How End-of-Life Doulas Facilitate Joy and Healing for Alzheimer’s Patients and Caregivers
Submitted by Beth Rush
Founder and Managing Editor
Body+Mind Magazine
End-of-Life Doulas Can Support Families Way Before Death’s Doors Arrives
Your loved one deserves the best care when they live with dementia or Alzheimer’s disease or other dementias. Many families find assistance for their loved ones when they can’t be there personally, but you might not think about processing the next few months or years until it’s too late. Death doulas can help with that.
Learn more about the role of end-of-life doulas to see if connecting with one could help your family. If you learn to relive your joys, talk about your worries and reflect together, everyone will experience greater peace of mind as your loved one’s disease progresses.
What Is an End-of-Life Doula?
An end-of-life doula is someone who provides non-medical support to someone near the end of their life and their loved ones. That support might include emotional, social, spiritual or practical help through informed companionship and external resources.
What Do They Do?
Death doulas provide the same kind of work but approach their services with unique perspectives. It depends on what support you and your loved one need.
The role of end-of-life doulas is primarily to be an empathetic guide for a family. Their calm presence makes it easy to start conversations that might otherwise feel too challenging. While some death doulas — also known as end-of-life coaches or death midwives— may focus on spiritual support, others encourage families to process what’s happening so their loved one’s upcoming passing isn’t as traumatic.
Death doulas may even provide physical support. They know they’re helping patients with memory loss conditions that cause disabilities. A disability is anything that prevents someone from living life in conventional ways, like walking to the bathroom or cooking for themselves.
It may take some time to find the best end-of-life doula for your family. It’s best to research those who work in your area, read about how they help people and meet with a few to discuss if they’re a good fit for your loved one’s needs.
Ways Death Doulas Help Alzheimer’s Patients and Caregivers
Death doulas can facilitate joy and healing even in the most painful moments of a family’s life together. Once you learn more about the role of end-of-life doulas, it’s easier to understand how they help both Alzheimer’s patients and their caregivers.
They Facilitate Conversations
Losing someone slowly over months or years is overwhelming. You may have things you want to get off your chest but don’t know how to talk about them with your loved one. They might not also be able to talk about things that they aren’t able to remember.
End-of-life doulas train in techniques like deep active listening. They know how to hear your frustrations, worries and fears while understanding the deeper emotions fueling them. You can also talk with a death doula about any issue regarding your loved one’s passing. They could help you problem-solve complications or just vent about your feelings.
A doula may not be a licensed therapist, but they know how to hear and handle heavy emotions. As you talk about things you might not feel comfortable discussing with other family members, a death doula can show you how to manage your feelings or have important conversations. Ultimately, those conversations heal relationships as much as possible. Grief becomes easier to manage if there’s nothing left unsaid.
They Teach About Grief
Grieving is a personal experience. Everyone processes it differently. You may also have spiritual or religious grief practices that other people don’t share. Death doulas train in those personal grieving processes.
Doulas help people process the dying journey. They can even assist the person with a memory-related condition by talking them through their own perspective on grief if they’re still cognitively present. Some doulas have resources that facilitate creative processing as well, like activity tools that celebrate a person’s life while teaching about death.
People might not think there’s power in discussing sadness, but grief is a much more complicated process than you might realize. Death doulas know how to talk about things like ambiguous loss, which is losing your loved one’s cognitive presence while they’re still physically here. It feels similar to grieving the death of someone, but people may not feel comfortable talking about it because a physical death hasn’t occurred.
Having someone around to help you and your loved one shoulder your grief can make a significant difference in your emotional quality of life.
They Help Families Plan for the Future
When you already feel overwhelmed by daily care for your loved one, it’s challenging to think about the details regarding their passing. After a trained death doula helps relieve some of your emotional and time-related strains, you may feel more open to planning for the future.
End-of-life doulas understand how to listen to a family’s preferred rituals or ceremonies regarding funerals. They can help you create those things as well if you’re unsure what ceremonies would help your family grieve, like vigil planning.
There’s also the issue of advanced care planning for your loved one’s daily needs. As your family member needs greater support over the coming weeks, months or years, do you know which resources are available to help? A death doula can connect you with local organizations for things like finding medical care, transitioning to a care facility or accessing in-home medical support.
The doula may also be present after the loved one passes to help wash and dress them. They can prepare a family’s chosen space for a memorial service and coordinate plans for the remains with grieving loved ones. Having some time to feel your grief is the first step to healing after loss. Death doulas can coordinate specific responsibilities, so you get that opportunity.
They Show People How to Find Meaning
Doulas provide an outside perspective. They invite family members to take a step back and process their grief from multiple angles. Finding meaning in your loved one’s life is a key role of end-of-life doulas.
When you’re ready, they’ll listen to you speak about the legacy of your loved one’s life. Your doula may help brainstorm ways to continue that legacy if that interests you. It’s another way to grieve while accepting a future without your family member. Your grief may not feel as unbearable if you know how you’ll carry that loved one with you long after they pass.
Finding meaning in your family member’s life also creates moments of joy and comfort. You and the people who know your loved one may laugh while reflecting on their life and smile while recalling specific memories. It’s a way to celebrate those relationships and honor them together. You might not feel like that’s even possible without a doula facilitating those initial conversations and encouraging everyone to find comfort in your shared joys.
They Provide Some Caregiver Support
End-of-life doulas may not be medical professionals licensed to administer some types of medications or treatments, but they can opt for caregiver training to support a patient’s daily life. They can help make the patient meals, ensure they take their medications on time and help them in the bathroom.
These services mean you might find a death doula through a local hospice program, but they aren’t medical professionals trained for hospice care. You may need both to help your loved one and your family have the best quality of life.
Self-care is a priority for doulas as well. They might help someone with a memory-related condition brush their teeth, engage in relaxing activities or move outside to enjoy fresh air.
Providing these types of care as a third party is a primary benefit of finding one for your family. They can stay by your loved one’s side while you’re handling caregiver responsibilities like grocery shopping or paying bills for your family member.
Signs You Might Need an End-of-Life Doula
Once you understand the role of end-of-life doulas, you might wonder when people know that it’s time to find one. See if you experience any of the most common signs that a death doula is the best form of support for your family.
You Don’t Know How to Process Your Loved One’s Progressing Condition
You Don’t Know How to Process Your Loved One’s Progressing ConditionTaking care of a family member often takes up a person’s entire day. You likely don’t have much free time for yourself if you’re the sole support for your loved one. That also means you don’t have time to process your emotions, which can make them build over time.
Experts advise that 80% of stress management is self-management, but it’s challenging to take care of yourself when someone else needs your attention all day, every day. Death doulas provide a listening ear while taking some of the responsibilities from your daily care routine. You’ll process your feelings, your loved one’s condition and what your future looks like without compromising your family member’s schedule.
You Feel Alone Planning for Your Family Member’s Passing
Coordinating post-death details is challenging. It may even feel impossible if you’re the only one looking into details like finding a funeral home or navigating the legal steps of managing an estate. Doulas know how to assist family members in finding that information, coordinating details and talking through the complicated feelings that arise during that experience. Feeling less alone makes it easier to find little joys in everyday life with your loved one.
You Deal With Burnout as Your Loved One’s Primary Social Support
It isn’t easy to be someone’s primary source of support. You’re likely their sole caregiver if you don’t have in-home medical care. You’re also your family member’s only chance to socialize if they can’t leave their house and don’t have friends who visit. A death doula doubles as social support for your loved one so you can feel more able to leave them for routine breaks like running errands, going to work or taking care of your immediate family members.
Learn More About the Role of End-of-Life Doulas
The role of end-of-life doulas is complex but rewarding. They help families find peace, experience more joy and heal while going through one of life’s most challenging chapters. Finding one for your loved one could significantly improve your quality of life if you’d benefit from the ways they help those with Alzheimer-related conditions.
Beth Rush
Founder and Managing Editor
Body+Mind Magazine
Beth Rush is the mindfulness editor at Body+Mind. She writes about caring for loved ones with Alzheimer’s disease. She also shares tips for coping with c-PTSD, PCOS, and climate anxiety. Her goal is to encourage readers to live their best lives.
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