Although much is available on the topic of caregiving, the information may be either too narrow (e.g., choosing a nursing home; nutrition and aging) or too broad (addresses every aspect of caregiving from psychosocial issues to financial recommendations). I aim to provide an overview of the practical, day-to-day, hands-on strategies and skills needed to maintain an older or ill individual at home. This information is directed at practitioners and family caregivers who want to reduce the time and effort demands of the caregiver role without compromising safety or quality of care.  

During an emergency or at the end of life, one may face questions about their medical treatment and not be able answer them. One may assume their loved ones know what they would want, but that’s not always true. Research shows that one is more likely to get the care they want if they have conversations about their future medical treatment and put a plan in place. It may also help their loved ones grieve more easily and feel less burden, guilt, and depression.

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Advance care planning involves discussing and preparing for future decisions about one’s medical care if they become seriously ill or unable to communicate their wishes. Having meaningful conversations with loved ones is the most important part of advance care planning. Many people also choose to put their preferences in writing by completing legal documents called advance directives.

A Vigil Plan is a blueprint, a set of ideas and suggestions, created by an individual that outlines what kind of emotional and physical support they’d like to receive in their final days when their energy and the ability to talk is waning. The Vigil Plan follows the person who creates it, whether their last days are spent in a hospice facility, hospital or their own home. By creating one, loved ones can know what is important to that person at the end and improvise solutions if there are limitations where they are located. For example, if a Vigil Plan called for a candle by their bedside, but a hospice or hospital will not allow one, the candle could be replaced by an electric one. Or, if it indicated they didn’t like massage, their family would be aware of that and able to guide their care in their final days. A Vigil Plan is just one aspect of end-of-life planning, but can be an important document to clarify a person’s values, wishes and what brings them joy.

Vigils are often held in remembrance of someone who has died and serves to offer spiritual and religious relief during their passing. Vigil planning is an important component of the end-of-life process. It allows the individual to choose what they want their final time to look like. Care is taken to discuss and document each person’s induvial preferences. Although is important to make sure that the patient’s wishes are being met, it is equally important to make sure the family and loved ones are being supported during this sacred journey. I will encourage self-care (for the family) and work to create a care schedule in an attempt meet everyone’s needs. Examples of things that are considered during a vigil include music choices, fragrances choices, the presence of a beloved animal companion, lighting or the use of candles, what family members and  friends will be in attendance, religious support, and creating a care schedule that allows a sense of presence for the loved one AND emotional respite for the caregivers. It is important at this time to honor any and all wishes of the dying individual.

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A vigil is a powerful way for people to come together as a community to pray for any of a vast number of social causes. There are often guidelines to follow for planning a prayer vigil which can be discussed if that is an area a person wishes to explore. Candlelit vigils are also ften considered when planning and end-f-life vigil. Many times there are guidelines in place to follow when utilizing a candlelit vigil service which can also be explred and further discussed. No vigil is the same. It can be extremely detailed or very broad and vague. No matter what your religious or cultural background, many people find talking in the final days or weeks to be a rich and meaningful experience. Hearing is said to be the last sense to leave people at life’s end, so last words can be very important.

There are many benefits to conversation because it allows for exploration of a life well-lived; it grounds loved ones in experience and life, which is calming and healing; it allows for wisdom to be transferred orally; and it decreases anxiety, pain, and breathing challenges for the person dying.

Celebration of life matters. A memorial service is a commemorative event without the body present. Unlike a funeral, the service can be held weeks or months after the death, allowing the family time to plan and then gather at a convenient time and place. It is typically less expensive and simpler to arrange than a traditional funeral. I assist with the many aspect of planning a memorial service to include:

• Choosing your style-The service can be as informal as a picnic in a park, or as formal as a wedding, with ushers, caterers, flowers and reception line. We will work to decide if the gathering will be small and intimate or wide open to the larger community;

• Deciding on a venue-A memorial service can be celebrated almost anywhere–church, private home, funeral home, hotel, public meeting space, beach, or park—the possibilities are endless. We will work together to choose a place both meaningful and convenient. The idea is to consider such practical matters as cost, availability, number of attendees, and accessibility;

• Choosing the participants-Clergy will likely be involved with any service in a church, temple, synagogue, or mosque—with the program determined by religious practice and protocol. As an alternative to clergy, one could use a “secular celebrant,” easily found by searching online. Or one might designate a family member or friend to lead the service; 

• Finalizing the date-Once you have checked the availability of the venue and participants, you can schedule the service;

• Inviting the guests-You will want to issue invitations as soon as you have settled on the date, time and place. A public announcement in the newspaper or a Facebook posting can reach a large number of people quickly. Individual phone calls, letters and emails are more personal, and a “telephone tree” can save time;

• Arranging the details-This includes Programs, Spoken Words (Eulogies), Music, Photographs and Guestbooks, Flowers, and Refreshments.

I offer a planning session to guide you or the dying person through defining their legacy and how they would like to be remembered. I offer one-on-one support to help plan and review all final plans for your Memorial Service created your way. I offer things like personalized ceremony design which includes in-person or virtual speakers, readings, prayers, venues, keepsakes, décor, florals, and music of your choosing. I assist with creating a personalized photo montage if desired including up to 120 photos. I can assist with creating a Memorial Webpage which is usually designed to be an invitation to your celebration and includes your photo, your obituary information, a guest book, and a donation campaign. I will create a personalized program which will be sent to you, your next of kin, family and friends, and your financial advisor (if requested). Your program will be held in confidence until requested or needed.

 I also aim to serve those in need of burial and cremation services -- both in advance and at-need. I am committed to helping arrange services, preserve legacies and honor the life stories of your beloved friends and family. Funerals are usually last-minute affairs. By planning in advance, you can take the time to research all your options. Also, having the luxury of no-pressure planning means important details are less likely to be overlooked, and you (or your loved ones) don't make a rash decision on more expensive items than needed. At funeral ceremonies, eulogies are given that recognize the life of the deceased. If you plan your own funeral, you can ensure that those close to you will be recognized as well.

As an end-of-life doula, when it comes to funeral planning, I can assist with contacting the deceased’s legal representative, select a funeral home, choose a form of disposition, choose a service type (religious, military, fraternal), choose a funeral location,  finding and scheduling a clergy member or officiant, selecting a casket, selecting a burial container or vault, selecting accessories, choosing final touches, selecting a cremation container, arranging a cemetery plot, making graveside arrangements, securing endowment care, reserving the cemetery chapel, choosing a grave marker, arranging the visitation,  preparing the obituary, selecting speakers, selecting scriptures or reading for the service, gathering items for a memorial display, choosing forms of media, choosing or selecting charities, purchasing a register book, selecting pallbearers, selecting music, arranging flowers, arranging transportation, and organizing the reception. I offer programs or packages that include some or all of the select features.

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While many of us have become accustomed to the virtual communities that have emerged out of necessity since COVID, there is still nothing quite the same as being physically present to one another. This feeling has manifested strongly in the deeply human desire to be with the dying. No-one should die alone . . . unless they want to. My role is to assist the provision of a supportive and peaceful presence to patients who are dying.  I aim to re-frame dying – from something to fear, into a resource for resolution, re-integration and revelation. 

Specifically, emotional support in grief can be defined as being present and holding space for the griever, more specifically distilled to listening and allowing grief without judgment, platitudes, or an agenda. Individuals can find comfort in the midst of grief. Grief support services provide counselling, support and education to bereaved individuals, children and families. I provide the opportunity to talk things over with others, refer to a professional counsellor if needed. I offer support by being a good listener, respecting the person's way of grieving, accepting mood swings, avoiding giving advice, refraining from trying to explain the loss, helping out with practical tasks, staying connected and available, and offering words that touch the heart.

An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion. Having a care plan in place at the end of life is important in ensuring the dying person’s wishes are respected as much as possible. A care plan summarizes a person’s health conditions, medications, health care providers, emergency contacts, end-of-life care wishes, such as advance directives, and other decisions. A care plan may also include your loved one’s wishes after they die, such as funeral arrangements and what will be done with their body.

It’s not uncommon for the entire family to want to be involved in a person’s care plan at the end of life. That is part of your family’s cultural tradition. Or, maybe the person dying did not pick a person to make health care choices before becoming unable to do so, which is also not unusual. As a doula, I generate an individualized care plan for each one of my dying patient’s.

If one family member is named as the decision-maker, it is a good idea, as much as possible, to have family agreement about the care plan. If family members can’t agree on end-of-life care or they disagree with the doctor, your family might consider working with a mediator. As a doula, I can serve as a mediator to bring people with different opinions to a common decision. Clinicians trained in palliative care often conduct family meetings to help address disagreements around health care decisions. Regardless, your family should try to discuss the end-of-life care they want with the health care team. In most cases, it is helpful for the medical staff to have one person as the main point of contact.

As a doula, I can help approach difficult questions with the healthcare team. Here are some questions one might want to ask the medical staff when making decisions about a care plan:

• What is the best place — such as a hospital, facility, or at home — to get the type of care the dying person wants?

• What decisions should be included in our care plan? What are the benefits and risks of these decisions?

• How often should we reassess the care plan?

• What is the best way for our family to work with the care staff?

• How can I ensure I get a daily update on my family member’s condition?

• Will you call me if there is a change in his or her condition?

• Where can we find help paying for this care?

There may be other questions that arise depending on one’s family situation. It is important to stay in contact with the health care team. Two approaches might be useful when one encounters decisions that have not been addressed in a person’s advance care plan or in previous conversations with them. One should put themselves in the place of the person who is dying and try to choose as they would. This is called substituted judgment. Some experts believe that decisions should be based on substituted judgment whenever possible. Another approach, known as best interests, is to decide what you as their representative think is best for the dying person. This is often combined with substituted judgment. it may be helpful to think about the following questions:

• Have they ever talked about what they would want at the end of life?

• Have they expressed an opinion about someone else’s end-of-life treatment?

• What were their values and what gave meaning to their life? Maybe it was being close to family and making memories together. Or perhaps they loved the outdoors and enjoyed nature. Are they still able to participate in these activities?

If you are making decisions without specific guidance from the dying person, you will need as much information as possible to help guide your actions. Remember that the decisions you are faced with and the questions you may ask the person’s medical team can vary depending on if the person is at home or in a care facility or hospital. I can assist you in asking the doctor:

• What might we expect to happen in the next few hours, days, or weeks if we continue our current course of treatment?

• Will treatment provide more quality time with family and friends?

• What if we don’t want the treatment offered? What happens then?

• When should we begin hospice care? Can they receive this care at home or at the hospital?

• If we begin hospice, will the person be denied certain treatments?

• What medicines will be given to help manage pain and other symptoms? What are the possible side effects?

• What will happen if our family member stops eating or drinking? Will a feeding tube be considered? What are the benefits and risks?

• If we try using the ventilator to help with breathing and decide to stop, how will that be done?

As a doula, I can be with you when discussing these issues with medical staff. I can take notes and help you remember details. Do not be afraid to ask the doctor or nurse to repeat or rephrase what they said if you are unclear about something they told you. Keep asking questions until you have all the information you need to make decisions. If the person is at home, make sure you know how to contact a member of the health care team if you have a question or if the dying person needs something.

It can be difficult for doctors to accurately predict how much time someone has left to live. Depending on the diagnosis, certain conditions, such as dementia, can progress unpredictably. You should talk with the doctor about hospice care if they predict your loved one has six months or less to live.

Everyone involved in a patient’s care should understand how a person’s history and cultural and religious background may influence expectations, needs, and choices at the end of life. Distinct cultural and ethnic groups may have various expectations about what should happen and the type of care a person receives. The doctor and other members of the health care team may have different backgrounds than you and your family. I will discuss your personal and family traditions surrounding the end of life with the health care team.

A person’s cultural background may influence comfort care and pain management at the end of life, who can be present at the time of death, who makes the health care decisions, and where they want to die. It’s crucial that the health care team knows what is important to your family surrounding the end of life. One might say:

• In my religion, we . . . (then describe your religious traditions regarding death).

• Where we come from . . . (tell what customs are important to you at the time of death).

• In our family when someone is dying, we prefer . . . (describe what you hope to happen).

Make sure you understand how the available medical options presented by the health care team fit into your family’s desires for end-of-life care. Telling the medical staff ahead of time may help avoid confusion and misunderstandings later. Knowing that these practices will be honored could comfort the dying person and help improve the quality of care provided. As a doula, I can help to incorporate all necessary cultural beliefs and practices into the end-of-life care plan.

End-of-life care is a difficult and emotional time for everyone involved and we all deal with it differently. It doesn’t matter whether the oncoming death is sudden or expected. Dealing with death is hard. It is important to understand ways that I can support loved ones and caregivers of dying patients. Being compassionate in the way I communicate with the patient and their family is extremely important. In any form of communication, but especially around this topic and situation, it is key that I take the time to really listen.

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Listening gives people the space and time to discuss things they are comfortable with or to express any emotions they may be feeling. Attentive listening and showing sympathy can make a difference in how one copes. Sometimes being present is all that is needed. Loved ones and caregivers of dying patients may just need a shoulder to cry on, seeking no advice. Or they may need a distraction, such as watching a movie or doing a hobby together. I can give plenty of hugs when needed and remind them they are doing a wonderful job of caring for their dying loved one.

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As a professional caregiver, it is important that I be an advocate for my dying patients. Just as we only live once, we only go through dying once and the patient’s wishes should be honored. I aim to help family members and family caregivers also be an advocate by reminding them to tell me about their loved one’s wishes. If a loved one is having a hard time with this, I will give a gentle reminder that this is about their dying loved one’s wishes and that we should all be able to make our own choices regarding the end of our own lives.