

Preparing for the Worst, Hoping for the Best 

“Allan has cancer”, was all the voice said before dissolving into uncontrollable sobs.

Every now and then, I get pulled back into harsh reality when a grief once again touches me personally.  Al and Susan have been friends of mine for almost 30 years, one of these comfortable relationships where you don’t see someone for many months, but always pick up exactly where you left off.  But now, 40 years after exposure to asbestos in the workplace, Allan has mesothelioma.

It is almost superfluous to say that most people are ill prepared for the final days of their lives.  Even professionals such as health care providers experience uneasiness, and when you consider issues such as DNR (Do No Resuscitate) orders, and the legal, moral and ethical implications of patient and family choices, it is hardly surprising.

I went to visit Al this week. We had a ball, reminiscing and laughing for an hour or two about some of the stuff we’ve shared.  I couldn’t imagine us sitting there, morbid and sad, enduring the lonely silence of not knowing what to say, because our relationship has never been like that.  It has been fun.  So why change it now?  Why treat him any differently than I have before.

We had our serious moments, of course, and “denial” was not the agenda but I learned something very significant. I think we need to decide if we are “living with”, or “dying from” our diseases.

Both concepts have merit.  In movies the last minutes of life are so obvious.  The music, the profound words, the meaningful glances all herald the impending moment of demise.  In real life many people live with disease for years before dying of them.  Most do not tend to die immediately, because sophisticated medical technology can keep us alive for so much longer.  Yet, all too often despite the obvious, the moment to say goodbye comes all too quickly and unexpectedly.  The chance to take that last trip, or get one’s affairs in order, or reconcile some outstanding issue we have been living with all slip away unfulfilled.

It is only when we realize we are dying that we turn our attention to living.

The following are some principles I have tried to practice and encourage when sharing with someone who is dying.

  • Spend time with people who are important to you.
  • Call or visit an old friend, and tell your story to those who will live on
  • Accept compliments and some gratitude.       Don’t make people wait till the funeral to say it.
  • Say “I Love You”, “I’m sorry”, “Forgive me”, and “I Forgive You” often.
  • Right old wrongs.
  • Forgive yourself and seek to make things right in your own heart.
  • Take a last trip or two.  Do things you’ve      always wanted to do.  Find ways to      spend your own life insurance.
  • Create a legacy for those you care about – a letter, a tape, a video for children      and grandchildren, or one for the significant dates in the future like,      graduations and weddings which you may not see but at which you can be      heard.
  • Say goodbye (or “until we meet again”)
  • Be at peace with the end to come and the uncertainty of when it may occur

To that personal list, as a professional I would add the following:

  1. Decide specifically about your wishes for issues such as: DNR, Hospitalization and end of life care so that your treatment will be as close as possible to what you want.
  2. Choose someone (power of attorney) to make decisions for you if you are too sick to make them for yourself.
  3. Write a will, and get all the legal ‘stuff’ about finances and property in order
  4. Arrange your funeral.  Talk to a funeral director about details.  If you don’t think about it now, others will have to when they feel least able to.  Plan your own funeral service and what you’d like your family to hear at that memorial.  Besides it’s a great way to get the last word.

It is important to balance the need to prepare for the worst with hoping for the best. We do not want to abandon hope or give up on the person. Miracles happen, remissions can occur, and there can be a host of possible outcomes in every situation.

On the other hand, whether we acknowledge it or not, we all die, and it is a wise person who lives their life, however long or short, with that certainty in mind. As the Book of Psalms reminds us, “Teach us to number our days that we may get a heart of wisdom.” It is when we finally confront the fact that life at it’s longest is still very short that we learn what are our priorities and what is really important.





This article, “Preparing for the Worst, Hoping for the Best” was found on the Centre for Grief Journey’s website, and can be found here.

Ten Facts About Hospice Care You May Not Know

Some people have the wrong idea about hospice care. They think that hospice is only about dying and that hospice is the place you go when there’s nothing more to be done. Nothing could be further from the truth. Hospice helps people with a life-limiting illness focus on living as fully as possible for as long as possible.

The National Hospice and Palliative Care Organization is working to people understand that hospice brings comfort, dignity, and peace to people facing a terminal illness. Hospice provides support and care for the family caregivers, too.

Last year, 1.65 million dying Americans were cared for by hospice. Yet, there are some important facts about hospice that people don’t know. And this may be keeping people from getting the best care possible, when they need it most.

  1. Hospice is not a place—it’s high-quality care that focuses on comfort and quality of life.
  2. Hospice is paid for by Medicare, Medicaid, and most insurance plans. Fear of costs should never prevent a person from accessing hospice care.
  3. Hospice serves anyone with a life-limiting illness, regardless of age or type of illness.
  4. Hospice provides expert medical care as well as spiritual and emotional support to patients and families.
  5. Research has shown that the majority of Americans would prefer to be at home at the end of life—hospice makes this possible for most people.
  6. Hospice serves people living in nursing homes and assisted living facilities.
  7. Hospice patients and families can receive care for six months or longer.
  8. A person may keep his or her referring physician involved while receiving hospice care.
  9. Hospice offers grief and bereavement services to family members to help them adjust to the loss in their lives.
  10. Research has shown people receiving hospice care can live longer than similar patients who do not opt for hospice.

If this information about hospice surprises you, take the time to find out more. The best time to learn about hospice is before you or someone in your family is facing a medical crisis.

Hospice makes the wishes of the patient
and family caregivers a priority. 

To read the article in full, you can find it here.

Acknowledging You Need Assistance

As caregivers, we sometimes become so involved in the day-to-day efforts to keep things going we may forget to let others know we need additional assistance with providing care, or just need a break from the work of caring for someone.

caregiverSome ways to make your needs known include:

  • Work Options. If you are a working caregiver, it is important to discuss your needs with your employer. Telecommuting, flextime, job sharing or rearranging your schedule can help to minimize stress. Increasingly, companies are offering resource materials, counseling, and training programs to help caregivers.
  • Involve Older Children. Older children living at home may be able to assist you and/or your loved one. Such responsibility can help young people become more empathic, responsible, and self-confident and give you needed support.
  • Ask Others to Help. You can and should ask other family members to share in caregiving. A family conference can help sort out everyone’s tasks and schedules. Friends and neighbors also may be willing to provide transportation, respite care, and help with shopping, household chores or repairs.
  • Create a list of things that need to be done, such as grocery shopping, laundry, errands, lawn care, housecleaning, or spending time with your loved one or friend, and put it on the refrigerator or near the front door. If someone says, “let me know if there is anything I can do to help” you can point to the list.
  • Take a break from caregiving. Even if it is only 15 or 20 minutes a day, make sure you do something just for you.
  • Exercise. Whether it is a 20 minute walk outside or taking a yoga class, exercising is a great way to take a break, decease stress and enhance your energy.
  • Eat healthy. Your health and nutrition is just as important as your loved one’s, so take the time to eat well. If you are having difficulty doing that, ask for help and get others to fix meals for you.
  • Subscribe to caregiving newsletters or list serves for support.
  • Attend a support group for caregivers. Check with your doctor, hospice or local Area Agency on Aging for groups that meet for this purpose.
  • Seek professional help. Many caregivers have times when they feel lonely, anxious, guilty, angry, scared, frustrated, confused, lost and tired. If you feel like these feelings are overwhelming you, call your doctor, hospice or another community resource for help.

This article and more can be found at the National Hospice and Palliative Care Organization website at



Hospice Care Used More, But Often Too Late

1015 hospice

Twice as many elderly people died in hospice care as in a hospital or nursing home compared with a decade ago, but hospice is often treated as a last resort — and used too late to benefit patients and their families, says a study released Tuesday.

The researchers examined Medicare records for 840,000 people 66 or older who died in 2000, 2005 and 2009. They found intensive-care use, hospitalization and the rate of health care transitions increased in the last month of life before patients entered hospice. Length of stays in intensive care also increased.

Hospice care aims to address the physical, emotional, social and spiritual needs of dying patients and their families and to control pain, says the study’s lead author, Joan Teno, professor of health services policy and practice at Warren Alpert School of Medicine at Brown University in Providence.

But this study shows that “for many patients, hospice is an add-on to a very aggressive pattern of care during the last days of life,” she says. “We suspect their needs and their families didn’t get the support they needed.”

More than a quarter of hospice use in 2009 was for three days or less, and 40% of those late referrals followed a hospitalization with an intensive-care stay.

“I think every person needs to make a decision based on what is important for them in the last months of life,” says Teno, a palliative care physician at Home and Hospice Care of Rhode Island. “All too often, I see doctors take aggressive approaches with treatment and only talk to patients about hospice when there is futility.”

The study, published in The Journal of the American Medical Association, appears with an editorial calling for an end to the aggressive intensive care and hospitalization at the end of life by improving communication between patients and physicians to determine what patients’ want and by considering “a threshold of likely benefit and life expectancy for an ICU admission.”

“If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process,” write physicians Grace Jeng of the Yale School of Medicine in New Haven, Conn., and Mary Tinetti of the Yale School of Public Health.

“This country has invested heavily in building up ICU centers over the past 20 years; that pathway brings in the most money for doctors and hospitals,” says study co-author David Goodman, director of the Center for Health Policy Research at Dartmouth’s Geisel School of Medicine in Hanover, N.H.

But, he adds, “that’s not what patients really want. This needs to be about patient autonomy. By investing more in hospice and palliative care, we can truly meet the final wishes of our patients.”

Going to intensive care or moving a patient into a nursing home in their last days is spiritually disruptive to a person trying to find closure, Teno says, and also disrupts sleep and alters medicine schedules and diet.



This article was written by Janice Lloyd on February 5, 2013 and can be found in its entirety at