We of Crown Hospice understand and support your desire to aid 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 of these symptoms will appear at the same time, and some may never appear. Your Hospice staff is 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 lifestyle 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.
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 and the skin becomes 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.
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 and 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.
The person may seem to be confused about the time, place and identity of people surrounding him/her including close familiar people. This is also due in part to the metabolism changes. Identify yourself by name before you speak rather than ask the person to guess who you are. Speak softly, clearly and truthfully when you need to communicate something important for the patients 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.
The person may lose control of urinary/bowel functions as the muscles in those areas begin to relax. Discuss with your hospice nurse what can be done to protect the bed and keep your loved one clean and comfortable.
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 inability to cough up normal secretions. Suctioning may not always be the best –due to being uncomfortable and increasing secretion. 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 or of pneumonia.
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.
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 give 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.
The person’s urine output normally decreases and may become “tea” colored-referred to as concentrated urine. This is due to the decrease 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).
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. These patterns are very common and indicate increase in the 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.
The person may seem unresponsive, withdrawn or in a comatose-like state. This indicates preparation for release and detaching from surrounding 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”.
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’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.
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.
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 apart 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 time to say “Good-bye.” If you are part of the final “Inner circle” of support, the person needs your affirmation, support and permission.
The person may make a seemingly “out of character” statement, gesture or request. This indicates that he/she is ready to 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, cry and say whatever you need to say.
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 alright. Therefore, your ability to release the dying person from this concern and give him/her assurance that it’s alright to let go whenever he/she is ready is one of the greatest gifts you have to give your loved one at this time.
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 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 and then say everything you need to say. It may be as simple as saying. “I love you.” It may include saying “I’m sorry for whatever I contributed to any tensions of 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 to let go.
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 present at the death moment. The death moment of a hospice patient is not an emergency. Nothing can 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, no blinking, jaw relaxed and mouth slightly open.
When you think death has occurred, call a hospice nurse. She/he will come to the home. If your loved one has died, the hospice nurse will call a 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 be done.
Thank You. We of Crown Hospice 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 enable your loved one to leave this world with a special sense of peace and love. You have given your loved one 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.