Finding out you have a terminal illness is scary, and brings the inevitable questions about what will happen to us before, during, and after we die. But other worries arise as well that don’t concern us – they have more to do with our loved ones.
“How will my spouse cope, how will my children cope, and will my family stick together or fall apart after I die?”
“It’s just my wife and me – how will she deal with this on her own without help or support?”
“What if I decide to end treatment and start hospice care – will they think I’m giving up on them?”
“My children are so young – will they remember me?”
“My adult children don’t get along – how will I be able to have them by my side at the end if they just fight all the time?”
- Death doulas are there to support you at the end-of-life, yes, but they are also there to support your family members and loved ones. While doulas are not therapists in this role, they do understand how the illness and death of a family member can disrupt the whole system. Doulas are trained listeners who are often adept at getting at what our death-related fears are, and finding ways to help alleviate and calm those fears. They are able to sit with family members, together or separately, to address concerns and find appropriate external support if needed, such as individual or family counseling, or grief therapy. Death doulas can also work with and support the family after death as well, even helping them to develop rituals that they can use for years to come that will keep your memories alive for them.
- For many people who do not have grown children or extended family members to help out, it can be worrisome to think that our illness might be a burden to a spouse or partner to deal with alone. Doulas not only offer direct support themselves, but can also coordinate friends, hospice workers and volunteers, and others who can serve as caregivers to provide a continuum of care and bedside support for your loved one. They are skilled at noting where gaps might occur, and finding ways to ensure those gaps are filled.
- This is a tough one. It is not uncommon for the person undergoing treatment when their illness, often cancer in this case, is declared incurable to decide that they do not want to continue with chemo, radiation, or clinical trials. These treatments can be exhausting, difficult, and in some cases do little to improve either symptoms or longevity. Also, by this time they have often already endured many rounds of treatment for a number of years, and they are tired. The decision to begin hospice care can actually be a relief to patients who are now ready to be free of the myriad of appointments, tests, scans, and harsh side effects of chemo. The idea of having some peace at home, time to enjoy the life they have left doing what they want to do,
with whomever they want to spend time can be part of a very meaningful end-of-life plan. This may be a welcome relief to the patient, but it is often hard for the family to accept. It can feel as though their loved one is ‘giving up the fight.’ While we want our loved ones to be around for as long as possible, it is easy to forget that ‘staying in the fight’ also means you can get beaten up pretty badly.
Death doulas can work with family members to understand that this is your decision, and that it has nothing to do with how much you love them, but more to do with wanting what time you have left to be meaningful. Doulas can even help facilitate conversations within the family to ensure as much as possible that everyone not only understands and accepts this decision, but can get behind it and support it. Hospice providers are very effective at helping to manage pain and discomfort as well as anxiety with medication, and doulas provide excellent emotional care and support alongside that, creating a very peaceful and comfortable environment. - It is normal to wonder about whether, and how, our loved ones will remember us after we die. Doulas can help you to create legacy projects that can be give your loved ones a physical reminder of who you are and what you value. These might include letters, ethical wills, mementos from your own possessions along with personalized messages, recipe collections, and more – there are no limits or rules to this, it’s all about you.
- Doulas offer a variety of skills and abilities to help shepherd you along this journey, and a skilled doula can also offer support for even very difficult family situations. Doulas are not therapists, but they can help even conflicted family members to focus on what is most important in this moment – you. Doulas can sit with your family members individually or as a group, with or without your presence and educate, guide, and refocus your loved ones as much as possible to be able to be present for you in the ways you most need. Obviously, there are times when the patterns and hurts may be too entrenched, but doulas can also help to make referrals for professional help when needed.
