The Journey With Declining Patients
As a licensed vocational nurse who has worked in hospice for 7 years, first as a field nurse who provided compassionate home care to patients in need to now a case manager who supervises and coordinates all the disciplines necessary to ensure a peaceful and positive end of life experience, the question I get the most from all the loving families and caretakers I’ve worked for is: When will it happen? How will I know?
Death and dying is something we have all accepted as a fact and truth of life. It’s natural. But there comes a time in one’s journey where the question begs: when will I die? And how will it happen?
As a case manager, it’s my role to provide as much education, teaching, and comfort to my patients and their families about this very important question. The truth is there is no real answer because no one can ever know when one will die. But it’s my job to guide the family and caretakers on what they can expect when the end is near for their loved ones to help them cope with anticipatory grief, reduce their anxiety, help them feel more confident in knowing what to expect, and to help them understand the importance in cherishing those final moments with their loved ones and to say their final goodbyes.
This blog is dedicated to helping families and caretakers understand the dying process and what changes they may expect to see when caring for someone who is terminally ill.
Some signs and symptoms that may indicate that a terminally ill person is beginning the dying process include withdrawal, changes in appetite, changes in elimination, changes in breathing, changes in body temperature, confusion/disorientation, and restlessness/agitation.
- Withdrawal: As a caretaker, you may notice that your loved one has begun to withdraw from friends and family and that they stay in bed all day and spend more time asleep than awake. You may also notice that they may seem unresponsive or difficult to arouse. It’s important to realize that these changes are all part of a normal dying process. This may be a dying person’s way of detaching from their surroundings and relationships as they prepare to release and let go.
- Changes in appetite: You may notice that your loved one is no longer interested in food or is no longer able to eat or drink. This is oftentimes one of the hardest concepts that caretakers must accept because food is a symbol of nourishment and spending family time together. But it’s important to note that as the body begins to slow down, it’s no longer able to process and digest food the same way. As a caretaker, you may notice your loved one losing weight, sometimes even despite eating adequately. Please know that this is part of the dying process.
- Changes in elimination: As terminally ill people decline; they may develop incontinence which is “the loss of control of the bladder and bowels”. This is a normal part of the dying process, but unfortunately, incontinence can be a shame or embarrassing for many people so the goal to preserve your loved one’s dignity is to keep your person clean, dry, and comfortable.
- Changes in breathing: As terminally ill people decline and are nearing the end of life, breathing may become irregular. Sometimes their breathing may slow down or other times it may be rapid. You may also notice periods of apnea which are periods of no breathing between breaths that can last from 5 to 30 seconds or even a full minute. In addition, a dying person becomes very weak and loses their ability to swallow, which may result in saliva collecting in the back of the throat and producing a kind of “rattling” sound. This kind of breathing and hearing the rattling sound is not necessarily uncomfortable for a dying person, but it may be hard for a loved one or caretaker to watch or hear. In these cases, your loved one’s hospice team will assess and determine the proper interventions to ensure comfort and relief at this time.
- Changes in body temperature: As a dying person’s body changes, they may develop fever or feel cool to the touch. You may notice your loved one’s extremities feel cool to touch and skin changing color where hands and feet become purplish or blotchy. Your person may even become pale or cyanotic around lips or fingertips. Please know that this does not necessarily indicate any discomfort, but this is part of the natural dying process.
- Confusion/disorientation: People nearing the end of life may become confused about where they are or who is around them. They may even talk about seeing people or things that no one else sees or even engage in conversation with people who have already passed. Your loved one may also talk about things as if they are going on a journey: “I want to go home” or “I need to find my suitcase”, etc. This type of language is symbolic and some of the ways our loved ones are signaling to us that they are getting ready to go. This, too, is part of the normal dying process and your hospice team will be available to provide counseling and medical interventions as needed to ensure comfort to both you and your loved one.
- Restlessness/agitation: You may notice your loved one becoming restless, unable to be still, tugging at bed linens or clothes, etc. Restlessness may be caused by a “slowing down of circulation, causing less oxygen to flow to the brain”. Sometimes, too, restlessness or agitation may be a symptom of pain or discomfort, or it can also relate to your loved one’s emotional or spiritual state, such as they are feeling unresolved. This is part of the normal dying process, but your hospice team will assess and determine the most appropriate intervention.
These signs and symptoms are just a few changes that you may see occur as your loved one is preparing to go. Each person’s dying process is unique but having a guideline to help understand what to expect is important as it will allow you to become a more confident and more prepared caretaker.
On my next blog, will discuss some of the things and interventions you can do for your loved one when you notice these changes occurring and will discuss what you can do for yourself as a caretaker to ensure your own well-being.