Chapter 4

Understanding Your Patients/Clients


Common Experiences

Most of your patients and their families have similar experiences throughout the course of a final illness. They will likely have experienced a 'roller coaster' of their highest highs and lowest lows that are life defining. Such experiences encourage them, their families and, perhaps, their care providers to re-define their life priorities with more emphasis on putting their energies into nurturing the relationships they value most.


   Most of them will say that looking back on their lives, they have discovered that it was these relationships they have had that were most important to them and have provided the greatest comfort in their last months. It was not the “things” they have accumulated or the accomplishments they have achieved but the people they have loved that has made the greatest difference. As care providers many family members feel that they learned to be a better child, spouse, parent, friend, and neighbor.


   On the down side of this roller coaster are often experiences such as a lack of diagnosis for many weeks if not months, tests and tests and more tests (often painful or at least uncomfortable), uncertainty about the future, successful and failed treatments (medical and alternative), painful and uncomfortable symptoms and the final news that they have a terminal illness. For the lucky few they may have also been referred early on for adequate pain and symptom control through a program offering the hospice palliative philosophy of care.


  The patients, their families and their professional and volunteer care providers will all experience a range of human emotions including laughter, tears, silence, rage, joy, fear, love, awe, horror and touch.


Individual Differences

Just as there are common experiences for most of your patients and their families there are also individual differences. A person's age, birth order, culture, gender, historical and family backgrounds, religion, their previous experiences of the death of loved ones, their social roles (a valued or devalued member of their community), the degree of unfinished business in their lives, other recent losses, their personal beliefs and personal wants and regrets all impact their experience.


   To truly help them as individuals requires two levels of understanding. In the short term, concentration on their basic, self-expressed needs is most important. There is little good in trying to help them deal with cultural isolation if there are experiencing horrible pain. Their top priorities must be met first and this usually includes relief of unbearable pain and nurturing existing relationships so the person is not alone or feeling as if they are a burden.


   After the immediate needs are met, and if you have a longer time with patients (months as opposed to days or a few weeks) then you may be able to help them with other needs. You may be able to bring together their family to work out long-standing difficulties. You may be able to draw in their spiritual community to help them with their spiritual needs. You may be able to help them arrange some of their legal, financial and funeral preparations affairs.


   At all times, you can model the hospice palliative care philosophy of care so that others can learn by your example.


People's Fears

In helping someone with their immediate needs, it is important to start by understanding their fears. They may be so afraid of inadequate pain control, yet convinced by family history that it is inevitable and they just have to suffer through, that they will not know to ask for help with their pain. People of some cultures in particular have this stoic attitude as part of their family history. To help them meet their most basic needs, therefore, it is important to understand their individual fears.

People do not experience all the following fears but they may experience one or more of them at different times during their illness. Understanding these fears makes it easier to provide them that extra minute or two of compassionate care that so many people crave.


People may fear having unbearable pain


Most people have seen their loved ones experience terrible pain before they died. They expect the same to happen to them. If you have ever seen something curl up in a fetal position, rock back and forth and pray to die because the pain is so great, you will understand why this fear of pain looms large in people's minds. Let them know that hospice palliative care's first credo is the relief of unbearable pain and symptoms and ensure their pain and symptoms are well controlled as soon as possible. Once you have shown them what is possible, they are more likely to believe you about others aspects of care that you can help them with. If you are a volunteer, advocate as strongly as possible that the proper medical care providers get involved so that the person's immediate suffering is relieved. No one needs suffer unbearable pain and symptoms. No one.


People may fear being a "burden"


Often the second most common fear of patients is their sense of being a burden to their loved ones and others. They would rather suffer in isolation in their own homes than let their families know they need help and support. They would rather lay in a hospital bed in extreme pain than “bother the nice nurses.” They would rather go without food in the fridge than ask a neighbor to pick up a few groceries. They would rather soil their pants than ask a family member's help in going to the bathroom. And, in fact, many would rather die than lose their 'dignity' by requiring toileting help at all.


   These people need reassurance that dignity is not defined by how much help one needs to go to the bathroom. They may need someone to talk to their families about these fears. They need reassurance that providing care and support may be difficult sometimes for family and friends but that they would much rather provide that care than see the person go without. They need to understand that juggling time management priorities for families is not the same thing as wishing the patient was dead. They need to be reminded that caring for one's family and friends is part of daily life; not an exception to living. They also need to be reminded that they received wonderful benefits from helping others in need during their life times so why would they think to take the opportunity away from those they love most.


People may fear how they look throughout their illness (their body image)


As a society we are very critical when it comes to how people look. For example, we often tell young girls and women that they need all sorts of make up, special hairdos, particular clothes to look beautiful. When we are told that someone is ill in hospital or at home we immediately tell them it doesn't matter if they hair hasn't been washed in a week, or that they are not wearing their usual make up, or that their nails have not been cared for. We say, “You look beautiful just the way you are.”

Sick people do not become stupid because of their illness. They know they look “sick” and they know instinctively that they would “feel” better if they looked better. So helping them with their personal hygiene, washing and setting their hair, applying makeup that is not sensitive to their medical treatment (e.g., some makeup reacts negatively with some medications), doing their nails (hands and feet), and letting them wear clothes in which they feel most comfortable are all wonderful gifts of care.


People may fear the progress of their illness


Many people fear how their illness will progress. Will it take too long (and therefore be a greater burden to their family)? Will it be painful? Will they end up looking like concentration camp victims?

   This last fear of becoming severely emaciated is a modern fear. Before World War II and those horrible photos of concentration camp victims, people expected that as their bodies slowed down they would eat less and naturally lose weight. Perhaps they did not “look” great, but there was no stigma attached to this natural process of their bodies slowing down. After the war, the images of how much the prisoners suffered in these camps forever became tied to the look of dying people. The stigma is very strong and people fear their emaciated look will frighten themselves but more importantly their families.


   This is where your reassurance and planning come in. Concentration camp survivors and victims did not live in their own homes. They were not surrounded by loving families. They could not wear comfortable clothes and receive food and drink upon request. They had no recreational activities or family events to look forward to. They were completely isolated from anything that might be perceived as compassionate care.


You are there to remind the patients that their grandparents and great grandparents experienced the same natural slowing down of their bodies as they will likely experience. You are there to help them plan to have different kinds of clothes to cover how they look. You are there to help families understand the natural process that is going on and how they should try to avoid comparing their loved one who is ill with the historical photos they have seen. For those who are there daily, this will not be very hard to do as they will see the changes happening very slowly. For those who may not see the person for several weeks or months the difference in how the person looks will be more dramatic. Help prepare them for how the person has changed and, perhaps, tell them the person who is ill is not different inside other than, perhaps, a bit wiser about the importance of relationships versus the importance of how one looks. Remember the story of Mr. G earlier in this book to remind yourself of how a six-year old granddaughter reminded everyone of the importance of her grandfather in her life.


People may fear losing control and being increasingly dependent on others


This fear partly relates to be a burden to one's family. However, some people fear losing control and being dependent even if they families and care providers have no sense of burden at all. The person who is ill may have been used to being in control most of their lives and find losing that control immensely painful and frightening.


  Above all else they need opportunities to feel in control during uncontrollable times. For example, my grandfather, at the age of 92, when he was dying decided one day that he no longer wanted to be presented with food. He only wanted water with some sugar in it (a sweet tooth to the end!). He had eaten very little over the previous weeks and really did not feel the need to eat anymore. He was dying and knew it and did not want the taste or smell of foods in his bedroom anymore.


  Those of us caring for him (two of his daughters and myself) wondered if this was a good idea at first. We believed, as so many do, that eating will give you health and would help my grandfather live longer. After a short discussion we recognized that he really was near his end and to try to force or coerce him to eat was just wrong. So we agreed with his request.


  The next day when I was in the room with him he said, “I'd like a ham sandwich, please.” When I told my aunts they wondered if he was having short-term memory loss and that he forgotten about his request the previous day. We brought him the sandwich, however, and he took one bite and asked us to take it away. He said, “I just wanted to see if you would give it to me.”


  He was a conservative businessman who had been in control of his business and family for all of his adult life. He was used to being in control and his illness had robbed him of much of that control. This one act helped him regain some personal sense of control and the beam on his face reflected the inner joy he had in having some of his control back.


  Anytime you can give a patient or their families a sense of control in a period where so much control is taken away, you are providing the gift of care. Even the flow of information can be based on this simple principle. If you have information that may be difficult or discomforting for the person, offer them control over when they will hear the information.


  For example, you might say, “You have to decide soon about whether or not you are going to have that treatment the doctor spoke to you about yesterday. Would you like to discuss your decision now, later this afternoon or perhaps tomorrow morning?” There are few decisions that cannot wait 24 hours and by giving the patient 3 choices from which to choose they have a sense of control during difficult times. Many just want a bit of time to prepare for difficult news or decisions while others want to know immediately and decide immediately. That sense of control gives them not only some emotional support but also, perhaps, more self-confidence to withstand whatever will happen next.


People may fear dealing with the unknown


How often have you heard someone say after finding out a diagnosis that they are “relieved” to finally know what they are dealing with? My mother went through months of tests and uncertainty before she found out she had terminal cancer.


   During those months of uncertainty, however, she was often made to feel as if her condition was “all in your head.” They did the tests more to “soothe” her concerns than they did because they believed something was wrong. Dealing with the unknown is very debilitating physically, emotionally and even spiritually.


  During times of uncertainty, families and care providers can help the person reclaim control over other aspects of their care and their lives. You cannot erase the uncertainty but you can ensure that they are not alone with uncertainty for long periods or that their concerns are unwarranted. Because no one knows what they are dealing with, the uncertainty affects everyone.


  This is the time when nurturing natural and loving relationships can be most important. You may have to wait until two or four or six months before you know what is wrong or what is likely to happen, but those months can be extraordinarily special if you use them to create memories of love, joy, laughter, closeness, hugs and adventure.


  These are also times when a person may choose to research their condition themselves or ask you to help them find out what might be happening. The Internet has opened up a whole world of information that used to be limited to only a few professionals. When doing the research or helping someone do it, ensure you are using websites that are known for excellent information. Determine which sites have traditional information and which may be suggesting alternative and complementary treatments. Check the resources at the end of this book for some examples. Websites change regularly so use your browser to search for new ones as well.


People may fear losing loved ones


It is not just families that begin to grieve the loss of their loved one before they die. The patient also begins to grieve the loss of their future without the people they love. Some people may be of an age or experience where death is not as traumatic as for others. For many, however, saying goodbye to loved ones stretched over weeks and months takes its physical and emotional toll. Recognition of what professionals call “anticipatory grief” is a beginning to help minimize some of the effects. As long as a person is living they can be encouraged to fulfil their role as spouse, parent, sibling, grandparent and friend. Family members can be encouraged to resolve outstanding issues understanding that not all will become resolved. Each person involved is given the gift of time to ensure that they say what they have wanted to say, that they hold the person for as long as they can, that they create new memories of love and that they have few regrets upon the person's death.


  For the patient, they are given this gift of time to do much of the same but also to get their affairs in order, to give gifts to each and every person they love whether the gift be something they want to give them (e.g., special books, artwork, jewelry, etc.) or the gift of stories either written out or given verbally.


  This is a time when the patient can talk about their hopes and dreams for their loved ones. Although families often don't want to talk about the future without their loved one in it, the patient does. They have things to say, advice to offer and dreams to share. These are often very emotional conversations but what a gift they are.


People may fear causing loved ones fear and suffering


In a similar vein as worrying about being a burden, feeling like you will cause your loved ones fear and suffering is often very difficult for patients. Not only do they not want to be a burden, they do not want their final illness to cause discomfort, fear or suffering. To watch a child cope with a parent's terminal illness is one example. To imagine the concern a husband of 50 years has when he is dying and how his wife will cope is another. The patient almost believes that it would all be so much easier for everyone if they just died quickly.


   However, it is not easier - it is different. People who die suddenly leave behind families and friends who never got a chance to say goodbye. They never got a chance to resolve any conflicts. They are often left with various degrees of guilt for things unsaid or undone. They may not have to face the days, weeks or even months of day-to-day care, but they also get little support after a week or two from their family, friends and colleagues to “get over” the death. When a person lives a longer time through their last illness, their families and friends are likely to receive more support for their emotional roller coaster.


   There is no “better” way to die. Each has its own consequences. For the patient, however, dying suddenly may feel like it is easier and, for them, it might be as they do not have to watch their loved ones cope with the illness. They do not have to try and help them prepare for a life without them.

   On the other hand, if the patient dies quickly they also lose out on the opportunity to say the things they have always wanted to say; to do the things they may have put off for too long and to live in the comfort of more hugs, moments of genuine love and experience the transition from life to death to after death in all its possibilities.


   Your role becomes helping them identify what is possible rather than on concentrating on the negative aspects of their circumstances. Help them be hopeful for what they can accomplish today rather than concentrate on what they can no longer do. Help them identify how they can continue to make a difference in the lives of their loved ones even when they may feel that their loved ones would rather have them die more quickly.


People may fear isolation and abandonment


Many people fear being left alone and abandoned at the end of their lives. This is especially true of surviving spouses and single people without a lot of family close by. Reassurance that they are not alone is not enough. They have seen, especially many women, all too often where their friends have been abandoned by their loved ones either intentionally (dysfunctional relationships) or unintentionally (family and friends live far away). The latter is most common when a couple moves from where they have lived for decades to “retire” to a different community far from those who love them most.


   In my books Caring for loved ones at home (a basic home nursing guide for family and friends) and Family hospice care (a pre-planning and hospice palliative care guide) there is a chapter on how to set up support circles to ensure that no one is left alone at the end of their lives. The chapters provide specific planning steps to take to provide people with a circle of people who will be there around the clock if necessary while minimizing the intrusiveness of such constant care. People do not have to be alone but it takes some thoughtful planning and the hospice palliative care philosophy to make it work best for everyone involved.


People may fear having had a meaningless life.


When we are younger, we presume to know more than we do and we believe we have all the answers. We have a “clean slate” before us to plan our lives any way we think best. We can change careers (the average is now between 3-5 careers for each of us), change our families and friends, change our location to almost anywhere in the world and change our personalities.


   At the other end of life, we may feel “stuck” with our history and all the decisions we have made. We may feel “stuck” with the family and friends that we have now (no time to make new ones) and we may feel “stuck” by where we live. Mostly, we may feel dissatisfied with how “it” (our life) has unfolded. We probably thought we had more time to do things differently. We may have regrets and we may feel guilt over past actions.


  Almost all of us will have some of the above. What can you do as a supportive care provider?

   There are two areas of our lives we have control over: how we focus on our past and what we do with the remainder of our present and future. You can help the patient review their past looking at both the good and the bad. Helping them record some of their life stories as a family heirloom is one way to help. (see: Recording Your Life Stories). You may help them write to, or speak with, their loved ones to recognize the good and the bad of their relationships and the patient's hopes and dreams for their loved ones' futures. You can help them use their remaining days to their utmost so that each day offers opportunities for them to create lasting memories of love, joy, adventure and meaning.


  You can also tell the person how they have changed your life. Regardless of how someone has lived, it is how they live in their last months that offers them a unique opportunity to teach - their life's wisdom as they have learned it. Each person I have cared for offered me wisdom in this way.


  My mother (53 years old when she died) taught me that finding a kindred spirit with whom to share my life with was my most important task. She had found hers and that helped her through the death of their first born child, moving to a new country without speaking the language or having a job waiting for them, raising children in the difficult years of the 60s and 70s when so much of society was changing at breakneck speed and more.


  My grandfather (92 years old when he died) taught me that one is never too old to change. At the age of 78 he went to each of his 9 surviving children and apologized for any mistakes he made in raising them. He knew he had been too strict and that work too often took precedence over his family. He asked for their forgiveness and hoped that they would not make the same mistakes with their children.


  My father (he was 59 when he died) sat me down one day and told me with tears in his eyes “No one is better than you son. You must believe enough in yourself to understand that. But, at the same time, you must always know that you are not better than anyone else either. We are all equal.” He taught me that we each have gifts to share and that, thankfully, we do not all have the same gifts. It is finding out how we complement each other that we end up making the greatest difference in the lives of others and ourselves.


  These are incredible lessons to learn. All of them, and the many which followed, taught me to concentrate my life on nurturing relationships because, at the end of life, they are all that will sustain and comfort you. They also taught that it is never too late to try and nurture past relationships and even have a few new ones with care providers who genuinely care for you. Your nurturing may not always be accepted at the moment, but the effort will have a lasting impact on everyone you know and love.


  Each of these fears is real for the people who have them. It is not enough to brush them aside because you have seen them too often before. Each must be addressed to the person's satisfaction as much as possible. These fears are often based on experiences with the deaths of loved ones who were isolated, or perceived as burdensome or who felt a real lose of control over their life and death.


  Once fears are out in the open, their power diminishes and alternative resources can help to overcome the fears. As long as they are private, their effects will be felt. Therefore, from these fears we can identify some basic human needs that shared by all of us.


People's Needs


People's needs are individual yet there are trends of needs that most people have including the need to feel safe and loved. The following list provides an extensive sample of the types of needs that people have. Helping people meet their needs deals directly with helping them cope with their fears.


  Most people need their physical, emotional, spiritual and information needs identified and addressed as best as possible.


This is the starting point of all care. Begin with the most pressing issues. Once they are addressed you will have built a foundation of trust. If you can help someone meet their basic needs, they are more likely to let you help them with other needs.


Most people need loving people they already know around them.


We sometimes isolate patients from family, friends and neighbors with our policies, procedures and routines. We ask them to leave the room when we examine or provide basic personal care rather than include them (if they want) so they can learn from you and provide similar care themselves. In our desire to be helpful and 'friendly' we may exclude people who know the patient well from providing support or even being present to the person. Our need to be present may be a selfish one if it precludes others who know and love the person from being present. If our air of 'professionalism' infers that loved ones are incompetent to feed, bathe, or clothe the patient then we prevent them have having wonderful, intimate moments of profound care and love. We need to ask the patient whom they want in the room with them.


   Most people need practical help with daily events and tasks.

Dying does not provide an excuse to stop paying the bills, putting the garbage at the curb on pick up day nor shoveling the snow from the driveway or having the groceries stored away and cooked. All of the mundane tasks of living still require attention. Income tax returns still need to be filed, the banking needs to be done, the paper work (insurance, disability payments, notification to various agencies, correspondence, and family bookkeeping still need to get done). The person will likely have some family members deal with some of these things but may still require help from professional and volunteer care providers for other tasks.


Most people need their life valued.


People continue to need to be seen as Mary or John rather than as a patient with cancer or heart disease. This is most difficult to do when the patient:


  1. has disfiguring tumors,

  2. reminds us of a loved one who has died of a similar condition,

  3. is our age

  4. has a condition that we would “rather be dead than have…”

  5. As difficult as it may be, helping people to see that they are "whole" regardless of their illness is an invaluable gift and our most powerful skill in helping them live fully until they die.


People need a safe place to die.


Most people would prefer to die at home surrounded by familiar people and things. The home is where they feel safest and most under control. My mother very consciously, and with great physical effort, took one last walk around her home weeks before she died. She knew that soon she would be bedridden and not have a chance to do this so she went into every room and had a good long look and, quietly, said goodbye.


  Some people, for whatever reason, cannot die at home but they still need a safe place to die. This can be in someone else's home (relative or neighbor), in a long-term care facility or in the hospital. Each place must provide the hospice palliative care philosophy of care in order to provide the person and their family with the  physical, emotional, spiritual and information care they deserve. When that level of care is not possible, then the place is not safe for the patient and their family.


  Most people need meaningful activity centered mostly in typical situations rather than grouping people who are dying together.


  Sometimes in our desire to help people who are dying we bring them together in a separate location to receive support, activities and comradeship with people going through similar circumstances. Often

participants in these programs say this is the highlight of their week.

   When we do this to the exclusion of other more typical activities we are separating them from the community within which they have always lived. Each time we introduce new people into their lives it is someone to whom they have to inevitably say goodbye. If these new people are also dying, then the goodbyes are increased dramatically. Each new visit to the group will likely involve news that someone they know has died.


  That is not to say that such programs should close down. Such programs provide support to both the patient and their families but they should not be the highlight of a person's week. The highlight should be times when they are with people they already know and love and to whom they know they will have to say goodbye.


   Their “free” time should also be filled surrounded by people within their own communities who they may already know and, if not, who are likely to be able to drop by for tea or a visit when they are in the neighborhood. For example, many respite or day programs offer arts and crafts and other activities. People can also be supported to go to their local community centre, art guild, hobby group, and the card-playing club that they have traditionally belonged to and used. Rather than limiting someone to bowling or mini-put in a day program at the local hospice or seniors' complex, encourage them to go to their golf club, local bowling alley or sports centre to be with others they already know. Provide them with the physical and personal support they need to feel comfortable using their own community resources.


The advantage of using local facilities is that the people who work there will become accustomed to customers who are not all healthy and well. They will learn invaluable customer service skills while family and friends, neighbors and club members learn how to be supportive to someone who is ill. Even if the person can no longer actively participate, they can still enjoy the camaraderie of being with people they know.

At some point they may well decide they do not want to participate in such activities but rather have their club members over to their home or take the opportunity to say a final 'goodbye' to them on their last outing out.


  That is not to say that some people would not enjoy talking with others who are dying and to share their experiences and learn from each other. That is a more difficult goal than just ensuring they are at the day program every Tuesday afternoon.  We must be thoughtful about the consequences of our care so that we do not congregate people who are dying to make our professional or volunteer work easier. If the patient definitely benefits from respite or day programs, that is wonderful. If they would rather be doing something else, try to see how their needs can be accommodated.


Most people need competent health care.


I have said several times that inadequate pain and symptom control is inexcusable. Beyond that, competent health care looks at a person's other needs to ensure that they are addressed and managed as best as possible. People working in health care who are uncomfortable being with someone who is dying need either to acquire the knowledge and skills to become comfortable or ask to be assigned to other patients.

When incompetent care is given to a patient, it is up to the colleagues to advocate for the patient. We must never expect that patients and their families have the knowledge and skills to advocate well enough to get the care that they deserve. That is up to the professional care providers within the health care system. If the professionals cannot, for whatever reason, do it themselves then they must help the family speak to someone within the system who can help them.


Most people need valued social roles preserved.


Everyone has fulfilled valued roles in their lifetime: as a family member, worker, leader, volunteer and friend. People can always be helped to create new valued roles as a wise person, advisor, or storyteller. Someone who feels their life has been meaningless can be helped to feel like they have had, and can still have, a valued social role worthy of their dignity. As people's energy and abilities decrease over time, they may need assistance in helping to remember their real contributions to families, friends, their community, their workplace and spiritual community. You need to be specific so that the patient understands you are not just trying to make them feel good but are actually helping them to understand the valued roles they can still fulfill within their family and community.


  We must always remember that we cannot give someone dignity. It is an inherent quality so we can only help people identify the dignity they have within themselves.


Most people need control over their life and death through the palliative philosophy of care rather than the short cut of euthanasia or assisted suicide.


This human need is sometimes described as the right to die with dignity versus the right to death. Most often when someone asks for euthanasia (where someone kills them on their request) or assisted suicide (where someone helps them to kill themselves), the request is either: (a) a way to have control over their lives, or (b) a cry for help asking for someone, anyone, to help them with their physical, emotional, spiritual and information needs.


  The request should never be “brushed aside.” The request is real and worthy of a thoughtful response. One English hospice physician I spoke to, for example, spoke of the several hundreds of his patients with ALS (Amyotrophic Lateral Sclerosis or Lou Gerhig's disease). He said that quite a few had asked for his help to end their lives through euthanasia especially when their pain was severe upon entering the hospice or because they did not want to imagine going onto a respirator to help them with their breathing. Only one continued to request euthanasia after her pain and symptoms were well managed because of her suicidal tendencies that had existed long before her ALS. All the others stopped their request for euthanasia. For those in pain, once he had controlled it, euthanasia was no longer an issue. For those who feared a respirator, they discovered that when the time came to decide whether they wanted the respirator or not that most had a stronger will to live to be present at a special anniversary, a grandchild's graduation or wedding, the birth of a child or grandchild, etc. Their will to live didn't diminish they fear of respirator but the physician and his staff's expertise helped them to adjust so they could continue to live fully (including travel, to on outings, having loved ones share a meal with them, etc.).


  Some expressed a fear of choking to death as they had heard this was common. When told that patients with ALS do not choke to death, they were skeptical. “Why have other people told me that it does happen?” The doctor explained that many family members believed that when a patient was having difficulty swallowing food, that the best thing to do was to give them soups, water and other liquids. This is, in fact, the opposite of what should happen. Liquids do not trigger the swallowing reflex. What is needed is to have food ground into a thick liquid that does trigger the swallowing reflex.


   In all cases, information combined with excellent hospice palliative care ensured that the patients lived a more full life than they had expected. The request for euthanasia was answered with options that were valuing and life affirming.


   That said, a request for euthanasia cannot always be so easily turned into a request for help with living. There are people who genuinely would prefer not to live and would prefer to die on their own terms and at their own time. The requests are still illegal in most jurisdictions. Part of the reason for the illegality is the practical provision of this service. In The Netherlands, for example, where euthanasia is legal, it occurs more often than reported that a person has requested to die on a certain date, their family and friends are called together at 'the end,' the physician is present and the person decides that, in fact, they feel pretty good that day and would like to reschedule. Depending on the schedules of their family, friends and the physician they may be able to postpone or they feel direct, or indirect, pressure to go ahead with the plan. This is only one practical aspect of euthanasia that cannot be dealt with by policies and procedures. There are many others. For examples, why ask physicians to be responsible for euthanasia when many of them are the reason there is a hospice movement in the first place - because they were not trained to provide excellent end-of-life care. If they cannot provide adequate pain and symptom control, why would you expect them to know when to provide euthanasia?


  There are many unanswered questions about euthanasia and assisted suicide that are not covered in the public debate. We argue over the grand picture without looking at the specific details of how it might work. Why are people within the disability movement so adamant and so united in their opinion that euthanasia will increase the abuse of vulnerable people such as those who are poor, old, speak a foreign language, alone without advocates, disabled or likely to be dying sometime soon. Their many experiences with the health care system has convinced them, without doubt, that their lives are already at risk of ending prematurely. Why would they trust a system, therefore, to ensure risk-free euthanasia or assisted suicide?


  This book is too short to go into all of the facets of this debate. See the Resources for further information. However, for people determined to die, your role can, legally, only be to provide them with sources of information that may help them with their decision.


Most people need hope maintained, discovered and enriched at all times during the process of living till death.


If euthanasia and assisted suicide are often a cry for help, then the alternative is to help people identify their hopes and help them fulfill them in their remaining lives so they, and their families, create memories of love, togetherness and mutual understanding. This sense of hope comes from their perspective of what is important. Many people who thought they wanted to die rethink their wish when reminded of a special anniversary or birthday or other event that they wanted to attend. Hope for them may also be a desire to help prepare their family members as much as possible. My mother awoke from a coma that was expected to kill her because of a conscious choice she made to live longer. She told us she knew that my father, sister and I were not ready yet for her to die and that we needed time to prepare emotionally and spiritually for her death. She lived another three months to give us that time.


Most people need discerning people.


Discerning people are perceptive, sensitive and astute in ways that help the person who is dying and their family live fully and experience all the positive aspects of this unique period in every one's life. They are strong advocates and know how to get results that meet the person's physical, emotional, spiritual and information needs. Discerning people understand the health care and hospice care systems and understand some of what is being experienced by the person who is dying. They are people who instinctively, or with training, understand the basic principles and specific skills identified in this book. They are likely people like you.


Most people need an 'asker.'


A good death includes a strong, consistent advocacy role and an "asker" who gets things done.


   From a group of discerning people in the patient's life, one or more need to take on the role of advocate; of the “asker” who asks for what the patient needs. This is often not the most immediate family member but someone only slightly removed but who can concentrate on this role. It might not be the patient's spouse but perhaps a knowledgeable child or family friend. In the coming years it may well be a professional advocate who specializes in helping people at the end of their lives when no one else in the patient's life can fulfill the role.


People who provide care also need to take care of themselves.


Although this book is not long enough to discuss the many needs of the care providers (see Family Hospice Care and Care for the Caregiver) it is important to recognize one principle rule: it is okay to live an unbalanced life for a short time in helping someone live fully until they die. This is especially true for family members who may not get enough sleep for weeks on end, may not eat well or exercise as much as they usually do. Their time is short with their loved one and if they need to be there rather than taking care of themselves, they should not be told to take care of themselves better. Let them follow their heart.


   However, in the longer-term if they are caring for someone for months or if you are caring for people as part of your career, then you must take care of yourself. You are the role model for the others providing care. You are the role model for your own family and friends. Hospice care teaches us to nurture relationships above all else - we cannot do that we are not taking care of ourselves. Get whatever support or professional assistance you need to eat well, exercise often, sleep enough and balance your home and work life appropriately. You do not have to give up your own family in order to support patients and their families. You may need to help your organizations recruit more people to share the load and advocate for more resources to cover the costs.


  In meeting people's needs you will need to fight for them systemically. Health care often feels like a 'fight' for patients and their families. They cannot fight for themselves because they are exhausted, overwhelmed and often frightened. They need advocates that will change the whole system.


   If people within your community hesitate to provide the needed resources remind them that they will be in a similar situation soon with their own loved ones. No one escapes this inevitable ending yet many decision makers act as if patients belong to the “them” category while health care providers are the “us.” We all deserve to get the support that we expect to receive ourselves - every last one of us. Never fight alone - find allies and work together to make a difference - one person at a time.


Understanding Grief

We all experience grief from the time we are young children. We all learn from grief. We all help, or hurt, others with their grief depending on how we deal with our own. Grieving is a spiritual, physical and emotional journey that both patients and families experience. How you dealt with past grief is a strong predictor of how you deal with the next one.


   Simply put, grieving is emotionally, physically and spiritually painful. It opens us up to our deepest feelings of love, anger, joy, rejection, compassion, loneliness, wholeness and fear. We might grieve intensely for weeks, months or for years. Over time our days of grieving turn into hours of grieving and then, perhaps, only minutes of grieving. However, no matter how long our periods of grief, it can be just as intense as the day the person we love died. A song on the radio, a smell of familiar perfume on the street, a dream or a special anniversary can all bring back intense grief. The difference is that it might only last a few seconds or minutes rather than days.


  Grieving is a natural process. It is the price we pay for deep love. Sometime the price feels overwhelming. We may have physical symptoms like tightness in our chest or our throats, trouble breathing or a choking sensation. We may feel empty in our stomach and heart. We may want to sleep for days or we cannot sleep well at all. We may not want to eat, become easily distracted and forgetful, and feel anxious or irritable. Some people become depressed, feel isolated or feel overwhelming guilt. These are all fairly typical feelings. As overwhelming as it may seem, we survive, heal somewhat and continue to live. At first it may be very hard just to get out of bed and have breakfast. Over time, we can do more and feel the hurt for shorter periods of time. With effort over many months, or perhaps years, we become stronger for the experience. Later in the chapter, I present some specific ideas that have helped many other people deal with their grief.


  Grieving does not go through 'stages.' There are no stages of denial, anger, depression, bargaining with God and finally acceptance. A chaplain dealing with the feelings of people surviving cancer originally wrote these stages. Dr. Kubler-Ross added to this information and created a list of 13 stages for people who were dying. However, she later reminded people that people do not go through these stages sequentially but experience some or all of these negative (as well as positive feelings) in different orders and at different times.


   If you have ever 'lost' a child in a supermarket only to find them two aisles over you will know what it feels like to go from complete relief, to overwhelming anger to genuine love for your child - all within seconds! You might have said to them: “Thank God I found you and if you ever do that again, I'll kill you!” So great was your relief. Grieving is similar in that you can go from one emotion (positive or negative) to the next one and back again within seconds. There is no logical sequence other than the sequence you might typically follow when you are grieving or in real sadness.


  We do not wish grief on anyone, yet we all learn from our grief. Grief can make us stronger and can make us better children, spouses, parents, friends and neighbors. Grief can also make us weaker when it overpowers our ability to cope with day-to-day activities over long periods of time.


  There is no right or wrong way to grieve unless your grief continues to harm you, and others, long after a loved one has died.


  How we grieve depends on our cultural and personal experiences with other grief. Grief may come to us after we fail an important exam, or lose a job, or move to a new home, or break up with our first boyfriend or girlfriend. Each time we experience grief we set a pattern of how we deal with future grief.

We can change how we grieve over time but it takes a conscious and ongoing effort.


  Grieving is often called 'work' and a 'journey'. It takes effort and time to move from the initial grief after someone's death to when the grief is something you can live with in a healthy way; finding new ways to live without the person we miss. At some unique point for you, you can have a new relationship with the person who has died, make new commitments to others and enjoy love in new ways.


   You know when your grieving journey is at a more comfortable point when you can miss someone without being sad that they are not there. When we are in the middle of intense grief there is no difference between missing someone and being sad. At some point, you can wish that someone were here with you at a wedding, a birth, or a special family dinner without feeling sad that they are not there. The memories of them are more comforting than sad. For some people this point comes after several months of grieving. For many of us, however, this point might take a few years. There will probably, always be some times when missing someone and being sad they are not here become one feeling again. At these times, the intensity of grief might be the same as when the person died, but the duration of that intense grief lasts for minutes rather than days.


  People who die continue to help the living. Not in material or even mystical ways but because they influenced our lives through the life they lived. The lessons and example they gave us continue to influence our thoughts and the way we view the world. When we have a hard decision to make we think how they might have handled it. If our relationship with them was mostly positive, we try to do things in similar ways as they did. If our experiences were mostly negative, we use their lessons as examples of what not to do. No matter our history with the person, they continue to teach us.


  To reach that place of greater comfort we must go through difficult and painful events like funeral preparations, cleaning out closets, finding and reading old letters, getting through the bureaucratic paper work to settle the estate and more. Each painful event is part of the healing process although it might not feel very healing at the time.


Thoughts about Grieving

Grieving may begin weeks or months before someone dies. This is called anticipatory grief because we anticipate a life without our loved one. This grief may have its ups and downs as you experience the ups and downs of someone's illness. One day the person may feel quite good and energized so anticipatory grief may be less. If there is a sudden deterioration in their condition, your grief might be

greater.


  A common occurrence in anticipatory grief happens when a person is near the end of their life and death is expected soon. My mother had cancer throughout her body. One day she went into an unexpected coma from which she was not expected to wake up. For several days, we all prayed for a peaceful end to her life. During this time I went to a funeral home to arrange her funeral so that we would not have to make rush decisions after her death. When I returned from the funeral home I was told that my mother had woken up and wanted to see me. One minute I was praying for her peaceful death and grieving my upcoming loss; the next minute I was praying for her to live longer. Such a roller coaster is painful as it calls into question what we should be praying for and how best we can help each other during such difficult times. My mother lived another three months.


  Another time when the grieving process can be very difficult is when family members keep a vigil for days on end only to have the patient die in the few minutes that the family are out of the room to speak with a doctor, get a cup of coffee or have a quick shower. The sense of guilt for leaving their loved one alone compounds the grief dramatically. I remind people, however, how difficult it can be to die when the people you love most are in the room with you watching you breathe and waiting for you to die.


  When my mother was in her last weeks and in a semi-coma most of the time. We could no longer keep awake day and night so we brought in a night nurse who was a wonderful gift to my mother and our family. My father recognized how difficult it might be for my mother to die so told her one night (soon after my parents' anniversary and my sister's birthday) that it would be okay for her to let go whenever she was ready. We kissed her goodnight and went for some much needed sleep. Within an hour the nurse called us to be with my mother for her last few minutes. Although her death was very difficult for us we knew that she left without worrying about us as she had done three months before when she forced herself awake from a coma because we were not ready for her death yet.


  Lastly, grief can be compounded in the last days by not knowing that people often stop breathing for up to two minutes or more and then start to breathe again. We did not know this so when my mother stopped breathing, we thought she had died. To have her start breathing again was terrible shocking and we thought we were doing something wrong. I now tell people that this is quite common and not to rush to any decisions about when someone dies. Let nature take its course and remain quiet during these last moments. There is no rush to call the funeral home or family doctor. You can wait hours before you make those calls so do not worry about “doing” anything. Rather concentrate on “being with” the person you love and the rest of your family.


  The following tips may help you help those who are grieving, including yourself.


   Feel your hurt rather than fighting it or masking it with medication or alcohol. If you do not take the time to experience the pain of grief now it will remain inside you until, perhaps, another tragedy overwhelms you. You may see people grieve over the death of a pet with such force and drama that you wonder if they are sane. It may be that they are reliving previous, unresolved grief. Grief needs to be experienced but some people can live their whole lives without going through the complete grief process. Their ability, however, to love fully and live enthusiastically may also be affected.


   Experiencing grief may feel like the world is coming to an end. It is physically and emotionally painful. Sharing this feeling with others who understand grief can be helpful but it will not instantly take the pain away. Only time, supportive family and friends and lots of time spent thinking, feeling, talking and reflecting on experiences will work. Some people look inward through prayer or meditation for peace and a bigger perspective of how grief can help them. Others look outward to see how they might help others in the neighborhood, in their spiritual community or through volunteer work.


   Knowing that this debilitating sense of loss is normal and that it becomes less difficult to deal with over time may help you to make it through this process as a whole person.

It is not easy for most of us. Some people may harbor real, intense grief for decades. Some people do die of a 'broken heart' after someone they loved beyond words has died. I suspect that my father died of a broken heart even though the death certificate says emphysema and brain tumors.


  The death of a child or the death of a loved one who died because of violence can be the most difficult to deal with for some people. Others may see these people as 'coping very well with day-to-day life'. They may, however, never be able to love and commit themselves to others in the same way as they did before. If they accept help through professional counseling or through their spiritual leaders, they may heal part of this deep wound. Sharing their stories with people who have had similar situations can also be very helpful.


  Your emotions may include feelings that you think are unhealthy or abnormal. Some people feel a strong relief that the person has died. If the person had wanted to die or if the family has provided care for a long time, relief is quite a typical feeling. Your life has been on hold for a time and now it can continue in new ways.


  Regret and guilt are also common feelings. You wish that you had said or done something before the person died or feel guilty that you did something wrong. Regret and guilt are powerful emotions that take time to heal, if they ever do. The healing comes through understanding that all of us have regrets and feelings of guilt. We can either do something about our feelings or let them simmer. Some people, for example, wished that they had expressed their love more to someone who died. They might express that love at a graveside or through art or music. Or they might use the experience to express their feelings more often with the people still in their lives now.


  There may be times, such as at a funeral, a social gathering, or at work when you get a sense of the world being unreal -- almost as if you were watching yourself in a film. The experience of death and dying can be so intense that the only way to cope is to, quite naturally, distance yourself from the feelings for a time. A young boy whose father died in a corporate jet refused to admit that his father had died. Instead, he told people that his father was a spy and was just on a secret mission. Through the prodding of a counselor who was trying to help him understand 'the truth' he finally burst out with: "I know he's dead. I'm just not ready yet." The story/fantasy was his way of making his world unreal for a time until he was ready to deal with his father's death. He was taking care of himself in the best way he knew how. He needed support more than confrontation -- acceptance more than well-intended truth.


  Face the reality of the death. Begin by continuing small daily activities, return to work when you feel ready (although employers and society may only give you five days of bereavement leave -- we must change this!), continue your relationships with people you are close to, and talk about your feelings when you can.


  The reality of death may hit hardest when you begin to clean out the person's closet, collect their things and perhaps, give some of them away. There is no need to do this within the first few days or weeks after someone's death. Take your time. People who have rushed through their home to clear out the person's effects days after a death have told me years later that they wished they had taken more time. Death seems so unreal around the time of a funeral and the days right afterwards. Wait before hurrying to 'tidy things up'. The same advice is true for moving away from a home shared with the person who has died. Again, there is no hurry. If you plan to move, take some time to say goodbye to the memories of that home before creating memories in a new home.


  Remember the good and the bad. The person who died was not an angel or a devil. They were human. Talk to someone about these memories. You may want to repeat over and over again what your feelings are and what memories you have that are important. Find some friends to talk or write to about these feelings. Repetition is important to make your loss real. Tell them what you need and ask if they will help you.


   Seek spiritual help. If you rely on books for comfort, then begin to read again. If travel or work is therapeutic then do that. If you need to hide away for a few days to allow yourself to feel depressed, then give yourself that time. Playing a musical instrument or singing vigorously may be therapeutic.


  When you feel ready, begin to invest your emotional energy in new relationships or stronger relationships with old friends. It is not a betrayal of the person who has died or an effort to forget him. It is sharing your love again as you did with the person who has died.


  Write a journal of your feelings or write letters to the person who has died with any thoughts and feelings you feel were not said to the person when they were alive. Writing or recording one's feelings and ideas can be very healing. Writing to a close friend is another wonderful way to get the jumble of thoughts out of your head and onto paper. It helps people to think more clearly.


We all experience grief. For most of us, we have memories of going through very difficult situations and coming out of that experience to continue to enjoy our lives. Even when your body and heart do not feel like those good feelings will return, allow your mind to remember past experiences with grief and the joys and love you have experienced since then. This won't speed up your grieving or relieve the pain. Overcoming past grief, however, will provide that light at the end of the tunnel. There is much love, gratitude and service ahead of you when you are ready.


   People who are dying may have different emotions or they may keep denying their illness to the end. People who are grieving may do the same by denying their need to experience grief. At the same time, not all of their anger or depression is caused by their grief. Their life continues and so do normal frustrations with plumbing, rude drivers, and job tensions. If you understand whether your own feelings are from grief or from normal living you can accept the reality of your situation and deal with your stresses more realistically.


  My parents and grandfather died within four years of each other. I cared for all three in their homes until they died. My father was the last to become ill. After my mother and grandfather had died, I felt their loss very deeply and for a long time. What I had failed to learn through both periods of grief was that in concentrating on my grief I was missing opportunities to become even closer with my father and friends. I was feeling more inward. When my father became ill I recognized that I had missed chances to be fully with him. I wouldn't have had to deny my grief but I could have taken more 'breaks' from it to be more fully with him.


  In other periods of grief since then I have not made the same mistake. When my father died I made sure to nurture the relationships closest to me. I did not turn inward all the time. I reached out, shared my feelings and tried to create happy memories with those still alive.


  When trying to help a friend or family member deal with their grief, it is important to listen to their stories, their feelings and their concerns. You may hear these ideas from them over and over again during months of conversations. At some point, however, perhaps many months after a person's death, just listening to a grieving friend's stories is not enough. People must move beyond their feelings. Sometimes they use us to postpone their inevitable need to move on. We can hold them back by being too supportive. This is a hard distinction to make but it is important. If a friend cannot move on with their life and continues to hurt themselves by wallowing in grief, then, as a friend, you need to help them see what is happening. The only way it may work is to refuse to listen to the old stories without the person also talking about what they are going to do to help themselves work through the grief. This is a most difficult situation to be in but as a friend, you must be the stronger character rather than the excuse. How to know when the time has come to change the type of support you offer? You might ask yourself, “How has my friend's grief changed in six months, if at all? How must it change so that I can continue to be supportive?”


Children's Grief

A child's first experience with the death of a loved one is very difficult. They have no real comparison to make with previous grief. The death of a gold fish or other pet may help them draw some comparisons but the intensity is quite different.


   We do not know how to deal with children's grief. It is not part of our education. We are often uncomfortable just talking about death generally, never mind helping a child who has lost someone very important in their lives. There are books, videos and organizations such as The Childhood Cancer Foundation -- Candlelighters Canada and Bereaved Families of Ontario that have a vast store of information and services that can help. The following information barely touches on some of the major issues.


  We often underestimate a child's grief because they do not easily talk about their confusing feelings. They do not know what 'normal' is and may be afraid to admit to feelings of real fear of abandonment, despair, anger, guilt, loss or confusion. Death is difficult to understand at any age. It is about 'forever' and the person never coming back to us. Children need to understand these concepts but that takes time and experience. Talking is not always the way they will learn these ideas. They may lack the maturity or concentration to understand fully what the death of a loved one means to them. Younger children are in the 'here and now' in most of their activities while adults tend to focus 'way back' and 'far ahead'.


  Children need your example to understand what are typical feelings and how to deal with them. They need to see the adults in their lives expressing sadness, confusion and uncertainty. They also need to see adults go on with their lives in ways that encourage the child to understand that even in tragedy, one can move forward.


  One way to prepare for the death of a loved one is to encourage a child to do special things with that person or to create something special to give to the person. Any positive memories of time spent together or time spent making something for the person can add courage and strength during the grieving process. After a death, a memory book or collection of items can be made to celebrate the life shared with the loved one. For some children, making or choosing something special to include in the

casket or to give other family members at the funeral can be comforting.


   Many children need the reassurance that they are not at fault for the death. They may remember saying something, like “I wish you were dead,” or “I'm going to kill you” as part of a game they were playing or out of anger to the person who died. They may feel that if they had done or said something they could have prevented the death. Understanding how the person really died reassures them that they are not responsible.


  Children also worry about themselves. If Grandma or Dad has died, what will happen if the other adults taking care of them die? They may worry about being abandoned and need reassurance that they will always be well cared for in any circumstance. Again, helping them see what really caused the death and that other adults in their life right now do not have a similar disease or condition can help.

Reassurance and love are always better than a quick “You don't have to worry dear.”


  It is not helpful insisting that a child talk about death. However, every question should be answered. Take advantage of opportunities to talk about death. For example, news reports of a death, a neighbor's death, or a program on television may help you discuss the child's feelings. We cannot make it 'okay' for children within days of a death in the family. It will take them many months and years, just as for their parents, to come to terms with all the aspects of someone's death. Do not rush them.


  Children are not adults. They need to be children. If a parent has died, the child should not be expected to become the 'man' or 'woman' of the house. The remaining adults may need extra supports, but it should not be the children who provide that adult support. Children can be wonderfully supportive as children but they should not fulfill the role of the adult who has died.

   When children ask questions that you have no answer for, say so. “I don't know” is a wonderful phrase because it means that the adult and child can look for answers together. Some questions, of course, have no answers and that is part of life too. Children can often tell when someone has told them something that is untrue, too simplistic or gives a quick answer to keep them from asking more questions. If children feel this happening often, they will shut out the adults and withdraw or act out in frustration or anger.


  Children need the security that comes from rituals, rules and structure. They need limits and consistent discipline that tells them they are loved, safe and part of a family that works things out together. If parents are having trouble providing these things during difficult times, they must look for outside help to give their children and themselves comfort and support.


  Children have wisdom that is often overlooked. They may want to save items of personal importance from the person who has died. They may want to create a scrapbook of pictures, artwork, poems and thoughts. They recognize, intuitively, that collecting memories is a way to deal with grief. Encourage their natural tendencies and ask them to explain why they have chosen certain items over other ones. You may be surprised by the depth of their thinking and comforted by their genuine love.


  Children may have temporary periods of needing to hold onto to their parents or a trusted adult for comfort. They might have nightmares or wet their beds. These 'regressions' are just a sign that they need extra caring and time with trusted adults. My grandfather was 91 when he was dying and he spoke of wishing that his mother were there to hold him. We never lose that desire to be safely in the arms of someone we trust. Children express this need more through actions than words and we must pay attention. They also have short attention spans so you may see them laughing and playing soon after a death or at the funeral. Young children may appear to forget that someone they love has died but they are actually just being children. They will come back to their feelings and questions over the months and years ahead. We must be patient and understanding of their different ways of coping with difficult, emotional times.


Elders' Grief

Our elders have experienced grief many times. If they experienced the horrors of war, the depression years, or the death of a child, grandchild or spouse, they have dealt with grief in ways that many people cannot imagine. Their longevity probably means that they also have dealt with the grief of losing some of their physical and mental abilities. Grief is a constant companion for many of them. As they anticipate their own deaths, they deal with the grief of saying goodbye to loved ones left behind.


  At the same time, their experiences have given many of them an understanding of grief, of their own responses to grief and how best they can be supported and supportive. Elders have, through longevity and experience, much to teach younger people about coping with the difficulties of life. They can show great empathy to a young mother whose husband has died. They can understand the trauma of their grandchildren as they begin to explore the world of relationships, study and work. That same empathy is possible in reverse as grandchildren, family and friends can empathize with part of their elders' grief when a spouse, friend or family member dies. When my grandfather was dying, he spoke about feeling like an orphan without his mother there to comfort him. He was 91 years old and he missed his mother as I did mine. We have much more in common with our elders than we sometimes realize.


  Elders are no more perfect or ideal than younger people. They can be angry, lonely or unkind at times like everyone else. They do, however, offer a wealth of knowledge and skills. This offer is not always accepted by those around them and in North America, we have tended to isolate them from their communities.


  In helping an elder deal with grief, it might be best to allow them to 'teach' us about grief from their perspective. In listening to their lessons we might find ways to be most helpful. It is also important to recognize that the person within an older body still feels many of the same emotions that younger people do. A friend of mine was once talking about the old people in the seniors' home where she lived. I asked her how old those people were. “Oh in their seventies or early eighties, I guess,” she replied. “Are you old,” I asked her. “Heavens no, dear.” She was 86 and felt much younger because her interests had not changed very much over the decades. My grandfather still had a glint in his eye when he told us about putting a girl's ponytail in the ink well in 1899. He still had some of the mischievous personality of a 10-year-old boy at 91 years of age.


Special Events

Special holidays or events may trigger difficult emotions. After my mother died I often wished that she could be with us for Christmas, holidays, birthdays and other special events. It was not until my father died four years later that I understood that my spending so much time wishing my mother was at certain events, meant I did not pay enough attention to my father who was there.


   Many people have more difficulty in the days before a special event than the day itself. In our anticipation of a difficult day we actually lessen the effect of the day itself.


Here are a few tips for dealing with special days:


  1. Get extra support from family and friends. If you choose to be alone for that day, purposefully mix feelings of happy memories with sad ones. We need to remember the good and the bad of such events and use these lessons to help us cope. If you over-indulge in food or drink, recognize that you don't want to do that every day or else you will hurt yourself. Feel the emotions that are there. Sob if you need to. Laugh if you want to. There are no rules about what you MUST do, only suggestions about what you might do to help yourself and others that are grieving too.

  2. Make lists if you have trouble around such events remembering simple chores, gifts to buy, places to be on certain days, or cards to mail. On the list, mark off any items that are important to do first. Lists give us some sense of control and satisfaction as well tick off items that we complete.

  3. Some traditions you will want to keep and others you may want to change. You will get lots of free advice from caring family and friends. Go with your instincts as long as they do not hurt others. For example, you may not have liked a certain dish that was prepared for every formal family event. You will not dishonor the person's memory by choosing to cook something else.

  4. Some people spend money to 'take the pain away'. An elaborate vacation, too much shopping or too many dinners away from home will hurt you financially. Don't spend your way through grief as it only adds the grief of financial troubles. You may inherit money after the death of a loved one. Take some time before spending any of it. You have a whole life ahead of you and your loved one was trying to help you by easing your financial burdens.

  5. You may get many invitations to parties, get-togethers, and special events. People may want you to attend to 'take your mind off things' when that is not what you want to do. They may worry that you are too isolated on your own. You need to judge at what point you are ready to socialize. These events are usually not the time or place to talk about your grief so you may not want to attend soon after a death. Instead, you might invite people over for informal visits to chat or ask someone to go for a walk with you. People mean well but you must decide when the time is right. On the other hand, do not isolate yourself from those who care about you. Find other ways to spend time with them. If you do not, they may well stop asking to be with you and your isolation from people who care about you may become permanent.

  6. New rituals can help ease grief. Lighting a candle to honor the life of a loved one is an age-old tradition. Playing favorite music or watching a favorite film can bring back happy memories. These memories may also bring sadness. Feel the emotions that come. Purposely balance the happy and sad feelings you have.

  7. On the anniversary date of the person's death, you might decide to create a new ritual of celebration to honor the person's life and their importance in your life. It might be as simple as a visit to the cemetery or going for a walk in your favorite spot together. It might be reading a special book or writing to loved ones to share the love you had with the person who died.


Feel the feelings at appropriate times. Remember the good and the bad memories. Use what you have learned to help others. At least, that is what so many others do, with perfectly human, mixed results. We can only do the best we can do, day-to-day, month-to-month and year-to-year. What a gift our experiences can be to others.


Chapter 5

Practical Knowledge

for Caregivers


You know most of the following. They are in no particular order. The question is, do you use these ideas? Do you teach them? Do you role model them to others? Do you do these things instinctively or consciously and thoughtfully? Do you make the effort to demonstrate many of these ideas to family members so they, too, can use them? Do you use these ideas consistently or only as you remember them?


   Note: some of the following tips are more appropriate for professional and volunteer caregivers while others are more helpful for family and friends.


   1. Remember that care giving is mutual. It is not better to give than to receive.


  2. The more connected you are to your own family, friends, neighbors, colleagues from work, your community and your cultural and spiritual community, the better you will be able to deal with the ups and downs of caring for others who are dying. The nurse who cared for my mother in her last week of life was so isolated herself that when she became ill a few years later she chose suicide over the type of care she so admirably gave others.


   3. We hear only about 20% of what someone says and forget about 80% of that within one day. That leaves us remembering only about 4% of our conversations. How much information a person can comprehend is based on this rule. If the information is important enough it must be given in several ways at several times. Use as many of the following methods of providing information as possible to reinforce what is important. Do it gradually or all at once, whichever the person wants, to give them control over timing and volume:

verbal conversations; written materials (books, pamphlets, articles, magazines, newsletters); DVDs and CD ROMS of facts, feelings and similar situations experienced by others including films and music; mentor/group supports; theatre; and web site links.


   4. Open-ended questions + active listening + reading body language + silence = your most powerful communication tool. Active listening is a skill that involves listening to what a person says while also questioning what they might not be saying, and why. Active listening also involves looking at the person's body language to see if what they are saying is consistent with how they look. You can always tell when people are NOT practising active listening. If there is no silence in a conversation then people are thinking up their own replies to someone's comments while the other person is still talking. This is not active listening. A good listener uses the silence after someone finishes talking to think about what was said and, perhaps, rehearse what they want to reply.


   When my father was dying I asked him one day what it was that was making him unhappy. Then I kept quiet. His first response was “If you were dying son, you wouldn't be too happy either.” I agreed but said that what made me unhappy might be different than what was making him unhappy. I kept quiet again. He spent several minutes: (1) deciding whether he would tell me anything? (2) if so, how much? and (3) rehearsing in his mind what he would say.


  When he was ready, he told me what was making him unhappy. It was not what I expected. I expected that it was because he had been forced to retire early or that he really missed my mother who had died only four years before. What was really making him unhappy was that he would not live long enough to be at my wedding. We had discussed moving the wedding date and location so that he could attend but he had refused. We thought that concern was over when in fact it was not. An open-ended question + silence + watching his body language helped us to open up the discussions again so that he became more involved in the planning of the wedding.


   5. Take care of yourself physically, emotionally and spiritually.  That means that you need to eat more healthy food and healthy drinks than junk. Pray or meditate to feel the comfort that this gives you.  Take some time for a quick walk around the block or some other light exercise. Sleep as much of a normal sleep as you can. Get others to give you extra time for 'cat naps'.


  6. When you allow a patient's family to watch you do your work, you provide them with a role model and also a free lesson on how to provide care when you are not around. For example, when my mother came home from the hospital for her last months of life, my father and I were expected to care for her. In the hospital we were always asked to leave the room when any personal care was provided to my mother. This meant that when we needed to give my mother her first bed bath at home we were completely ignorant of how to do it properly. I asked my father, “How do you think we should do this?” He said, “It can't be that hard. I used to give you kids a bed bath when you were babies.” That should have been our first clue that this was not going to go well!


  Of course we could have asked my mother how it was done but she was weak and we didn't want to bother her. She could also, of course, have told us but she did not want to make us feel ignorant so she went along for the experience. For those of you who are nurses or have given bed baths, you will understand immediately what we did wrong. For the rest of you, you get to learn from our mistakes!


   My father and I got all the things we needed for the bath and proceed to undress my mother and wash her from top to bottom. Then we dried her from top to bottom. This was mid-winter in a 15th floor apartment with drafty windows. The goose bumps on my mother's skin told us she was cold from the experience but we didn't know how else to do it.


   The next day a visiting home nurse arrived to provide my mother's care. She asked how our first bed bath had gone the day before and after she heard what we had done, she smiled ever so gently and suggested that we come and watch her give a bed bath. What she did was so logical, in hindsight. She never told us we had done a poor job the day before but her demonstration showed us how we would do it better next time.


  She kept my mother covered with a sheet and blanket and only washed and then dried parts of my mother's body - for example, one hand at a time, then one arm at a time, then the legs, the torso, and her face. At each step, she would pull the blanket back for only a short time and after drying her with a warm towel (a few seconds in the dryer to heat it up) would cover her up again. My mother never got cold and we learned an invaluable lesson. If you work in a hospital or in homecare, always encourage family members who want to, to stay and help you provide personal care. That is how we learn what to do when you are not there.


  7. Consider having a support circle. These circles can share the work of meeting someone's physical, emotional, spiritual and information needs. Some of the circle members can provide personal care. Others can help with the grocery shopping and other household needs. Others can help with the legal and financial issues that need to be done. One or two of the people can become the circle coordinators to make sure people do not all arrive all at once on one day and no one shows up the next. See Family hospice care or Caring for loved ones at home for specifics of setting up such a circle.


   8. Give 'bad news' by allowing the person to choose when to hear the news. For example, ask them if they would like it now, later today or tomorrow. This sense of control will help the patient/family very much.


   I asked my father's physician if I could be the one to tell him that he had a terminal illness. I went to my father and said, “I've spoken to your doctors and did some research into your condition. Would you like to know what I found out?”


   By giving him control over the timing of the information he also had better control over how to respond and cope with the news. He knew that if my information was 'good news' that I would have just told him. By giving him the choice of when to hear the news and how much of it at any time, he had, for the first time, control over his medical information. He took a few minutes (a long time of quiet time) to think about his answer. Finally he said, “Yes I would like to know but not right now.” He could have had the news then, later or decided that he did not want it at all but for me to share it with other family members.


   The next day he asked me if he would likely be alive for my wedding in June and this was September. I said it was not likely. That was all he wanted to know. The next day he asked if he would likely be alive for Christmas. I said that was unlikely too. Over the next few days he continued to ask more questions until he knew everything he wanted to know. He had total control over the flow of information.


  From my standpoint, his control relieved me of the burden of figuring out when the “right time” was to tell him the news. When I teach this skill to new physicians they often say they do not have time to wait for the patient to decide when to receive the information. I suggest they still give the patient 3 options. Something like, “Mr. van Bommel. I have some news about your condition. Would you like me to tell you now, at the end of my rounds in about an hour or tomorrow morning?” These choices still would have given my father some control over his information. Few medical decisions need to be made right away. We usually have time to give people some control over their 'news.'


   9. Families and volunteers need to get as much information as they need to provide the care they want to give, how they can do it well and where they can turn for more help.  Practical advice is available in books like Caring for Loved Ones at Home.


   10. In periods of overwhelming stress, you might find it helpful to concentrate and recite (silently or out loud) a quote or prayer.


    For beginning professionals, volunteers and family members this is a handy little aid. When someone is vomiting I have a natural tendency to want to vomit with them! To prevent this rather unhelpful response, I often recite in my mind a favorite prayer…over and over again until the vomiting has stopped. I have found this immensely helpful. Others might want to sing a song in their mind or quote a favorite poem. Whatever you can do to distract your gag reflex while still be supportive to the person you are caring for.


   11. There are some mistaken ideas about the kind of person you need to be to care for someone:


  1. You need unlimited energy. Not possible so understand the need to have balance in your life.

  2. You have to accept all the responsibilities on your own shoulders. Heroes only survive in movies. In real life you need to share the responsibilities whether you are a physician, nurse, volunteer or spouse of the person who is ill.

  3. If you look after yourself, you are selfish. This comes from the mistaken belief that it is better to give than to receive.  Do not fall into this trap. It will hurt you, your family and your patient. Ask for and accept help.

  4. If you are exhausted, you must really care about the person who is ill. This is one of my favorite mistaken beliefs. I have sat in on family caregiver support groups and heard the following type of conversation more than once:


“I'm so tired today. I only got 4 hours of sleep last night.”


“You got 4 hours? I would kill to have 4 hours sleep. I only had 2 hours and that was broken up several times by my husband waking up needing help.”


“You had 2 hours of sleep? I wish I knew what sleep was. I'm sure I haven't had 2 hours sleep in the past 3 days.”


   It almost sounds like a competition doesn't it? It is as if they were competing to see who loved their family member more and, therefore, would sacrifice more for them. It is a little like the story you might have heard growing up about how your parent or grandparent went to school barefoot in the snow, up hill both ways, for 5 miles!


   Exhaustion is not a sign of love. It is a sign of neglect. You are neglecting your own health and the health of the person you are caring for. You may be more tired than usual during particularly difficult times, but then it is time to catch up.


  1. People should know what we need and offer it to us. This is a little like people should be able to read our minds so we don't have to think out loud. It is not going to happen. The gift of care requires more open communication than usually occurs between people. People have to discuss personal, intimate details of their lives in order to get the help they need. They need to talk about incontinence or about family difficulties. To expect people to figure it out for themselves, however, is unfair. Therefore, again, you have the opportunity to role model clear and concise communication skills that family members can learn from and copy.

  2. God will take care of you. There are more than a few professional and volunteer care providers who think that God will take care of them so well that they do not have to worry about good nutrition, sleep, exercise and nurturing valuable relationships. When they see it written out in black and white, of course, they recognize the fallacy of their belief but they may still need reminding every so often.

  3. Don't spend a lot of time thinking about your feelings. People believe that to be a professional requires a distance between their emotions and their work. They believe that to show their feelings or to think about their own feelings such as grief after a death is unprofessional. The reverse is true. One nurse I knew, for example, never showed grief at the death of any of her patients or even her family members. When her cat died, however, she took a week off and did nothing but cry for the week. There were so many hidden feelings. This was unhealthy and she recognized that and learned to express herself better and to think about how her work and family life are enriched when feelings are recognized and felt openly.


Our family's physician, for example, was quite angry with me because I did not invite her to my mother's funeral. I presumed that she would be too busy for such things. She was hurt and told me so. I was grateful to her because she showed genuine affection for my mother. I should not have presumed to know how she would respond to an invitation to the funeral. In fact, on the morning of my mother's death, our physician, the visiting home nurse and the homecare homemaker all sat around our kitchen table shedding some tears and sharing stories about my mother. What a great gift they shared with us - both their time and their compassion.


  12. Torn between two or three loves - i.e., sometimes when we try to care for someone else we lose sight of what is helpful and who else may need us. A professional or volunteer hospice care provider may be caring for their own parent who is ill while also torn between being at work where other people clearly need them and at home with their children. This most troubling dilemma must be faced squarely with the help of one's family, friends and colleagues. We cannot be all things to all people but we cannot completely isolate ourselves from others who need us even as we care for someone we truly love. Look at support circles as one way to help (see Family Hospice Care or Caring for Loved Ones at Home). Some jurisdictions also offer paid compassionate leave from work to care for someone in their last weeks or months. Some organizations make it a point to recognize this “sandwich generation” by providing liberal leave benefits. The future will require even more organizations to do this as the baby boomers will require more resources than currently exist.


   13. Sometimes it is necessary to say no. You do not need to explain why. Sometimes we feel compelled to give a long, detailed explanation of why we cannot do something. It is not necessary and often not appreciated. Whatever the reason, you are telling the person that the reason is more important than their request. Therefore, it is best to say “no” quickly and move on. That is a lot better than saying “yes” and at the last minute backing out of the agreement to help.


   14. It can be very helpful to have a private space where you can go to hide, sleep, re-energize, pray and think. Even if it is just down the hallway, in a hospital chapel, or a walk outside it is a special place to recover your energy and perspective.


   15. Family dynamics cannot be understood or manipulated in the last weeks of someone's life. You cannot reconcile a family to all outstanding issues. You can help them identify behaviors and actions they can do now that can make a profound impact on the person they love. The results will benefit everyone. When they look back upon those times together they will have found memories of something special that you encouraged them to do. For example, helping loved ones write 'thank you' notes to people they love or helping them have quiet time with someone they have had difficulties with in the past. Simple acts have profound consequences. Help them identify what is possible in their specific situation. Do not live out your life's mistakes or dreams through them - concentrate on their needs.


   16. Change your time zone to theirs. In other words, slow down your pace to match theirs as they are often concerned about the 'now' while we are already planning months ahead. When I visit someone who is ill or grieving, I make a conscious effort outside their door to take a few seconds to slow down my breathing, take deeper breathes which also slows down my heart rate and to enter their room calm and focused just on them. I consciously push out thoughts about my next appointment, what I'm cooking that night, what has to be picked up at the cleaners, etc. This simple changing my pace helps the person I am visiting feel that I am there just for them and not rushed.


   17. Use direct eye contact and a smile sometimes  (understanding cultural differences, of course) while at other times allow the person the space not to look at you (e.g., on a walk or car ride - people may find direct eye contact too emotional). During particularly difficult discussions about grief, guilt or anger, for example, I often go for a walk with someone or sit beside them rather than across from them. This gives them control over when they want to look at you and when they want to concentrate on their own thoughts or feelings.


  18. Help family members or the patient with a few of the everyday errands, chores and needs of their lives when you can. It may be as simple as helping them on with their coat when they are going out and you only have a few extra minutes or something more time consuming like helping them answer some mail.


  19. Encourage the recording of the person's life in some form. See book Canada 150 at www.legacies.ca for instructions on how to do this.


   20. Use appropriate touch affectionately. This is highly cultural so follow the lead of the patient. Hispanic people for example, often use touch as a common form of communication. In other cultures, such as traditional English people, touch is seen as something that is highly personal and not done in public very much.


   21. Use extra comfort measures. For example, a warm towel given to a patient after their tub or shower; preparing their favorite dessert or hot drink, raising or lowering the temperature to their comfort level rather than keeping it at your preferred level.


   22. Use appropriate humor, stories, and questions to help conversations be more meaningful. Most people enjoy stories either by telling them or listening to them. Conversation is an opportunity to share such stories and increase the bond between you. As a care provider you can also demonstrate how a timely, open-ended question can open up a whole discussion about something that is quite interesting and “new” for the family too.


  23. Use people's correct names, and help others to remember your name. Avoid “dear”, “sweetie”, and similar terms of endearment until you have earned the right to use them, if ever. Some people prefer to be called more formally by Mr. or Mrs. Browne while others prefer their first name or pet names. Ask them. Always begin with the formal until told otherwise. Terms of endearment are often an excuse not to learn the person's name.


  24. Provide distractions (e.g., music, videos, reading material, television, movies, activities). This can be particularly helpful if someone is anxious, bored or lonely.


   25. Take time to leave the person after each visit in a compassionate, unhurried way. If you have slowed down your pace before entering the person's room only to look at your watch, see that you are late and rush out of there, the whole visit feels rushed. Take the time to leave as unhurried as you arrived. The impact this will have is enormous. The person who is ill is always seeing people rush off to their interesting lives while they await their death.


   26. Help create memories using humor and creativity and a conspiracy of well-meaning people to help patients, their families and other caregivers. Celebrate anything worth celebrating (birthdays, anniversaries, visits from out-of-town family and friends). Create celebrations out of nothing more than a lovely day, a favorite song heard on the radio or a bird feeding outside the person's window. Each day should have some memorable events happening that makes everyone feel special and valued. It could be as simple as holding a hand, reading a book aloud, listening quietly to music together or sharing a special treat. These are times that force all of us to slow down from our hectic lives for a few minutes or a few hours and we should treasure each of these gifts of care.


   27. Ask people what they want you to do to be most helpful and respectful. Of course this should be the first point in this list. However, many people do not know how to answer the question “How can I be most helpful to you right now?” With the 26 points described above, you now have a better sense of what to offer.




Chapter 6

Voices beyond Earshot


The following is an exercise for those of you who are professional and volunteer caregivers. Put on some quiet music as you read aloud the voices of your patients.

In the hectic pace of any health care facility or in someone's home, the quiet voices of patients and families can easily be missed. These 'quotes' are distilled from conversations I have had over decades of providing care and teaching. The sentiments are real. You will be able to easily identify people you know personally and professionally who have said similar things to you. We all need to listen to these voices and share them with others so their meaning is not lost. We need to act upon these voices to help diminish fears and celebrate successes.


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  I'm scared. I may scare myself to death. Hearing myself say that sounds funny. Some people may even laugh. But newspapers are always saying how stress is a killer and I can't remember ever being this stressed. The articles also say I may get an infection and die here or that my medications may be given incorrectly. I don't know what you can do to help me with my fears - I just pray that you can think of something. I'm really, really scared.


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   She came out of nowhere. I didn't know her. Never been properly introduced. But there she was. She had a quiet, peaceful smile instead of one of those pasted-on smiles. She said only two words: “I know.” Then she was quiet. From that moment I knew that she knew. She knew what I was feeling. She knew I wasn't sure if I would make it or not. But she knew I would be okay - no matter what happened. Her knowing took the worst of my fears away. She knew.


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   He is visiting his father next door. He smiles as he passes by. On his second visit, he smiles again and says 'hello'. On his third visit, he actually stops and asks how I am doing. I don't know him. Will never see him again after a few days. But for that few moments he saw me, recognized a fellow human being and took notice of me. His father died yesterday. He came to collect his things. I took a flower from the bouquet my daughter gave me the day before and gave it to him. I know men don't usually get flowers, but I thought he might like one anyway. He cried quietly when I gave him the flower and he nodded. We didn't need words. We were eternal friends who felt like we had always known each other. Crisis did that during the war years and it does so now too. We will always remember each other even though we never even learned each other's names.


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   Imagine for a moment, you are in a small theatre. The seats are full. The crowd is a buzz with anticipation. The smell of hors d'oeuvres and cheeses fill the air. The clinking of wineglasses speaks of a celebratory gathering. There is music in the air that fills your heart and lungs with energy.


   You feel your heart beat racing and your breath is faster than normal. You know what is going to happen next at this theatre. You must walk onto the stage and take a bow. You take a hesitant step forward from behind the curtain. Stage fright does, surprisingly, feel a bit like what a heart attack might feel. Yet you know you must go out onto that stage, so you do. You have always done what you needed to do.


   As you hit the mark on centre stage, the spotlight is on you, and although you can no longer see the audience as you did from back stage, you know they are there because you hear thunderous applause. You sense the people are on their feet now.


  The house lights come on so that you see before you hundreds, if not thousands of people you have cared for over the years. Some patients are represented by family members as their loved ones died in your facility. Many faces you do not remember as you have cared for so many you can't possible remember them all, but they have remembered you.


   A little girl comes forward and walks up the steps to present you with a huge bouquet of flowers, much as you have seen children do when Queen Elizabeth is in town. The little girl presents you the flowers and then, a little shy, but still with enough courage to complete the task, she walks up to the microphone. She unfolds a piece of paper and reads, a little too loudly at first in case the microphone does not work;

 

“My name is Cassandra. I have been asked by all the people you have cared for and their families to thank you for not only doing your job, but also for making us feel welcome, cared for and nurtured. You took care of my grandma last year. She died only a few months after you first met her. You did something for her that we have never seen anyone else ever do before. You saw our grandma while others saw only an old lady who couldn't remember who she was. Thank you for the gift of seeing my grandma like I saw her. You must have been someone's grandchild too once. We are all very grateful. Thank you from the bottom of our hearts.”


   The little girl was crying by now, and so are you and so is much of the audience. There is a human bond at the time of crisis that cannot be replicated anywhere else. You are the key to that bond happening in such a lonely place.


  Whether the audience ever actually comes together in a real theatre or only in the theatre of your mind, rest assured that audience is there.

Gift of Care


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Copyright © 2007, 2008 Harry van Bommel

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