Conversations with kids about elder’s hospice
May 9, 2024 9:05 AM   Subscribe

My spouse’s grandmother lives with us, and will be entering hospice care at home soon. She’s 100 years old and has end-stage COPD. We have two young kids, and I need to figure out how to talk to them about what we are all about to experience.

Our kids are three and eight years old, and their great-grandmother (GGM) has lived with us for as long as they can remember. Their grandparents (my spouse’s parents) are in their seventies, also live with us, and they are the primary caregivers for GGM. But we all chip in with care, the house is big enough to accommodate everyone comfortably, and it has been very nice having four generations under one roof for the past several years. The kids know and love GGM as a member of the immediate family. Even though, to young children, I think the very old must seem almost like another species.

So. GGM has had a decline in the past few months, is now on oxygen full-time, has greatly decreased stamina and difficulty breathing, and we’re going to start home hospice care.

How do we talk to the kids about this? There’s the fact that their loved one will die (maybe sooner, maybe later, but probably sooner). Then also, they’ll have some firsthand witness of the process. Their bedrooms are right across the hall. How much can we, or should we, shelter them from this? How much can we, or should we, prepare them for in advance? Any personal experience, or thoughtful published accounts, or good books on the topic, or perspectives from professionals, would be welcome. I understand hospice care may include the services of an end-of-live doula; I imagine this is the kind of thing they can help with too.
posted by hovey to Health & Fitness (15 answers total) 3 users marked this as a favorite
 
More appropriate for the three year old than the eight year old, but the picture book Ida, Always talks about a pair of polar bears as one polar bear (Ida) enters the "hospice" process. We used this with our 1 and 3 year olds, and it was a little advanced, but also explained the concepts of slowing down, resting a lot, conflicting emotions, not knowing what's next, etc. in an approachable way.

It is too wordy for a three year old, so we only read about 50% of the words, ha.
posted by samthemander at 9:14 AM on May 9 [2 favorites]


More appropriate for the three year old than the eight year old, but the picture book Ida, Always talks about a pair of polar bears as one polar bear (Ida) enters the "hospice" process.

Onlooker coming in to add that this is based on a true story of two bears in NYC's Central Park Zoo (although some of the nuances of the real story may be best ignored).

....My own great-grandmother passed when I was about six or seven, and I barely have any memories of her; I was not brought to her funeral because my parents thought I wouldn't have understood enough about what was happening. If it helps to hear, I don't feel like I missed anything. I do have vague memories of occasionally hanging out in one of her favorite rooms with her when we went for family visits to my grandparents (she lived with them), but that's it, and I'm okay with that. I have the stories my parents and aunts and uncles have told me about her and I have a letter she wrote me when I was about four and that's fine.

So there's that anecdote that your three-year-old may not be irreparably traumatized by her loss. I'm sure that at the time I asked occasional questions about what was happening, but I don't remember that.
posted by EmpressCallipygos at 9:24 AM on May 9 [1 favorite]


Best answer: I would say, use plain language and talk about it in advance. With the older kid you can probably start a couple weeks before you expect her to die, because that kid can manage when and how they talk about it. With a little kid I would say a couple days' notice is fine, especially if you don't want the child talking to GGM about it.

- Do not use ANY euphemisms especially don't compare dying to going to sleep. The more plain and clear your language, the more the child will understand. You can say "pass away" eventually, but for the initial conversations, I would use the word "die" instead.

Here's how I told my 3 year old about a grandparent's impending death: "GGM is getting really old, she is 100 which is older than almost everybody on earth! Isn't that amazing? She has had an amazing life and her age means she is coming to the end of it. So she will probably die in the next few months, I don't know exactly when.

"Dying means her body will stop working and she won't breathe or move any more, like (compare to a dead animal or plant the kid is familiar with - or even how a tree's leaves die and fall off in winter - something that's clearly dead but not related to trauma).

"We will use medication to make sure she's comfortable as her body changes and slowly stops working. We will make sure it won't hurt and her body feels ok. She will probably start to eat less and move less for a few days before she dies.

"After she dies, some kind helpers will take her body away. They will bury it in the ground / use a special machine to turn her body into a powder called ashes, and we will ___ her ashes. Then we will have a family gathering to remember her.

"After GGM dies we will never see her again. That will feel sad, and we will cry, even me, and miss her! But we will always love her, and remember her, and talk about her together. Do you have questions? You can think about it and if you have any questions, ask me or (other adult) about it.

"For now, she's still alive, so this is a special time for us to spend extra time with her, and make sure she knows how much we love her. Can you think of some good ways we can connect?"

Have the kid brainstorm stuff like draw her a picture, write her a poem, take photos with her, make food she likes, keep fresh flowers in her room, sit with her every afternoon, listen to her fave music, etc.

Starting now, before you tell the kids, facilitate some special memories for them- make sure they spend time with her while she is as conscious as she'll be. Take lots of photos, pictures, document thier expressions of love, etc. Remember that you may end up not telling them she's dying while she's fully conscious, so make sure that time is special, in case they don't find out about her death until she's not well enough to socialize any more. That will help them feel like they did have a chance to "say goodbye" with their presence and connection, even if the actual moment when they say goodbye is when she can't respond.

When she's actually dying, ask the hospice nurse what to expect. Some other thoughts (I'm close with a palliative nurse who has shared insights):

- Decline tends to accelerate so that can give a rough timeline. If her condition is noticeably worsening over the course of weeks, she will probably live for weeks. If it's changing over the course of days, she will probably live for days. If it's changing over the course of hours, she may only have hours left. Once you get to the "days" speed it may be a good time to tell the kids.

- My (adult) family did a special gathering for a dying relative who wasn't responsive; gathered, held hands, sang songs. We went around the circle and told the person how much we loved them, thanked them for being in our lives, and directly told them it was ok for them to die, and we would all take care of each other, remember them forever, and be ok. It was really special and beautiful and the person died peacefully the next day. If you think the kids can handle it, that might be really nice.

- I had the kids make notes and drawings, and buy flowers, all of which I tucked into the casket. The kids attended the funeral but I kept them far back when the casket was open, because I saw an open casket funeral of a distant relative at age 6 and it was a bit too vivid for me - I wasn't scared but I ruminated on it for years.

- Call in relatives to say goodbye early. If they can only manage one trip, personally I would choose to see the person when they're conscious so we can connect and say goodbye, and then miss the funeral. Connecting with the person who is dying is where my values would be, rather than only being there when they are unresponsive or for the funeral.

- When people are getting close to death, it's ok to not give them IV hydration or nutrition. Digestion slowing down is a part of dying and it's ok to let their systems shut down. Digestion and elimination and getting briefs changed is also likely quite uncomfortable at that point, so respecting their ability / interest in eating and drinking is ok.

- When people are dying their breathing changes and can be quite loud. Talk to the kids about what is happening and what it means "there is a little bit of fluid in her lungs so we can hear it vibrating when she breathes. I know it sounds strange but it doesn't hurt, that sound is a natural part of dying just like coughing is a natural sound if we have a cold." Medication can help if it's alarming.

- If your kids are the type to have watchful tendencies you can let them know the body language of discomfort - moaning, shifting weight, seeming agitated, and especially a slight frown. Task them with observing and interpreting this body language and letting you know, so you can medicate any pain. That will help them feel connection to GGM, and ownership of her care, so they can be active and helpful instead of feeling passive or helpless.

- Expect the child to fixate on death and talk about it a lot. Answer the exact question in a brief, factual way. "Mom, will you die?" "Yes, eventually, everyone dies. But most people are old when they die so I expect to have a long happy life with you."

- Make sure you have a symptom management kit in the house, (opiates for pain, etc) and know how to use it. Use it early and liberally, there is no risk of over-medicating her at this point but there is a risk of under-medicating and her being in pain.

- Many dying people report feeling cold so watch for that and keep her room cozy.

- It's ok to take some breaks but at the same time, even when you kinda need a break, you make thank yourself later if you tough it out and stay longer. One night I took a break from visiting a dying relative and the person died that night. I could have been there and I really regret that break (even though I was going through a lot and I did really need a break, I wish I had been there). The tiredness is temporary, the death is not.

- My parents kept me separate from my grandparents' deaths (in other countries) when I was 3. As a tween I was absolutely heartsick that I never really knew them, and especially that I had not honoured them or said goodbye when they died. So I made sure to take (calm) photos of my kids at their grandfathers' funerals, documenting their attendance and the artwork and flowers they brought. I want them to look back later and know that they DID say goodbye in a respectful and loving way.

- Dying is hard but dying surrounded by loved ones at age 100 is the best possible death, keep that in mind and remind the family often! I wish you peace and connection as this stage of life happens, it's a beautiful and noble thing to bear witness to the end of someone's life.
posted by nouvelle-personne at 9:41 AM on May 9 [88 favorites]


I have n=1 experience with raising a kid but they can handle death and dying if offered the opportunity to ask their questions, to come to the natural conclusion that you will die someday and so will they, and to grieve these changes to their worldview. Hiding these realities I think is often more detrimental as it adds a trust element to it - of not knowing, and what else are you hiding from me kind of thing.

My daughter has watched my grandmother go through dementia and knows she will soon die, and each time it comes up she is sad about all of it, but we give her space to process these feelings and she comes out the other side.

One thing that seemed to click with her was pointing out that the sadness she feels is because of how great her life is and how much she loves those in it, as she seems to have grown in gratitude as a result. We tell her often that the reason we cry when we leave her great grandmother is because how much we loved her when she was well.
posted by openhearted at 9:42 AM on May 9 [3 favorites]


These worksheets were recommended by a therapist when we had a similar situation.

For us the relative that lived with us was at a hospital when they entered hospice and they didn't come home before passing. We chose not to bring the kids to visit after relative really started to look bad. We were really honest about what was happening because we didn't want the kids to feel like we were hiding anything but relative also looked so much different in the last few days and we didn't think the kids needed to have that image in their heads.

I would be honest but also go with your gut about what kids can handle.
posted by MadMadam at 10:28 AM on May 9 [1 favorite]


My Mom died of COPD. A hospice nurse explained that COPD inhibits breathing, obviously, and when we can't breathe adequately, our brains go into panic mode. People with end-stage COPD can experience personality changes, becoming fairly difficult, because they are in a near-constant state of panic. It's difficult to be with them, and horrible for them to experience. My Mom was a holy terror at the best of times, so, yeah. Compassion and empathy work. Hugs and It's so hard to not be able to breathe well, you must be so tired. Love-bombing as much as you can. It helped me to know that it wasn't personal, it was physical.

Ask a hospice staff person to describe physical realities to you, so you can talk to your kids about things like urinary incontinence or coughing or pain. I've experienced birth, and been with dying loved ones. It can be messy, smelly, boring. The known is less scary than the unknown. This is a chance for your kids to show love, not just say or receive love. While GGM is still around, get the stories and description of people. Your family history is there.
posted by theora55 at 10:32 AM on May 9 [1 favorite]


While GGM is still around, get the stories and description of people. Your family history is there.

Coming back in to second this. This is one thing I do regret about my great grandmother; she died when was young and I'm okay with that, but I do regret that no one else in the family had thought to ask her more questions about her past. Because when I finally did get old enough to ask everyone "hey, Nana wrote me this letter when I was four that said that her family came from Ireland. Do we know where in Ireland?" all anyone could tell me was "you know, I don't think we ever asked her." And that sucks.
posted by EmpressCallipygos at 10:42 AM on May 9 [2 favorites]


- It's ok to take some breaks but at the same time, even when you kinda need a break, you make thank yourself later if you tough it out and stay longer. One night I took a break from visiting a dying relative and the person died that night. I could have been there and I really regret that break (even though I was going through a lot and I did really need a break, I wish I had been there). The tiredness is temporary, the death is not.

My spouse worked in a nursing home and saw a fair amount of death there, as well as the deaths of her own parents (30 years apart). She's certain that people will often wait to die UNTIL their relatives take a break, for whatever conscious or subconscious reason (they don't want them to have the sadness/trauma of seeing them go, they don't want to have to be the one to initiate the letting-go, etc.). It's understandable to regret taking the break for your own sake, but for theirs it may seriously be what they want and can't quite articulate.
posted by dlugoczaj at 2:32 PM on May 9 [9 favorites]


I told my father in his last weeks that if he was ready to go I was OK with it and that I loved him.

I wanted to be with him in his last hours but my biological excuse for a mother prevented it.This was NOT to protect me: I was with him at the hospital when he told his nurse that he didn't want to live anymore and another time when he was temporarily demented from lack of oxygen.

If you are atheist or not christian make sure that GGM's caregivers don't try to lovebomb the kids about Jesus....this was why I was blocked from being with my father.
posted by brujita at 3:18 PM on May 9


Whenever hospice comes up, I refer to Barbara Karnes. She literally wrote the book on hospice--the "little blue book," Gone From My Sight, that a lot of hospice agencies give out to families. She has two coloring books that are good for kids or adults, I am Standing Upon the Seashore and The Tree of Life.

It's still somewhat rare for hospice agencies to have death doulas on staff, but you might have one available. If not, the agency will certainly have a social worker and a chaplain, and they along with all the other hospice services are meant to serve the whole family, not just the person who is dying. You can also contract with a doula privately.
posted by assenav at 6:21 PM on May 9 [1 favorite]


One night I took a break from visiting a dying relative and the person died that night. I could have been there and I really regret that break (even though I was going through a lot and I did really need a break, I wish I had been there).
posted by nouvelle-personne

My spouse worked in a nursing home and saw a fair amount of death there, as well as the deaths of her own parents (30 years apart). She's certain that people will often wait to die UNTIL their relatives take a break, for whatever conscious or subconscious reason (they don't want them to have the sadness/trauma of seeing them go, they don't want to have to be the one to initiate the letting-go, etc.). It's understandable to regret taking the break for your own sake, but for theirs it may seriously be what they want and can't quite articulate.
posted by dlugoczaj

This is a very kind and healing thing to tell me, and I really appreciate it, dlugoczaj. Thank you.
posted by nouvelle-personne at 6:25 PM on May 9 [3 favorites]


Response by poster: Thank you everyone for your answers, especially nouvelle-personne, thank you for sharing all of this. It is very helpful and kind. And I think you're right, the kids will be able to let us know how much they can handle.
posted by hovey at 8:42 PM on May 9 [3 favorites]


Be prepared for after it's all over, for kids to still have sadness over the thought of death/you dying/them dying and need to keep talking and processing.
posted by emjaybee at 8:17 AM on May 10


This has just reminded me of something unlikely:

I kept them far back when the casket was open, because I saw an open casket funeral of a distant relative at age 6 and it was a bit too vivid for me - I wasn't scared but I ruminated on it for years.

So, the video for Madonna's song Oh Father has a perspective on this (I promise this is relevant). In the video there's a moment when a little girl (who's supposed to be "child Madonna" I think) is at her mother's funeral and is brought to the casket. She leans down to kiss her mother's body, but then hesitates when she sees that the lips of the body are sewn shut. Madonna has said that this image is based on something that actually happened to her, and which she said she was thrown by for many years.
posted by EmpressCallipygos at 9:04 AM on May 10 [1 favorite]


Mod note: By the way, this post and nouvelle-personne's wonderful answer have been added to the sidebar and Best Of blog.
posted by taz (staff) at 1:00 AM on May 11 [1 favorite]


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