Imagine that you or a loved one has just received a diagnosis of a terminal condition, or have been referred to hospice. How will you feel? What thoughts are racing through your head? What do you do next?
Very likely, you may initially feel frozen in shock. You may be in “information overload”. You may find it difficult to make clear decisions. These are all absolutely natural reactions to hearing a very difficult truth.
You may be dreading the painful phone calls, the concerned faces of neighbors and workmates, the church friends, all wanting to help. That too may be overwhelming. It is perfectly okay to say that you need time and space to process all of this. “No, thank you,” is a complete sentence!
You and your medical team may have decided on a course of treatment, or to withdraw treatment. These too are hard conversations to have, and then to explain to family and others looking at the situation from the outside.
Perhaps you or your loved one is one of the 80% of seniors who state that they wish to live their last days in the comfort and familiarity of home (2021 AARP Survey). Honoring that wish is a great gift, but can be overwhelming in its own way for the caregivers.
During this time of processing difficult information and coming to terms with what the “new normal” will be, it may be helpful to have someone alongside who can answer questions, who can help you and your family anticipate and plan for what is ahead – someone who can be a companion and support to you and to your caregivers within the family.
As a non-medical member of the care team, an End of Life Doula (EOLD) has something the medical team often does not – the luxury of time. Medical and hospice staff are overscheduled and burdened with many administrative tasks, meaning that their time with you is often very brief: a quick check-in, the recording of stats and checking of meds, and then they may need to leave. Medical visits in this stage of care might be only one hour per week, leaving a significant gap of care for an overwhelming time of life.
An EOLD can bridge that gap, supporting the family and loved one, and extending the circle of care around the person who is dying, as well as the primary caregivers. And at a time when choices and control have been taken away, an EOLD can suggest ways to retain dignity, comfort, and control over the stages to come.
Here are some of the services an EOLD can provide to the family and their loved one:
- Legacy work – recording memories, transcribing stories, or creating artwork so that the family retains something tangible and meaningful
- Planning support structures around the family – working directly with the family’s networks to ensure that meals, tasks, cleaning, and other burdens are taken care of, so that the caregivers can focus on their loved one.
- Companionship and respite care – sitting in for the caregivers so that they can take care of themselves on a regular basis.
- Bucket list work – are there experiences that are still possible, or to create within the confines of the home?
- Developing a visitation plan that takes into account the physical and emotional needs of the loved one and does not place additional burden on the caregivers. Are there specific people who should not be allowed to visit? Are there people whose presence is essential?
- Setting the environment for the loved one, especially in the final stages. Do you want to be in the middle of the action, or should your space be quiet and peaceful? Do you want music, or prefer silence? Bright or dim lighting? Whole family gathered around you, or just one or two at a time? Who do you wish to take care of your private needs?
Clearly, some of these possibilities are more available to the family earlier in the process. For example, if your loved one is already at the stage of sleeping more and more, then working on a bucket list is probably not what is needed. But there are still opportunities to shape a peaceful, meaningful end of life for yourself or your loved one. Let us help.
Contact us for a free and confidential 30-minute consultation with an End of Life Doula.