Sitting Vigil at a Death Bed: A Checklist

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Four young adults were sitting vigil at their mother’s death bed and they were completely unprepared for what they were facing. They contacted me for suggestions on what they could do to comfort their mother. Their mom was dying from cancer, she 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.

To honor their wish, 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 starting point.

1. Pain Management:  Work with the medical staff to assure that your loved one has all the pain medication and muscle relaxant they need to be comfortable. What are the some of the signs that tell you the dying person is uncomfortable physically or in pain? They 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. When someone is dying from cancer, for example, their body can run a high temperature, and with those temperatures there can be seizures, so they need medications to relax their muscles. Also, 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 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 and they are unconscious or rarely conscious, 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 (as they are a one-time use only product) 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.

3. Cleansing 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 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 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 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. 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 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. For suggestions on what to read to a person who is dying, see the post What To Read to a Person Who Is Dying?  If anger is keeping you from visiting someone who is dying, please consider reading Anger Stops You From Visit to a Deathbed? Suggestions.

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 device in order to use Skype or any other video conferencing service.

 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 a 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 suffering is 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 a 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 advice to offer, please leave a comment to share with other readers – your thoughts are welcome here!

 

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73 comments

  1. 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

    1. 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!

    2. 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.

      1. Anita, thank you for sharing that beautiful moment with all of us!

      2. 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

        1. 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.

  2. 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!

  3. I appreciate the advice. This is a must read for anyone who needs to deal with the painful loss of a loved one.

    1. 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.

  4. 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.”

    1. 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.

    2. 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.

    1. Steven, you are so welcome! And thank you for taking a moment to leave a comment, truly appreciated.

  5. 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?

    1. 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!

  6. 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

    1. 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.

  7. 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.

    1. 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.

  8. 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.

    1. 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!

  9. 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!

    1. 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.

  10. 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.

    1. 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.

  11. 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.

  12. 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.

  13. 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

    1. 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.

  14. 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”?

    1. 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.

    2. 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.

  15. 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.

    1. 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!

  16. 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. 🙁

    1. 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.

  17. 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.

    1. 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!

  18. 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…

    1. 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.

  19. 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.

    1. 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.

      1. Thank you. That helps!

      2. 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.

  20. 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

    1. 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.

  21. 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.

    1. 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

  22. 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.

    1. 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?

  23. Thank you for this information. We will be experiencing this soon and it gives me some more insight.

  24. 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.

  25. 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

  26. 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

  27. 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.

    1. 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!

  28. 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

  29. 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

  30. 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.

    1. 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

  31. 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.

  32. 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

  33. 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 .

  34. 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.

    1. 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 –

  35. 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.

    1. 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.

  36. 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.

    1. 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.

      1. 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.

  37. 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.

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