How do we support the body, mind, and soul of a dying person?
We want to know how to tell if our loved one is in pain so we can get them the right pain medications. We ask what we can do to make a loved one more comforted and comfortable. We need to know the signs that a person is dying.
I wrote this blog several years ago but have just updated the content. I hope that you find some of your answers here.
This post is also available in audio form through Soundcloud.com. By clicking the icon below you can listen to the audio version of the post or download the audio version.
I originally wrote this post at the urging of four young adults who sat vigil at their mother’s death bed. They were completely unprepared for what they were faced. They contacted me for suggestions on what they could do to comfort their mother. At the time, their mom was dying from cancer, only had a few hours left to live, and she was rarely conscious. They asked me to text them a checklist of things they could do during the night to help ease her transition to death. After their mother died, they asked me to share the checklist I wrote for them with all of you.
I offer the following suggestions for things you can do while sitting vigil at the death bed of someone you love. This is not an exhaustive list of what can be done to comfort a dying person, but it is offered as a starting point.
1. Pain Management: Work with the doctors, nurses, hospice professionals, or end-of-life doulas to assure that your loved one has all the pain medication and muscle relaxant they need to be comfortable.
What are some of the signs that tell you the dying person is uncomfortable physically or in pain? The person may keep shifting around in the bed trying to get comfortable, or they scrunch their face up into a grimace, or their limbs contract in a muscle spasm. These are just some of the signals that they are experiencing pain.
Running a temperature. When someone is dying from cancer, for example, their body can run a high temperature, and with those temperatures there can be seizures. In these cases, the patient may also need medications to relax their muscles.
Dehydration. Muscles often contract during the dying process from the lack of oxygen going to muscle tissue or from dehydration. Painful muscle spasms can occur during the death process. That is why doctors may order a pain medicine, like morphine, be given to a patient along with a muscle relaxant like Ativan. Because you are sitting vigil, you might notice signs of pain before any of the medical professionals do, so write down your impressions of the person’s pain or comfort level and note the time, then share those notes with the doctor, nursing staff or hospice provider. If you are not familiar with hospice or how to obtain hospice services for your loved one, please see What is Hospice? How Do I Get It?
2. Physical Comfort – the mouth: When a person is in the final stages of dying they are usually breathing through their mouth. The mouth dries out quickly and that is physically uncomfortable. It is helpful to swab the mouth and gums regularly with a glycerin swab to keep the mouth moist. You can also apply a non-wax based lip balm on their lips so the lips don’t dry and crack. It is suggested that you keep a good supply of glycerine swabs with a cup of water to wet them in before use and a good lip balm (again, not wax based) at the bedside and use them at least once or twice an hour. Swabs are intended for one use, then throw the swab away and start a new one soaking in water for the next use.
3. Clean the Body While Sitting Vigil: Gently wash the face, neck, arms, hands, feet, and legs of the dying person with a lukewarm damp cloth if they are feverish, or a warm damp cloth if they are cold. After cleansing, apply a light moisturizer to their face, hands, arms, legs, and feet. This keeps their skin feeling clean and soft, and gives them the gift of touch through massage of hands and feet. This is giving them the gift of feeling physically cared for in the process of their death.
4. Peaceful Environment: Keep the room quiet, lower the lighting if you can, ask people to speak softly, no loud noises, no harsh lights, and just as importantly, no harsh words in the room. Limit the number of people in the room at one time, numbers of people can get overwhelming for everyone involved – the person who is dying as well as the family keeping vigil.
5. Time Out: Let the person who is dying have time alone. This may be hard to do because you want to be with them constantly, but they need time and space alone to transition. Please, take short breaks from the death bed vigil. You need the breaks as well to help you sustain yourself through the vigil. You could take a walk outside and get fresh air, take a shower to help wake up, change clothes, talk with a friend, eat a healthy meal, go for a short run or workout, or meditate or pray in a quiet space.
6. Fresh Air: Some cultural traditions call for a window to be open by a death bed, at least a small opening of a window to allow in some fresh air. It is believed that an open window in the same room as a death bed is needed to allow the souls of family members who have already died to come to retrieve the soul of the person who is dying, to take them into the next life. Others believe that if the room is closed, the soul will be trapped and unable to move on. Regardless of cultural or religious beliefs, fresh air helps everyone at the death bed because death comes with odors that are not pleasant and closed rooms get stale. If you can, open a window, at least a little bit, to let in air. Overly fragrant flowers are not helpful in a death room as the scent can be overwhelming, I suggest you clear them from the bed area or the room altogether. Set up a small fan to move air around. Keep the air in the room as fresh as possible.
7. Observe Religious or Spiritual Values: Religious and/or spiritual rites are important for many people as part of their dying process. Find out if the person who is dying wants a visit with a religious or spiritual advisor. Please do not wait until the last hours of life to ask this question because arranging such visits can take time. These visits could range from receiving the Anointing of the Sick (which may include Last Rites), or a religious person to pray with them, and/or to receive healing, or to resolve spiritual conflicts, or to receive counseling, or assistance with meditation. Reiki practitioners are also often available to offer healing energy work with the dying as well. Whatever the individual’s belief system is, please respect it. If the person who is dying asks for any form of a religious or spiritual or healing visit, please do whatever you can to make that visit happen for them.
8. Dying People Say They Want to Go Home: The dying will often say they “want to go home” even if they are already in their home. I have always taken this to mean that they want to leave their physical body, they are done suffering, and they want to move on to whatever dimension/realm they believe follows this physical life. But it can be disturbing to hear this over and over, especially if you are caring for them in their own home.
The person may also be trying to get out of bed, saying they need to “leave now” or “go home.” That can be unsafe as they usually cannot stand on their own. Instead of saying “no, you can’t get up” you can place your hand about 3-6 inches above the person’s shoulder so that they encounter your hand as they try to get up. That usually stops them from pushing further with their desire to get up. If they are demanding and thrashing to get up, ask for medications to calm them down so they don’t hurt themselves.
I had one man trying to get up from his bed to “go home” and I explained his legs would not hold him up anymore and if he tried to stand he would fall. He looked at me and said “No, no, no, no, no. That’s all everyone ever says to me.” I quietly said to him, “you have the choice to leave your body any time and go to a place where they only say yes.” And I kept reassuring him he could leave his body at any time.
Whether they are asking to “go home” or not, I recommend that you, and everyone else participating in the vigil, tell the loved one that you are all fine and they can leave to “go home” anytime they want to or need to go. I suggest you repeat that phrase during the course of the vigil, especially when you are leaving the room for an extended period of time. You could reassure them that whatever they may be troubled by, either a concern for their spouse or a child, or with their own unresolved conflicts, they can trust that all will be well, and they can let go of this life in peace.
9. Talk to Them: Keep talking to the person who is dying, even if they are in a coma, or read to them. There is a strong belief that they can still hear and are aware of all that is going on around them. Speak from the heart, from a place of compassion, or forgiveness, but don’t speak from anger – it is not helpful to you or to them to bring up hurts or past wrongs.
If anger is keeping you from visiting someone who is dying, please consider reading Anger Stops You From Visit to a Deathbed? Suggestions.
You can also read to someone who is dying, if they want you to or if they are in a coma. For suggestions on reading to someone who is dying, you might want to check out one of my most read posts What to Read to a Person Who is Dying?
If you want something funny to read, you can check out my post In Death, Laughter is Allowed! This post was cited in a USA Today article, FYI. It’s okay to laugh with the person who is dying, with family members and friends. Remembering the good times, or funny stories you shared with your loved one is okay to do. Remember the dying person’s life, not their death.
10. The Dying See Dead People: People who are dying often say they see a loved one who is dead. They may say they see friends or relatives long deceased standing or sitting in their room or by their bed, or tell you they had a long visit with a deceased friend or relative. If you hear this kind of statement, please don’t argue with them or tell them that person is dead and isn’t in the room. Whatever they are seeing, whether it is a dead spouse, or deceased siblings, or dead friends, you could reassure them that those loved ones are there for them, to help them move on. Hopefully, those visions are a comfort to them. Maybe their visions of being visited by dead relatives or friends at the time of their death can be a comfort to you as well.
11. Music: If you play music while sitting vigil, please do so quietly with no one talking over the music, and play it only intermittently. Please do not put the speakers right at the head/ears of the person who is dying. The person who is dying needs a quiet space, a tranquil space, to transition from their body, not a party with music playing and people talking over the music – unless they ask for such a party to happen!
12: Skype: Yes, I just said Skype! Video calling services, like Skype or its equivalents – like Google Chat or Facetime – offer an amazing tool to use if close relatives or friends cannot get to the death bed of someone they love. I recently advised a family preparing to sit vigil where two of the adult children were in foreign countries and could not make it back to be with their mother who was dying. The one child who was with their mother set up her own personal laptop and her Ipad and Skyped her two siblings into their mother’s room to keep vigil with her. Using Skype, all three of them could talk with each other, talk with their mother when she was conscious, and ask questions of the nurses.
According to the adult child who was present with their mother, Skyping her brother and sister in to share in the vigil at their mother’s death bed helped her tremendously because she did not feel alone and overwhelmed, and there was shared decision-making. Best of all, there was shared time during the moments their mom was conscious, and they all felt they experienced the death of their mother together as a family in real time – no one was left out.
I encourage you to think about the use of technology to bring everyone together to sit vigil and be included in the experience of the death of a loved one.
NOTE: Some hospitals and nursing homes do not have internet access in individual patient rooms. If you are going to Skype, please be prepared to create a hotspot using your phone or other mobile devices in order to use Skype or any other video conferencing service.
13. The Person Dying Abused Me. If the person who abused you or abandoned you is dying and you are asked to come to their death bed, please know you don’t have to if you don’t want to. This is your choice. If the person dying asks for your forgiveness, you have the choice to give that freely but no one can force that on you. I wrote a separate post that may be helpful to you, it’s called When Your Abuser or Abandoner Dies: How to Cope and I hope it helps.
After Death: Preparing the Body
Once your loved one has died, take time to sit with their body for your own process of letting them go.
Some people are comfortable washing the body in preparation for burial, others are not. Please know there is no right or wrong decision here. If you want to wash the body, then do so, slowly and with care, with the assistance of the nurses if they are available to you. If you do not want to do this, then ask the nurse or hospice provider at the house to wash the body before it is sent to the morgue or transported to the funeral home.
Pick out clothes for your loved one to be buried or cremated in. You can either dress the body or send those clothes with their body to the funeral home or cremation service. Don’t worry about shoes, they can go barefoot or with their favorite warm socks to the funeral home or cremation.
After Death: Feeling Relieved/Happy/Sad All At the Same Time
After sitting vigil and experiencing death, you may feel a degree of relief that your loved one’s suffering is over, and it is o.k. to feel that way. As much as you loved them and will miss them, you feel relieved that they are no longer suffering physical hardship or pain. Relief is a perfectly normal reaction to the death of a loved one who has been suffering.
One friend of mine went through a particularly grueling death process with his father, who suffered horribly for five years before he died. When his father died, he called me and said, “I can’t stop smiling! People are going to think I didn’t love my Dad, and of course, I did, but I’m just so happy for him that all of his sufferings are over. What do I do? Friends are coming over right now to mourn with us.” In this family they were all devout Christians, so I suggested he keep smiling and simply tell his truth by saying to mourners, “I’m happy because he’s with the Lord and his suffering is over.” Whatever your religious beliefs, or if you have no religious affiliation, it is usual and universal to feel a sense of relief when someone you love, who had been suffering, has died.
It’s also usual to feel some degree of euphoria at the end of a vigil, to have a sense that the universe is much larger than yourself. You have just been living in sacred space while attending your loved one in their death process. In many ways, this is similar to birth. This experiencing of death first hand is the essence of life, of existence in human form. Let yourself feel whatever comes up for you. It may help to journal or meditate about the experience, to write letters of thanks to those who helped in this journey, to cry and to laugh. Please let yourself feel everything from profound sadness to relief to joy after a vigil is over.
Again, these are just some suggestions for how to comfort a dying person while sitting vigil at their death bed, and some of the emotions you might experience in the hours or first days after a death. If you have been through the death of a loved one, if you have sat vigil at a death bed and have helpful advice to offer, please leave a comment to share with other readers – your thoughts are welcome here!
Holy Smokes.
That is exceptionally detailed and appropriate and needed wisdom.
Why isn’t this part of high school curriculum as much as balancing one’s checkbook?
Isn’t it odd that in a country/world where at least half believe in some form of an “afterlife” that everyone’s scared to talk about it?
Well done and thank you.
bd
Thank you! Because we rarely provide physical care for our loved ones in the hours before their death, because they are usually fully cared for by nurses, we never learn about the part we can play in making our loved ones comfortable, physically and emotionally. Even in a hospital setting, or hospice, those who sit vigil can help ease the person into their death with simple things, like keeping their mouth moist, lips moist, giving the gift of touch, fresh air, or soothing sound. Thanks for reading and leaving a comment!
Hello. I lost my Uncle Robert around Christmas time. But I didn’t grieve his passing. Does that mean that I am heartless because I didn’t grieve him or because I didn’t feel anything about his passing?
I don’t think you’re heartless.
I think it’s hard that often, there is pressure to feel something other than what we actually feel.
I would say that getting to talk about your relationship with your uncle and with other deaths or losses might help to uncover the history that lead to feeling how you feel.
I lost my mom last year at this time…I sat with her while she was passing and it had been raining and snowing that morning..but when she passed, this ray of sunshine came through the window….like it was her going away into the sunshine.
Anita, thank you for sharing that beautiful moment with all of us!
Let’s call him Terry . I was his around the clock live in for 3 half months, I did know him before the Bain Cancer showed up, than I move in. I got to bond a bond I will never understand, and him with me to. The last he was preparing to leave his shell. He was born special needs . His are someone was in the room with me and him, he was in alot pain I was talking to him he would look really quick like there was someone behind me he was looking at, I would quickly turn around to see who it was no one in site. He reach out for them. The family made go sleep. I got to him it was just me and him everyone told me to tell him it was ok go to mom and dad , I was rubbing the tip of his thumb (they say that and feet are the last they feel) , hearing the can up to very in everything. Talking with him thank him, and had low light on, claiming music very little sound. His eyes pop open and strated moving his month like he was saying moma, than his body strated shaking all over very much but it slowed down , thank god his brother cane running, but he was gone from his body but still had heart beat, they had to give tine death 3 time. RIP my Angle
Dear Lisa, thank you for sharing your story as a caregiver to your friend. I’ve had the same experience with people who are dying turning and talking to someone else in the room when I’m the only one there, or looking at something intensely that is not there, or telling me “there’s a man over there” and pointing to a corner of the room. There is much we do not know about the dying process. But what I do know is that “Terry” was very, very fortunate to have you as one of his caregivers. Again, thank you for sharing this experience with others who visit this post.
Totally agree with being in a sacred place and the same atmosphere as a birth .Also think around death you are given many unmissable signs that prove there’s a higher presence around to help everyone involved
When was balancing a checkbook part of a high school curriculum? It should be.
I totally agree. The best detailed and precise article.
Thank you, on behalf of myself and hopefully many others who will see this post and be able to use some or all of this information to help assure a peaceful transition from this world for their loved ones and perhaps even themselves. I can’t think of a more selfless act than to be with a person during the dying process; thanks again for sharing this vital information!
I appreciate the advice. This is a must read for anyone who needs to deal with the painful loss of a loved one.
Thank you for letting me know the advice was helpful to you, LaDawn, and I hope you are finding the comfort and support you need at this time of loss in your life.
My 24-year-old daughter is dying. My heart is in my throat as I write this, but I wanted to thank you for sharing this wisdom. I found it by googling the words “What is sitting vigil hospice.”
Hi Sherry, I am so sorry that your daughter is dying and that you needed to find this post. I hope the words in this post and other posts on this blog help to support you and your daughter, your whole family, at this time. I also hope that hospice is involved and providing your daughter and your whole family with counseling, medical support and compassion. And thank you for taking the time to read this post and leave a comment.
I’m so sorry to hear the news. Praying for you, your daughter and your family. May you, your family and your family in a tranquil environment and I pray for you all to be supported well by those around you.
My mother had a ‘good death’. I was with her continuously from her diagnosis to death…a period of two months. We planned her beautiful simple ceremony and where I would scatter her ashes…in the sea off the tiny beach across from her home. She chose her favourite music and poetry.
But above all, she sought my agreement that she could give up living. These were the hardest words for me to say.
Thank you so much for sharing this with me!
Steven, you are so welcome! And thank you for taking a moment to leave a comment, truly appreciated.
Right before the passing of my mother I read this list. After almost three days of her staying awake and not knowing what to do or how to comfort her, I opened her window. Soon after opening the window for her she passed. I have never heard of doing that but do believe in my heart that is what helped her to pass. She loved having her window open rather it be 100 degrees or snow on the ground. Thank you. Also, do you have any advice on how to grieve?
Hi Brent, so glad you found this post – opening a window sounds so simple, but it can be a catalyst to help a soul move on – and has been a ritual in many cultures for a long time. As to how to grieve, you might want to check out my post “Grief is Not Selfish!” – it talks about giving yourself permission to grieve, to sit and stare into space, but also puts boundaries on how you interact with others. The message is to take the time to work through YOUR process of grief, it’s not a selfish emotion, it’s part of our process, our experience of life and death, and being in awe of both. I hope you’ll check it out, it received nice comments from a grief counselor who recommends it on his blog. Please feel free to ADD to ideas that could help others by leaving a comment. Best wishes to you!
Thank you so much for this. I wish I had this advice when my beautiful sister passed away from ovarian cancer. I especially appreciated the comment about sitting with your loved one after they have passed. I found myself all alone in the room with my Sister and again with my Mom but to me it was so important to stay a little longer.
This is a wonderful post. Thank you
Hello Irene, thank you for your comment, it means a great deal to me to hear from visitors to this blog. It is so important to sit and be present during and after a death. Bathing a body, or just holding a hand, taking the time you need is critical for each of us. So glad you took your time with your Mom and sister to be with them before and after their deaths.
This was very helpful in helping me overcome the grief I suffered from losing my only aunt, who was like a big sister to me. She suffered from Parkinsons for many years and I brought her cross country to live in a nursing home near me since she was no longer able to live on her own, needed 24/7 care, and had no children of her own.
The guilt I felt as she neared the end of life was immense. But I think I did all the right things after reading this. In her final days I spent several hours talking to her soothingly, holding her hands, telling her everything would be okay, that she had fought hard and long enough, and she should let go now and be free to go wherever she wants, I told her she’d be going to a much better place where she would be free and happy. She was unconscious this whole time, but I felt she could hear me.
The day before she passed you could see she had little time. Her face was expressionless, and her half closed eyes stared into nowhere. I decided to to play her favorite music by Placido Domingo. And suddenly her lips parted and she got the biggest smile on her face. I was amazed. The next day I spend another couple hours playing her other favorites by Elvis. This time no reaction. But I still felt she could hear it and it was bringing back so many memories of her childhood.
I left the nursing home at 9pm and at 2am got a call that she had passed away. I was just so happy that her last memories were of us together and of her hearing her favorite music. I think she went peacefully.
Dear Christine, thank you for leaving this beautiful comment – it sounds to me like you just knew what to do to comfort your aunt in her final days and you were right there, fully present, with her. I’m glad the post helped you with your grief. What a generous and loving gift you gave your aunt, your presence and love during her final days. Take care of yourself, be good to yourself, get rest and know that she is at peace.
Reading this brought me back to the deaths of our father (who died from cancer) when I was 14 and my mother who died many, many years later from end stage Alzheimer’s disease. Thank you for this checklist and I agree wholeheartedly with everything in it. I happened onto it doing some research for a story I’m writing, but I will bookmark it.
Thank you, Rhoda, I’m so glad you found this post and I hope it helps you with your writing. I truly appreciate the feedback!
I just lost my father yesterday after I sat with him for 3 days day and night. This checklist has reassured me that what I wanted and tried to make sure he had was completely right! This has given me peace knowing that I was right on track with what I was doing to help his transition to death as comfortable as possible, both physically and spiritually. Thank you!
Patty, what an amazing gift you just gave your Dad, by sitting vigil with him for three days, both day and night, making sure his physical needs were met and keeping his soul company with your loving presence. I am so glad you found your way to this blog and this post and that it was helpful and comforting to you. I hope you take time to rest and restore yourself, and take time to grieve. Take good care of you now. And thank you for leaving this comment, I am truly grateful for your feedback.
We have been taking care of my Mom at home. She has dementia and is near the end of her long journey. These last two months have been so very hard as everyday we don’t know what to expect. My sister found this post and it will be a great help to us as we try to help her with this last part of of her time here on earth. We are a large family and will be using skype to keep her in touch with her children and brothers and sister. The things on your list will help so very much. Thank you.
Thank you for taking the time to comment, Debra, it is truly appreciated. So glad you find the list helpful! Best wishes to you all in this journey – your Mom is blessed to have your support.
This information is so very valuable, and it’s gentle delivery comforts me as I prepare for my 93-year old mother’s death. After receiving a phone call tonight about my mother’s declining health, her passing became much more of a reality for me. I watched a TV movie last night, in which someone said that life is hard, and someone else responded that so is birth and so is death. Thank you for your compassionate counsel. Blessings to everyone who has the need to be informed about this very natural life experience. I’m better prepared to be a loving participant in Mom’s transition.
My dad went into the hospital as he was not feeling well, they did some testing and we found out he had advanced pancreatic cancer, He wanted to go home to live out what little time he gad left. Hospice came in they were wonderful, my dad received the best care from our family and the hospice caregivers. My dad passed away peacefully 2 weeks after he got home , there was always someone there to sit with my dad, he was never alone, he never suffered he had pain meds that kept him comfortable, but the day he passed that morning he looked at me and told me he was ready to go, the hardest thing I had to do was give him the okay to leave us, those were the hardest words to came out of my mouth, but I knew I had to tell it’s okay , my mom would be there waiting for him, that afternoon my dad passed peacefully. I am so glad I was there during thst time to spend with him, I miss him terribly but I know he is in a much better place.
I and my 3 sisters nursed my oldest brother after he was diagnosed with bowel cancer. His wish was to remain at home and we were alone with him in his final hours without any nurses, it was a very scary time for me as we had buried our youngest brother less than a year before at 49 to the same cancer, in the end i felt privileged to be able to do what I was able to do and he died very peacefully and I wasn’t afraid
Hi Cathy, what an amazing, strong family you and your sisters have created and sustained and what a great gift to your brother to support him at home despite your fears. I’m sure he was grateful to each of you for seeing him through his death at home. And thank you for sharing this story openly for the readers who visit this site – at home deaths are not perfect, caregivers are scared, sometimes hospice nurses cannot get back to the home in time for the last hours of life. Thank you for sharing that reality, along with the knowledge that at home was still preferable to your brother and you supported his choice.
I am sitting with my dying Mother right now at Hospice. Everyone here, even the groundskeeper, has been so gentle, calming soothing and educational. They are taking loving care of my Mother and that puts me at ease.
I feel a bit odd that I’m not crying, not wringing my hands full of angst or anxious: I am looking forward to Moms passing with a heart and soul full of faith and I find my faith is a calming factor.
I am concerned, however, if at some point it’s all going to hit me and I’ll feel devastated or lost without her. She is 83 and has lived a fantastic, full life. I am 54 and wondering if deep inside, the child in me is going to feel all alone. I have a wonderful husband and children; all extremely supportive making this feel a lot less difficult.
Three days ago we were told “At any time now”. I’ve been ready but I feel “what’s the catch?” . Why aren’t I a “mess”?
Hi Meg, first, let me thank you for so openly sharing your story here with me, and with all of the other readers. I believe that your faith that you reference is carrying you through your Mom’s active dying stage. I felt this way as well with both of my parents in their active dying stage, it’s almost like time is suspended or moving very slowly. After your Mom dies, you’ll likely have several mundane things to attend to, like notifying people, planning/experiencing a celebration of her life/funeral. Once that is all over, or in the quiet moments of those full days, you may find yourself crying hard, holding a picture, or being held by your husband, and then you may feel relief that her suffering is over. When it is right, you will let all of this sadness out. It sounds like right now your faith is sustaining you, supporting you, easing this period of your life, and that is something to be grateful for in these days. Again, thank you for leaving such a heart felt note.
Dear Meg, my heart is with you. My mother passed away peacefully on Monday. She lasted almost a two full weeks in palliative care without any sustenance, her body slowly shutting down. And like you I did not feel angst. A few soft tears but we knew her time was coming, after living with Alzheimer’s for several years. I felt much relief that her long, hard, suffering was coming to an end. Now in the days following her death, I have not yet really broken down. I am not sure when this will come. Right now, beautiful memories of experiences and times spent together fills my heart. When I look back on the days spent with her in the hospital, it is becoming a blur, but the feeling of peace and given the extraordinary gift to feel and experience this runs deeps. But I know at the same time it is so hard to free ourselves from self-scrutiny and judgment. Be as you are, in this moment. Love L.
For my Mum, I did almost everything you said not to do, and almost nothing that you said to do… Probably shouldn’t read posts like this year’s after. Oh well… My Mum had loud and flamboyant friends… What can I say, they came to sit with us in the dying room at the hospital and we celebrated the good times… She told me she wanted people to do that… Ticked that box… Everyone’s journey is different… This was ours.
Hi Bree, everyone’s journey is very different and THANK YOU for telling us all that the most important thing about dying is to let others know what you want to have happen. I’m usually counseling people where the patient is comatose, or in dementia, or bleeding out, so lots of people in the room at once would not be helpful to the person who is dying. But it sounds like you did all of the RIGHT things for your Mum because she was able to tell you what she wanted and participate in seeing her loved ones. Good for you all! I truly appreciate your comment!
I have been caring for my grandmother for the last month and a 1/2.. I brought her home after the sudden unexpected passing of my granddad, because my grandmother became very ill (almost immediately after burying my grandad) from lung cancer that may have now traveled inside her body. Bringing her home with me from Oklahoma to Texas was a must as there wasn’t really anyone else as readily available to care for her, and plus I wanted to so badly. Myself and my 11 daughter have recently became under fire from my grandmother for not returning her back to Oklahoma to live alone.. And as her condition decreases so does her fondness of us. Today I can’t speak to her without making her angry or irritated.. My daughter kissed her on the head and told her that she loves her and she replied that ” no you don’t, I hate you”.. My grandmother was very sweet by nature and now I’m cringing when I speak to her, afraid of the response.. Is this normal? Or do I just have the worst possible scenario?.. When people talk about their loved ones passing away, you hear things like “passed away peacefully, surrounded by family and friends”.. I don’t seem to find much information about loved ones who are hated at the end. 🙁
Hi Patty, you clearly have a challenging situation on your hands. Some elders lose their “social filters” as part of a disease process or dementia and they can become verbally abusive, even physically abusive. Your first question has to be what is best for your young daughter and for you. There are support resources that may help you. First, I suggest you have your grandmother assessed for psych issues related to her age or to the cancer spreading, maybe it’s spread to her brain. I suggest you have a geriatric physician or treating oncologist assess her for whether or not she needs antidepressants or other medications to help her feel less anger or agitation, or feel more calm. She may also need medical support to reduce any physical pain she is suffering. The other issue is whether or not it’s time to place your grandmother in a facility – assisted living or nursing home, or a hospice facility if she is not treating her cancer. You could call your local Area Agency on Aging, sometimes called Council on Aging in some states. They provide free help for elders and their families in sorting through selecting an appropriate placement outside the home, getting Medicaid coverage to pay for that care, and other services to support in home care if that’s the way you want to go. But your daughter’s safety and your happiness need to be part of this equation. Sometimes the at home placement with family as caregivers just doesn’t work out for a whole lot of reasons. Or maybe your grandmother just wants to go back to Oklahoma, to what she knows, even if it’s to a care facility there. You could ask the doctor who examines your grandmother to refer her for a psychiatric social worker assessment to help you all come to some decisions about how to move forward. I know words hurt, but try to keep in mind that she is grieving the loss of her husband, she’s been moved to a place she is not familiar with, she has cancer and maybe dementia. Put yourself in her shoes and then maybe the words won’t hurt so much when you understand that she may not know what she’s saying, or that she’s in so much pain she wants other people to hurt as badly as she does. And you are not alone, I have many, many stories I could tell of elders behaving very badly toward their families and caregivers in the last years or months of their lives. Usually because the filters have come off and they are expressing raw emotions like over the top anger, or narcissistic behavior (they want everyone’s attention all the time so they make problems where there are none. Please take care of yourself, your daughter, and reach out for help in resolving this situation so all of you get what you need and can be at peace.
I wonder if the cancer went to her brain. Changes in the brain can definitely change personality. I’m so sorry. What a terrible thing to happen for you and your daughter. I hope five years later what you remember is the grandma that you loved enough to care for.
Paula,
As a former lawyer who did some work in elder law, and current chaplain for a hospice, I am so appreciative to see all the points I make with client families along the way in one place. What a gift for your readers as so many folks come into these situations isolated, afraid and without resources to assist them. Thank you. Interestingly, I may be spending my winters in Waitsfield in the next several years (my husband will be retiring) and will be looking for hospice or hospital chaplaincy work if you are aware of any organizations you particularly respect in Northern Vermont. Thank you.
Hi Lynne,
Thank you for leaving such a lovely comment! I’ve sent a full reply to your gmail address and hope those ideas are helpful to you in your new endeavors in Waitsfield. Northern Vermont is beautiful in winter – hope you enjoy!
In January 2016, my husband, Roger, was diagnosed with stage iv-advanced pharyngeal cancer that has since spread to his lungs. Ten days ago, the radiation oncologist told us that he estimates that Roger has approximately 1-4 months to live. How very surreal when you know this in your heart, but the doctor finally lays it on the line. When Roger retired, he moved from Texas to his home town in Oklahoma. I have elderly parents, so for the last 6 years, I have traveled back and forth. Since January, I have been in Oklahoma full-time, except to return home for our daughter’s college graduation in May. I am his sole caregiver and I keep constant watch over him. He is sleeping more and more and I noticed that he is having muscle spasms all over his body. I feel that death is approaching sooner than later. Although the doctor said that they could not do anything else for him, he still has two scheduled appointments on July 11th and he figures that he has nothing to lose. I’m trying to convince him that hospice is the better option, but he’s holding out.
I am way out in the country with no family/few friends, so I have nothing to do but read and hover over him. I came across this site and felt compelled to write, as others did, to let you know how helpful and informative I found your writing.
Thank you…
Angela, thank you for the kindness of leaving this message for us all. It’s easy to forget that many people live in rural areas where resources for support in the home is limited, if available at all. If your husband refuses hospice, you may ask the doctor to prescribe home health services for Roger, to get a nurse in for pain management, and an aide in to the house to help you with his care. Sometimes before hospice comes into a situation, home health is already there providing nursing and aide level care (helping with pain management, bathing, etc). I also wonder if you could tell Roger that YOU need him to enroll in hospice care because you need the support to help you care for him at home. Otherwise, without that kind of support, it’s likely you will have to ask that he be hospitalized or placed in a nursing care facility. I hope that you are able to find the help you both need at this time.
My husband recently passed away after a year-long fight with pancreatic cancer. The last month he was in hospice care at home pretty cognizant for about 20 days of that. The last seven days were the hardest because he would no longer respond to most stimuli. Up until his last day though he would respond slightly whenever I gave him a kiss on the side of the mouth. Even though I was holding his hand at the moment he passed I’m feeling extremely guilty now about not holding him in my arms 24/7 during that last week since I knew he could feel me in some way. I was in the room 99% of the time, and talking to him but not always touching him. I know it’s irrational at some level but I’m having a hard time coping.
Hi Candy, I am so sorry to read of your husband’s death. But you gave him a well supported death at home where he was most comfortable among the things familiar to him. Perhaps, you might think of your instinct to talk with him and not hold him constantly was actually what he needed – he was in the process of letting go of this life. If you had held him constantly, maybe it would have made it harder for him to leave his body, a body that no longer supported his life. My experience is we somehow just know what the dying person needs and only later when we think about it do we add layers of second-guessing ourselves. Clearly, you love your husband dearly, and you loved him well through his dying not just his living time on earth.
Thank you. That helps!
Yup. Too much time to reflect on the “should’ve, would’ve, could’ve” like trying how to find a way to keep him in his own bed instead of a twin hospice bed. Or finding a way to sleep with him in the hospice bed. Didn’t find out till later they make Queen hospice beds. Oh well.
Thank you so much for your sharing website. I just got home from visiting my grandmother who is 99 years old and in hospice. I couldn’t figure out why she seemed so agitated and displayed discomfort when I touched her arm or hand ever so gently. Thank you for explaining about the spasms and pain. The nurse did give her oral morphine and it seemed to calm her. I wished I’d found your site sooner, I hate to think I caused my grandma pain while on her death bed. JR
Hi JR, I’m glad you were able to advocate for pain relief medicine for your grandmother and that it helped her be more comfortable. Remember, you’re not supposed to be an expert in death process, the nurses are. You intuited that your grandmother was in pain and got her the help she needed. Without your visit, the pain relief might not have happened. I hope you will share this site with your friends, colleagues and family members. And thank you for sharing that experience – I know it will help others.
Paula my name is also paula…so maybe it was destiny that i found this site. Today is day 7 of my vigil for my mother. Today is her 91st birthday. I found much comfort in the posts & it shows me that what i am doing is right. I play a favorite cd of country classics; Timeless by Martina Mcbride. I did this for my dads passing too. You can see them relax when its on. I save # 10 True love ways for last & tell mom that dad wants the last dance. You are so right about them being aware. 2 days ago i was sitting next to her bed & crying. I felt her move & when i looked she was looking right at me…and then opened her arms for me to come in to her. She was still trying to take care of me… paula m.
Hi Paula – thank you so much for taking the time to share your experience with your Mom with us all. We should all be so fortunate to have those who love us with us at our time of death. Sounds to me like you are doing a great job caring for your Mom. So glad the posts you found here support you as your support your Mom at this time. Love never dies. Take good care – Paula
Sitting vigil right now for my boyfriend. We have a wonderful relationship, and he is clearly expressing a need for space, non touch, definitely no conversation, other than when he needs something. He is drifting in and out of lucidity, and is peaceful. After 3 months of heart wrenching pain from bone marrow cancer, he is letting go. I am sad, but looking forward to an end to his pain. Home hospice coming tomorrow.
Hi Chris, it sounds like you are giving your boyfriend everything he needs right now. I’m so glad you are welcoming hospice into the home to help you care for him. Please know that hospice is also there to care for and to support YOU at this time and after his death. Love never dies and is always strong enough to carry us through. Take good care of you too, okay?
Thank you for this information. We will be experiencing this soon and it gives me some more insight.
My Mom just passed, less than 24 hours ago. My Dad, 3 brothers and I sat vigil while she died. Im 56 years old and I’ve never seen another person die before. I thought it would be very frightening, but it was very peaceful and loving. I’m so glad we were able to give her the gift of our presence during her passing. We held her hands, hugged and kissed her all night, told her how much we loved her, what a wonderful Mother she was and how lucky we were to have had her as our Mom. It was sad to leave her once she’d passed, but I wouldn’t have done it any other way. I feel so blessed to have been there for her as she passed into heaven. I still feel her presence very close to me now and find myself talking to her.
Yes people can hear in a coma!!! My sister brought in this tape with my daughters voice on it. I answered my daughters questions!!! My sister asked if I had heard it before now. I said no. She played it for me when I was in my coma
Sorry I forgot to say that I have sat with the dying both human and animals yes wild ones too. Been doing this since I was 12 Im 53 now
I read in a book on near death experiences that the person who nearly died lifted up from their body and viewed the scene from above. I read this after my Dad died. My Mum is now slowly dying from chronic heart failure and if I am there when she passes away I hope I’m brave enough to look upwards in the hope that she will see me. I thought afterwards that all my Dad saw was the tops of our heads. I want to look up and say goodbye and that I love her. Has anyone done this or is it some crazy urban myth? Either way it’s what I would do.
Susie, I read a similar article on near death experience – and it never occurred to me to encourage people to look up at or just after a death – but it makes sense! You do whatever is comfortable for you and I think looking up, waving, blowing a kiss, saying farewell for now is all good. Thanks for suggesting we all think a bit more outside the box!
I am at my mother’s bedside right now. I didn’t know whether to talk or be quiet; play music or not; or how to help relieve her terribly dry mouth. I googled and found your post for which I thank you very much. The hardest thing is trying to decipher the words she tries to mouth but which give no voice. I tell her I love her and say I know she is trying to tell me the same. The experience of Meg chimes with mine. I’m not a mess. I feel robust and strangely detached sometimes. Watching my mother live with dementia and now succumb to it has made me resilient. I hope tears will come because I know how cathartic they can be. I wonder, will there be any warning (gurgling; last deep breath/sigh) that the moment has finally come? Thanks again. Nick
Thank you thank thank you. Im sitting now with a dear friend wishing for all the suffering from 25 years of Parkinsons to end for her. When we first got hospice i moved the bed way over to the picture window.Not sure if she knows,but thought it may be just a little bit of quality added.The skype idea is great thank you. Peace & Soul, D
I am sitting right now with my husband dieing of pancreatic cancer. After reading this I just opened a window. He has not eaten for 12 days and no water for 3. He mouth is so very dry. His pain level is so strong that they have him on three different ones every 2 hours. The cats have not left his side. Just in the past hour he is panting like a dog very fast and moning like he is in pain.
Hi Penni, I’m hoping that you have hospice nursing support, or hospital nursing support to assist you in dealing with your husband’s pain level and breathing issues, because it sounds like he needs more meds than he is being given to help him be comfortable. Glycerin swabs should be given to you to use on his mouth and lips to keep his lips and mouth moist. He may also be running a fever, as people dying from cancer usually do run a temp. Keep talking to him, I’m sure you being with him helps to comfort him. Take good care – Paula
If you have glycerin swabs you might want to rub over lips and in mouth to moisturizer. I have used coconut oil too. Talking to him telling him you will be ok can be helpful. Thanking him for being your husband,father friend.Im told our hearing is the last to go.soothing words and comfort for this transition into the next phase of his journey can bring comfort to you as well.
I was with my dad as he was passing from lung cancer and have experienced most of what I read. I talked with him about all the crabbing and fishing we did together growing up. I told him what a wonderful Dad he is and I was honored to be his daughter. He looked at me and said “I want to go home”, I did not know of this site or stages and yes he was in hospice at home. I said dad, you are come, you are in your bedroom, he looked around and then back at me and said, “I want to go home!” I realized at this point, he meant heaven! Then he was looking at the corner of the ceiling and said, who are those people and where are they going? I felt a feeling of warmth come over me, and was so happy to be experiencing this with him. I said in a soft voice, they are going into the light, can you go with them into the light? He nodded yes, but it wasn’t time yet. Then he said “Small Mikey”, this was his favorite cousin that has passed on several years ago. I said, you see Small Mikey? He knodded yes. What is he doing? Dad said he is reaching his hand out to me. I said Dad go with him, he said no. He wasn’t ready yet. After an hour he started getting drowsy and was fighting it so hard. I said dad, go to sleep, when you wake up we will go crabbing, ok. He knodded yes, went to sleep and then 10 minutes later he took his last breath. This is the most wonderful experience of life and death and I will cherish it till the day I die.
Hi all Thank You for Sharing ..my name is Karen& my mother Helen went into the Hospital with the pneumonia; in which she said every day for 7 days I’m not hungry / not thirsty? I didn’t understand? Its because her time is near.she came home to her bed on hospice since yesterday….I’ve been by her side they all if this…. And I find it soo nice to know ( that its Ok for me to stay w her) everyone had been saying you dntbneed to be there relax just pip in for ten mins???? That’s simply not me……this is my mother… I will be with her thru this….. And yes..I have the window open a small amount for her…… I Love her Soooooo Much……. Thank you for sharing …it makes me feel better?! Karen
Hi all of you.
It’s a beautiful post from a beautiful person.
I’m in the process of undergoing the same thing right now for my mother. It’s hard , very hard to take.
God bless .
As much as I love my dad I just want his pain to go away. He was diagnosed in July of 2016 with Colon cancer and mets to his Liver (which has since turned in to sternal notch and stomach…and now we think bones). It is so hard to see him suffer and not be able to do anything for him. He is getting new pain meds because the morphine is not working for him. He has not had anything to eat or drink for at least 3 days. He doesn’t even want the meds (liquid) because he thinks we are trying to give him water. Hoping his transition is peaceful and his pain finally comes to an end.
Thank you for this list – we seem to be doing most of it naturally.
I’m sure you’re taking great care with him. Please remember to take care of yourself during this time and afterwards. Grief takes a physical toll – before and after the death of a loved one. Thank you for taking time to leave a message here –
My father had prostate cancer. In then end, my sister and I took turns at his bedside. He was not conscious and snoring. It was my turn, and I had had my hand over his for a few hours. He did grimace and wail every half hour or so, and I called the nurse. She said he was dreaming, I am still not convinced and still hope it was not pain he was experiencing. A little after 3 a.m. in the morning, I decided to take a little break and took my hand off of my father’s hand. It wasn’t but a minute or so, that from across the room, my sleeping sister jolted straight up out of bed from her sleep and ran towards my father. He had ‘awoken’ her and was dying. Mind you, I was in a chair next to my father and my sister was across the room, asleep. His breath changed to five deep, short breaths. I became scared, not knowing what was happening and summoned the nurse to stay with us. (Did he let go because I let go? I did and do still feel guilt: maybe he would have stayed longer had I not removed my hand. Maybe it was good to, allowing him to go.) These were his last breaths. I felt an intensely strong presence in the room, very powerful. I then felt euphoria, and waved to my father, me looking to the corners of the ceiling. In a sense, it did feel like childbirth. I helped undress/redress him and move him to the ‘farewell room,’ placing the flowers my mother had given him on his chest. (This happened in a German hospital, almost 2 years ago.) It was my first vigil, I had been there for animals before, but never a human family member. I would like to think my dad is in a better place. I find it comforting that all these ‘supernatural’ occurrences at my father’s side when he transitioned are signs he is in a much better place. Not a day goes by that I don’t think of him.
Thank you for sharing that experience with us all! I believe you let go when he was ready for you to let go, and you and your sister gave him a beautiful gift of an attended death – he knew how well he was cared for. Only feel love now, no guilt. Again, truly grateful you shared this story with us all.
My father died yesterday afternoon from kidney cancer, at home, eight days after coming out of hospital where he had been for three weeks. I live 200 miles away but came every week for several days to see him and support mum. He wanted to be at home, and I was able to help organise his care when he did come home. Last week I sat with him for three days and held his hand and we talked some about his dying and about the village where we both grew up.
I then went home, planning to return later on this week. My brother and family visited him last weekend and dad seemed to rally then. But yesterday, he had taken a turn for the worse so I got a train as soon as I could to be with him. When I arrived I found that he had died, peacefully with mum and my SIL at his side. I was glad to spend some time with his body, but am so upset that I wasn’t there at his passing.
Thank you for your advice, the contributions of other posters as well as this opportunity to share my story.
Hi Linda, thank you for joining in the discussion here. I know that being with your Dad at the moment he died was important to you and I’m sorry you were not able to be there. But you gave your father an amazing gift – you made it possible for him to die at home, on his terms, and to have time and privacy and care to share last conversations with you and the family. Please take heart in that gift you gave him. And take good care of yourself in the weeks and months to come. I’m so glad you found this site and comments from other visitors helpful.
Thank you, Paula, for your lovely thoughtful reply. Though I feel I failed dad in not being with him at the end, I know that’s illogical, and that I did do all that I could for him before then. I just have to start believing it.
What a wonderful article I have found in this, I am going out of state to sit with my dying best friend, and I wondered about a lot of things, but your article has answered them. And the replies that followed were also very helpful, and touching. I am honored that I can do this for my friend, she is at the end stage of cancer and cannot speak.
Thank you so much.
Thank you so much for this article. I am sitting vigil with hospice with my grandmother as I type this – I didn’t even know that’s what it’s called. I did this six months ago with a very close family friend and noticed so many similarities this time – thank you for this great explanation. I feel much more prepared now. Thank you.
Hello Paula, thank you for the informative checklist. We did most of the points as they pertained to mom. I’m sitting with her now at 4:00am, knowing that she is in the final stages of her journey home, but I am feeling lost. I’m a Lay Hospital Chaplain currently at loss for words. The close, personal, relationship with a loved one is so different than a hospital patient, that I’ve forgotten all my training. Thank God for His guidance and technology, I found your site. Mom is on Hospice at home, so the nurse will be here in a few hours – she refuses any nourishment as she is not able to swallow. Speech is limited to sounds and occasionally she tries to call for me “V.” I am scheduled to start a new job today and the guilt is overwhelming; how can I leave her, what employer will understand if I didn’t start working? I pray that God will guide both mom and I in the way to go. After trying to get a few drops of Morphine under her tongue, mom is sleeping but not peacefully. Her condition changed rapidly over a matter of hours. She was sitting up and talking on Friday and Saturday during the day everything changed. This is Monday and we were told maybe two days no more than a week she’ll be gone.
Our comfort comes from knowing that at 92 years, she knows everyone and is in her right mind. She had a diagnosis of stage 4 lung cancer about ten months ago, but still cooked and baked until three months ago. The doctors are never sure as we were told she would be gone in six months – 5 months later, she’s still here.
Thanks for providing a place where people in similar circumstances can see they are not the only ones with questions or struggles as we navigate the process of a loved one dying.
Hello Maria, I’m so glad you found your way to this site and the information was a support to you at this time. And yes, when the person dying is someone we love all of our training goes out of our heads maybe because our emotions need to step forward. Death and loss are never easy, but they are great teachers about life. I don’t know your economic situation, but I think your new employer would probably let you delay your start date given how close your Mom is to death. From your description, your Mom is in active dying phase and it’s a matter of days/hours now. I write this blog in the hope that the comments left here help us all realize, when it comes to death we just do the best we can to love the dying through their death process, and hopefully are able to support others involved in that process as well (friends, siblings, lovers, caregivers). Please take care of yourself in this process and give yourself permission to meltdown, cry, take a walk, sleep for an hour, eat a good meal – or a bowl of ice cream! You might find the post Grief is Not Selfish! helpful now and later on. I wish you peace in your heart as you walk this path with your Mom and your family.
Paula, thanks for your words of comfort and peace. within 24 hours of my post, she had transitioned. The hospice nurses were knowledgeable and caring to the end and told us what would happen at each step. There was no fear, but a mixture of joy and sorrow – the pain was over for her (joy), her physical presence was gone (sorrow). She’ll be greatly missed , but life goes on.
Thank You
My Mom died 4 weeks ago of cancer. The day before she passed she kept saying “let me go please let me go” She said the name of my grandmother. She asked who the people were beside her. She faded in and out of sleep. When she was awake she was fully aware. She told me to go home and come back in the morning and I went. In the morning when I got there her eyes were open but not focused and she was breathing rhythmical through her mouth. My son was with me but I don’t know if she knew we were there. We held her and talked to her and soon after she took her last breath. I wondered if she waited for me to come back in the morning. I feel really really bad that I didn’t stay with her the night before. Maybe she called for me and I wasn’t there. I was with her at the end. At least now she’s at peace.
Hi Pauline, please don’t carry that guilt with you, it serves no purpose. Your strength and presence and love were with her, even if you were not physically there all night. People who are dying need time alone to transition, it’s not recommended that family/friends stay at the bedside constantly. You came back in the morning, you were there when she died. That was a gift to you both. Thank you for sharing your thoughts – but please just remember the love you shared with your Mom is not based on the minutes/hours spent at the deathbed. Take care of yourself.
Thank you Paula it really meant a lot to hear your words. I was with there with her from morning until she was ready to sleep. So maybe she did need some time by herself. Thank you for pointing that out. I won’t be as hard on myself. Thanks
Pauline
From my little experience, she knew.She also wanted you to go that night
Often people wait for that moment left alone and others want family around.The old saying goes is that the hearing is the last to go. She knew she wasn’t alone. Peace &Soul, Dierdre
Thank you for your response. It’s comforting to think that she knew I was there. Maybe she did want me to go home but I just pray that she didn’t call out for me and I wasn’t there. I guess I’ll never know. But I was there at the end.
I’m told to crack a window or open a door to allow the soul to pass on. I keep the window cracked during the days and hours towards the end.I play classical music as well. I inform the person of my comings and goings even if its stepping out of the room for a minute. I always greet with my name as well.
Can someone please help me? My dad (81) passed away last week after a 2 month bought with pancreatic cancer. We were at his bedside when he passed. What I need help with is the face dad gave three times at the end. When he was able to communicate, he always said he was in no pain. The last day be was totally unresponsive and hospice said it would be a matter of hours. He always breathed with his mouth wide open, never closed his mouth at all. But as he was taking his ‘last breaths’, he scrunched up his face, including his mouth (picture sucking a lemon), stopped, took a breath, scrunched his face again, stopped, and then did it briefly one last time before he stopped breathing. The hospice nurse said he was just taking his last breathes, but his mouth was puckered and closed! Another visual is if you saw someone swallow with a very sore throat. It wasn’t like his last breath because his mouth was closed during it, but after he did that, his face would go back to how it was, then scrunch up again. Two and a half times until he didn’t breath again. I have this horrible look in my mind and I just can’t make peace with it! Has anyone ever seen this before???
Hi Dana, I’m not a medical person, so I can’t explain the physical muscle contractions that may have been happening at the time, but I’m told they are often times completely involuntary and usually no pain is felt. So it may have been reactive muscle contractions for face/jaw/throat, especially if the mouth had been hanging open for long periods of time. If he had been in pain, other indicators would probably have been present – like grimacing, groaning, the body would have been in constant motion as he sought a comfortable position. If he had been calm and without pain leading up to this time, then I believe it was not painful and he wasn’t conscious. Please take comfort in all of his days of being pain-free and comforted by the care you all provided that lead to that moment of death. Know that you did all you could, that he was medicated appropriately, and that you loved him well through his death process.
I experienced something similar with my Mother who just died a few weeks ago. She was unresponsive. Her eyes were vacant and she was breathing quick, shallow breaths with her mouth open. We continued to talk to her. Then her mouth closed a little bit and she grimaced. She took another breath and grimaced again, relaxed and then she was gone.
I wondered if it was just an involuntary movement as her body was shutting down. I don’t know if she would have experienced any pain…I pray she didn’t.
The vision haunts me too of seeing her like that. Perhaps the facial movement is a common reaction when one dies.
Stay strong.
Hi…my mom just passed a few weeks ago, after being unconscious for 10 days. I googled “face scrunching” and came across your posts – as moments before she passed her breathing softened and she scrunched her face 3 times, like you described, before letting go. I was surprised to see this – but it did not bother me. I guess I looked at it as an involuntary thing – not that she was in pain or anything – just one last “hurrah” by her body. I asked the hospice staff and they just said “everybody’s passing is unique”. A bit vague of an answer…but regardless, I truly felt my mom was at peace…
Thank you so much for your time Paula! My dad wasn’t doing any of those things. He was calm the entire time and on regular doses of morphine and something else that was for nausea. We were all quietly by his side, and the hospice aide was phenomenal! She rubbed his chest and would say “It’s ok Jerry” over and over. He lived a wonderful life, and I was blessed with nearly 54 years of being his daughter, so I’m going to concentrate one what you said to try to get those images out of my mind. Thanks again!
You saw it too Pauline!!! I’m glad I’m not the only one suffering with these last visions!
I had a completely different experience this past month when my mother became ill unexpectedly. From the time she was admitted to the hospital to her death was just five weeks.
I always felt I never had a relationship with my mother, she was “just” my mother. It was difficult to be her child although throughout most of the growing up years I did not understand this was not the way of all mothers. As an adult I put the pieces together and came to the conclusion that I was not liked by my mother ( maybe she loved me ) and we had nothing in common and shared no special moments. She was emotionally absent.
My father expected a lot of me during her passing and I did everything I could to accommodate him, to help her feel less anxious and more comfortable. Yet, when she passed away with my father at her side ( but sleeping ) I felt nothing. During the coming days, I still did not feel any emotions. I felt emotions when my father was crying and hurting, when my children were sad and crying, but they were clearly in response for their pain.
Today, I still do not feel any real emotions. I do wonder if this is normal, I have guilt about feeling nothing. When my dog of 13 years died I cried for two years off and on.
What the hell?
Hi Cate, Thank you for sharing your experience so honestly. My hope for you is that you let that guilt go, it serves no positive purpose in your life. There is no “normal” reaction to death that we should all strive for – each individual who is dying is unique and each person experiencing that death has a unique relationship with the one who is dying. You gained insights into your own relationship with your mother, and hers with you. It sounds like you are also a mother – and have very compassionate relationships with your own children around their losses and sadness. Your pain of loss when your dog of 13 years died is totally understandable because we love our animals unconditionally, they share joy and sorrow with us, and they love us back unconditionally, they are the most loyal best friend we ever experience. So yes, it’s easier to show our emotions around the loss of that source of pure unconditional love, especially if we were not in unconditional/loving space with a parent/spouse/sibling. You are doing great – you supported your Dad in his loss, your kids, you were the glue that held your family together during and after your Mom’s death. Be proud of that gift you gave everyone. Accept the limits of the feelings you had for your mother. Continue to be the loving Mom YOU ARE to your children/spouse/family. And please let go of any guilt you still carry each day, it serves no positive purpose. Again, thank you for being so honest here about your experience. That’s what I hope makes this blog space of help to others.
Sometimes we read too much Into the Why and why not. As much as we are told how Individual we each are we still catch ourselves comparing to others. The beauty is this is your life. This is about what relationship you had with your mother. Is this a right or wrong? I clearly don’t see or hear this from you. I hear that you stayed un til the end bein g a supportive mother and daughter. Clearly you have a heart. Not everyone is going to agree with me,but sometimes we can pick apart stuff that could just rest. Maybe in 5 years it will be different, but I think this is your path and maybe there isn’t anything you have to look for. Peace & Soul, Dierdre
I loved reading this article. My father passed last night and miraculously my care towards my father was like your checklist without knowing what to do. I feel a sense of relief that he passed with the presence of my whole hearted love and compassion. He held strong til my son and daughter showed up with their mother where they had a chance to say their goodbyes . It broke my heart to see a 4 and 5 year old tell me that they miss their Papa and wish they could tell him all about their first day of school. They gave him their goodbye kisses and he passed peacefully it was the last piece to his puzzle, my children.
I am so heartbroken as I’m sure most of u r I am the oldest of 6 but their is an 8 yr gap where I was an only child then came the 5 all close in age I’m the only one with medical background and hospice and oncology and er and hospital experience since my dad’s prostate cancer was diagnosed 3 yrs ago and he went thru all treatments it’s back with avengers it’s now into the bones on and off I have been lied to and not allowed over it’s heart breaking I have every right to be their not only am I the first but he is my dad too .he is now home and on hospice and it’s never a good day for my husband and I to come I ask patiently and get rejected everyday like a lil puppy I go back for more everyday I Love him and want know regrets we were attached at the hip since I was born and he’s my favorite human in the world it’s killing me that my siblings r belittling me taking away my time he’s my father too and he was my dad first and longest .I’ve never cried so hard or bargained so much in all my life I feel it in my gut that I will get a text he is gone the time is coming we r so close I feel it and all i do day after day is ask again politely but again the lil puppy in me gets rejected and the cycle continues everyday ” I can’t bare a world without him in it I was so blessed to have the best father but I never thought I would loose him so young or be belittled and bullied out by my siblings and mom I have always been a selfless loving person and they r goanna to keep me from the first man a little girl loves and will always love ‘i thank God for my husband and horse rescue and my kids and animals but the pain that I’m being kept from my dad is eating me alive I can’t eat or sleep thank u all for ur kind stories and great advice I will continue to pray and ask politely everyday wish me luck and bless u all Dar Canter
Since my last comment they never let me come back and say goodbye so today at 4pm I lost my hero my dad and they robbed my tume with him I am over an hour and then some away I was texted he past and I only had 15 min before the hearse came even if I drove 100 miles and hour I would’ve never made it besides he had already past and they didn’t even give me that the worst part is the rest of them got to spend the day with him so they all said good bye but my family and me I will never get over or forgive them for the time they robbed from me but hea no longer suffering and of all the people in the world I got him to be my dad I can’t imagine life without him nor do I want to but one thing that came out of it is I appreciate the family I have time is short and I don’t have to ever deal with them and they can’t hurt me anymore I will forever live u dad thank u u were truly the best u were one of a kind my favorite human in the world . Dar Canter
I’m so sorry, Dar. But you have the right attitude – they can’t hurt you because you won’t let them. Your Dad’s suffering is over, and I believe he can hear you – so tell him outloud how much you love him. And love the family you have created, love your friends, take joy in the gift that is each day. And keep yourself clear of people who do not add joy/love to your life. Your Dad is at peace, I hope you find peace as well. Take good care of you –
My only daughter died on Thanksgiving night 2 years ago. She and I walked a 15 month journey as she fought so bravely to beat a rare and aggressive cervical cancer. She tired all known chemo and radiation treatments but no cure was possible and she stopped all future chemo and was given months to live. During the week before Thanksgiving, her favorite holiday, she stopped eating and drinking very much. I called Hospice who came immediately and informed me she was transitioning. After crying in despair, I decided to still have the big Thanksgiving dinner she always loved with friends and family. Everyone came and she was awake. although confused most of the day and early afternoon. Then she became responsive- with only one eye open and the other shut- and the one eye was glazed looking. The hospice nurse said she would not make it through the night. We played her favorite music softly- everyone spent time with her talking quietly…her little daughter came to say goodbye. Around 11:46 pm…I was so tired, I went to lie down for a few moments because her friend standing vigil were both doctors and promised to wake me if anything changed. I almost walked into the other room when a voice said “Go see your daughter” so I walked back into her room and sat at her feet…I was afraid to look at her face because I hated seeing the one eye open and one shut so I started rubbing her feet…and they were so cold…and I kept saying to myself- I need to warm them…when suddenly that same voice told me to “look at your daughter” and when I looked up- both eyes were open, the glazed look was gone- replaced with a glowing shining light of love and joy and she began smiling…and I told her how beautiful and happy she looked and she kept smiling and I asked if heaven was as beautiful as we are told…and she smiled on and I asked if she saw JI was just so transfixed by the radiance that filled her face and I felt Divine Love in the room and then she softly left me…as she quietly transitioned…I was honored to bring her into this world and so blessed to guide her home to the Father…This experience proved there is a God…he is Divine Love and heaven is more beautiful then anything we can imagine. I miss my baby girl so much but I hope this brings someone comfort and peace…and hope that our loved ones are more than ok…just waiting for the grand reunion…. Much love to all!
Hello Val, thank you so much for sharing this story of love with all of us. You gave your daughter a beautiful gift of celebration, honoring her life as she died. And it sounds like you created a space for all who loved your daughter to gather together to support her, and one another as you all suffered this loss. What we all share, no matter what our religious beliefs are (if any), is human connection, the love and the grief when someone we love is dying. Thank you for sharing this terrible but beautiful experience with us all. You are an amazing mother in this world!
I’m sitting by the bed of my dying mother and found your tips. Thank you for giving me such helpful advice for easing her and me through this transition from one life to the next.
Hello Paula and everyone.
This thread has been a wonderful source of information and I thank you for that .
My story is somewhat different to everyone else’s.
My mother suffered a fall and broke her hip three weeks ago on the 21st of February . Although the operation was a success and she even walked a little by day 2 she developed blisters on the bad leg by day three and then both legs swelled , she then got a nasty chesty cough and declined food and drink . For the last 8 years she’d suffered vascular dementia but not that bad where she couldn’t function normally as in make some food and tea for herself , toiletting, chat and enjoy a laugh etc . In fact she lived quite independently and happy in a warden assisted sheltered accommodation apartment, with carers going in twice a day for visits and meds .
We felt the NHS ward she was placed in for the hip op was not caring for her as well as we could at home and it was heartbreaking to see her waste away with little help coming from the medics to rectify that and her bad chesty cough ( they said the X-rays were clear) . I was concerned it was her weak heart causing that cough but they said all her organs were medically fit .
Anyway, we encouraged the doctor to allow us to take her home in the hope all these things would improve. She agreed and discharged mum.
Everything was in place for her at home . Meds, Four visits of care, equipment, air bed etc . I was going to sleep at her place for a few nights to see how she got on , as she was way too weak to be left alone so soon after returning .
The first night after being home she slept/ coughed a lot and continued to refuse food & drink . She had lost her zest for chatting and joking but still spoke a little, she was so tired . I started to think could this be it ? Yet no medics in the hospital had indicated this to be, in fact they denied she was fading away .
Day two at home was much of the same thing but the carers placed her on the settee as they don’t like the elderly laying down all day.
The second night she was the same , coughed still and refused everything except her meds. I was constantly in and out tending to her needs throughout the night.
By 7.30 am I could hear her sounding uncomfortable and discovered her and her bedding to be soaked . I sorted it all out, made her dry and comfortable then couldn’t believe it when she asked me for a cup of tea! I readily made her one and she gulped it down and said how lovely it was . I was thrilled as she hadn’t enjoyed one since her op.
I sang happy birthday to her and gave her her cards but she wasn’t interested and I thought to myself, this really isn’t like mum at all.
After I’d sorted the wet laundry , I made her another tea of which she had 3/4’s of and suggested she move to her sofa to help ease that awful cough which was now bringing tears to her eyes ( she’d only just started antibiotics for that) .. I could tell she couldn’t be bothered from her face but she agreed.
I helped her to the sofa and thought to myself although she was very frail and weak she’d walked very well seeing as she’d had little physiotherapy .
I sat her on the couch and lifted the foot rest up for her legs and she said ‘Thank you darling, I’m sorry I’m such a nuisance’ which she often said . I told her not to be silly she wasn’t and turned to see her two carers walk in . As I greeted them me one of them shouted ‘Iris!’ and dashed over to her. Mum had jolted to the right of the couch (almost like she’d been shot) we rushed to her aid , sat her up but she was motionless and obviously taking her last breaths . I held her hand and said. ‘Oh mum no !’ as she slipped away in front of our eyes . She died on the 15th of March at 10.10 am UK time .
I am still in shock and although I am so sad she has gone , I am also happy she is free from her suffering and ended her days in her own home ,
However I am angry that no one medically trained had spotted she was dying, even though we had asked them more than once. Because my family would’ve liked to have been there to say goodbye and we could’ve been more prepared .
I’m sorry this is a long post and please feel free to delete if it’s not relevant.
It’s actually helped me to write everything down and get it out of my system a little.So thank you for allowing me to do that .
God bless everyone going through this very difficult time in your and your loved ones lives .I hope you find the strength and courage to get through it xx
Thank You!
Patricia Lapidus
Hi Jan, (March 2018) I am sorry for the loss of your mum and so very suddenly after she had been in hospital. It was wonderful that you were able to get her home from hospital and be with her when she died, that you were there to make her that cup of tea that she so wanted! However she may well have been in perfect health in hospital as the medical team said, her organs were good, probably her heart was good too but she was ready to go and this was her time, she probably didnt want to die in hospital and perhaps she wanted to pass in peace and quiet without too much family around her. She was refusing food and this might have been one way of her taking control of her own destiny. Be grateful for the time you spent with her, and let go of any bad feelings towards the medics, this will only hold you back. You did a wonderful thing for your mum, you were with her and helped her and organised for her to get home. You should be proud of that, very proud of it and concentrate on that fact and let go of the thoughts about being more prepared. From reading the wonderful advice of Paula and from reading the messages of all the other wonderful contributors, it would appear that there are many ways for our loved ones to go and your mum was lucky not to have a lingering illness like some. I am currently caring for my MIL who is in the end stages of alzheimers disease and has been living with us for the last 2 years, having moved from UK to Ireland as she was unable to live alone and unhappy in a care home, but now she is next to deaths door, but still not dead. She would hate to know that she is like this, she always believed in euthanasia but of course this is not an option, she needs two people to get her out of bed, change and dress her, two people to put her back to bed, she has to be spoon fed and is asleep all the time whether in bed or up in her chair, she mostly is not agitated, except hates it when we change her incontinence wear. This is a great list, thank you Paula, I have picked up some tips because I want to help Kitty to transition as I believe there is something holding her here, Im going to type up a ‘story’ to read to her every night, telling her how much we love her, reminding her of wonderful times together, mentioning all the family names and saying how well everybody is, I got some tips for that from Canadian Virtual Hospice (is it okay to say that here?). Since Kitty came to live with us she has needed 24 hour care, my husband and I do most of it but we have two full days off during the week (to go to work!), the weekends are hard and I think that by christmas if she has not died, we will have to put her in a care home, there is a lovely one only 5 minutes from us luckily, but i would prefer if she died at home while she still has family caring for her because even though the care home is nice, its not the same…..My friends and family think we are wonderful, but my mother in law and I got on great over the 30+ years we knew each other and I would not let her alone in her hour of need (until its really gets too hard for us), sometimes the sadness of the whole situation is now becoming too emotionally draining which is why we may have to move her on, plus the fact that we are almost not able physically able. Well done to everybody who helps their parents to die either at home or in hospice or at hospital, and well done to you Jan for being with your mum, please take time to get over the shock, and read Paula’s Grief is no Selfish blog. blessings
The long good-bye known as Alzheimer’s requires those who survive intact to live in the moment which I have been doing with the love of my life for ten years that I know of. Thoughts here comfort as we reach the end of a special life I am a better person because we were life partners. I will revisit and add to my comments at the appropriate time, hoping to help others as your sharing helped me.
Wish I had read this BEFORE my partner died, the staff didn’t tell me what to do either but I did my best. I talked to my partner that last day, held his hand and stroked his head. He knew I was there and he turned his head towards me as if to say goodbye as he took his last breath. This was 4 months ago and I miss him so so much.
I’m not sure if this is the appropriate area to ask my question, but I appreciate so much your article and the responses. I’ve actually been staying at the hospital with my husband around the clock since he was readmitted over 3 weeks ago. Everyone said he had only had a couple hours to couple days since he’s been suffering with stage 4 colon cancer for over a year now and his body is just worn out and shutting down. It seems that everyone, including him, has made peace with his condition and now I feel like as time goes on and being with him full time, that I’m ‘circling’ waiting for him to pass away and makes me feel bad. I do know I’m assisting in his comfort and care by being there though but not sure if I should give him some space to be alone as I believe you said to pass away peacefully?. Any suggestions or thoughts?
Hello Mona, I apologize for the delay in getting back to you. I’ll also send this response as an email to you as that may be easier for you to check while you are sitting vigil with your husband. First, I’m so sorry to hear that your husband is dying. But I’m grateful you took time to leave a comment here with a question. I think you do need to take time for yourself away from the hospital room, as difficult as that may be. Just to shower, smell fresh air by standing outside, go to the hospital chapel to meditate or pray, call a friend for support. Your husband may want some space, an open window if possible, quiet time for himself. Ask him what he needs in terms of space, how he feels if you step out for 15-30 minutes.
You two just need to follow your instincts, be open about what you both feel you need right now.
Some husbands don’t want to die in front of their wives – they don’t want that to be the last memory.
Others do want their partner/lover/spouse with them, holding their hand, talking to them. Every couple is different.
Do what feels right for you.
Giving your husband a peaceful death, without pain, is one of the greatest gifts you can give him.
Take good care of yourself now and later on as well.
I am sitting with my mother dearest friend who I battled with as a teenager -eventually she became my teacher of humility and champion of the underdog.
I learned to survive the trials of life always knowing that her wise words would guide me through strife. Now as she is ready to pass beyond the confines of earthly things – I patiently wait for her last breath knowing that she lived an amazing fulfilling life giving so much to others. This beautiful woman faded by the ravages of dementia. She will soon be reunited with her loved ones and past friends waiting for her to come home. It is my privilege to sit through her passage to the other side. God bless her soul and Jesus welcome her into your arms. Amen.
It sure got me when you said that a dying person usually breathes through their mouths and that it is best to keep it moist at all time by swabbing it with wax. I do not know why I am researching this when my friend is concerned with immigrant bereavement. Anyway, I will just mention this to him since his dad isn’t exactly dead yet. Thanks.
Hi Dino, please use the glycerine swabs, available at most pharmacies, just dip into water for a minute or so and then use. And please use NONWAX lip balm – a product that doesn’t contain petroleum, so any natural lip balm will be great. I’m glad your friend has you for support.
As I write this, my sweet sister is dying. She had back surgery on 8/14/18, celebrated her 74th birthday at rehab, had to come back to the hospital this past week because of an infection in the incision (surgery) and now she’s in the hospital bed dying. I didn’t see this coming.
Hi Sandy, I’m so sad to hear this – but it’s unfortunately common. Older people living through difficult surgeries only to be brought down due to infection. Being present with her, talking with her, making sure her pain is controlled is all you can do. Please take some breaks to care for your own needs too – just breathing in and out in quiet space for a short break might help too, if you can get outside and be in fresh air, or find the hospital chapel. The love you are showing your sister will support her more than you can know. Take good care.
This reminded of when my grandmother was dying of cancer and as she lay there she told me that people were coming to take her places as if being taken on little vacations with them. She had always wanted to travel but couldn’t so I thought that was wonderful that her angels came to show her the world she wanted to see so badly. I told her to enjoy herself, have a good time on her trips and not to worry about a thing, they were her spirit guides and she should go with them. I also assured her it was okay to let go anytime she wanted to do so because I wanted her to know we understood if it was her time to leave us. After that, she seemed so much more comfortable and relaxed as if that’s all she really needed to hear.
This is a great article with good advice for people in this situation. There is no manual for life and living so sometimes we need others to help us know what to do, people who have been there before and know more about it. What I know for certain is that as someone who has had many grand mal seizures, when we are unconscious we can and do hear what is going on around us so keep that in mind while with a dying loved one as I’m sure it is no different for them. Just because they cannot respond doesn’t mean they don’t want to hear your voice and feel a part of this world until they leave it. In my case I always was saying inside, just wait, I’ll be right back, and each time I returned and told everyone there, see? I told you I’d come back! Of course, they never heard me say it but I was certainly trying to. The mouth won’t let you talk when in that state, it’s a form of paralysis. Also, because I’ve had these incidents from early on in life, I’ve experienced speaking telepathically with my own spirit guides on the other side or plane and they always offered good advice as if they knew I’d be returning with it. Not only is it wise to listen to what they say, but to follow that advice because it’s golden and they know what we do not about ourselves.
I lost my mom almost a month ago. I flew down to FL from NV before she died, and spent the last three days of her life sitting vigil with my family in her home, at her bedside. I am a RN, and I have sat with dying patients and their family members several times. Being on the “other side of the bed” is very different. I knew what was happening; I even helped the hospice nurses and aides with her care, turning, positioning, etc. I knew my mom could hear us—she was beyond talking, her eyes were closed, wasn’t squeezing hands anymore, but if we said something that she would have normally responded to, a question, a statement, her breathing would change for a breath or two, and then go back to her normal pattern. I made sure that my dad (who lives in a long term care facility) came to visit, and that my husband and son, who couldn’t leave NV due to work and school commitments, talked to her on the phone. I played the music she wanted played (she told me what songs she wanted before she became unconscious), I talked about memories we shared. When her moment of death arrived, my brother and I were alone with her. The only thing that I wasn’t expecting was the facial expression she made. I think the grimace she made was probably due to loss of oxygen…it was the expression she made when she was going to cry. I told her, again, that it was ok, she could go, and we’d be alright. And then she was gone. I also wasn’t quite prepared for the jumble of emotions after my mom’s death. Relief that she was out of pain, and knowing that she hadn’t suffered long. A let down feeling almost like when a vacation is over. A “ok, now what” feeling; shocked and dazed, even though the death was expected.
Hi Amy, thank you for sharing that experience of your Mom’s death – I know it will help others. There is a whole range of valid emotions like you described – relief, grief, “now what”, feeling ungrounded for a while, not quite knowing what to do next. But maybe that’s how our brain helps us cope, by numbing us a bit, so we can slowly come to accept that our parent is gone and we are now the “elders” in our families. Again, many thanks for taking the time to share this with others – it does help greatly!
Hi Paula, I found your (honest, helpful) words during a late night sleepless google search while preparing to sit vigil full-time at my grandpa’s deathbed. Thank you for writing this, I took notes in the blank spaces of the pamphlet the hospice folks gave me earlier today. I’m not unfamiliar with the process of watching a loved one die, but I am unfamiliar with watching/”facing death” while being “The Adult” (i.e., only next of kin around, power of attorney, etc). I’m grateful for your advice because it’s good advice, which is hard to get amidst other friends and family who are differently confused than my poor grandpa, insurance bureaucracy stuff, and generally feelings/people all around with the best of intentions but . . . as my grandmother used to tell me, “the road to hell is paved with good intentions.” I like what your first commenter said about how this should be taught alongside balancing a checkbook to high schoolers in the “Home Ec” type classes, but the truth is that not everyone is tasked with, feels compelled to, or ends up/actually does “sit vigil.” Felt compelled to comment because you posting this really helped me today, i.e. will (I think/hope) help me better help my beloved Popop in a more unselfish way. Thank you!!
I came across this post as my mil sits vigil at her mother death bed she is 102 years old and as I’m writing this I’m crying am I wrong for crying because I have only known her for 7 years grandma R was a strong and beautiful woman inside and out while my mil is telling me that it’s a blessing that’s she’s read to go I don’t know how I feel. I have been at someone’s death bed and watching the heart monitor drop and drop. Until the heart stops was a very intense moment for me and it was very surreal I feel like I should not have the right to be crying because she is not my grandma she is my husbands grandma and our 4 year olds great grandma
Rose is someone you loved too, so you get to have all the feelings of grief. It sounds like you also respect your mil and husband and their relationship with Rose – so I’m sure you’re supporting them in their grief too. Death brings back memories of others you loved and supported during their deaths, it stirs up all of that grief too. It also makes you think about what your daughter will go through when she is with you in your last days. It’s a “soup” of emotions. If you feel uncomfortable, or that you’re grief is somehow disturbing others, then walk away, find a quiet space, and let yourself cry hard. Get the grief out of you, then when you feel grounded, head back to the room. Take care –
You wrote this over three years ago and are still reaching people. I have been blessed to walk five people home. My MIL is 90 and we have hospice in home. (Dad in law is 89 and will probably follow her home). Thank you for the real advice, I had never heard about opening a window. I was glad you mentioned leaving the person alone some times. All of the people I’ve been with waited until they were alone to pass (usually during a quick bathroom break or walking someone out).
Thank you, Elaine, for leaving your comment. I am so honored to have put this post up, and 3 years later it’s still the most read post nearly every day. Our need for support and practical knowledge on how to be there for a loved one who is dying is critical to relieving their suffering, and our own. I’m glad this post helps others!
i am sitting vigil with my grandmother right now. This was a wonderfully helpful read.
i don’t have a lot of fancy peaceful woes to share right now. But thank you for this.
I have had a bad experience. Mixed. Mostly there was so much beauty and love. But something went wrong and it hurts me. I was put under pressure to give my loved one space, that i should leave him so that he could pass away. So i did. Why did i do that? I wanted to be with him. It was not our way and not our choice. We had wanted to be together and he never said for me to leave. He always said he wanted me there so i was, but i was always under the pressure of having to leave him so that he could pass. Our last moments taken from us, by others choices. if i had been free from such pressures we would have chosen our own way together. I do not know if he wanted me there or his own time at the end, this choice was taken from us. Why. I believe we both wanted to be together. So why did i follow others’ bidding.
my understanding is that some souls don’t feel comfortable leaving while people are with them. I can’t tell you how many hospice workers have told me that many, many people prefer to carry out the actual transition without family present. I can’t tell you how many people have told me they were with their loved one for hours, days etc and the minute they left to sleep or get coffee the person passed. Don’t beat yourself up – your loved may well not have wanted anyone around when they passed on. Feel assured they know your intentions and that you cared, whether you were there with them or not.
My 91 year old mom is busy dying, stopped eating solid food about 5 weeks ago, only drinks about 40ml of Ensure food replacement and a tiny bit of water. This has been a hard journey watching her frail body waste away as 6 weeks ago she was walking without any aid. The last few days she has said she would like to go home, today when I visited she told me that she had to be out her room by tonight (lives at a frail care centre). I did’nt realise that maybe this was her way of telling me that she wants to pass on so therefore I wanted to thank you for your article, it has given me so much more insight. When I see her tomorrow I shall tell her she can go home.
Ray-Ann, thank you for leaving this comment. I know personally how hard it is to watch a parent waste away. My Dad did the same thing, he stopped eating and drank very little fluids. As hard as it is to tell them they are free to go, that you and everyone else they care about will be fine, it’s what they need. Your Mom will still be with you in spirit and thought. You’ll find yourself doing something the same way she used to or saying a phrase she used to use, or remembering a moment with her, and you’ll smile. Take good care –
Sitting Vigil at a Deathbed is draining, hearthbreaking and very emotional. The checklist above is very informative. I wish I had read this a year ago before my father passed away. One thing was not addressed in this checklist. How to handle non-family individuals showing up during this time.
It is almost a year and a half after my father’s death and I have feelings of hurt and disrespect toward my sister regarding a non-family member being present while my father was dying. Members present were my sister, her husband, my husband, and me. After my sister and her husband arrived at the assistive living facility where my father had been living, my sister’s close friend showed up. My father was 90 years old with dementia and he did not know this women although my sister told me she knew him. I thought she would stay a few minutes and talk to my sister and leave but she stayed for hours until my father passed away. I felt disrespected by my sister to disregard my feelings. I felt this was family time to be with my father. I felt my sister wanted her friend there to comfort her. I was upset, hurt and anger although I didn’t say anything to my sister or her friend. A few days after my father’s day I addressed this with my sister. She stated she didn’t tell her friend to come and brushed me off. I didn’t believe her because how would she know my dad was dying at that time. Another source of contention was the fact when I called my sister to come to my father’s room she never bothered to call my brother who lived out of state, also. My husband called my brother so he could talk to him before he died. When I left my father’s side after a stressful, heartbreaking and emotional day to travel home because I lived out of state my sister’s calls to discuss a memorial service in additional to a funeral in my father’s home state. My father only had one close friend at the assistive living facility and he had passed recently. I told her that would be find whatever she wanted to do. Keeping in mind this would be two services in two different states and the memorial service would be on my birthday. I felt like had been run over by a bull dozer. Later my sister called and said we would just have one service in my father’s hometown. I am still hurt and my sister has yet to ask me why I am distant. I find that hurtful because we were friends but a few years before my father’s passing our relationship was strained. It had been her suggestion to move my father to her city to live in an assistive living facility. Prior to assistive living my father lived with me, my husband and two children.
Any advise how to move on is appreciated.
Paula ,
Beautifully written . I am a retired nurse (40 + yrs ) . My huge passion was death & dying …during the 80’s . I took Hospice team training as. volunteer ,not a nurse . I read everything Dr Elisabeth Kubler- Ross had penned even spent 2days studying with her . Awesome moments …dying in your home was foreign to many& she was considered a bit of a kook . I have been blessed this last decade to feel the call to the beside of people I know .
Continue with your helping heart to comfort . Often people fear death but it’s the living beings we should fear. Bless you from one Paula to another.
And ….Thank You. ?
Thank you so much for your kind words! It really helps to keep me going that people find these blog posts helpful and worthy of the time it takes to read them. FYI, I’m working hard to publish a book based on the blog so I can reach more people who need this information. Again, that you for leaving a positive comment! Best wishes to you-
Thankyou and everyone for sharing. I was with my mum when she died. If someone could synchronize their death knowing that each family member was Safely returned to their home,another out of quarantine and with their spouse, another younger one occupied in another part of the house. I told her quietly where everyone was and that we loved her. She had been taking panting like breaths then her face changed and the breaths were deeper but spaced out. Her head was tilted back and her eyes party open. Then she stopped breathing and died.
My SIL was distraught, my brother seemed stunned but I felt calm and as if I was being cocooned in some supportive space around me. It was a similar feeling to one I had when I was birthing my third child.
Then for days after my mums death I felt euphoric. I kept saying how beautiful her death was and that I wasn’t afraid of dying any more.
A few days later my brother and I had a Poor communication disagreement Which resulted in me dissolving into deep guttural sobbing that just kept coming. I had been my mums main supporter, Carer, friend, shock absorber for her and the family for 16months and it was over. I now feel restless and quite lost. I find it hard to concentrate as I keep thinking of her death. And I am really really tired.
My brother and I are fine and all my family have left and gone back to their homes and lives.
She too mentioned wanting to go home before she died. The day before she died I watched her as she stared out the window as dawn broke as if she was taking it all in for one last time.
I miss her.
My mom just died on March 19, 2021. I did all of these things for my mom and I’m sitting here crying because I had no idea what “sitting vigil” meant until just now. I want to volunteer to do this because I can’t imagine someone not having what my mom had.
I’m so glad you were able to be with your Mom as she died and care for her, have that time with her. Most people don’t know what a vigil is for many reasons, mainly because (pre-pandemic) we were all living longer lives. I’m sure a local hospice group would be delighted to have you as a volunteer to sit with hospice patients. It is an amazing gift to give those who are dying, and it’s a beautiful experience if you can be without fear. Thank you for leaving this comment behind – it means a great deal to me.
It is now April 2021 and the pandemic is still going strong in many parts of the world. My mother is slowly dying in a hospital while I am on the other side of the planet. Strict covid restrictions have made it impractical for me to hurry on a flight back home. It is painful not to be able to be present with her as she transitions. It broke my heart to have to cancel my last-minute flight. Your checklist helps me envision all the things I wish I could do if only I had the luxury to be vigil by her deathbed and is somehow soothing to me. Thank you.
I’m so sorry about your situation and your Mom being so far away. If possible, can one family member be with her? If so, can you have them bring in a Iphone, Ipad or laptop so that they can Facetime, Zoom etc you and others to her bedside? If not, keep talking to her, meditate on being in that room next to her, imagine holding her hand and telling her how much you love that she was your Mom. She will feel your energy. There’s a strong connection between mother and children that never breaks. Again, I’m so sorry. I’m glad you found some comfort here. Take good care of yourself as you grieve. Best wishes, Paula
Not for a second, I don’t believe that the souls of the dead families members will come through an open window to take the dying person soul(not such lies) once’s someone dies the souls goes to an specific place and they will never can come back.
I would add to this post that it’s okay to feel relief not only that the loved one’s suffering is over, but also that yours is. A vigil for the dying is exhausting, especially if the person is unwilling or unable or unready to let go. It’s not disloyal or selfish to be glad that you get to have a full night’s sleep or just do normal things again. Indeed, I found simple things – a latte, a walk where I saw a ginger cat balance its way along a porch railing before curling up in a wicker chair in the sun – to be unutterably sweet. I appreciated life so much more.
My 2 sisters and I helped my father with my mother’s in home hospice care and deathbed vigil. Her cancer was horribly advanced and the pain was horrific in the final two weeks. All of the things on your checklist were spot on.
The take break one I think is most important. 1 of us made time for the gym each day. I chose to go out for a single drink every other night after mom was settled down for the night. Dad went to breakfast a few times a week with friend. My other sister opted for shopping expeditions to get out for few hours. It was extremely important in week or ten day when mom’s pain was increasing difficult to manage and she lost her ability to speak. Her suffering was unbearable for all of us at times and we each needed time to get fresh air fresh prospective.
I was alone with mom when she took her last breath and the others were in the next room. I called my younger sister into the room because she is also a medical professional to confirm mom was actually gone. Not wanting to cry wolf as we had maintained our vigil for nearly 3 months.
My younger sister felt guilty that she was so relieved when it was finally over. I told her not to feel guilty that we had done all we could for her and equally relieved her suffering was over. My other sister was angry that mom’s end had been so filled with suffering. Plz believe the hospice people were amazing but the level of medications towards the end was stunning and we were still struggling to stay ahead of the pain.
I would add that the initial shock and grief are different for everyone. After she was taken from the house we all looked at each other and said “Are we binge eating or drinking?” My older sister said” let’s do both.” Maybe not the healthiest choices but we spent the night around the dinning room table sharing stories of mom that her adult grandchildren had never heard laughing talking and comforting dad with that laughter. There were things that would have to be handled plans that had to be made the next few days and others to look after and care for going forward. That night was for her caregivers (her girls and her husband of 55 years) A chance to be happy, sad and to appreciate the woman we had loved enough to care for for months. Her granddaughter learned that night that her grandma had been trailblazing badass EMT when it was not okay for women to do those things. Her grandson got to hear about her terror every time her road motorcycle and to appreciate that fact she would still go watch him race. Her husband got to hear his girls laughing and telling each other and their kids what an amazing woman his wife was and how loved she had been. We were not celebrating her death but the life she had lived and the family she had built.
Funerals are for ritual and to express our grief. That night we filled her house with her grandkids laughter and food just the way she liked her house to be and it hadn’t been in months.
Hello Jaylynn, thank you so much for sharing this experience with us all. I’m glad you found this space to give encouragement to others to take a break each day to sustain themselves during these last days of sitting vigil. And your dinner sounds like a wonderful time for the whole family to celebrate the love of your Mom for all of you with laughter and memories. I’m sure it helped your Dad immensely. Again, thank you for sharing such intimate memories of how you all coped with sitting vigil! Best wishes, Paula
Thank you, Paula. I am on a train having received the awful and unexpected news this afternoon that my mum has only 24 to 48 hours to live. I had been looking for guidance on this long train journey to help me cope with this and provide comfort and support to my mum. Your guidance is incredibly helpful and will provide a much needed framework to help me now. Thank you. My dad is in pieces, he can barely talk from the shock of it. Thankfully my brother will be there. Together we can do it and I really want to make the end of my mum’s life as comfortable and peaceful as we can. I think we need to spend this time focusing on that and not looking too far ahead. It is completely devastating though.
Hello Linda, I am so sorry to hear about your Mum! I hope that the blog post about Sitting Vigil can help your Mum and the family through this pain and loss. While you and your brother can help keep everything together in this crisis, I hope all you, your Dad, you, your brother, will get the supportive care and therapy you will need after your Mum dies. This is a traumatic loss, with little time to sort out your own grief during and after the death of a parent. Please take care. You can reach me at my work email if you have any questions or want advice. That email address is pmccann@mmgvtlaw.com. Take good care. Paula
Thank you! This is so helpful. I spent the day with my mom living through a lot of these experiences. She kept saying to me, let’s go, and asking me to take her home (while in the apartment where she has lived 20 years)! She was talking to and about dead relatives. She was trying to get out of bed, even though her legs can’t hold her up anymore. I don’t know how much longer the vigil will go on, but this post helps me understand and be more helpful. Again, thank you.
Please remember to put eye drops in, as the eyes tend to get very dry as well. The mouth swabs work great. I also used a mist bottle that the nurses supplied.
Your checklist for sitting vigil at a deathbed is incredibly thorough and compassionate. It provides much-needed guidance during difficult times. Thank you for sharing!