Here, There & Everywhere: There (Part 2)
Guest post by Sean Szutka
As your loved one begins the dying process, it can be extremely difficult to be with them as they let go of their physical body. Mostly, your loved one is ‘There’ – their ability to communicate has been reduced, then disappears altogether. Their physical and mental decline can be extremely fast or painfully slow. If we don’t understand that the changes we see are normal, however, we may begin to worry that our loved one is in pain or struggling, especially when they are not able to communicate clearly. Being able to identify the various stages of decline can eliminate the often-heartbreaking misinterpretations of these signs and the fear that they can engender.
This article aims to speak plainly about the changes the dying person experiences. It avoids emotional language in the hope of better preparing the reader in their support of their loved one.
Early Changes
The Dying Person
In the early stages of the dying process, your loved one will sleep more and have less energy for physical activity. They will likely have less desire to eat or drink and there are a number of reasons for that. Depending on their illness, their gastro-intestinal tract may have greater difficulty processing food. Swallowing becomes increasingly difficult.
At this stage of their end-of-life process, there will likely be changes to your loved one’s ability to control their eliminative processes. They could experience greater constipation or incontinence though, in earlier stages, this may be a response to their medications. Bowel movements may be absent or change to uncontrolled oozing of soft or liquid stool. Laxatives and diuretics may be prescribed in an attempt to control constipation but, often, the use of catheters and colostomy bags may be something to consider in your endeavours to keep your dying loved one as comfortable as possible. There are also absorbent bed pads and adult incontinence garments that may be a benefit to their comfort and cleanliness.
You will also notice further changes to the dying person’s skin and hair; losing more of their vibrance and beginning to appear thinner. Further weight loss will also occur as your loved one approaches the active dying phase.
Neurologically, your loved one will begin to show a decline in their sensitivity to touch. Their speech will decline in both the amount being communicated and the clarity of expression. Their vision will start to decline, with their field of vision shrinking from their peripherals inward to the centre of their field of view. Eventually, their hearing will fade and their breathing will shift to purely autonomic (that is, without their control).
Your loved one will slowly lose their abilities in complex or executive planning; their motor skills will decline and be less under their voluntary control. You may notice their arms or legs twitch from time to time. It has also been shown that larger muscles may activate, forcing the dying person to “sit up” in their bed or raise a hand as if to reach towards someone. As a member of their support team, you will be better able to decipher the level of volition in these movements.
Finally, a note about those suffering from Dementia or Alzheimer’s Disease. Studies have shown that as the dying person approaches their active dying phase, many see a brief return of lucidity. This can often feel like an improvement in the person but is more likely a signal that death is imminent. Enjoy your loved one’s time of clarity as best you can but try not to hold on to it too tightly.
You & Your Support Team
This period can be especially difficult for you and your support team. Emotions can run high as your loved one’s condition declines. As best you can, avoid expectations and try to remember that no two dying experiences are the same. For example, you may have a very well-laid-out plan for your loved one’s death, with clear intentions for them to die at home or hospice. Complications can arise, however, and you may be faced with a decision to move your loved one to hospital while they are in a very compromised state. Holding on to the plan you had may cause your loved one greater discomfort in their dying process. While these decisions can be agonizing, your expectations of things progressing a particular way can not only decrease your loved one’s comfort but cause great conflict in yourself and with your support team. You and your support team are all likely to have different perceptions and responses to the same events and every one of them is valid and should be approached with kindness, compassion, and empathy.
Presuming that things all go to plan, you should still look to keep your expectations of yourself low, as well. You may want to be at your loved one’s side 24 hours each day, but if you do not rest, your perception of events can get blurry and, again, cause conflict. Rely on your support team. Coordinate your efforts and keep communication open, so you can all be at your best during these trying times. You may even consider the addition of a grief counsellor to your team to fully ensure that each of you is supported the way you need.
Active Dying
The Dying Person
As your loved one continues their end-of-life process, they will eventually reach a state when they are increasingly asleep or unconscious. This is the state called Active Dying.
Neurologically, there is a reduction in your loved one’s brain activity and the normal brainwave functions are losing power. As their nervous system shuts down, it has consequences for both communication and voluntary function. Your loved one’s body may twitch or become very still. The autonomic messaging to the organs begins to fail and their internal systems will begin shutting down, with their vital signs beginning to decline or become irregular.
During their times of wakefulness, their communication will simplify and may be reduced to single words, noises, or body language, depending on their state of pain or level of medication. There may be less clarity in sound production or slurring as they lose acute control of their muscles.
In this stage, the dying person’s heart will beat less strongly, and there are a number of consequences to this change. Their blood pressure will fall, which is a contributing factor in their periods of unconsciousness. As their circulation slows, their skin will cool – especially in their hands and feet. You may notice that their nail beds have changed colour or become cloudy. This is a normal indication of the active dying process.
You will also become aware that your loved one’s breathing is changing. Specifically, what has become known as “The Death Rattle.” This is a normal part of the dying process and is very easily explained. As the dying person spends more and more time in a state of unconsciousness, saliva pools at the back of the throat. As the air passes this small amount of liquid, it crackles and makes phlegmy sounds. Your loved one has reached a state of deep relaxation and there is no indication that they are in any discomfort. If, however, you are discomforted by this change, there are some medications that can reduce the amount of saliva produced and minimize the phlegmy sounds. Your loved one may also make a soft moaning sound as the air passes their vocal cords. This, too, is related to their state of relaxation and is nothing to be concerned about.
It is also possible, however, that your loved one may become restless. If they are grabbing at their sheets or clothing, it may be a signal that they are in pain. If you are worried about their comfort, consult with their medical specialist, general practitioner, or their community health staff about their medication dosages.
You & Your Support Team
As your loved one enters Active Dying, their communication will be dramatically reduced, and it is very normal for you or your support team to become even more concerned about their comfort. Shifting your focus to “comfort care,” then, may offer some reassurance during your loved one’s active dying.
You may choose to create a comforting atmosphere by dimming the lighting in the room, playing soft music, or using aromatherapy. Your loved one is likely to have stopped eating and drinking at this point, so signs of dehydration become normal. You can mitigate these symptoms by melting ice cubes on their lips or using water swabs to introduce small amounts of water to their mouth. As the dying person’s movement reduces, you may want to gently shift their position to reduce the possibility of bed sores.
As stated above, take time to acknowledge your limits. Take food and drink. While your loved one may no longer be eating or drinking, you still need the energy it provides. The active dying stage can sometimes last a few days and if you are not eating and resting, you will not be at your best for your loved one. Coordinate a sleep schedule with your support team, knowing that they will come get you if something changes. Even if you find that you cannot fully fall asleep, lying down and closing your eyes in a dark space for some time will refresh you.
There may come a time when you feel like your loved one is “hanging on.” Consider taking some time away from them. There is much anecdotal evidence to suggest that, spiritually, some people may not want to put their loved ones through watching them die and may be waiting for a moment alone; to slip away without causing you and your support team too much discomfort.
Final Moments
The Dying Person
Your loved one’s final moments may appear to be the easiest for them. Their breathing will cycle through deep breaths to shallow, from rhythmic to irregular. Their breathing will then move to what appears to be heavy sighing with long pauses in between; these pauses will increase in frequency and length.
Eventually, their breathing will stop. And the heart, without the oxygen needed to power it, will also stop. Without any circulation, the blood stops flowing and begins to pool in the lower parts of the body. There will be further changes to skin colour, especially in the lower parts of their body (when lying down, this is often the buttocks, the back, the calves, etc.). This process is called Livor Mortis and looks like extreme bruising. Most people often don’t experience Livor Mortis as it isn’t actually observable by the human eye until about two hours after death.
Your loved one’s body will start to cool down and the process of Autolysis will begin. Without the immune system to keep this process at bay, the body’s enzymes begin to break down cell walls, and bacteria – also now unchecked – start to break down the body’s structures, creating gases that bloat the body.
About 4-6 hours after dying, Rigor Mortis then sets in. In this process, Calcium in the body activates the proteins Actin and Myosin, binding them together and contracts the muscles of the body. The stiffening of the muscles lasts until the chemical bridges between the two proteins begins to break down, or about 13 hours after death. The softening of the tissues can take up to 60 hours to complete.
Recent findings have shown that, at the moment of death, some parts of the brain actually increase in activation, especially the visual system. The brain also secretes large amounts of neurochemicals, and electrical activity in the brain increases both in power (gamma waves) and coherence. Many researchers have hypothesised that these processes are the cause of the “long tunnel of light” and the “life flashing before my eyes” phenomena often spoken about by those who have experienced near-death events.
You & Your Support Team
You and your support team – your family and special friends, perhaps – are gathered in vigil and your loved one has entered their final moments. You will naturally want to stay focused on them at this time. It will be natural for there to be less conversation and for that conversation to gravitate towards support of your dying loved one and each other.
As their last breath passes, you will all experience a heightened emotional and physical response. There may be crying or even a sense of relief. It is not uncommon for those witnessing the death of a loved one to feel a sense of euphoria, as a rush of adrenaline may surge through their bodies at this time. Each of these responses, as well as a host of others, is a natural physical consequence of the experience you have just gone through and should not be judged. Remember, no two people will respond the same way … however you can, find your empathy and compassion for each other. You will need to support each other now, more than ever.
A Quick Note About Time
The duration of each of the phases above will be unique to your dying loved one. There are, however, things that can affect the end-of-life timelines – expanding or contracting them depending on the person.
For example, the person’s level of health at the time of diagnosis can have a profound effect on the Early Changes stage. As the dying process continues, the level and intensity of medical intervention can either reduce or prolong their end-of-life … again, depending on the person and their particular issues.
More profoundly, however, is the person’s urgency to live or their readiness to die. Something so spiritual can only be the domain of the person themselves. There is no predicting how an idea so ephemeral might affect their end-of-life experience.
Supporting a loved one as they die is one of the most profound experiences a person can go through. We can start to question our perceptions and our sense of who we are. Each moment offers opportunities for self-doubt, criticism of self and others, and a sense of surreality that can remain for many months or years.
The truth is that they were “Here” and now they are “There.”
Grief is the process by which we struggle with that duality. Through many different tools, beliefs, and activities – and with a little time – we can create a new reality, so that our loved one can be both “Here” and “There.” We can create a singular reality … because, really, they are “Everywhere.”
Guest Post by Sean Szutka
Resources + Links
Mannix, Dr. K. (2021). What Does Dying Feel Like? A Doctor Explains What We Know. BBC Science Focus
Matthias, M. (2021). What Happens to Our Bodies After We Die? (n.d.) Britannica
The Dying Process: Final Hours (n.d.) Burnaby Hospice Society
Dear, J. (2016). What it Feels Like to Die The Atlantic Magazine
Kinard, J. (2023). Why Dying People Often Experience a Burst of Lucidity. Scientific American