How Caregivers Can Manage the Space Where Someone Dies
Honoring Sacredness
When someone you’re helping to care for is reaching the end of their life, or is in a state that will otherwise not improve, focus can turn toward comfort, safety, and quality instead of increasing productivity, encouraging improvement, and forward-thinking wishes. It’s at this point that instead of thinking, “someday I’ll dust that” or “maybe next week we can put that photo album together”, we begin understanding that it’s our duty to work swiftly and with overflowing respect and compassion for all those involved. This can mean making their hospital room more comfortable, their at-home main space more welcoming and inviting to visitors, or personalizing their space in an assisted living or nursing home environment. There are as many situations and places as there are people.
Honoring the sacredness of this transition can help all those involved have a more meaningful experience. It allows space for emotions to develop, for relationships to grow and change, and for the magic of life to be cherished and remembered mindfully.
My hope is that this post will be a starting point for caregivers and those supporting them to approach this task mindfully. I know that this stage can be overwhelming for many, but having a blueprint like this to refer to can provide a stable foundation for an uncertain time.
Starting the Process
The first piece of advice I’ll share is that the best thing you can do for your loved one is to not try to fit their experience, or yours, into a neat box. It can be messy - the space and the process. Trying to check off a list as if everything will happen in a predictable sequence is a formula for disappointment, stress, and resentment. Meeting your loved one exactly where they are and actually listening to what they prefer, no matter how out of the box it may be, is your best chance for connection and compassion. If you thought your loved one would do best in a cookie-cutter dying experience, you’d send them off for someone else to care for them and visit very infrequently. However, remember this: that’s what happens with some people and it's not wrong or something to be ashamed of. Sometimes, people aren’t prepared. Sometimes, they know themselves well enough that they know they can’t provide the care their loved one needs or be as supportive as they want or as they know their loved one deserves. But I don't think you’re reading this because you want that for yourself or your loved ones. I think you’re here because you want something more. Something more personal, something more passionate, something more sacred. That’s possible with a little awareness, preparedness, and community cooperation.
Helping Yourself Through This
So how can you best prepare yourself for supporting someone in this stage?
I firmly believe you need to be aware of what happens to a body as it is approaching death. At first, honestly, it can feel revolting to know these things. It can feel wrong to read about, learn about, and talk about the body mechanics of dying. However, it happens to everyone. It will happen to everyone you love. And it’s natural and not necessarily an emergency. Knowing what happens in the months, weeks, days, and hours leading up to death can have a calming effect for when you actually experience it. Learn to notice patterns and be willing to confidently address changes not only with the rest of your care team, but also with your loved one experiencing illness. Chances are, they know the state of their own health, but denial can be a very strong force to help someone live out each day.
Here are two resources for learning more about what happens as a body approaches death:
There are plenty more available and don’t be afraid to ask medical professionals on the care team! Start with this and make sure you have a community of people you can talk to, whose opinions you trust. You need to be able to unload about your worries, frustrations, and observations without judgement to someone who is also willing to be curious and pay attention to your patterns. This could be your religious leader or teacher, your elders, your therapist, your friends, or any number of people. When they suggest you do something to care for yourself, or offer to support you in myriad ways, it’s then your job to trust them and, for the most part, do what they say.
Accept the casserole. Go out to dinner. Let them come over and clean your kitchen and do your laundry. Respond when they send you messages and check in. You don’t become a hero by isolating yourself and becoming “strong”. Be a wibbly-wobbly, vulnerable, soft and squishy, fully-feeling human and you’ll find you’re able to bend and tuck and roll and adjust better to what comes up during these times.
Helping Your Loved One Who Is Dying
When you notice the signs of decline, or decide with their care team that it’s time to shift care a bit, do your best to give the floor to your loved one as much as possible. Learn how to ask open-ended questions and honor whatever comes up for them when you’re asking their preference for all kinds of things. Also keep in mind that too many choices can feel overwhelming for some people or in certain situations. It’s in your best interest to learn advanced communication skills like active listening and withholding judgement so you can start conversations presenting the scope of what you’ll be discussing, and ask their preference - have they thought about these things before and have their own questions and ideas? Do they want a few suggestions to choose from with the possibility that they might have their own ideas, too? Or would they prefer to choose from a menu of things prepared by or informed by expert opinions? All of these options are valid.
Here are some examples:
Helping Their Loved Ones
You as a caregiver are likely not the only stakeholder in the dying person’s life. It’s your job to investigate early on who else might be interested in how things are going, and be in regular communication with them at the preference of the person you are serving. It’s not your job to intervene with your opinion of what should be done or who should be doing what. It’s my opinion that an enthusiastic YES is the only answer that’s acceptable when it comes to being on someone’s care team. There are many different roles with different levels of participation and responsibility. Remember that resentment is easy to grow and hard to kick. It can be natural in the process and not something to be ashamed of, but something to be aware of and not taken lightly.
Ask your care team candidates: if they can’t be there as often as they like, how else may they want to contribute? Do they want to provide regularly scheduled meals for those present? Provide flowers, blankets, collect memories from others, gather letters and keepsakes from scattered loved ones to share with the dying person? Let them share what they think they want to do, and collaborate with the rest of the team on what's needed and helpful. These can all be incredibly meaningful contributions that don’t require being present for significant periods of time.
Preparing The Space
One of the first things I look for when assessing the space of someone who is dealing with chronic illness, terminal diagnosis, or imminent death is: How practically safe is the area? How are the electrical cords? What about other fire hazards? Is there space for their walker or wheelchair to move around freely? How about rugs as tripping hazards or animals, large or small? Are there breakable items or sharp corners where a person might grab for support? Are all the doors and knobs functional so no one gets locked in anywhere? Old appliances can also be a danger, especially smaller items that can be older. Check out what’s in their drawers and spend repeated time with them at different times of day in order to understand their patterns and behavior to look for safety hazards. If their memory is deteriorating, consider what around-the-clock care looks like for them, whether that’s shifts of loved ones staying in place, or caregivers professional or otherwise visiting on a regular basis? Consider medication administration who manages and records it. Many people prefer to maintain autonomy for as long as possible, which can complicate things if no one is paying attention to signs of memory loss, however small. There’s no way for this to cover everything, and everyone’s situation is unique. Please use this as a starting point and inspiration.
Next, focus on comfort and the sensory experience. If a home is old and hasn’t received a deep cleaning recently, it may be worth it to invest in that or put in the time if you have it. Remove dust that can make breathing more difficult. Wipe down walls and clean upholstery that can hold old smells. Sanitize surfaces, thinking about nooks and crannies where things might spill. Manage pests and check for water damage under sinks. You know the drill. These things can go neglected even in the homes of young, active, and healthy people. Managing this for your loved one can bring a refreshed and attentive atmosphere into the home.
Update their pictures on the walls, make photo albums for them to look through, and gather letters from loved ones for them to read. This can aid in their own life-review processes and help them understand their own story better, allowing them to share with you more freely.
Create playlists/mix CDs/tapes of their favorite songs and make it easily accessible for them. Get recordings of their favorite or new books that they’re interested in. Gather books or other media they may want to engage if they are able to do so.
Lit candles may not always be the safest option especially if they’re home alone or if they use supplemental oxygen. Electrical or battery powered candles can provide a calming atmosphere without the hazard and provide a place of movement for eyes to land during contemplative times. Essential oils in diffusers or on special pillows or even in lotions as appropriate may be a great source of comfort and a wonderful addition to different routines throughout the day.
Ask what they want to eat and drink. And make sure what you provide meets their brief! Often there are hard candies that are safe to let melt in the mouth. And oftentimes near end-of-life or during a difficult or prolonged illness, appetite may wax and wane and they may not be able to eat or drink as they’d like.
Get soft items like pillows and blankets they like. Cozy socks, a warm robe, safe fidget toys and the like may be a real interest to them as they likely have a lot of time alone. If they have something to keep their hands busy in this way, this can lessen anxiety and prevent dysfunctional behaviors such as skin picking, scratching at IVs, and so on.
Seeing natural light is really important for quality of life.
If getting physically outside to take in the changing weather and seasons isn't safe or reasonable, then a window to see a tree or any green space or the sky is preferred. Being connected to the world outside their room or home, especially if they are confined, helps people to understand the passage of time and to feel less lonely and more connected.
If the person you’re caring for has a preference for the atmosphere in their room, you can help establish that boundary. Create a place with a bench or a couple of chairs for people to sit before entering the home or entering the room. If that’s not possible, place a special mat in front of the door or a poster with a message near the door. Add a scent mist they can spray on themselves before entering, or a short phrase or passage to read to set the tone. You can also ask that people take off their shoes, remove hats, or set down burdens and invite visitors to be fully present. Ask preferences about pets and children, and idle chatter in the room. There’s a lot to think about, but making it clear is kind for both the patient and the visitors. Clear boundaries allow people to interact with confidence especially if they’re overwhelmed with emotion or other decisions.
Making it functional means making sure all the materials you need are reasonably in reach: Tissues, a change of clothes, communication devices and chargers, medical supplies, etc. Take the time to organize these items in a functional way and everyone who enters the room will be grateful.
Tips for Making the Space Work for Assorted Service Providers
Keep a notebook or tablet with a notes app or otherwise some kind of accessible-to-everyone spreadsheet to record things every day to make reporting to service providers seamless. Keep track of meals, meds, activities, needs and wants, as well as hygiene practices. This information can be helpful for service providers so they know exactly what their patient or client is experiencing and sometimes notice patterns it takes an expert to understand. Keep extra pencils, pens, sharpies, masking tape, safety pins, and paper nearby.
Reserving some functional bedside floorspace is important not just for the patient or client’s safety, but also for cleanliness and ease of access for service providers.
Make sure there is open tablespace for whatever needs arise. Invest in or borrow a couple of TV tray type tables that can be set up whenever a service provider attends the patient or client. This can give them space to place their belongings that’s not the floor and gives them peace of mind for sterile setups that don't interfere with the normal setup of the room. The same goes for folding chairs.
Many home spaces are not built with bright lights in mind but it can be important for proper care. Make sure to have lanterns or access to lamps and functioning blinds to let in the most light when needed. The same goes for clinical or assisted living settings - the bright lights can be too harsh for all of the time so see about safe lamps and soft lighting options to make the space more comfortable.
Setting up an air purifier or making sure the windows can be opened helps with ventilation and sanitation. Stale air can be especially noticeable in settings where people are always present.
Transitioning The Space After Death Has Occurred
I remember feeling a deep sense of natural responsibility being the first family member to enter the room where my grandmother took her last breath, waiting for my mother to arrive, waiting for the funeral home to retrieve her from her rehabilitation therapy/hospice room in an assisted living facility. My body ached for something to do, so I remember spending time collecting her things and lovingly arranging them to take home. And then came the task of what to do with it all. I suggest asking the dying person before it occurs - how do they want to be remembered and honored here? If that can’t happen, when you find yourself in this situation, you can simply take the time to pause. This is a major transition point. You’re allowed to take it in. It will help with your grieving. It will help your brain and body understand that a change has occurred.
From there, cleanse in whatever tradition feels natural for you. Smoke cleansing? Singing? Praying? Working alone, or together with others? Will you invite service providers in for this part? Whose job will it be or who will be the leader or director? Consider hiring a professional to do a complete clean out to pull the linens and reset the space according to your plan to make it functional again.
I can’t emphasize enough how important it is for everyone to plan who gets what of their possessions ahead of time, but if that process has not occurred already, now isn’t the time to trouble yourself with it. Until after your loved one’s body disposition is complete, I suggest the task be to set aside and preserve respectfully so that when the time does come to sort out their belongings, you’re encountering a well-organized space, not a jumbled mess.
Many hospice organizations or community foundations can typically assist with retrieving medical equipment and body care materials that are able to be donated and distributed to those in need. If you can, pay it forward with those items.
Looking Forward and Moving into Grieving, Mourning, and The Rest of Your Life
Now that your loved one has departed this life, it then becomes your job to truly care for yourself and your loved ones still here with you. Embrace opportunities to share your stories. Laugh and cry and be honest. Accept help. Attend grief groups. Read and learn and share your experiences through this. I think the best way to integrate what you’ve learned through times like this is to share your wisdom with others. Take time to reflect, allow yourself to float along the rivers of grief, and stop along the way to share what you’ve discovered. Your loved ones want to support you and they want to learn from you. It can feel awkward to open up at first, but sharing with confidence and humility can be the spark that helps someone else have a chance at a mindful experience for themselves in the future.
Not everyone who experiences grief needs to become a death care educator, but sharing about this time, a time that is required for everyone who lives, is an important part of how I keep my own grief moving and find meaning in my experiences.