The Care and Keeping of Death
Everything I did to prepare for my mom’s death and take care of her body, things I would have done differently + resources
NOTE: I wrote most of this essay in one sitting after my mother died, but I ended up finishing it 3 months later for various reasons. I’m still keeping the beginning as-is, as this was mostly written while I was still in the depths of it all.
It’s been 3.5 weeks since my mother died. It feels like a lot longer, for some reason. I guess so much has happened since that it feels like a whole lot of significant time has passed by…
I know the value of writing about these things while they’re fresh and before we move onto new chapters. I did this in my blog posts about my ankle breaking experience — brain dumping every feeling, thought, experience, and insight. And that has helped a lot of people who have needed someone to validate their experience.
I hope this can be a useful bunch of words for those who are challenging their ideas of the American/western death industry and/or for those who are ready to do death differently.
First of all, I am a very upfront person when it comes to terminology and ideas. I don’t tend to use euphemisms like “passed away” unless I am talking to someone who is experiencing grief and that is the terminology that is the most comforting to them.
For the rest of you, I believe that as a culture we can handle calling things what they are. So, yes, I say: died, dead, death, dead body, etc.
As a culture that is intensely death-avoidant, I believe the euphemisms are part of this unhealthy relationship with reality, and I support facing life head-on. That includes DEATH.
Yes, it is often uncomfortable for many people to hold these words and ideas. I support that discomfort. It’s important to grow and to embrace what life truly is. Hiding from life does not make us feel alive. In fact, it creates conditions for mental unwellness and pushes us toward unnecessary mental harm.
Get uncomfortable friends. It’s where the excellent parts of life are waiting for you…
Now, onto describing my experience, my strategy, and my perspective on this experience with my mama.
Preparing for Death in the Future
Many people are very death avoidant and refuse to face the fact that they will one day die. My mother very much fit into this camp, which was frustrating for me as I tried to get her to make plans and make choices. A couple of years ago, I sat down with her to work on an Advance Directive, and about halfway through she had a panic attack and demanded we stop.
She would regularly proclaim that she was going to live to be 120, because she ate so perfectly and was much healthier than everyone around her (so she thought…).
As someone very much oriented toward death acceptance and learning about how to prepare for a good death, you can imagine how frustrating this was for me. Explaining to her that even I had a completed and notarized Advance Directive for myself didn’t help her open up.
It wasn’t until I had to bring her home after she started falling that I knew we had better force this poor lady to finally finish these forms, or it would be too late. My siblings were in town and I enlisted their help to pressure her to finish them. And it worked.
We got an Advance Directive completed for her, named me as her Power of Attorney, and got me added to her bank account. All official and done with the support of her bank, while she sat in the car because she was too weak to go in. The bank staff were so beautifully supportive and I was immensely grateful that they did everything so quickly and smoothly.
It was awful, I won’t lie. I could see how painful it was for her. How terrified she was. It was one of the worst days of her life. I was beyond grateful to have the support of others doing the pushing, so that once they left she wouldn’t hate me.
Unfortunately, it had been procrastinated to the end of their visit, and they rushed out of town right after the paperwork was finished. She sat on my couch, staring out the window for a couple of hours, with the saddest expression on her face. I gave her a hug and let her be.
I won’t forget that look on her face and the depth in her eyes, as she finally realized that she was indeed on the path toward death (though, mind you, she continued to deny it until about 2 weeks before she actually died)…
The Practical Bits
What can you do for yourself and your loved ones?
Do this differently, please. I hope that you have great relationships with your parents, and can have these conversations when they’re younger and push them gently to be realistic about their plans for end of life.
Get that Advance Directive finished for them, and finish yours while you’re at it (none of us know when we will die and it’s better to be prepared than not). It requires filling out a form you can download from your state/province government website, then getting it notarized. It basically states what your wishes are medically if you are unable to communicate for some reason. What level of resuscitation do you want? Who do you want to name to make decisions for you if you can’t?
Next, once someone is clearly heading toward incapacitation, it’s important to get a Power of Attorney form filled out and notarized. It might even be worth getting this filled out earlier if you have a trusting relationship with someone. This names someone as the executor of your estate, and you can choose which aspects of your assets you want them to be in charge of. If someone is beginning to get dementia or another serious brain disease, it makes sense to have a trusted person be in charge of all assets.
Both of these notarized forms will help you while that person is still alive. It grants you access to the ability to sign for them, to make decisions for them, and so on. Crucial stuff if someone no longer can make choices for themselves.
Finally, make sure that you get on their bank account as well. This is important so you can manage their money without committing fraud, of course. But it’s also essential for after they die, as then you will already have legal access to the money they have left over. Without being on their account at the time of death, it can be a really complicated process of getting access. Some states have such rigid rules that you may not be allowed access to their money for a long time, and it may instead go directly to the state if they can’t decide who it should belong to.
You can also complete a will if you and/or your person has assets that would need to be legally assigned to beneficiaries at death. My mother didn’t have any of that, as she had offloaded and rehomed most of her assets in previous years, so we didn’t worry about a will. She pointed out to me the specific things that she wanted to go to specific people, and I kept it all in mind when dealing with her remaining stuff after her death.
YOU might want to complete a will, however, especially if you have minor children or pets. Naming someone to care for your children in the event that you die is something that most parents would like to be able to do. Plus, it allows you to have a conversation with that person beforehand, which makes them more likely to be mentally prepared.
It’s important to realize that even with all of this preparation, sometimes wishes will be ignored and paperwork won’t make it into the emergency room. We saw a lot of this during the pandemic. Therefore, you can see some of this work as your own process of facing death, sitting with your mortality, and being a responsible adult. It’s a ritual leading you toward making friends with the end of life process.
I truly hope that you can convince your parents to jump on board with this planning process. Because having it dumped into your lap when things become urgent is truly unfair for everyone involved. Don’t do what I did. Face your parents, have hard conversations, and make them mad if you have to. Speak reality, spark compassion, and explain choices.
Just do it already.
If you have scary parents that you’ve cut off contact with due to abuse, then do your research around your legal responsibilities to them. Find out if you’ll be held responsible for them if they become incapacitated. Decide what your plan is going to be. If they are death avoidant, have zero plans, and have no money, investigate if they will qualify for government assistance (and how quickly that can be put into place). If they won’t qualify, then you’ll need to start a savings account NOW for their care later.
I never, never advocate for taking on the one-on-one care of an abusive parent. But you can still show love and be compassionate toward them by ensuring that they will be cared for by someone. It doesn’t need to be you. Take care of you and also act in healing ways toward them as much as is healthy for you.
Yes, I took on the care of an abusive parent. But our relationship was complicated and the situation was immensely complicated too. And once things became clearly dysfunctional, I asked my siblings to help pay for her to go to a comfy place. Then I was able to resume spending time with her without existing at the depths of burnout.
You can both take care of yourself AND accept the adult responsibility for your old people. Especially if you plan ahead.
Preparing for Death When it Shows Up
There’s a lot of wondering, guessing, and waiting that’s involved in the death process. There’s no clear way to predict when it’s actually coming, until it’s quite literally at your feet (and even then sometimes people have bizarre recoveries).
There were two clear times during the summer that I thought for sure death was on its way, and so did the hospice team. And then lo and behold, my mom would make a recovery and even become more clear-headed for a couple of months (I’m sure my siblings occasionally thought I was exaggerating her mental state when they would visit, because she would try very hard to mask her dementia when they were around).
It was wild!
I ultimately put her in an assisted living facility because, yes, I needed a break from her, but also she suddenly had so much energy and was acting like she might enjoy being social. She needed more than sitting in a recliner in her room could offer. And she did spend 2.5 months socializing, playing bingo, eating lots of food, and enjoying the company of others when she was in a good mood.
(Caring for our old people used to be a community/family endeavor. We’re not meant to do this alone. Utilizing the services of hospice, assisted living, and other community resources is a modern way of ensuring we don’t harm ourselves or create too much burnout in our intentions to give our old people the best care we can.)
Once an elderly person starts falling over and over again, you can guess that death isn’t too far away… My mom had experienced several brutal falls over the past year, including one with me which I will never be able to shake the feeling of out of my body (she slipped in the shower while I was holding her – and she was feistily breaking safety rules – and I fell with her because everything was too slippery – she hit her head on the bathtub and I will forever replay that sound in my head….ugh).
My mom was doing great at the assisted living facility, mostly because she was a feisty human being. The first couple of months she threw a lot of tantrums about everyone asking her to use her walker… “I don’t need it, leave me alone, stop pestering me…watch!” She did not like being told what to do.
On October 28th, she was taking herself to the bathroom in her room (no walker, of course), and landed HARD on her back on the floor just outside the bathroom. I don’t know how long she was there, but there was a urine stain on the floor when I got there, so my guess is she had been there for a little while. Of course, she wasn’t wearing her call button (did I mention she was feisty and rebellious?).
They got her all put back together again and called her hospice nurse, and he’s ultimately the one who called me. I came right over, and rubbed her back for a while as she was lying on her side on her bed. She was in a lot of pain, though she hadn’t broken anything or scraped much of her skin (I did find a tiny wound on her back and treated it).
My gut said this was the fall to bring on the end… and ultimately it was.
Her pain levels suddenly increased and she kept saying that her ribs hurt quite a lot (she had osteoporosis, so this was normal for her and the fall likely made the intensity worse). They started her back on narcotics (at my request), and the drugs just weren’t cutting her pain (and perhaps fear) at a low dose.
At the end of life, it’s common to have a lot of pain. Treating that pain is a humane thing to do, especially for someone who isn’t clear-headed and therefore can’t entirely understand or willpower their way through the pain. There are many ways to do that, but narcotics are the go-to for hospice care and places where other options aren’t so legal.
Narcotics suck, I won’t sugarcoat that. They change someone’s personality. They take away some of their personas that you really like, and leave you with ones you don’t like. Narcotics put them into a drugged stupor where they’re never really fully awake anymore. Trying to get them to do ANYTHING is one of the most frustrating experiences in all of life (I’m not joking).
I had to leave several times because I hated what the drugs were doing to my mom. Spending an hour trying to wake her up enough to get her out of her wheelchair and into her comfy bed was more painful than my memories of sitting with my spirited toddler through a tantrum.
End of life will push you to your limits and then send you back for another round of WTF is going on…
Some days she was more alert. Some parts of the day she was herself for a bit, and the frustrating part of having her in a facility was not knowing how to time my visits. I would try to come right before a medicine dose so that I might catch her at her most alert state, but that didn’t always work. Sometimes she was crying out in so much pain that she needed extra, which ensured that any visits that day were entirely frustrating for everyone.
But I still showed up every freaking day. I would still rub her back, comb her hair, and try to interact with her. Most of the time she would swat me away like I was an irritating fly. So I would try to make her comfortable in whatever situation she was in, and then leave.
It takes a lot of mindset work to show up for old people (especially those who have been so dysfunctional in life). To meet them where they’re at. To support their life choices (even the ones you definitely wouldn’t have made). To know that you would do things differently for them if you could, but you’re limited to the resources at hand.
In my dream world, my mom wouldn’t have been such a jerk and we would have had a good relationship. I would be living on my future homestead, and she would have a cozy little cottage I built just for her. She would get to garden and grow her fruit trees, and I would take care of her while also giving her space and independence. She wouldn’t have starved her body into cell cannibalism and Covid wouldn’t have ravaged her brain. She would have been strong and clear headed, and would have lived well into her 90s, as she wanted. We could have managed her pain naturally or with some alternatively produced drugs that were more functional medicine based (they do exist, FYI). She would have still died, but it could have been more connected and far less frustrating. It could have been very cozy and full of family relationships, joyful memories and peace – all the things she truly wanted, but pushed away through her meanness.
I share that because it’s part of the grief process to face what we wish would have been and to then accept what was instead. I couldn’t change my mother and I had to accept who she was, what she was capable of, and to have compassion for the life she had created and the healing work she had and hadn’t done.
It was indeed difficult to show up for her, knowing that my capacity to love her was much larger than what she would allow. To be constantly pushed away instead of embraced. To just want to scoop her up and hug her tight, but instead to be swatted away like an irritation.
That hurts, my friends.
And also, it’s okay. It’s growth, and grow I did.
By the way, that dream scenario above is what I am planning for myself, while simultaneously knowing that death and bodies aren’t entirely controllable, and so I may not get anything even close to that (and I’m at peace with that). But I am preparing for the best death I can possibly create, while embracing each day as my potential last.
The Practical Bits
To prepare for my mother’s impending death, I took the time to contemplate what I would need from the experience for it to feel whole for me. Once someone enters the death portal, they are pretty checked out from this reality. So what did *I* need to create with my mother so that I felt good about what *I* experienced with her?
I made space for my siblings to contribute to this and for the most part I got crickets from them. So, one day, I decided that I wasn’t going to wait for them to participate any longer and I would focus on this being *my* experience, since I was the one who had a deep love for the ritual and ceremony that can be created around dying and death, and *I* was the one that knew my mom the best and could honor her while merging my own needs with hers. If they wanted to join, great. If not, at least I created something beautiful that fulfilled my needs and left me with no regrets.
I connected with a beautiful woman here in Utah who runs a chapter of the Funeral Consumer Alliance, Joyce (check out their website here — it’s a goldmine of resources). We talked about the legal requirements here in Utah, which thankfully are quite supportive of DIY death care. I wrapped my head around the forms I would need to complete, I traveled 4 hours away with my kind and helpful sister-in-law to go purchase a handmade casket from a beautiful woodworker, and I researched ice packs, cooling techniques, and tools.
I talked with my mom’s hospice nurse (who had become a friend over the months of working together) about my wants and plans. He was supportive, even if he thought I was nuts for wanting to do things in this way. He and I chatted with the assisted living manager about how we could make all my plans happen.
I spent several days uneasy about my mom dying in the facility, as I would need to quickly get a burial transit permit from the local Health Department just to move her body to my home. So I got more and more insistent that I bring her home when she was actively dying (which is tricky to determine, so we did our best to look for the signs).
Here’s everything that I got my head around while I was preparing for her to die (this is what is needed for DIY, as well as what the legal process is where I live):
I printed a copy of the dispositioner form that made it legal for me to act as my own funeral director for my mother’s body, then I filled it out as much as I could before her death.
I researched different cooling methods for her body, considered what part of the house would be the easiest to keep cool, and contemplated what to keep her body in/on.
I watched videos on how to prep the body, how to close their eyes and mouth easily, and what needs to happen immediately after death (much of this I already knew from my death doula training).
I started making phone calls to cemeteries, finding out what their burial requirements were, and then calling the additional companies and professionals to help meet those requirements.
As the cemeteries in Utah mostly all require a cement vault around the body/casket, I called the only local vault company that services southern Utah and discovered that they wouldn’t work with consumers directly — yes, I totally panicked and called Joyce. After a lengthy rant about the monopoly of the funeral industry (which I loved), she told me about a vault company near her (3 hours north) that was willing to sell vaults directly to consumers, so I called them and THEY WERE SO NICE. They gave me a very affordable quote for the vault, their services, and a traveling fee…and the total was far less than you would get through a mortuary. I applaud them for giving the middle finger to the funeral industry, which likely makes a lot of mortuaries mad at them. I’m so here for supporting these people. ☺️
After I got the vault figured out, I immediately went to the cemetery and purchased a grave plot. I intentionally chose an available section near my friend who had just died from breast cancer and had been recently buried. (I wanted my people near each other so I knew they had company and I could visit them both easily.)
Once all my supplies and legal aspects were all in process and ready, I was able to breathe easy and focus on my mom. She was clearly getting worse and about 4 days before she died, she wasn’t making much eye contact anymore (and the eye contact she was making seemed more accidental than intentional).
Death is a Process You Can’t Predict
Over the weekend, I suddenly developed an annoying sinus infection (not surprising with all the stress I’d been dealing with), so I am sad to say that I skipped a day of visiting, hoping it would clear up in time for me to bring her home and care for her. Alas, that is not what happened (the dumb thing stuck around for a whole month).
I communicated with the hospice nurse on Monday that I would like to bring my mom home now, and I cleared out my living room with my kids. On Tuesday morning, the medical supply company showed up with my mom’s hospital bed and set it up in a cleared corner of my living room.
My son and I went to the assisted living facility and gathered up a lot of her things that I thought we might need for immediate care (clothes, briefs, wipes, gloves, pillows, blankets, etc.), then the two of us picked her up out of her recliner and put her in her wheelchair, bundled her up for the cold weather and wheeled her out to my car, then picked her up again and put her in the front seat of my car. She was pretty clearly checked out, and barely even reacted to being moved, whereas in the past she would have cried out in pain.
We drove home, unpacked her bedding, set up the bed, and immediately retrieved her out of the car (wheelchair to the house, then carried the wheelchair up the back door steps). Once we lifted her into her bed and I tucked her in, we then unpacked the rest of the car and I set up her supplies nearby.
I settled in, thinking that I would have a few days with her in this state. I turned on some meditative nature music so that her space would be as relaxing as possible. I tried to give her some water, then quickly realized she was past the point of drinking anymore as she immediately started choking on it. That made me understand we were farther along than I had anticipated. So I then stuck with moistening her mouth with the sponge-on-a-stick that the hospice team had provided.
I kept her clean (such an ordeal to roll someone around to change their briefs when they are so checked out and unable to help, and you’re trying really hard not to hurt or scare them). I rubbed my homemade tallow balm on her face and around her mouth, as all the intense mouth breathing was causing her lips to dry out and start to peel off.
I took her temperature and adjusted blankets accordingly. I rubbed her feet, as I’m sure they were tingly and uncomfortable from all the laying around she’d been doing for weeks. I brought out my pulse oximeter and monitored her pulse and oxygen saturation — still normal at this point!
I watched for signs and paid attention to her ability to hear and see me (it wasn’t very strong, if at all).
Once it was bedtime for me, I decided to sleep in my own bed instead of on the couch, as I assumed we still had 2-3 days left of this. I woke up almost every hour of the night though, and ran into the living room to check on her. I adjusted her blankets, adding one when it felt cold and removing one when she seemed overheated. I kept the gentle nature sounds playing all night to help her nervous system relax as much as it could.
I checked her pulse and oxygen saturation early in the morning, and her pulse was very high (148 bpm) and her O2 saturation had dropped down into the low 80s. I gave her the last dose of her liquid narcotic pain medication, as a high pulse can indicate that they are experiencing a lot of pain.
Her pulse did come down shortly after, and then her O2 saturation did as well (something I had been waiting for, as it’s a clear sign that death isn’t far off).
I asked my daughter to help me roll her so I could change her brief again, which was clearly even harder on my mom than the night before. She didn’t even seem to register what was happening, except for scrunching her eyebrows which told me it hurt or at least was bothersome.
I got her all clean and tucked back in, then sat down waiting…
I talked to her a lot throughout all of this. Kissing her. Whispering I love you. Saying sorry when I had to disturb her. Telling her everything I was doing, and just generally talking to her.
About an hour before she died, my sister came over and then her daughter came shortly after that. I allowed them space and time with my mom, as I’d had a lot already. My mom’s good friend and neighbor stopped by to say goodbye.
As the morning had progressed, my mom’s breathing had changed a lot. It had gone from heavy mouth breathing with typical Cheyne-Stokes type of breathing pauses, to more breaks in breathing and new moaning-ish sounds that accompanied the breaths.
It was quite obvious that she was near the end. The pulse oximeter started showing a huge decline in her oxygen saturation rate, and the percentage kept jumping down by 10% every hour or so. Until….it hit about 48% saturation, and then the machine started flatlining and couldn’t pick up a pulse or anything at all. I then switched to feeling her pulse with my fingers on her wrist. And there it was…like a little fluttering butterfly, quiet and gentle.
I listened to her heart with a stethoscope and couldn’t hear anything at all, though of course it was still beating lightly. The only thing I could hear through her chest was her laborious breaths.
I set down my tools, kept my fingers on her wrist so I could feel her body’s beautiful attempts at life, and stroked her hair and kissed her.
She at last took her final rhythmic breath, followed by a couple other random gasps (that are triggered by reflexes). And then she lay there very still, no more butterfly flutters. Just quiet, quiet.
There were phone calls with siblings and adrenaline-fueled chatting (death is very much like birth, in that it produces a lot of adrenaline in our bodies). The hospice CNA who had been giving my mom showers texted to see if I wanted help with post-mortem care, and I said yes, please (my mom had loved her and so did I, so it felt right). I had been keeping the hospice nurse up-to-date with pulse and O2 stats, then let him know she was gone. He came over a few minutes later.
The hospice CNA had some great bed bath supplies, so all of us jumped in to wash my mom’s body. I then rubbed tallow balm all over her skin, willing my brain to remember exactly how soft her skin felt (and linking it to my memories of her skin as a tiny one). We dressed her in a fresh brief to catch any leakage from the body, fresh garments (LDS underwear with religious significance), and then her LDS temple dress.
Next came the challenge of closing her jaw. It seems like it would be easy, but it really wasn’t. My mother had been mouth breathing so heavily for so long that her jaw muscles were tight and wouldn’t budge. We got her dentures in her mouth to give it better form (shout out to my daughter for quickly driving over to the assisted living place to grab them, as I had forgotten!). Then we set her up in bed with her head raised just a bit. We tried various tricks that normally work for dead bodies — putting a rolled up towel under her chin, then padded with a heavy pillow. That didn’t work.
Then I held up a scarf I had been trying to wrap around her head to pull the jaw shut earlier, and the hospice nurse immediately said, “Ah, that will work!” He proceeded to tie the scarf to the bedrail on one side, then wrapped it under her chin, pulled it tight, then tied it to the other bedrail. That was exactly what was needed to finally convince the mouth to close (highly recommend this strategy if you find yourself in a similar situation).
The hospice team left, my niece went back to school, and then my sister left.
And then it was just my mom, my daughter, and I. Quiet at last.
I took lots of deep breaths, attempting to stay present in the moment instead of worrying about next steps. But I also knew that there were things I needed to do very soon, as time was ticking.
The Business of Death Can Be Stressful
I had a to-do list for right after death, but one of the first orders of business was to settle on a date for the funeral…not easy with 7 of us siblings who live many different places! Only my sister and I live nearby, so accommodating everyone else and their busy schedules plus travel became a whole thing.
I talked with my death mentors and both women gave me a good pep talk about being strong and reminding everyone that death is not convenient.
And believe me I tried. But ultimately, my siblings and I live in vastly different worlds, and they’ve shaped their lives to where they are so busy that everyone else has to revolve around their schedules.
I had to sit with it all, grieve the old world approach to death and mourning timelines, and concede that it was important for my siblings to attend her funeral. And so I finally said yes to delaying the funeral by nine whole days…
This was a stressful situation, as I had taken on the task of caring for my mom’s body, which requires a constant process of assessing temperature and adding ice packs or removing them. I contemplated doing this for nine days, and when my brother offered to pay for refrigeration at a mortuary I decided to consider the offer.
In the middle of all of this discussion chaos, I panicked about keeping my mom’s body cool enough, and ended up having my daughter help me move her body out to the casket sitting on the back porch so I could start the cooling process with the help of the cold winter air.
I immediately wished I hadn’t done that, and had just left her in her bed. It’s not a legal requirement (in Utah) to start cooling the body until 24 hours after death, and I do wish I had honored that timeline in hindsight. I would have loved to spend more time resting next to her, brushing her hair, and rubbing my cheek on hers. I also would have loved to have shared in a common tradition in many cultures wherein everyone sleeps in the same room as the person who has just died for a night, honoring their soul, holding vigil, and keeping their soul company as they sort out their next steps after death.
Alas, I got overwhelmed and instead started stressing out about the situation I was being put into.
After only 4 hours after death, my daughter and I carried my mom out to her casket, which was a comical experience. Everything you’ve heard about dead weight is absolutely true. By the time we got to the casket, I was seconds away from her slipping out of my hands and very grateful to get her secured in her new resting space without any mishaps.
I then left the house to go to the Health Department with the now fully filled out dispositioner form.
When I got to the Health Department, it was nearly closing time and they were kind to stick around longer to help me out. They were clearly confused by my whole request, but they made some phone calls and figured it out. Originally, I thought that I would need everyone to hurry because I would be burying my mom soon. But then my siblings decided they needed 9 days, so I didn’t need as much expediting as I would have otherwise.
The health department needed the hospice doctor to report my mother’s death so a death certificate could be filled out, which would then allow them to finish the dispositioner form/certificate. So they told me to come back the next day.
I showed up bright and early the next morning, and they still hadn’t gotten the report from the doctor, so I texted the hospice nurse and asked him to bug the doctor. When I came back later in the day, they finally had his report and printed out the forms for me, including the death certificate.
I was then able to go to the cemetery and schedule the burial date with the sexton, which included having him copy the death certificate for her file. I also called the vault company to schedule the date for them to come down with the cement vault and place it in the grave, plus place the cover on it after we had gotten her casket all situated. The cemetery was then responsible for covering everything with dirt.
Funeral Planning and Personal Ceremony
With all of that scheduled, I was able to turn my focus toward planning the funeral itself. Mind you, I was also still focused on caring for my mother’s body at this point. This included switching out ice packs, taking a peek at the outdoor thermometer often, and also insulating everything a lot at night so she wouldn’t freeze.
My brilliant sister-in-law came over to help me set up a more private space for my mother’s casket, which had previously just been sitting on the ground under the carport. She and my kids helped me raise a canvas popup tent that had side panels that zipped shut. We set her on a sturdy table, and set up a bit of an altar with photos and candles. My kids wrapped Christmas lights around the inside of the tent, making it feel special and a bit magical. This allowed me to feel like she was in a sacred space that was private for her and for me.
During this time, one of my brothers drove through with his daughter, and they stopped in to see my mom and what we had set up. My local sister and her daughter stopped by at one point, as well. But generally, this setup was for my mom and I.
It felt like I was getting an aspect of the kind of funeral I would have preferred, but wouldn’t likely experience as it’s not a part of my family’s more mainstream culture. This was my time with my mom to experience the kind of ceremony that was special to me.
For her official funeral, I knew she would want a very traditional Mormon-style funeral, and so this is what I supported and helped to plan. If I didn’t have siblings who had such specific expectations, I likely would have just done a home funeral that was very DIY and much more intimate (while still honoring her religious beliefs). That said, several of them have specific expectations of “what’s done” at a funeral, and so I supported that aspect of the family’s needs. Getting to honor my mother in my body care approach at my own house was my own prayer and quiet ceremony, which was immensely satisfying.
And so we planned a very programmed traditional Mormon funeral. It was to be held at the local church, with the standard program format and formalities. It included plans for a Relief Society dinner with homemade food that’s standard to the LDS funeral culture. We planned to bring many of her homemade items to create a display of her handiwork over her lifetime. I created a photo slideshow of her life, and planned to bring a TV so that everyone could watch it.
It was far more DIY than it would have been if a mortuary was involved, and I enjoyed knowing that I had created that aspect for her and for the family.
On day 4 of caring for my mother’s body, I arranged to take her to a local mortuary who had graciously agreed to let me keep her casket in their large walk-in refrigerator. I had a difficult time saying yes to this option, as I wanted to sink deeply into the ancestral mourning process of being with the body until it was in the ground. And yet, I knew that this whole situation wasn’t entirely conducive to the ancestral way, and I needed to honor my own capacity under the demands my siblings were giving me (and the fact that my nervous system was a wreck after so many months of caring for her).
And so I took her to the fridge for 5 days.
It ended up being an okay experience, and I was grateful they were so chill (pun absolutely intended) about my request, considering I wasn’t using their services in any other way. The funeral director who met us at the fridge was very kind and seemed super intrigued with how I was doing things. I took off the casket cover to show my mom to him (he had to write down what was in the casket other than my mom), and he immediately greeted her with “Hello, Judith”, which made me a bit teary.
My beautiful sister-in-law once again helped me with this by transporting my mom in her casket in the back of her truck. My two kids helped with moving her, and I’ll never forget my son’s surprised face when he helped to wheel my mom’s casket into the fridge and quickly realized that there were other bodies sitting in the open in there, not in caskets. Later in the car, I joked, “Stick with me, kid, and you’ll have all kinds of unusual life experiences…”
Relieved of the responsibility of monitoring temperatures (but also sad that the intensity of having her body nearby was also gone), I threw myself into full funeral planning.
This included being bossy and hosting a Zoom meeting with my siblings so I could get firm answers on everything (songs, prayers, pallbearers, musical numbers, etc.). I was then able to design her funeral program on Canva (it turned out great!).
I also put together the slideshow with photos everyone gave me, and planned out the technology. I planned to have a Zoom session running so that everyone far away could also be part of the funeral.
(I would recommend spending a LOT more time playing with Zoom settings, or figuring out other software options if you’re going to do this — I made a lot of mistakes I would fix, if I could do it again. For example, I would add a professional mic to the laptop so that attendees can hear everything more clearly.)
I delegated some of the responsibilities to my siblings, as I didn’t want to be doing it all (but because I’m much younger, the tech stuff was really only within my own wheelhouse). I gave my sister the job of choosing flowers, which she did a beautiful job of. I asked both of my sisters to take over decorating and such, as they’re both good at that and it’s not my personal interest/strength. I also asked a sister to be the one to orchestrate the whole dinner and food thing (this did end up turning into some sibling drama, as the boys didn’t agree with her choice, and I got really frustrated with the pettiness of the argument and quickly put a stop to it).
LDS culture is focused on men leading meetings, so I had my LDS brothers do the welcoming/talking/closing remarks sorts of things (which was great for me, as I’m more of a behind the scenes kind of girl).
I then wrote my mother’s eulogy, which we planned to read at the funeral. It ended up being 8 or so pages long, and after I had finished writing it one of my sisters added to it (and changed a lot of it, in ways that annoyed me). But it was good overall, and really did my mother’s difficult life justice.
It was interesting to watch my siblings read the eulogy along with me (we took turns) during the funeral program, as I realized that much of what was in there they were “hearing” for the first time in their whole lives. Like, they truly didn’t know their mother, and it was cutting them deeply.
I had truly KNOWN my mother, in ways that no one else on the planet did. My personality allows me to see deeply into people, and I had spent my whole childhood staring deeply into her soul. I knew her inside and out, and she had also often crossed healthy boundaries, using me as her emotional support person beyond what was good for a little kid.
Thankfully, I was born the person that I am, and my resilient nature allowed me to hold her heavy stories without making them my own problem. I learned from them and allowed them to expand my understanding of pain and trauma. I loved her deeply, even beyond her ability to express love back in the same way.
Unconditional love can be a complicated and beautiful thing — unconditional love for ourselves and also for those who try to love us in the short-sighted ways that they can.
Standing with my mother’s body and watching my siblings learn about their mother for the first time was a fascinating experience. She had always told me that she wanted them to truly SEE her and that she hoped they one day would.
By writing her eulogy in the way that I did, I made sure that her wish came true. They finally saw her.
Reflections on the Funeral
These are my personal reflections on American funerals and the general experience of burying someone we love… This is my own opinion, and everyone is entitled to experience funerals in the way that they need to, as it is a personal journey of expressing loss and grief.
I planned and executed a very traditional funeral in the style of the LDS culture for my mother. My LDS siblings ensured that it felt very much like the traditional funeral experience in that culture (I would have made some changes so that it felt more holistic and honoring of my mom’s holistic perspectives). There was a lot of weird secretism around placing her symbolic temple-wear with only the LDS siblings around, and then not allowing anything else to see her body afterward.
I was very grateful that, beforehand, I had opened the casket and given my mom a kiss on the forehead, because that was the very last moment I would have been allowed to say goodbye to her body (I didn’t know it at the time, as I was being rushed out of the room in the process).
The funeral program felt rushed as “we don’t want to inconvenience the ward members who are opening the building for us.” Going to the grave felt superficial, as LDS culture is often jokey and “business as usual” at funerals (a beneficial thing from one perspective as they see death as a natural community event, and a drawback in that they aren’t being truly PRESENT for this death and their deepest emotions — it becomes a going through the motions kind of event).
There was a lot of joking and being silly (which could absolutely just be my own family’s way of dealing with the darkness of burying your mother, but they generally bring this to every event so who knows).
Everything we did felt very programmed and not personal. There wasn’t any creativity around creating a funeral that would honor her as a person or our own personal experiences of her as our mother. It felt very templated. I know she wouldn’t have minded and this was what she had hoped for, so I didn’t push my own perspective onto this odd group experience.
But, I would never ever want a funeral like that for myself or my own children.
There are some incredibly beautiful ideas out there for how to create a funeral that feels slow, intentional, present, and truly ceremonial for all who attend.
SLOW.
Intimate.
Sacred.
Honoring of the intense feelings that come with death.
I am in no way picking on this particular religious culture, as I think it’s probably common in many cultures where there is a templated way to “do” death. This is my personal experience, and I’m sure lots of people from all walks of life can relate.
We CAN do funerals differently, especially for ourselves. Planning out our own funerals is a beautiful exercise in death acceptance, and also allows us to have these conversations with our families. It’s healthy.
There are so many lovely ideas out there for how to create a meaningful, intimate, and connective funeral. I highly recommend Sarah Kerr’s website for more info and many thoughts around how to do funerals better.
Your own funeral or the funeral you plan for a loved one doesn’t have to look anything like the ones you’ve been to. You CAN create anything you want to that honors the experience of loving that person and grieving them in a whole-body, whole-soul sort of way as a community.
Funerals can be a beautiful expression of love and grief, and they don’t need to cost much at all. They can be entirely homemade, held at home, and they can last days if that’s what would work for your community. Shared grief is a lovely and very human thing. It can be transformative.
It doesn’t have to be cookie-cutter or cold or impersonal. It can be as alive and vibrant as the person was in life.
Integrating a Death
How does one sit with someone dying, care for their body, watch their body get lowered into the ground, and then process this whole experience?
Slowly.
One moment at a time.
Naming the feelings as they come, being curious about them, and allowing them to be.
I went back to my mother’s grave the next day, with the peace and quiet of being there alone. I sat with her and recognized the bizarre feeling of wanting to dig her up. Of how strange and wrong it felt for her to no longer be under my care and to instead just be in the dirt. I didn’t like it.
So I sat with it. I allowed that feeling and also allowed the discomfort.
I imagined my mother under all that dirt. I saw her hands in my mind. Her dress. Her feet. I felt her cold hard body under my hands. I touched her hair. I stroked her still-so-soft cheeks. I recoiled at her odd mouth pulled tight over her dentures in such a bizarre looking way. I kissed her forehead.
And I did this over and over again in my mind, every time I felt the urge to go dig her up.
It’s very strange to know the intimate details of how a person looks when you put them into a grave. To have been the person to make them look like that. To have placed their hands like that. To have dressed them and brushed their hair.
For all the other graves, it’s just a vague sense of “a dead person is under there.” But for my mom, I know exactly what is under there. And it’s also my mother, which makes it deeply personal.
Most bizarre experience of my life.
In the months since her death, I’ve scrolled through the photos and videos I have of her. I’ve shed a few tears, but mostly felt at peace.
I’ve had some of the strangest dreams of her, even as recently as a couple of nights ago. She pops up in my dreams as someone I know is dead, but she’s obstinately unwilling to stay dead and instead taunts me with her feisty antics. The other night I was planning out how to house her now that she was undead and suddenly back to her non-dementia self. Other nights, her body is clearly still dead, but she’s insisting on still sticking around to be her demanding self.
These dreams are never scary or uncomfortable. They just make me laugh, because they absolutely fit her personality. Even in death, she’s demanding to live forever.
My daughter says that I’m probably still processing the bizarreness of how I was intensely caring for her, and then suddenly it was over. And she’s probably right.
It’s strange when someone who has been your near-24/7 responsibility suddenly just dies and everything is over. Your mind is still worried about them, but there is nothing left to actually worry about. It’s an odd sort of quiet.
Even 4 months later, my mind is trying to puzzle out where my mother went and stress about how she needs to be cared for. And I imagine this will continue for a while, as my body and nervous system slowly catches up with my neocortex-knowing.
Death is funny like that. A constant companion. A friend. A naughty, taunting child. A gentle breeze blowing through after a wild storm.
How You Can Create Your Own Family Death Experience
I’m very pleased to see that DIY death is on the rise, and that families are once again taking back the responsibility of caring for their own.
Death is a deeply human experience. It’s part of our needs as humans to get hands on and to see death as a tangible experience. When we relegate it to professionals and keep it as an abstract idea, our mental health can suffer tremendously. We also end up with insane industries formed around the fear of death and dying (*ahem* plastic surgery and the obsession with staying youthful forever). We become vulnerable and gullible to ideas that “prevent death” or postpone death, while sacrificing quality of life and meaning.
Death is important and we deserve the right to experience it on our own terms and in an intimate way with our people.
We also deserve to experience our own deaths in the most meaningful way that we can. This includes accepting that some deaths will absolutely not be on our terms, and that can be traumatizing and hard. But by facing death, we are far more prepared to deal with the stresses around unexpected deaths than if we avoided it entirely.
Now, not every single state in the US or other countries allow for family-centered deathcare. Find out what your laws are and what you are allowed to do, then make adjustments as needed. Work on changing the laws where you live, as most of them are based on taboos and not science at all (the vast majority of dead bodies are not remotely dangerous or gross). And then just do what you can. Don’t opt out of participating.
The funeral industry has also taken advantage of the fear of death, putting laws into place that benefit their bottom line and take away your rights as a sovereign human being. Educate yourself and then change that as much as you can (even if that just means by doing your own family’s deaths in a sovereign way).
There are many amazing organizations who are super grassroots and are working on making family deathcare a reality where they live. You can be part of that movement too.
Understanding death, exploring the laws and resources where you live, and contemplating how you might approach things is a very empowering experience and allows you to know how to face it when it arrives.
You honestly have a ton of rights and there are likely plenty of aspects of the body care and disposition process that you can be involved with, even if your state is more restrictive. Find out what those are and do it — it’s one of the most meaningful experiences you’ll have as a human being.
Even with the stress of navigating this process with my mother, I would 100% do it all over again. I hope that these details will support others in having a better understanding of how it all works so they don’t have to trial and error as much as I did. Honestly, I would never participate in the death industry in a mainstream way, unless it was the only or best option for a particular situation. I would always DIY this experience, as it is so much more meaningful and viscerally satisfying. It’s walking through grief with our hands, our senses, and our whole beings.
I highly, highly recommend sitting with the dying and the dead at least once in your life, as it will truly change your whole relationship with life at a deep, deep level.
To assist you in your contemplation, I’ve put together a list of resources for you to explore.
Sending you grace and strength in your journey of developing a healing relationship with death.
Resources:
BOOKS
Death Nesting: The Heart-Centered Practices of a Death Doula
The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief
Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death
Finding Peace at the End of Life: A Death Doula's Guide for Families and Caregivers
Cultivating the Doula Heart: Essentials of Compassionate Care
The Art of Dying Well: A Practical Guide to a Good End of Life
A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
Reimagining Death: Stories and Practical Wisdom for Home Funerals and Green Burials
Bearing the Unbearable: Love, Loss, and the Heartbreaking Path of Grief
Grave Matters: A Journey Through the Modern Funeral Industry to a Natural Way of Burial
Greening Death: Reclaiming Burial Practices and Restoring Our Tie to the Earth
From Here to Eternity: Traveling the World to Find the Good Death
The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter
What Do I Say?: Talking and Praying with Someone Who Is Dying
Sacred Dying: Creating Rituals for Embracing the End of Life
CHILDREN’S BOOKS
ORGANIZATIONS
RESOURCES FOR CAREGIVERS
GRIEF SUPPORT
AUTHORS, EDUCATORS, & ACTIVISTS/ADVOCATES
END-OF-LIFE PLANNING
HEALTHY DEATH CONVERSATIONS & TOOLS
ONLINE EDUCATION
Village Deathcare Citizen Course (this is the death doula training I did and loved – Anne-Marie is an amazing human being)
DOCUMENTARIES
UTAH RESOURCES
File a Death Record in Utah (including info + form for being the dispositioner/bypassing the mortuary)
CASKETS
Robert Alexander’s handmade caskets in Farr West, UT (This is the casket I bought for my mother, and it was beautifully made, very affordable, and the maker is a really fun guy to chat with.)
A note about finding caskets DIY-style:
There are a LOT of amazing makers from all walks of life creating stunning, handmade caskets these days. You can find them made from a lot of different materials: pine and other types of wood, woven willow, and other natural materials. You can even buy cardboard caskets that decompose quickly and make for a meaningful art project with the grandchildren before or during the funeral. Additionally, depending on where you plan to be buried, you can simply have your body wrapped in a shroud — a long piece of gauzy fabric that can be wrapped around and around (some people even make/embroider/decorate their own).
You can do some quick Google searches to find out who is making beautiful caskets near you or to have something shipped to you. Reach out to your local funeral alliance or Death Cafe for recommendations, or if you are lucky enough to have cool friends who know about this stuff, ask for resources.
URNS
You can turn just about anything into an urn. I saw recently on social media that someone had used their grandpa’s favorite guitar to put his ashes into, and they then buried the guitar. You could ask your favorite potter to make you an urn, buy a handmade small basket that closes, or create something simple that you decorate yourself. Your imagination is the limit with creating a beautiful urn that honors your loved one (or you), is functional, and honors your own process and grief.
ALTERNATIVES TO BURIAL
Cremation is the most mainstream option, though people do bury cremated remains sometimes.
You can donate your body to a medical school or other scientific organization (do your research carefully though, as some of these organizations use bodies for things you might not appreciate or want to support).
Aquamation is another intriguing option in some areas that is far more environmentally friendly than cremation.
One very cool new option that is available in a few places is human composting, which is much cleaner and lovelier than it sounds (in just one month your body becomes dirt, allowing it to nourish and fertilize a tree, garden, or forest).
One final option in the US is DIY open-air cremation, however this is only available in a few areas and limited to the residents of that area (there are a lot of death taboos in our society, and this limits options when people are afraid). Here’s one open-air cremation site in Colorado as an example.
GREEN BURIAL
Green burial is not available everywhere, and in fact, here in Utah our options are super limited. The vast majority of cemeteries in Utah require a cement vault around the dead body, as it is most efficient for them and their trucks/machines to have a stable platform to drive over. Additionally, vaults are (unscientifically) seen as protecting the public health and underground water systems from the body’s decomposition process — this isn’t an actual issue, but a reason given based on our modern fear of dead bodies.
Green burial simply means using the least synthetic materials and reducing the number of items that need to decompose in the grave, allowing the body to return to the earth in the quickest and most environmentally-friendly way possible. It means avoiding embalming, as the fluid used in embalming is incredibly toxic for the earth, microbes, plants, and critters around the dead body (it’s also incredibly toxic for living humans too).
It means avoiding unnatural caskets that “seal” in the body, delaying decomposition, limiting access to the microbes needed to break down the body, etc.
Green burial means a lot of things to a lot of people, but generally it means returning your body to the earth in the most gentle manner possible, while having the lightest footprint on the earth in the process.
One option you can consider in states where this is limited: often these states will allow you to bury a body on a rural piece of property. If you have some family property that is available for use away from town, you can apply for a permit to simply dig a hole on your land and bury the body — free, as green as it gets, and extremely meaningful.
Wow, all I can say is well said. And that Joyce Mitchell, what a resource she is. Thanks for sharing.
This was lovely, raw and so informative. I enjoyed reading and understanding your experience so much. Thank you for sharing.