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Managing The Stress ~ Making The Decisions ~ Discovering The Meaning |
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Caregiving |
Solutions To Your Caregiving Situations Throughout Your Caregiving Years |
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Death and dying Knowing What to Expect Helps You Help Your Care Recipient
(Editor's Note: What is it like when someone dies? What is our role during that dying process? To help answer these questions, we contacted Nancy Hassett Dahm, author of “Mind, Body, and Soul; A Guide to Living with Cancer”. Here are our questions and her answers.)
Caregiving: Families so worry about the unexpected when they care for a terminally ill family member, especially because, as a society, we've done so little education about the dying process. Can you explain the dying process? What are the physical changes to the body during the last weeks and days? What about any emotional and/or spiritual changes? Nancy: Families do worry so about the unexpected when caring for a terminally ill family member. This is natural, given the fact that no one gives information on how to give care. Families are confronted with tremendous grief over the impending loss, and then are expected to not only care for their loved one, but also have to watch the process of dying in doing so. However, it is a time when caring for a loved one at such a stage is an opportunity to give and receive much love. Everyone fears the dying process. But that fear can be mitigated once you understand what is happening. Let me explain. The dying process is not one process that occurs, but many, and is unique to each individual. Not everyone dies in the same manner. There are many similarities though. A person who is approaching the terminal end stages of an illness has more control over the process than most would think possible. There are many variables which when implemented, could contribute to a more "acceptable" process that is determined by the patient--with the help of professional caregivers and family members. These variables have to do with the patient's environment; the caregiver situation; comfort measures employed; pain management; fluids, mouth care, bathing; and overall attention to the most seemingly trivial details. All these things are vital in ensuring that the dying process is as comfortable and stress free as possible. And unless one is educated in their choices, this process can either be wrought with apprehension and struggle, or it can be a peaceful passage. The physical changes are many and can vary from patient to patient. In general terms, this is what happens: I have defined essentially three stages of the dying process. The first stage is The Initial Stage. This is the first perceptible change in a person's condition that occurs suddenly and is quickly followed by a rapid decline. This Initial Stage begins with a marked loss of appetite, rapid weight loss, increased muscle weakness, possible increased pain, agitation, anxiety and possible depression. Signs and Symptoms include the above, and may also include nausea, vomiting, dehydration, extreme fatigue, and sleeplessness. The patient will look different to you. He or she will appear pale, drawn, and have a general lack of interest in everything and everyone. The second stage is The Plateau Stage, where there is a period of stability in the person's condition. This can last weeks or days. The third stage is The Imminent Stage. Signs and symptoms vary, and may include all or some the following symptoms: Confusion, loss of bowel and bladder control, restlessness, increased agitation, bluish color in the nailbeds, hands, feet, difficulty breathing, possible bleeding and possible coma. Emotionally, most patients become "an Island unto themselves". They withdraw away from the family. This does not mean the person doesn't love the family. What is happening is great hardship for the patient, and he or she knows what is occurring. I believe this to be a time when the patient is preparing to make the separation. Your loved one is half in this world and half in the next. It is a transition that is gradual, and many patients are self absorbed in their "work". It is important to remain near your loved one, giving words of reassurance and love. Spiritually, I have not noticed many changes in patients drawing nearing to their faith at this time. What I do think is very important, is that even if your dying loved one never uttered a prayer or was not " religious", offer prayers and spiritual support. Your loved one will most likely very gladly accept them. They are afraid to ask for such things on their own.
Caregiving: When a loved one is dying, family members also worry about doing the wrong thing. Can you alleviate this worry? Nancy: Family members do worry about doing the "wrong" thing. This worry can be alleviated by understanding that there is no real right or wrong way to this. The only "wrong" thing that can occur is not giving of yourself to your loved one. Don't be afraid. When you give loving care, you give good care. And, there is plenty of factual information for you. Just think in terms of what you would want done for you.
Caregiving: Often, doctors and families wait until the last few days to contact Hospice. They feel hospice is "giving up" and only for when there is no hope. But, hospice can make such a huge difference for the patient and family if contacted as soon as a terminal illness is diagnosed. Can you offer insights and advice to families about how important this is? Nancy: Hospice is a wonderful resource for families in need of caregiving support. Many people wait too long before calling them. People fear the word hospice, because, to many, it signals "the end". But that is not necessarily so. Hospice gives comfort during your greatest time of stress. The staff helps the patient focus on how to live well with the remaining time. There is no too soon--there is always a too late. Families deserve dignity, comfort, relief of stress, and resources to help in coping with this major event. Hospice can do that for you. It's all about getting beyond the fear.
Caregiving: When you think of the phrase "Dying Well", what comes to mind? What experiences and stories can you share? Nancy: Dying well is simple. I'll tell you what it means to me: As I wrote in Chapter 5 of my book, I call it "Spare Me" To me, dying with dignity means sparing me the humiliation of crying out in pain, writhing in bed, and having to beg for help from those who can't or won't help. It means sparing me from the routine of loud hospital noises, indifference, closed doors, and unwelcome remarks from strangers who cross the dividing line between chaos and peace, a line now drawn at the edge of a hospital bed. Spare me from prying strangers who are merely satisfying their curiosity, and not showing concern. Spare me from those who would snap the covers away from me to give me a cold bath with cold hands. Spare me the indignity of dying alone without the hands of the ones who know and love me. Spare me the indignity of dying in a place where no one knows my name. Dying with dignity is to die at home, where you are loved, and cared for with love. It is a place where you can die where you have lived. Home is where your heart is. Dying with dignity is dying at home. This is dying well.
Caregiving: Tell us about the spiritual aspect for the patient during the dying process. How can families tap into this and use it effectively? Nancy: The spiritual aspect for the patient during the dying process is very important to most patients. But they may not ask for spiritual help outright. It is up to the family and friends to brave this most important part of dying. Many people are embarrassed or think that the dying person doesn't need it. Well, that is an incorrect assumption. Most patients are very happy and really want and need that spiritual support. They need to feel that they are going to "their" God. They need reassurance. They need the reassurance of their faith. This is what helps people to die in peace. Ask your loved one what he or she wants. Ask if they want a rabbi or a priest, or minister. Read to them. Talk about a loving God. Offer them their old prayer book or something that has spiritual significance for them. You will be doing them a great service in helping them through their fear, and yours as well.
Caregiving: How do you plan to "die well" (i.e., how do you envision your last weeks and days)? Nancy: I envision my last weeks and days surrounded by the ones I love: My children and spouse, and my sisters and brother. I want time to prepare. I want soft music and low lighting, and I want a calm and peace to fill the room where I lay in my own home. I want my God near me, and if He can't be there, then let angels come and sit by my side, smiling. I want it to be on my terms. I will say when it is time. I will go when I am ready, but not before I say I love you.
Nancy Hassett Dahm is a registered nurse who has cared for over 400 terminally ill cancer patients and their families. She wrote Mind, Body, and Soul; A Guide to Living with Cancer so that patients and families can learn from what she her experiences. Currently, Nancy is Director of Patient Services in a Certified Home Health Agency in New York City, N.Y. She resides in Garden City, N.Y., with her husband, Al, who also edited her book. Mind, Body, and Soul; A Guide to Living with Cancer is published by Taylor Hill Publishing, LTD. and is available through Amazon.com, b&n.com and Nancy's website, www.cancerbook.com. Working Within the Laws of Nature Ethics Committees Help Iron Out Disagreements Bereavement is as Personal Experience as Caregiving |
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