What to expect?
This is an awful subject, but to those of you who have already lost someone from this horrible lung cancer, what can I expect as the time gets closer? Sometimes I think Danny is taking his last breath, then a gasp. Are there any things to be aware of? Help...
He told me he feels my late kitty jumping on the bed, but I thought I felt it too.
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- 8 Comments
- Hi Cheryl,
I was given this advice:
"The following signs and symptoms described are indicative of how the body prepares itself for the final stage of life:
The persons 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 bodys extremities and being reserved for the most vital organs. Keep the person warm with a blanket, but do not use one that is electric.
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 persons 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 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 patients comfort, such as, It is time to take your medication, and explain the reason for the communication, such as, so you wont begin to hurt. Do not use this method to try to manipulate the patient to meet your needs.
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.
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.
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 persons 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 ones hand. Speak gently.
Normal Emotional, Spiritual, and Mental Signs and Symptoms with Appropriate Responses
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.
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.
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.
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.
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 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.
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.
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."
Hang in there,
[This message has been edited by MaryP (edited 01-18-2003).]#1; Fri, 14 Dec 2007 15:49:00 GMT
- Cheryl... What to expect. hmmmmmm where to start. This will be the hardest posting I have ever done. The last two weeks of mom's life were hard and being sooo close and with children there was no real way for me to look at these last few days till your email. I am sorry for waiting so long to answer.
Mom was always cold until the about last 4 days of life. You can not use hot water bottles or heating pads as it may further damage the nerves and cause more pain. Have a few blankets on hand.
Expect a withdrawal of conversation. May go as far as completely ignoring you when awake. It is their way of trying to help you. Mom also started to see past family members who were gone. At one point, it was like she was having her own conversations with them. The nurses always told us to take the phone calls outside of her room or at least into the bathroom. Alway try and be honest with Dan. Who called, we even used a visitors log for the phone calls so she could at some level understand she was still loved.
Mom actually forgot me about the last month, she would call me by my aunt's name. Do not worry about it. at the end the only one mom was willing to recgonize was her brother and when he came to visit his last visit, she actually lifted her arms as if she wanted to hug him. I remember being so impressed by this effort of mom's I shoved my uncle down closer and said look mom is trying to hug you... and helped her wrap her arms around him. It is one thing I will never forget, seeing the joy in his face when she did that.
The incontinence adult diapers have come along way. Since mom was in the hospice, the nurses did this for us. Mom would have never allowed one of us to do this for her. For her it was just toooooo much, she would not even allow us to help with her sponge baths.
Mom never had the congestion until the last day. When I phoned my husband that day, he asked what the noise was. I told him it was mom and there was a big silence on the phone. He said Leisa I do not know what to say... I said there is nothing to say. We all know that this is the end. And yes her breathing did change it did become shallow the last two weeks. and at night she did tend to gasp a bit more, or early in the morning. I think she did this sometimes just to keep us on our toes. http://www.healthboards.com/ubb/smile.gif
At the time of death, family were on their way. There were 5 plus mom in her room the nurse kept on coming in about every 15 minutes to check. And she made the choice, or at least I like to think so, of when to go. Her next dose of morphone would have been at 2pm. The nurse said at this stage it would be up to us, because the morphine could slow everything down and that would be the end. At 1:58, they pronouced mom gone. She gasped and stopped breathing 3 times before. And then the last time. I think she was giving us all a chance to say good bye and if we needed her and begged her to stay, i think, she would have done everything to stay. But my sister, her husband my dad and myself each said our last goodbyes then she was gone. The nurse came in and said she was gone. She told use to take all the time we wanted. We gave everyone a chance to be with mom alone one last time, and the nurse closed off the parlour for just us. I was able to pack up mom's room with her there and got to talk with her spirit before the funeral home came.
I ..... oh cheryl.... there is so much more to say but I have rambled on long enough. Feel the strength here and know that you have it somewhere deep inside of you.
Mary, thanks for providing just an easy outline to follow.
Yes do not call 911. When you call the hospice nurse, she will come, even if she was visiting someone else. It happened when mom was still home and gave mom a chance to see what would happen.#2; Fri, 14 Dec 2007 15:50:00 GMT
I don't know if I can tell you much, but my mom's last few days were pretty much like what everyone else has described. She did a lot of sleeping and didn't really talk a whole lot, but if she did it didn't always make a lot of sense to us. Of course we had a hard time hearing her because she had and infection in her throat from her last biopsy that they had done. When she did talk she seemed to want to tell us how to do something that she always did, for example she asked for my dad and she told him that he had to put one cup of sugar for each cup of berries and that he had to cook them up on the stove. She was telling him how to make thimbleberry jam. We all wish she would have shared her recipe for making pasties with us, but that one she kept to herself. Two days before she died I had a doctor's appointment myself (I have Multiple Sclerosis) and when I got home I told her that the Dr told me that I was doing really well and that some of my lesions had disappeared. She said "So what." That is how I knew she wasn't really coherent anymore because my mother was not that way, if she could have I know she would have sat up and given me the biggest hug in the world. Anyway, she didn't really eat much for the last 4 days or so, in fact we had a really hard time getting her to take her pills. So me being the one with experience giving shots was the one who had to give her the morphine that she needed. She did have her moments when she was restless, but not too often, one of the times was later one night she wanted to get up and go for a car ride. We got her to settle back down by telling her she had to get her toenails painted to go out and she settled back down. One thing that is somewhat different is that she was never really felt cold to herself, she did seem a little cool to us, but she didn't want anything more than a sheet on her. Her last day one of the aides had come to give her a sponge bath and wash her hair, but when she came in she said she was close to going she said maybe a couple of hours. She called the hospice nurse and the hospice chaplain and they were both at the house before she passed on. They were all very helpful and very concerned about all of us (dad, 6 of seven grown children, 4 of 8 grandchildren). We were all there when she took her last breath and I'm glad we were. The only thing I wish I hadn't done is about 15 minutes after she had died I went and talked to her a little bit and I gave her a kiss on the forehead and of course she was cold and kind of clammy and I think that feeling will stick in my head for the rest of my life and that is not how I want to remember her.
I don't know if this helped you at all, but it sure helped me after a really crummy day. Mom passed away just over 9 months ago and this is the first time I have ever really talked about what happened with her.
God Bless, Sharon#3; Fri, 14 Dec 2007 15:51:00 GMT
- Hi, all. I've tried to thank every one for the answers to this question but I swear everytime I re-read the posts I cried so hard I couldn't do it. Danny is still hanging in there and some days are actually pretty good. He has been awake more since I decided to hold off on the Ativan except for at night. I was telling my sister-in-law how sometimes it feels like he's pulling away and I think he heard me because after that when I went to kiss him he actually kissed back, instead of offering his cheek. He also laid down in bed with me a couple of times even though I know it hurts him really bad to be off the air mattress. Holding my hand like he used to, no one knows how much I miss the every day stuff.
Anyway, I'm praying...for all of us, the ones who have already gone through it and those of us in the middle.
Cheryl#4; Fri, 14 Dec 2007 15:52:00 GMT
My mother passed from complications from C.O.P.D. a few years back, not lung cancer, so pardon me for posting on this message board. I just thought you may be able to use this information.
When my mom was dying, with hospice there, she explained what a person goes through when they're dying, which really helped me. She told me that the body shuts down systematically, kidneys stop working so there's no more urine. Small and large intestine shut down, no more b.m.'s. Eventually there's no bowel sounds. What does come out was already there, weakened muscles can't hold it, so the person is incontinent. The respiratory system shuts down, the toenails and fingernails turn bluish/black, the skin starts to mottle, and it works it's way up the body. You may notice that the fingernails are turning blue. THe earlobes start to cave in towards the back. THe heart stops pumping efficiently, and the brain is not functioning properly. My mom was also on morphine, and the last 4 days she was in kind of a semi-coma. We were with her 24 hrs. day, and on the last day, the whites of her eyes turned bluish/black, and the nurse said that death was soon coming. She said that hearing is the last to go, so I talked to her and played music that she loved.
Sorry if this seems amatuer, I am not a health professional, It may not be in exact order, but it all does happen, we watched it happen as the nurse explain it.
God Bless...#5; Fri, 14 Dec 2007 15:53:00 GMT
- Dear Cheryl, This is Donna,,I have written to you a few weeks ago. My husband is in is last few days now. He took blood tranfusion , which i tried to tell him would not be good in the condition he was in..but he was going to drive himself..he is so sturbbon! So my daughter and i took him. That was yesterday, Today he is paying the price..of that... and the hydration that they did. His lungs are full of fluid today and his heart rate is sky high. His body was too weak to handle all of that. He tried to walk 10 feet and nealy died right then, fighting to breath ..and his heart rate making him pour off shweat. Now he is in the hospitol bed i got for him yesterday, with the air mattress. Oh, dear i wish i would have gotten that sooner, despite his opinion. Over night the holes in his back from Radiation treatmen recalled...are actually trying to heal! But, he feels so cold. (He cannot tell if he is hot or cold much for a week now) I don't know what his passing will be like..but, i know it will be soon. His urine has been only passing about once every 24 hours. He holds onto his liquid meal drink...and thinks he drank several.....without taking a sip...sometimes. He is in and out of confusion for a week now. Fineally my kids got to see that yesterday. I had the Hospice nurse meet my kids here to explain to them what to expect and to tell them just how bad he is. She said to them," I would be surprised if he is here in 2 weeks." So, now my kids believe me..and have to accept what is happening. Before , they fought me on my choices of how to help him. Oh, dear..i am off subject probably. sorry...i am a bit lost. I understand what you said...last night my husband laid his head against mine and for the first time in many days spoke directly to me..as a wife..for a brief moment , my husband was there.. but, then he was gone again lost in this middle ground..between life and death. God Bless us all..I send you (tight) hugs, Donna#6; Fri, 14 Dec 2007 15:54:00 GMT
I am so sorry to read about your loss. Even though I dont know you in your post i can just read your pain.
I am hoping that this wont be to insensitive to ask but what kind of cancer did danny have? I cant find much encouraging news on what my daddy was just diagnosed with. So i was just wondering if you wouldnt mind telling me
once again I am so very sorry for your loss
ocean#7; Fri, 14 Dec 2007 15:55:00 GMT
- Danny died from Poorly Differentiated Adenocarcinoma. That is a non small cell lung cancer(NSCLC). I read everything I could find on the subject but nothing could have prepared me. There was a book recommended to me called Final Gifts that was some comfort near the end. Actually I was reading a chapter about some choosing to die alone, I feel that was Danny's final gift to me. Take care and good luck, I will ask Danny to watch over us...Cheryl#8; Fri, 14 Dec 2007 15:56:00 GMT