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The Ribbon - Care for Caregivers
Volume 2, Issue 12
June 25, 1999

End of life issues are hard to deal with. Today's issue is geared towards helping us to help our loved one when that time comes. Hopefully this information will help to ease you and help you ease your loved one's passing when the time comes.


From LIZA 513

Hi everyone. An online friend whose Mother is in very serious condition sent this to me. While it is something none of want to think about...losing a loved one, I think this article can help you know what to expect and also how to help your loved ones.

Journey's End

When a person enters the final stage of the dying process, two different dynamics are at work which are closely interdependent. On the physical plane, the body begins the final phase of shutting down, which will end when all the physical systems cease to function. Usually, this is an orderly and undramatic progressive series of physical changes which are not medical emergencies requiring invasive interventions. These physical changes are a normal, natural way in which the body prepares itself to stop, and the most appropriate kinds of responses are comfort-enhancing measures.

The other dynamic of the dying process is at work on the emotional-spiritual-mental plane and is a different kind of process. The "spirit" of the dying person begins the final process of release from the body, its immediate environment, and all attachments. This release also tends to follow its own priorities, which may include the resolution of whatever is unfinished of a practical nature and reception of permission to "let go" from family members. These "events" are the normal, natural way in which the spirit prepares to move from this existence into the next dimension of life. The most appropriate kinds of responses to the emotional-spiritual-mental changes are those which support and encourage this release and transition.

When a person's body is ready and wanting to stop, but the person is still unresolved or unreconciled over some important issue or with some significant relationship, he/she may tend to linger, even though uncomfortable or debilitated, in order to finish whatever needs finishing. On the other hand, when a person is emotionally-spiritually-mentally resolved and ready for this release, but his/her body has not completed its final physical process the person will continue to live until the physical shutdown is completed.

The experience we call death occurs when the body completes its natural process of shutting down, and when the "spirit" completes its natural process of reconciling and finishing. These two processes need to happen in a way appropriate and unique to the values, beliefs and lifestyle of the dying person.

Therefore, as you seek to prepare yourself for this event, this will help you to know what to expect and how to respond in ways that will help your loved one accomplish this transition with support, understanding and ease. This is the great gift of love you have to offer your loved one as this moment approaches.

The physical and emotional-spirit-mental signs and symptoms of impending death which follow are offered to you to help you understand the natural kinds of things which may happen and how you can respond appropriately. Not all these signs and symptoms will occur with every person, nor will they occur in this particular sequence. Each person is unique and needs to do things in his or her own way. This is not the time to try to change your loved one, but the time to give full acceptance, support and comfort.

The following signs and symptoms described are indicative of how the body prepares itself for the final stage of life.


Normal Physical Signs & Symptoms With Appropriate Responses

Coolness

The person's hands, feet, and arms and then the legs may become increasingly cool to the touch and at the same time, the color of the skin may change. The underside of the body may become darker and the skin may become mottled. This is a normal indication that the circulation of blood is decreasing to the body's extremities and being reserved for the most vital organs. Keep the person warm with a sheet or light blanket, but do not use an electric blanket.

Sleeping

The person may spend an increasing amount of time sleeping, may appear to be uncommunicative or unresponsive and, at times, be difficult to arouse. This normal change is due, in part, to changes in the metabolism of the body. Sit with your loved one, hold his/ her hand, do not shake or speak loudly, but speak softly and naturally. Plan to spend time with him/her during those times when he/she seems most alert or awake. Do not talk about the person in the person's presence, speak to him/her as you normally would, even though there may be no response. Never assume the person cannot hear as hearing is the last of the senses to be lost.

Disorientation

The person may seem to be confused about the time, place and identity of people surrounding him/her, including close and familiar people. This is also due, in part, to the metabolism changes. Identify yourself by name before you speak to your loved one rather than ask the person to guess who you are. Speak softly, clearly and truthfully when you need to communicate something important for the patient's comfort, such as, "It is time to take your medication," and explain the reason for the communication, "So you won't begin to hurt."

Incontinence

The person may lose control of urine and/or bowel matter as the muscles in that area begin to relax. Discuss/decide what can be done to protect the bed and keep your loved one clean and comfortable.

Congestion

The person may have gurgling sounds coming from his/her chest, as though marbles were rolling around inside. These sounds may become very loud. This normal change is due to the decrease of fluid intake and an inability to cough up normal secretions. Suctioning usually only increases the secretions and causes sharp discomfort. Gently turn the person's head to the side and allow gravity to drain the secretions. You may also gently wipe the mouth with a moist cloth. The sound of the congestion does not indicate the onset of severe or new pain.

Restlessness

The person may make restless and repetitive motions such as pulling at bed linen or clothing. This often happens and is due, in part, to the decrease in oxygen circulation to the brain and to the metabolism changes. Do not interfere with or to try to restrain such motions. To have a calming effect, speak in a quiet, natural way, lightly massage the forehead, read to the person or play some soothing music.

Fluid and Food Decrease

The person may have a decrease in appetite and thirst, wanting little or no food or fluid. The body will naturally begin to conserve energy which is expended on these tasks. Do not try to force food or drink into the person or try to use guilt to manipulate them into eating or drinking something. To do this only makes the person much more uncomfortable. Small chips of ice, frozen Gatorade or juice may be refreshing in the mouth. If the person is able to swallow, fluids may be given in small amounts. Sponge toothettes may help keep the mouth and lips moist and comfortable. A cool, moist washcloth on the forehead may also increase physical comfort. Vaseline applied to lips, teeth or gums may prevent sticking, cracking or irritation.

Urine Decrease

The person's urine output normally decreases and may become "tea" colored, referred to as concentrated urine. This is due to the decreased fluid intake as well as decrease in circulation through the kidneys. Consult with a Dr., or Hospice nurse to determine whether there may be a need to insert or irrigate a catheter.

Breathing Pattern Change

The person's regular breathing pattern may change with the onset of a different breathing pace. A particular pattern consists of breathing irregularly, such as shallow breaths with periods of no breathing for 5 to 30 seconds, even up to a full minute. This is called "Cheyne-Stokes" breathing. The person may also experience periods of rapid, shallow pant-like breathing. These patterns are very common and indicate decrease in circulation in the internal organs. Elevating the head and/or turning the person on his/her side may bring comfort. Hold his/her hand. Speak gently.

Normal Emotional - Spiritual - Mental Signs & Symptoms With Appropriate Responses

Withdrawal

The person may seem unresponsive, withdrawn or in a comatose-like state. This indicates preparation for release, a detaching from surroundings and relationships and a beginning of "letting go." Since hearing remains all the way until the end, speak to your loved one in your normal tone of voice, identifying yourself by name when you speak. Hold his/her hand and say whatever you need to say that will help the person "let go." Often the patient simply needs to know that the family will miss him/her, but will be all right.

Vision-like Experiences

The person may speak or claim to have spoken to persons who have already died, or to see or have seen places not presently accessible or visible to you. This does not indicate a hallucination or a drug reaction. The person is beginning to detach from this life and is being prepared for the transition so it will not be frightening. Do not contradict, explain away, belittle or argue about what the person claims to have seen or heard. Just because you cannot see or hear it does not mean it is not real to your loved one. Affirm his or her experiences. They are normal and common. If they frighten your loved one, explain to him or her that they are normal.

Restlessness

The person may perform repetitive and restless tasks. This may, in part, indicate that something is still unresolved or unfinished that is disturbing him/her from letting go. Your Hospice team members will assist you in identifying what may be happening and help you find ways to help the person find release from the tension or fear. Other things which maybe helpful in calming the person are to recall a favorite place the person enjoyed, a favorite experience, read something comforting, play music and give assurance that it is OK to let go.

Fluid and Food Decrease

When the person may want little or no fluid or food, this may indicate that the person is ready for the final shutdown. Do not try to force food or fluid. You may help your loved one by giving them permission to let go whenever he/she is ready. At the same time, affirm the person's ongoing value to you and the good you will carry forward into your life that you received from him/her.

Decreased Socialization

The person may only want to be with a very few or even just one person. This is a sign of preparation for release and an affirming of who the support is most needed from in order to make the appropriate transition. If you are not part of this "inner circle" at the end, it does not mean you are not loved or are unimportant. It means you have already fulfilled your task with your loved one and it is time for you to say "good-bye." If you are part of the final "inner circle" or support, the person needs your affirmation, support and permission.

Unusual Communication

The person may make a seemingly "out of character" or unusual statement, gesture or request. This may indicate that he/she is ready to say "good-bye" and is "testing" to see if you are ready to let him/her go. Kiss, hug, hold, cry and say whatever you most need to say.

Giving Permission

Giving permission to your loved one to let go without making him/her feel guilty for leaving or trying to keep him/her with you to meet your own needs can be difficult. A dying person will normally try to hold on, even though it brings prolonged discomfort, in order to be sure that those who are going to be left behind will be all right. Therefore, your ability to release the dying person from this concern and give him/her assurance that you will be all right and that it is all right to let go whenever he/she is ready, is one of the greatest gifts you have to give your loved one at this time.

Saying Good-bye

When the person is ready to die and you are able to let go, then is the time to say "good-bye." Saying "good-bye" is your final gift of love to your loved one, for it achieves closure and makes the final release possible. It may be helpful to lay in bed with the person and hold him/her, or to take the hand and then say everything you need to say. It may be as simple as saying, "I Love You." It may include recounting favorite memories, places and activities you shared. It may include saying, "I'm sorry for whatever I contributed to any tensions or difficulties in our relationship" It may also include saying. "Thank you for..."

Tears are a normal and natural part of saying "good-bye." Tears do not need to be hidden from your loved one or apologized for. Tears express your love and help you let go.


How Will You Know When Death Has Occured?

Although you may be prepared for the death process, you may not be prepared for the actual moment of death. It may be helpful for you and your family to think about and discuss what you would do if you were the one present at the death moment. The death of a Hospice patient is not an emergency. Nothing must be done immediately. The signs of death include such things as: no breathing, no heartbeat, release of bowel and bladder, no response, eyelids slightly open, pupils enlarged, eyes fixed on a certain spot, jaw relaxed and mouth slightly open. Contact your Hospice nurse at the time of death.


Experience Of Death

"Gone From My Sight"


I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, "There, she is gone"

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she let my side.
And, she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me -- not in her.
And, just at the moment when someone says, "There, she is gone,"
there are other eyes watching her coming, and other voices
ready to take up the glad shout, "Here she comes!"

And that is dying...

Death comes in its own time, in its own way.
Death is as unique as the individual experiencing it.

Anonymous


How to Support the Dying

There is no "right" way to behave toward a dying person. There are, however, some general principles to remember that will enhance effectiveness and make time together more meaningful. Because each person is different, the information presented here can offer only general guidelines. Each person can then incorporate the suggestions into his or her own particular style and method of interacting with the dying person. In what follows, the time frame for working with a dying person will be addressed in three sections: Before, During, and After.


Before

  • In the time preceding the death of the patient, the most important thing to remember is be there.
  • Be there consistently, as often as the patient wants, and as frequently as the time schedule permits.
  • Maintain contact on a regular basis, over a period of time, so the dying person will feel comfortable with sharing thoughts, fears, feelings, wishes, dreams, and hopes.
  • Listen more than talk. Follow the dying person's agenda as time is spent with them.
  • If dialogue becomes difficult, look around the room for clues about the person's friends, family and support systems.
  • To avoid Emergency Medical Services for a death in the home, it is wise to talk with the physician prior to this as well as the funeral home. Laws vary from state to state, so it is important to have these arrangements made in advance.
  • At an appropriate time it is important to raise the issue of death planning.

During

  • During the actual time of the patient's dying, the most important thing to remember, once again, is be there.
  • The most helpful things to remember are touch & talk. Touch and hearing are the last two senses to diminish as one dies. Even comatose and sedated people can hear and feel touch.
  • At all times, the caregivers and family members need to explain to the dying person what is being done and by whom. From fluffing a pillow to changing the sheets, dying persons must be treated as though they were fully aware of their surroundings. Let them also know who is in the room; tell him or her who is touching an arm or patting a shoulder. Remind them of the time and date.
  • Do not talk about the dying person in the past tense, as though already deceased. This can be very upsetting for one who can hear but not respond to the conversation.
  • It is very important, especially during the hours and minutes immediately preceding death, that arrangements be made for the patient and family members, friends, spouse, and partners to have time alone with the patient to hold, to touch, to say things one last time before they part.

After

  • Following the death, whether immediately or long term, again the most important thing to remember is be there.
  • Be attentive to family and friends without being obtrusive.
  • Be available to listen.
  • Don't be reluctant to frequently mention the deceased's name and encourage reminiscing by family members.
  • Most important: maintain contact with the survivors long after everyone else has gone back to their own lives.

The above guidelines have been adapted from Charles Meyer's book, "Surviving Death - A practical guide to carrying for the dying and the bereaved."

Adapted from: The AIDS/HIV Support Handbook
Christina Polcari, LMSW
TLC Group - Dallas, TX 1995
http://www.metronet.com/~tlc
TLC Group grants anyone the right to use this information without compensation so long as the copy is not used for profit or as training materials in a profit making activity such as workshops, lectures, and seminars.
Caregiver Network


From Hestia1249

The following is a story from my life on "forgiveness" and what it has done for me. I hope you enjoy it! --Cathy

Growing up in a most dysfunctional home where my dad was an abusive alcoholic and my sweet mom had only and 8th grade education but did the best she could was extremely hard on me. I turned out pretty good though. As an adult who was never close to my dad due to the abuse was later in my life given an opportunity that I will forever be grateful for. They say there is "one in every family" well I was that "one". However, I have chosen to make something good of my abuse. And it truly is a choice if we are coached and directed in the right way.

On November 13.1995 (my sons 13th birthday) my dad was to spend his last day on earth. Three days before this, I did go over to his house to help my step mom out. She was a real sweetheart. My dad was home and the Hospice people were taking care of him at this point. We knew it wouldn't be long now before he would pass on. A couple of weeks before, a doctor ask is if there was someone he might be wanting to see or talk to. We could not think of anyone at that time. He told us that he felt my dad was hanging on to something. A week before as I was visiting him I said,"Daddy, this is Cathy and I love you." He faintly replied,"I love you too." Those words would be the last I would hear from his mouth and those words are the ones I had longed to hear all my life. They were as sweet as honey to me. I had taken off work 3 days before he passed to stay at his house. On Tuesday, November 12,1995, I laid down that night and I prayed that God would someway be there for my dad and let him know I was okay emotionally. ( He knew I had had problems and he worried about me). The next morning, as I had done for days, I would go into his room and sit by his side to hold his hand and feed him morphine to ease his pain. I would talk and sing to him as I watched his temples go up and down slowly from a weak heartbeat. It was 1:45 PM on the next day when the phone rang. My step mom answered it and I heard her say, "Yes he does and she is here now, do you want to speak with her?" So I knew it was for me. As I went to the phone, this was the conversation, "My name is ______ and I am the hospice nurse. About 3 weeks ago your dad said to me, 'I need to make something right with Cathy' and I thought he was speaking of your step mom." (Her name was Cathy also) She said "I don't know what kind of childhood you had but I feel it is 'you' your dad needs to make something right with. I was speechless. For how did she know any of this. Then it hit me, this was an answer to my prayer from the night before. I ask her if my dad would hear me talking to him and she assured me he would. She pointed out to me that hearing is the last thing to go. I thanked her for calling and hung up the phone as I took a deep breath and walked into my dad's room. Prior to this situation I had almost had a phobia of being around death. I sat down beside his bed and began to tell him that I forgive him for such abuse. I said to him that I believe he was a sick man and what he did was not intentional which I did truly feel. I rubbed his arms and face and sang to him. I told him to go on, that we knew he was tired and he needed to let go and be at peace. I said Dad, I am okay and as I watched those slow heartbeats on his temples I knew it would be soon that I would see them move no more. I said to him that I love him and that God had given me this special opportunity to be there with him to help him pass. I looked toward the end of his bed and there I saw the most beautiful angle with open arms saying , come now, you must come with me. I said bye Dad it is time now for you to go to leave here to a much better place. Go ahead and one day we will see you again. I looked over at the clock and it said 2:05 and he passed at that time. There was such a peace in that room that I can not explain. It was awesome! I bowed my head and thanked God for this wonderful experience. I phoned the hospice nurse back and told her what had just taken place. She was in awe at what I shared with her. See what happens when we open our hearts to Gods word. I never in a million years imagined my dad's live would end so dramatic as this and that I would be a part of that. Growing up he always told me in his fits of rage that I would never accomplish anything in life and ironically to forgive this man of his abuse was in the end the greatest accomplishment ever for me. That day was a much healing day and I will forever be thankful for that opportunity. For I had learnt now what forgiveness truly is.


In Passing: Those We Must Remember

From Lndmark191
Re: ASR4768

I am saddened to tell you all that Andy's father passed away Saturday 6/12/99 at 12:30pm. Along his bedside was his wife and daughter so he died in peace with them. He had been in the hospital since last Friday, June 4th. His funeral is Wednesday, June 16th. His battle with amyloidosis is over. Please say some prayers for the family to give them strength during these trying days ahead.
Yours Always,
Teena


E-Mail Box

From BELL OF WV

TO EVERYONE,,, WHO SO THOUGHTFULLY ANSWERED MY PLEA FOR HELP CONCERNING THE 'FEEDING TUBE', I WOULD LIKE TO THANK YOU FOR YOUR TIME AND E MAIL WHICH HELPED ME REACH A DECISION.
AS OF NOW, MOTHER IS DOING WELL ON PUREED FOOD, BUT NOT EATING VERY MUCH. SHE IS DOWN TO 71 LBS. AND GETTING WEAKER. SHE STILL KNOWS MY SISTER AND I AND IS PLEASED TO HAVE US AROUND. WE HAVE BEEN GOING TO NH ALMOST ON A DAILY BASIS. SOMETIMES WE SKIP A DAY, BUT CALL SEVERAL TIMES A DAY. HER HEART RATE IS LOW AND HER ARTHRITIS IS GETTING WORSE IN HER FEET AND LEFT ARM AND HAND. SHE STILL HAS A CATHETER AND AT THE MOMENT HER UTI IS UNDER CONTROL. IT'S JUST A DAY TO DAY THING AND WE CAN DO NOTHING BUT JUST TRY TO KEEP HER COMFORTABLE. THE DR. TOOK HER OFF HER ZANAX AND BUSPAR BECAUSE OF HER LOW HEART RATE AND SHE SEEMS TO BE DOING OK WITHOUT IT.
SHE IS STILL TALKING INCESSANTLY, BUT HARD TO UNDERSTAND ANYTHING SHE SAYS. OCCASIONALLY SHE SURPRISES US AND MAKES A SENTENCE. STILL NOTICES OUR CLOTHES AND KNOWS HER COLORS. STILL TELLS US SHE LOVES US. IT'S SO SAD TO SEE HER THE WAY SHE IS, BUT SO HARD TO LET GO.

THANK YOU ALL AGAIN. I LOVE YOU ALL, AND YOU'VE BEEN MORE HELP TO ME THAN I CAN EVER EXPRESS.

GRATEFULLY,
VIVIAN
(BELLOFWV)



Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)

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