Signs and Symptoms
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We understand and support your desire to aide your loved one in dying in familiar surroundings. We also realize that this period of time may be a very difficult one for you and your family to live through. We want to be as open and honest with you as we possibly can. We give you this sheet of information to help you prepare for, anticipate and understand symptoms that you may observe as your loved one approaches the final stages of life. Not all these symptoms will appear at the same time, and some may never appear. We are always available for information, support and service. We encourage you to call if you need us.


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 to the values, beliefs and life-style of the dying person.


Therefore, as you seek to prepare yourself as this event approaches, the members of your Hospice Care Team want 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 greatest gift of love you have to offer your loved one as this moment approaches.


The physical and emotional-spiritual-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 order. Each person is different and needs to do things in his/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, death.


  Coolness. The person's hands, arms and feet and then legs may be 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 (blu­ish) and the skin become mottled. This is a normal indication that the circulation of blood is decreasing to the body's hands, arms, legs and feet and that it is being reserved for the most vital organs. Keep the person warm with a blanket, but do not use an electric one.


  Sleeping. The person may spend an increasing amount of time sleeping, and 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/awake. Do not talk about the person in the person's presence. Speak to him or her directly as you normally would, even though there may be no response. Never assume the person cannot hear; hearing is the last of the senses to be lost.


  Confusion of Mind (Disorientation). The person may seem to be confused about 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 rather than to 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, such as "so you won't begin to hurt." Do not use this method to try to manipu­late the patient to meet your needs.


  Loss of Bladder and Bowel Control (Incontinence). The person may lose control of urinary/bowel functions as the muscles in that area begin to relax. Discuss with your Hospice nurse what can be done to protect and keep your loved one clean and comfortable.


  Congestion in Lungs or Throat. 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 secretion. Gently turn the per-son'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 on set of severe new pain or pneu­monia.


  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 metabolism changes. Do not interfere with or 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 persuade 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 by syringe (ask the Hospice nurse for guidance). Glycerin swabs and toothettes may help keep the mouth and lips moist and comfortable. A cool, moist washcloth on the forehead may also increase physical comfort.


  Urine Decrease. The person's urine output normally decreases and may become "tea" colored referred to as concentrate urine. This is due to the decreased fluid intake as well as decrease in circula­tion through the kidneys. Consult with your Hospice nurse to determine whether there may be a need to insert or irrigate a catheter (a tube into the bladder).


  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 i.e., shallow breaths with periods of no breathing of 5 to 30 seconds and 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.


  Temperature Elevation. The person's regular temperature may become elevated. This is common and comfort measures should be taken. Consult with your Hospice nurse to determine what is the best treatment. A cool, moist washcloth on the forehead may help to provide comfort.


  Normal Emotional-Spiritual-Mental Signs and Symptoms with Appropriate Responses


1.         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 to the end, speak to your loved one in your normal tone of voice, identify yourself by name when you speak, hold his/her hand, and say whatever you need to say that will help the person "let go."


2.         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 an 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's 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/her that they are normal.


3.         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, and preventing him/her from let­ting go. Things that may be 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.


4.         Decreased Socialization (Withdrawing From Others). 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 him/her and it is the time for you to say "good-bye." If you are part of the final "inner circle" of support, the person needs your affirmation, support, and permission.


5.         Unusual Communication. The person may make a seemingly "out of character" statement, gesture, or request. This indicates that he/she is ready to say "good-bye" and is "testing" to see if you are ready to let him/her go. Accept the moment as a beautiful gift when it is offered. Kiss, hug, hold, cry, and say whatever you most need to say.


6.         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 it's 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.



7.         Saying Good-Bye. When the person is ready to die and you are able to let go, then it is the time to say, "good-bye." Saying "good-bye" is your final gift of love to the 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 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.


8.        Giving Things Away/Making Funeral Plans. Some persons wanting to keep control in their lives, want to give things away to their loved ones and/or participate and plan their funeral in detail. Although this is hard emotionally on their family, it is important for the family to listen and be open to the person's input. The person has already experienced a "loss of control" in their body and this is their attempt to keep some control over their life. Everyone, even the dying, should have choices.


How will you know when death has occurred?


"Dying" may take hours or days. No one can predict the time of death, even if the person is exhibiting signs and symptoms of dying.


Although you may be prepared for the death process you may not be prepared for the actual death moment. 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 enlarge, eyes fixed on a certain spot, no blinking, jaw relaxed and mouth slightly open. When you think death has occurred, call a Continuum Care nurse. She/he will come to the home, If your loved one has died, the Continuum Care nurse will call the coroner, funeral home and doctor and will assist you in any way she/he can.


The body does not have to be moved until you are ready. If the family wants to assist in preparing the body by bathing or dressing, that may he done.


THANK YOU.     We thank you for the privilege of assisting you with the care of your loved one. We salute you for all you have done to surround your loved one with understanding care, to provide your loved one with comfort and calm, and to enable your loved one to leave this world with a special sense of peace and love. You have given your loved one of the most wonderful, beautiful and sensitive gifts we humans are capable of, and in giving that gift have given yourself a wonderful gift as well.


We are here to help. Call Continuum Care, Inc.

St. Croix (340) 772- CARE (2273)

 St. Thomas & St. John (340) 714-CARE (2273)

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