How to support someone who is dying
November 11, 2022 2:20 PM Subscribe
What are the best things someone can do to support a loved one who is in a potentially long and painful process of dying?
Best answer: Ask them what they need.
posted by saturdaymornings at 2:53 PM on November 11, 2022 [7 favorites]
posted by saturdaymornings at 2:53 PM on November 11, 2022 [7 favorites]
Best answer: This is too broad of a question, because it makes a huge difference if this is your parent or your child or your friend, or someone inside your household or outside of it, and if you're in the same city or across the country/world, or if they're actively dying in the short-term, or in a long-term decline. Is this person old, and their death is the end of a life well lived? Are they young and/or is the death going to be a shock? Is there a lot of unfinished business?
Having said that, and as a person who stood by my best friend as she fought a serious illness for 5.5 years and then died, I'd say yes, ask them. Over those 5.5 years there were days when my bestie wanted to pretend everything was normal, and days when she didn't. There were times when my presence in her home -- in her bed, even -- was vitally required. There were times when I was not needed or wanted. There were times when that "comfort in, dump out" standard was aggressively unwanted (by her). There were a million turning tides, when we thought she would live, when it seemed she might die next week, when it seemed she had 6 months left, etc. The process was not linear. Nor was my support.
posted by BlahLaLa at 3:00 PM on November 11, 2022 [42 favorites]
Having said that, and as a person who stood by my best friend as she fought a serious illness for 5.5 years and then died, I'd say yes, ask them. Over those 5.5 years there were days when my bestie wanted to pretend everything was normal, and days when she didn't. There were times when my presence in her home -- in her bed, even -- was vitally required. There were times when I was not needed or wanted. There were times when that "comfort in, dump out" standard was aggressively unwanted (by her). There were a million turning tides, when we thought she would live, when it seemed she might die next week, when it seemed she had 6 months left, etc. The process was not linear. Nor was my support.
posted by BlahLaLa at 3:00 PM on November 11, 2022 [42 favorites]
Best answer: Exactly what BlahLaLa said, listen to them, offer help, make gentle suggestions, but respect their wishes. Engage them as much as possible, in decisions like pain medication, food and drink. If you've never had this experience, after they are gone you may have some regrets, so if there's something you want to say or you want them to know, just say it. Hold their hand.
posted by starfish at 3:13 PM on November 11, 2022 [2 favorites]
posted by starfish at 3:13 PM on November 11, 2022 [2 favorites]
Best answer: Advocate for hospice, as early as possible. Hospice is about quality of life, and you cannot get hospice on board too early.
Model the dying person's language. Some people want to be warriors and fighters, and that's what works for them, but lots of people are not comfortable with that language.
Don't minimise complaints or seriousness. The number of people who do this is shocking, so I can only imagine it's reflexive?
posted by DarlingBri at 3:40 PM on November 11, 2022 [15 favorites]
Model the dying person's language. Some people want to be warriors and fighters, and that's what works for them, but lots of people are not comfortable with that language.
Don't minimise complaints or seriousness. The number of people who do this is shocking, so I can only imagine it's reflexive?
posted by DarlingBri at 3:40 PM on November 11, 2022 [15 favorites]
Speaking as someone with a medical condition that has destroyed my quality of life, will kill me one way or another, sooner rather than later, and has already taken my twin brother before me, please, please, please understand, there is helping and then there is helping. Unless you are willing to subordinate yourself to this person, to stand by and be ready to help them how they want to be helped, without hesitation, without question, don't bother.
posted by Stuka at 3:55 PM on November 11, 2022 [12 favorites]
posted by Stuka at 3:55 PM on November 11, 2022 [12 favorites]
Best answer: 100% get involved with hospice / palliative care as soon as possible. (Even if the person’s remaining time is measured in months or years).
Palliative care will include:
- looking at their current symptoms
- forecasting their likely later symptoms, such as pain, eating difficulties, or breathing difficulties
- making a plan to treat those symptoms
- getting medical supplies into the house so they’re on hand for urgent issues
- making sure the house is accessible (bathroom, bed, stairs, etc)
- identifying what’s important to the person / family as death approaches (heroic measures, resuscitation, etc)
- planning for the person to move into residential care at an appropriate time or die at home in a humane way that is manageable for family caregivers if that’s important to them
- having a sense of what to expect & how to tell when death is imminent
Crises in these areas WILL show up unexpectedly (big pain spikes / breathing issues / etc). They’re stressful and it adds so much extra unnecessary trauma to be surprised and unprepared. Knowing what to expect and having the supplies prepared means much less suffering for the person and much less trauma for the caregivers.
I am close friends with a palliative nurse and her advice is always to get palliative care involved as soon as a person has a diagnosis, even if it’s a longer term diagnosis.
posted by nouvelle-personne at 3:56 PM on November 11, 2022 [10 favorites]
Palliative care will include:
- looking at their current symptoms
- forecasting their likely later symptoms, such as pain, eating difficulties, or breathing difficulties
- making a plan to treat those symptoms
- getting medical supplies into the house so they’re on hand for urgent issues
- making sure the house is accessible (bathroom, bed, stairs, etc)
- identifying what’s important to the person / family as death approaches (heroic measures, resuscitation, etc)
- planning for the person to move into residential care at an appropriate time or die at home in a humane way that is manageable for family caregivers if that’s important to them
- having a sense of what to expect & how to tell when death is imminent
Crises in these areas WILL show up unexpectedly (big pain spikes / breathing issues / etc). They’re stressful and it adds so much extra unnecessary trauma to be surprised and unprepared. Knowing what to expect and having the supplies prepared means much less suffering for the person and much less trauma for the caregivers.
I am close friends with a palliative nurse and her advice is always to get palliative care involved as soon as a person has a diagnosis, even if it’s a longer term diagnosis.
posted by nouvelle-personne at 3:56 PM on November 11, 2022 [10 favorites]
Best answer: Death doulas are a thing, and a good place to start looking if you are in the US.
posted by kellyblah at 4:08 PM on November 11, 2022 [4 favorites]
posted by kellyblah at 4:08 PM on November 11, 2022 [4 favorites]
I don't mean this to sound accusatory, because it's not (I clearly do not know you or your loved one), but the best thing you can do for them is remember that their death process is not about you. As others have said, ask them what they need, or even what they would like - I don't know the situation, clearly, but if the dying person wants a 45 scoop ice cream sundae with all the toppings, that's what you get them, no questions asked and no judgment.
You will eventually have time and space to process what's happening. This time is about them.
posted by pdb at 4:36 PM on November 11, 2022 [3 favorites]
You will eventually have time and space to process what's happening. This time is about them.
posted by pdb at 4:36 PM on November 11, 2022 [3 favorites]
Best answer: I nursed my mum from diagnosis to death. Almost every answer above is focused on the person who you will be nursing, which is good and also what you asked, but please let me add one important point: do not neglect working on your own support network.
You will be taking on possibly one of the hardest jobs you will ever have. It will drain you. It will beat you up in ways you may not expect. In order to do that job to the best of your ability, you need to have support behind you. Stress will erode your decision-making abilities. It will erode your planning and time-management abilities, and this - coupled with the fact that death and dying do not work on an approved timetable - means that you're going to have to deal with a large amount of unpredictability and chaos. You need to be flexible, and you will need to work on priorities and the fine art of ditching bits of your life that do not serve you at this time.
People will often say "Is there anything I can do?". If they mean it (and you will quickly figure out who does) do not be afraid to use that. Offload small tasks if you can - shopping, kid wrangling, cleaning, laundry, cooking etc. If you're partnered, they're going to have to step up and take care of legal stuff like bills and paperwork for you.
And lastly, be kind to yourself. Take the time to see a therapist, a counselor, a beautician, a movie etc. Go out with your friends and/or family. No-one can be on duty 24/7. I did 16-20 hour days for 6 months with no break and it was the stupidest thing I ever did. Don't be me.
posted by ninazer0 at 4:52 PM on November 11, 2022 [20 favorites]
You will be taking on possibly one of the hardest jobs you will ever have. It will drain you. It will beat you up in ways you may not expect. In order to do that job to the best of your ability, you need to have support behind you. Stress will erode your decision-making abilities. It will erode your planning and time-management abilities, and this - coupled with the fact that death and dying do not work on an approved timetable - means that you're going to have to deal with a large amount of unpredictability and chaos. You need to be flexible, and you will need to work on priorities and the fine art of ditching bits of your life that do not serve you at this time.
People will often say "Is there anything I can do?". If they mean it (and you will quickly figure out who does) do not be afraid to use that. Offload small tasks if you can - shopping, kid wrangling, cleaning, laundry, cooking etc. If you're partnered, they're going to have to step up and take care of legal stuff like bills and paperwork for you.
And lastly, be kind to yourself. Take the time to see a therapist, a counselor, a beautician, a movie etc. Go out with your friends and/or family. No-one can be on duty 24/7. I did 16-20 hour days for 6 months with no break and it was the stupidest thing I ever did. Don't be me.
posted by ninazer0 at 4:52 PM on November 11, 2022 [20 favorites]
Best answer: Everybody is different, but having gone through this recently, I'd agree with getting palliative care started early and hospice as early as you can. Most people start hospice too late. However, neither palliative care nor hospice is the whole answer and one size doesn't fit all.
My loved one had some fairly disturbing reactions to some of the drugs they were given (hallucinations, hiccups, confusion, disorientation). Synthetic THC was particularly bad. Don't be afraid to advocate for your loved one with the doctors if it looks like they're having bad drug interactions. Nag. Use the phone numbers. Call. Ask questions. If the pain isn't getting managed, ask them how to manage it. Opioids are the gold standard, but sometimes sick people can't get pills down - use applesauce - and sometimes they need a pump if they can't absorb pills.
Hospice provides all kinds of good resources and people, but they aren't there all the time. We had a nurse a couple of times a week, an aide a few days a week, a social worker, and a chaplain. They provided a hospital bed, commodes, and all kinds of medicines, disposable goods, and accessories. There was so much stuff our house was jammed full. But when it comes down to it, the caregiver is the one who's there all the time, and it can be terrible.
People can have poor boundaries around death, and some of them will make it about them rather than about the person with the terminal illness. They will sit and weep. Try to keep those people away. The sick person probably doesn't need that. Others will be afraid to visit because they don't know what to say. Tell them that they should just say what they normally say. We talked about sports a lot, for instance. Encourage the loved one's friends and family to come visit and hang out, and if you can, leave while they're there and enjoy some freedom.
Tell the dying person you love them occasionally, and be yourself. They may be agitated or angry from time to time. Don't take it personally. Dying is really annoying, and they have a right to be annoyed. And being a caregiver is disturbing, upsetting, and annoying, and you have a right to be annoyed too. Remember to eat. Find someone you can talk to and talk to them.
posted by Peach at 6:57 PM on November 11, 2022 [13 favorites]
My loved one had some fairly disturbing reactions to some of the drugs they were given (hallucinations, hiccups, confusion, disorientation). Synthetic THC was particularly bad. Don't be afraid to advocate for your loved one with the doctors if it looks like they're having bad drug interactions. Nag. Use the phone numbers. Call. Ask questions. If the pain isn't getting managed, ask them how to manage it. Opioids are the gold standard, but sometimes sick people can't get pills down - use applesauce - and sometimes they need a pump if they can't absorb pills.
Hospice provides all kinds of good resources and people, but they aren't there all the time. We had a nurse a couple of times a week, an aide a few days a week, a social worker, and a chaplain. They provided a hospital bed, commodes, and all kinds of medicines, disposable goods, and accessories. There was so much stuff our house was jammed full. But when it comes down to it, the caregiver is the one who's there all the time, and it can be terrible.
People can have poor boundaries around death, and some of them will make it about them rather than about the person with the terminal illness. They will sit and weep. Try to keep those people away. The sick person probably doesn't need that. Others will be afraid to visit because they don't know what to say. Tell them that they should just say what they normally say. We talked about sports a lot, for instance. Encourage the loved one's friends and family to come visit and hang out, and if you can, leave while they're there and enjoy some freedom.
Tell the dying person you love them occasionally, and be yourself. They may be agitated or angry from time to time. Don't take it personally. Dying is really annoying, and they have a right to be annoyed. And being a caregiver is disturbing, upsetting, and annoying, and you have a right to be annoyed too. Remember to eat. Find someone you can talk to and talk to them.
posted by Peach at 6:57 PM on November 11, 2022 [13 favorites]
Best answer: Educate yourself so that you're not the person who goes to pieces in moments of crisis. When my dad was diagnosed with cancer, I happened to watch a video doc called Silverlake Life: The View From Here. It's a very intimate, poetic and ultimately mundane glimpse into illness and death. I'd never experienced anyone's terminal illness before and the film served as my roadmap. It showed what to expect - how sick you have to get to die. This simple knowledge took most of the terror away. Be prepared to see the best and the worst from the people in your circle.
posted by brachiopod at 8:05 PM on November 11, 2022 [9 favorites]
posted by brachiopod at 8:05 PM on November 11, 2022 [9 favorites]
Best answer: Having gone through something like this with a couple of family members-- very different people, with very different conditions-- one thing that helped me was taking inventory of their situation, their needs and what things I am particularly placed to help with. Maybe there are things they need that you are not the best at, but they have other people who can fill those needs. As previous posters have said, ask and maybe they will be able to tell you. Or if there is a hospice worker, social worker or psychiatrist, hopefully they can help you. (One of my family members was not in hospice, but had an oncological psychiatrist who helped me understand things like mental changes people go through with certain kinds of illness.) I found with one family member, who did long stints in hospital, that I was often posted near the door to keep people, or certain people, from coming in. Or to keep visitors from congregating near the door and talking. Or to pop out to buy restaurant food, or to read out loud while they tried to sleep. There are other things I am kind of shit at performing, and other people are better at those things, or their relationship with the patient is more suited to doing them. We are who we are, and that's not going to change because someone is ill. But be ready for the dynamic between you to change. My mom became very distant and started detaching from everyone and at one point she actually explained that. (Considerate to the end, she didn't want anyone to take it personally.) With both the family members that I was really close to, their response to terminal illness was surprising to me and it was really important to observe and go with the flow.
posted by BibiRose at 5:16 AM on November 12, 2022 [1 favorite]
posted by BibiRose at 5:16 AM on November 12, 2022 [1 favorite]
My father just died in hospice care at home with me as his primary caregiver. As mentioned, hospice staff basically sort of check in and give support and tips and help with medication prescriptions, that sort of thing. Two pragmatic things: One, if you're doing the caregiving, try to find someone to come at night so that you can get some sleep. After a few days of sleeping on the couch in the room where my dad's hospital bed was and waking up to attend to him every few hours on top of the full daytime work, I was exhausted. We found a CNA for cash under the table who came from 11 pm to 7 am and that was a godsend. Two, and this depends on the situation, but get a humidifier. I regret not realizing this until my dad had already passed but the air at this time of year in their area is DRY and the only liquid he was getting after awhile was through his peg tube with his medications (the water used to flush the tube). He'd lost the ability to swallow due to a stroke and I often swabbed his mouth to keep it moist but I'm sure he was dry as hell and really uncomfortable. The medication also probably dried him out. Small thing, but might have made him a tiny bit more comfortable.
Oh and also - my dad could understand everything although he was dying and had total aphasia. I sometimes cracked jokes at him and his mouth sometimes twitched. He could hear and understand everything, so bear that in mind, too.
posted by erattacorrige at 7:27 AM on November 12, 2022 [4 favorites]
Oh and also - my dad could understand everything although he was dying and had total aphasia. I sometimes cracked jokes at him and his mouth sometimes twitched. He could hear and understand everything, so bear that in mind, too.
posted by erattacorrige at 7:27 AM on November 12, 2022 [4 favorites]
Talk with the person about expectations for how things are going to go. For example, my mother was adamant that she wanted to die at home, and my sister and I promised to support that. I think it gave her comfort in knowing that she would have some control over how things would unfold. Encourage difficult conversations. My one regret is that I let my mother be the one to bring things up, out of fear of upsetting her or bringing unnecessary drama (and just plain old fear of not being able to hold myself together, feeling like I needed to be 'strong' for her). I wish I had initiated some of the conversations to take the burden away from her and to more fully be there for her emotionally.
Just noting that YMMV when it comes to hospice. My experience with both parents was that hospice was only marginally helpful (this was in FL). Still worth doing, because you and the dying person will need all the help you can get, and seconding starting as early as possible, as others have said. However also keeping in mind that the help you get from hospice may be quite limited. You will likely need other supports, depending on how many caregivers are available.
Some previous questions that might be helpful:
https://ask.metafilter.com/365512/Caregiver-tips
https://ask.metafilter.com/365564/Tell-me-your-one-weird-trick-for-loved-one-caretaking-advocacy
https://ask.metafilter.com/362985/In-home-hospice-for-adult-who-lives-alone
https://ask.metafilter.com/347535/How-do-I-prepare-myself-for-my-parents-deaths
https://ask.metafilter.com/335891/Need-ideas-to-help-comfort-and-entertain-a-very-sick-Mom
posted by amusebuche at 7:07 PM on November 12, 2022
Just noting that YMMV when it comes to hospice. My experience with both parents was that hospice was only marginally helpful (this was in FL). Still worth doing, because you and the dying person will need all the help you can get, and seconding starting as early as possible, as others have said. However also keeping in mind that the help you get from hospice may be quite limited. You will likely need other supports, depending on how many caregivers are available.
Some previous questions that might be helpful:
https://ask.metafilter.com/365512/Caregiver-tips
https://ask.metafilter.com/365564/Tell-me-your-one-weird-trick-for-loved-one-caretaking-advocacy
https://ask.metafilter.com/362985/In-home-hospice-for-adult-who-lives-alone
https://ask.metafilter.com/347535/How-do-I-prepare-myself-for-my-parents-deaths
https://ask.metafilter.com/335891/Need-ideas-to-help-comfort-and-entertain-a-very-sick-Mom
posted by amusebuche at 7:07 PM on November 12, 2022
One final thing: Forgive yourself for not doing a perfect job. The fact that you're there at all is a miracle.
posted by Peach at 1:28 PM on November 13, 2022 [1 favorite]
posted by Peach at 1:28 PM on November 13, 2022 [1 favorite]
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posted by Thorzdad at 2:33 PM on November 11, 2022 [14 favorites]