A heartfelt letter from a Daughter that had to make end of life decisions for her Mother an Alzheimers Victim and how she coped with the decision to enter Hospice and losing her Mother and information regarding passing of life. Read the copyrighted enclosed article What To Do Before and After the Moment of Death suggests ways to help both the person being cared for and yourself during the final days of life. What To Do Before and After the Moment of Death suggests ways to help both the person being cared for and yourself during the final days of life. I was and always will be "Irene's" daughter, the daughter of a Beautiful Mother in all ways and also a former Alzheimers Patient ...my late Mother Irene 1921-2007. After a Five year journey with this disease I found myself trapped in the worse nighmare of my life this past February, not knowing what to do and feeling useless and helpless. I was reaching out in a tail spin to anyone and everyone including you on this site. I pride myself on having answers and making the right choices but in this case I was scrambling for some miracle. Then I decided to gather every bit of information on the internet that I could find, looking for answers that no Doctor could seem to help me with. All I got were blank faces from the hospital staff as I stood over the bed staring at my mother who now was in the awful end stages..suffering with aspiration pneumonia and no quality of life and merely a shell of herself. It all started a few days ago at her home where she needed 24 hour care and had no more recognition of even moving her hands. She started aspirating and choking almost to death as the caregiver and I who so lovingly tried to get her to take a little liquid. She was then rushed to the hospital. Little did I know she would never return. We were so calmly told by hospital Doctors that she would never drink or eat again, like it was nothing. We were told she could never drink a drop again and also had pneumonia from bacteria that went to the lungs from aspirating. After resisting the cold uncaring Doctors advice of a PEG Tube in this near death woman that had a body that was obviously trying to shut down for months already I had to gain knowledge on how to deal with this terrible nightmare of Mom dying and figure out what would be the right thing to do for her and I had to understand it as it was happening. Now understand, it was my plight in life to save Mom and keep her from harms way, she was my little girl now and need to be safe and kept with her dignity and that is what I did for five years,... somehow I thought I could keep it this way forever, in her home, safe looking pretty, having top quality care well groomed... but she was not really there anymore, drifting more each day. Only a shell of the woman she used to me. She no longer spoke or recognized anyone and needed extreme care just to keep her alive at this point. There was on day which I will never forget when she lifted her head so high out of the clear blue, as she sat in the wheel chair and said "there is no more Irene", she never really spoke at all after that. I think that was Irene's way (Mom's) of saying goodby. The reality of it all really hit me that day in the hospital when those few but crucial words were spoken so casually "no more eating or drinking"...that was unimaginable...how could Mom live, she was barely hanging on as it was. This was something I could not fix. That was my day of reckoning which I will never forget. A PEG Tube from what I read on the internet was not going to help Mom and most likey have an adverse reaction in a body that is shutting down. I headed for the internet. I searched case studies from all over the world on many sites from specialists all in every country. I researched and researched and at last I found the answers I needed. Thank God for the internet it only strengthened and educated me on doing what was right for my mother...not for me. After all it was about Mother and my selfish feelings of keeping her forever must let go. After realizing it was the only humane choice, I decided on admitting her to the Hospice or the Pallative Care Center Wing at the Hospital where she was for the prior 2 weeks. As I sat there day by day next to her bed I was was really torn with the decision and there were times I just wanted to take her back to her home. still wanted to pick her up and just take her home. Then I realized I wasn't making the decision...it was made by a much higher power. Looking back a little it seemed like only a couple of months ago when my precious mother entered the final stage of Alzheimers or maybe thats when I came to terms with it in my mind..in reality it was probably 10 months ago. I saw her resisting food and water but that makes me wonder if I could have lost her sooner if I had admitted her to a hospital because she wasn't drinking enough and it was more difficult to get liquids and food into her body. We managed to get her to have a few teaspoons here and there to keep her going. No matter what we tried to do Mom was making the decisions or was it God...as she did enter the most final stage of Alzheimers and was not able to swallow or eat anymore, which was confirmed by a test at the hospital that almost choked her again. She passed away peacfully in a Hospice ward here in the USA without pain and much love from family and staff. The Doctor along with most of the medical staff in my opinion did not "understand this disease"...I found myself educating them. We as the cargivers must strive to learn everything we can when dealing with a loved one with this disease. It took Mom 11 days to pass in the Hospice Wing at the hospital. I call it "The Longest Goodby", the most sorrowful 11 days of my life knowing she was there with all intentions of leaving me. I had 4 profuse nosebleeds the day I admitted her from the strain of it all. I was almost sent to the hospital myself. I was there everyday untill she passed in my arms.I played soft music all types from mello Irish Bagpipes to soft Flutes to Ava Maria, I combed her hair and oh how I cried saying "Mama your my beautiful Mama, I love you Mama can you hear me"...She was peacful every step of the way. We reversed roles earlier on with her disease she definately was my little girl in the end and I was the Mother holding her for dear life as she did for me growing up, our hands locked just as they were when we crossed the street together. She passed in my loving arms and the arms of my family very peacfully on February 17, 2007. I watched as the Hospice nurse placed a fabric butterfly on her chest, symbolizing freedom...the freedom to take back her memories, the freedom to be whole again. I too felt her freedom. Note: I also lost my beloved father David victim to this disease 4 years earlier but he passed within 24 hours of going to the hospital with a sepsis infection at 88 years. His disease never advanced to that point of not eating or swallowing so this was a new experience with an old disease, the same disease. I now think of the way he passed so quickly, so peacefully, as a gift I never realized. I guess when it rains it pours as they say. Or the Lord Doesn't give you more than you can handle. I have to think about that. God Bless you and your Dear Loved Ones as you go through this very sad journey. My heart is truly with all of you. I hope you read the following article if you ever face this decision because it helped me understand a lot and comforted me in my decision to let Mom go in peace. NOTICE: Copyright © North Central Florida Hospice, Inc. 1996 Please note: These articles are being made publicly available in the hope that they benefit others in the hospice community. Feel free to use them provided you credit Hospice of North Central Florida with sole authorship and do not alter the content. Please include this note in any copies you choose to make. Thank you. What To Do Before and After the Moment of Death suggests ways to help both the person being cared for and yourself during the final days of life. Preparing for Approaching Death When a person enters the final stage of the dying process, two different dynamics are at work which are closely interrelated and interdependent. On the physical plane, the body begins the final process 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 at work is 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 or she may tend to linger in order to finish whatever needs finishing even though he or she may be uncomfortable or debilitated. On the other hand, when a person is emotionally-spiritually-mentally resolved and ready for this release, but his or her body has not completed its final physical shut down, the person will continue to live until that shut down process ceases. 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 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 great gift of love you have to offer your loved one as this moment approaches. The emotional-spiritual-mental and physical signs and symptoms of impending death which follow are offered 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. Coolness The person´s hands and arms, feet and then legs may be increasingly cool to the touch, and at the same time the color of the skin may change. This 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 blanket, but do not use one that is electric. 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 or her hand, but do not shake it or speak loudly. Speak softly and naturally. Plan to spend time with your loved one during those times when he or she seems most alert or 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. Disorientation The person may seem to be confused about the time, place, and identity of people surrounding him or 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. Incontinence The person may lose control of urine and/or bowel matter as the muscles in that area begin to relax. Discuss with your Hospice nurse 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 or 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 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. 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 your Hospice nurse to determine whether there may be a need to insert or irrigate a catheter. 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 by syringe (ask the Hospice nurse for guidance). Glycerin swabs may help keep the mouth and lips moist and comfortable. A cool, moist washcloth on the forehead may also increase physical comfort. 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 five to thirty 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 onto his or her side may bring comfort. Hold your loved one's hand. Speak gently. Normal Emotional, Spiritual, and Mental Signs and 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 to the end, speak to your loved one in your normal tone of voice, identifying yourself by name when you speak, hold his or her hand, and say whatever you need to say that will help the person let go. 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 is not real to your loved one. Affirm his or her experience. They are normal and common. If they frighten your loved one, explain that they are normal occurrences. Restlessness The person may perform repetitive and restless tasks. This may in part indicate that something still unresolved or unfinished is disturbing him or her, and prevents him or 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 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. Fluid and Food Decrease When the person may want little or no fluid or food, this may indicate readiness for the final shut down. Do not try to force food or fluid. You may help your loved one by giving permission to let go whenever he or 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 or 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 affirms from whom the support is most needed 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 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. Unusual Communication The person may make a seemingly out of character or non sequitur statement, gesture, or request. This indicates that he or she is ready to say Good-bye and is testing you to see if you are ready to let him or 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. Giving Permission Giving permission to your loved one to let go, without making him or her guilty for leaving or trying to keep him or 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 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 or her assurance that it is all right to let go whenever he or 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 and hold the person, or to take his or her 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 tension 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 to let go. How Will You Know When Death Has Occurred? 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 enlarged, eyes fixed on a certain spot, no blinking, jaw relaxed and mouth slightly open. A hospice nurse will come to assist you if needed or desired. If not, phone support is available. 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. Call the funeral home when you are ready to have the body moved, and identify the person as a Hospice patient. The police do not need to be called. The Hospice nurse will notify the physician. Thank you We of 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 to 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 have to offer, and in giving that gift have given yourself a wonderful gift as well. Related Articles: Saying Good-bye Keeping Watch In Memory of My mother Irene 4/27/21-02/17/2007 This was a very worn but favorite picture of hers around age 20.