This is the title of a pamphlet from the Nova Scotia Health Authority. It is a difficult read. It is written for people living with an advanced illness, their families and friends. I believe the important “teachable moment” in this article is helping you, as a support pillar, to know how to handle the next phase of my life when cancer overwhelms my organs. It is the moment when they can no longer sustain my life.
I hope that moment is months or years in the future. Only God has that date recorded on his Google Calendar to welcome me home. For right now I feel healthy and plan to continue to live large. I’ve been off chemo for weeks now and the side effects are starting to diminish.
I realize this article sounds like it was written by the grim reaper. My hope is that you move beyond that quickly and recognize that the content is from my pen. It proved personally beneficial in preparing me to be emotionally ready for what lies ahead. I didn’t pick any of these roads I’m on but I plan to continue to be the best version of myself while on the ride as long as physically possible
I encourage you to take your time reading this blog. As mentioned above, writing it proved highly beneficial for me as I prepare to live out my days on our blue dot called planet Earth.
I look back on my 67 years with much satisfaction. The last 18 months was a roller coaster ride. The time before was equally exciting with lows, highs, and moment of extreme pride in myself and for members of my family, my many friends, and many others who have crossed my path over the years.
My goal is writing about death and dying now is to prepare you to know what is coming. As Caitlin Lees wrote to me some time ago, “We are all living but we are all dying too … and it’s painful to know you’re further along that timeline than you’d hoped.”
Any conversation about death is awkward and uncomfortable. I have found when spoken about openly, and with a sense of humour, it gets the conversation started. Once started, my questions and your questions are on the table.
I started my blog back in December, 2020 in an effort to reach out to people with cancer but lacking the support pillars I enjoy. I didn’t anticipate how many people would find my ramblings to be a source of inspiration. I find it gratifying that through the most important “teachable moments” of my life, my action is getting people to reflect on how they are living their lives and decisions to make positive change. Good on you guys! I’m proud of you.
As an aside, the most terrifying part of having a life-threatening disease is that you don’t know what you don’t know. This is a huge source of anxiety when waiting to hear the results of tests like CAT Scans. We know that our future treatments depend on these results. In my case, that last test revealed that there is no benefit to continue treatment. I am chemo resistant.
A second source of anxiety is telling friends over and over about how your disease. Each time I did, it replayed what I was facing again and again. Anything repeated will dominate my thoughts so it was the only thing in my thoughts.
It took me a while to understand people really weren’t looking for all the details. When they ask how you’re doing, in most cases, they just want you to know they care and wish you well. I was giving way more information than needed.
These days, when people ask how I’m doing, I usually reply with, “I have good days and bad days but more good than bad.” Most of the time that is all they need to hear. If they’d like more detail, they will ask and I’m okay with sharing more.
In advance of the next part of this blog where I describe in some detail what my decline will look like, first and foremost, I do not wish there to be any restrictions should you wish to visit even when death is near. I plan to complete my earthly journey at home, in my own bed, and surrounded by the most meaningful people in my life.
Changes to Expect Near Death
What follows is my version of the ideas expressed in a section of a document prepared by the Nova Scotia Health Authority and titled, Preparing for DEATH and DYING – A Guide for People with Life-Limiting Illness, Their Families and Their Friends. The other sections are titled: What is Palliative Care? What Plans Do I Need to Make? Helpful Services, Place of Death, More Information for Caregivers, and To Learn More. You may find these other sections instructive but for this blog, my goal is to share Changes to Expect Near Death. I hope you do visit me during the final stage of my life and what follows may better prepare you to do so. It is still me inside this diseased and failing body. By the way, given your location, a video call may be the best way for us to have a visit.
This information will be difficult to read. I found it instructive for me to know what to expect as I near the moment of death. For my family, friends, and support pillars, having this information can better prepare you to be with me and care for me.
What follows is representative of what I can expect but the process of dying varies from one person to the next. Typically these changes are more difficult for you to watch than for me to experience. I think that the more you understand what is happening to me, the better you will be able to cope as these changes occur.
As I mentioned, all dying people do not have the same signs or symptoms, but I think it will be helpful to share the common ones. These changes are a normal part of the dying process, and knowing what to expect can help you deal with your fears and concerns. I will openly share my fears and concerns so I count on you to reciprocate. Should you find that too difficult, talk with any family member, close friends, or a member of my care team.
As I approach death, I will get weaker and my breathing patterns will change. I will not be aware of these changes and I will not be upset by them. However, they may be distressing for you to witness. There will be short periods when I will stop breathing. Closer to death, the time between breaths will be longer. It may seem to you like I am gasping. At other times, my breathing will become deeper, more rapid, or irregular. Oxygen is not called for as it will not help in any of these situations.
It is well known that you need to watch your own breathing patterns as it is common for caregivers to start to breath in the same pattern as a dying person. Be careful to pay attention as this can lead to dizziness.
Eating and Drinking
Near death, I may not eat or drink very much, if anything at all. At this stage, food or water will not keep me alive any longer. When my body’s systems slow down, it is hard for the body to manage food and water, and eating or drinking could cause me discomfort.
As well, I will likely be very sleepy or unable to swallow properly. Food and water can get into my lungs, causing coughing and gagging. This can lead to congestion and pneumonia. If you are with me and think you should give me food or water, check with my caregiver first so they can coach you on how to do it safely.
If I ask you for water, raise the head of my bed first and instead of water, feed me some ice chips or very small amounts of water using a straw or a cup with a spout. Stop right away if I cough or have trouble breathing.
As a genera rule, an intravenous (IV) is not usually started near death because the body cannot use the fluid properly. An IV can produce increased fluid in my lungs, and cause me to suffer. An IV will be used if I have a symptom that the IV might help,
Gurgling in the Throat
As I get very near death (a day or two to a few hours before) I am likely to gurgle or make snoring-like sounds. These noises are caused by several things: small amounts of mucus in my throat, my jaw dropping back, or my tongue moving back due to the relaxation of jaw and throat muscles. Sometimes, you might hear a soft, short, moaning sound as I breathe out. These changes will not cause suffocation or death by a blocked airway.
My caregivers may decide I should turn on my side, with my head slightly elevated. They will use pillows along my back to support that position. Often, this change in position will stop the sounds.
It may be that my family physician, Dr. Joseph Wattle, will order drugs to reduce secretions. Oxygen will not help with this problem. Suction machines are needed only in rare cases, but that is likely to cause me some distress.
Loss of Bowel or Bladder Control
There is a good chance I may lose control of my bladder and even bowels; this is called incontinence. It is common and happens when muscles relax. There is nothing to prevent this but my caregivers will make sure I am clean and dry (don’t worry Brad … you won’t need to wipe my ass). They will check me often to prevent skin problems, like rashes and infections. Don’t be surprised if you discover my bed is wrapped in a plastic cover and incontinence pads to protect the mattress from being soiled.
To reduce the number of trips to the toilet, I may start wearing disposable absorbent undergarments … we start life in diapers and end it the same way eh? I may also ask to have a catheter inserted so my urine will collect in a bag.
As I approach death, it is unlikely I will need to urinate much. It is likely my urine will become tea-coloured and strong smelling. This is caused by drinking less fluid and the decrease in circulation through my kidneys.
My caregivers will be coached to wear gloves always when handling waste or soiled clothing. Janet will know how that is to be disposed.
I will start to breath mostly through my mouth and take in very little fluid. This can make the lining of my mouth and tongue dry and uncomfortable. Mouth care will help. Janet will have a bunch of products to wet my mouth and protect my lips.
My caregivers will use things like sponge-tipped swabs to clean and freshen the lining of my mouth, my gums, and my tongue. It is likely I will bite on the swab when it first goes into my mouth, especially if I’m unconscious. This is normal. If this happens my caregiver will hold onto the stick and after a few moments, I will stop biting. If you’re with me, you might like to relieve my caregivers of this task.
My mouth should be cared for every couple of hours so if you’re visiting, there will be plenty of chances to swab my mouth. If you’re having a beer, you might consider using that instead of water …. just saying.
My nose is likely to become dry and uncomfortable My nostrils can be moistened with a water-based gel. Janet will make sure this is around. This might be akin to thumbing your nose eh?
Eye drops, such as artificial tears, will help soothe dry eyes. Janet knows what we use. Although my caregivers will apply drops regularly, this is another task you might like to take on if you visit … no pressure … it just might make you feel like you’re doing something to help me be more comfortable.
I haven’t had all that much pain throughout my cancer treatment with the exception of after my surgery in May 2020 and when I attempted to lift my motorcycle which resulted in a compression fracture of my Lumber 1 Vertebrae. It took many weeks for that to heal such that I could stand straight.
Apparently, any pain I might experience, will not worsen as I near death. As my body changes, I will become sleepier and move less, so any pain I might have will decrease. I am not on any pain meds now, and only ever was while in the hospital for my surgery. That may change and if it does, Dr. Wattle will regulate the dosages, etc.
If I develop problems swallowing, Dr. Wattle may change the way my drugs are given. My caregivers may be instructed to give pain meds by mouth, by putting the medication against the lining or under my tongue. Sometimes drugs are given by suppository and sometimes in a way that uses fewer needles with a special infusion set called a butterfly. I still have a port-a-cath in my chest so that might be an option.
It is likely I will moan as I am moved from side to side or when I breath out. This is not a sign that I am in pain.
Some of my facial and body movements might be a sign of pain and that a dosage increase is called for. That is a call that Dr. Wattle will make if necessary.
Restlessness and Agitation
There is a good likelihood I will become very restless or agitated. This is likely a sign of delirium. I may make restless and repetitive motions, such as pulling at my bed linen or my clothing. Such motions can be caused by changes in my body or by a drug I’m taking. This is normal.
My caregivers should not interfere with or try to restrain such motions but make sure my care team is aware of them.
To calm me, my caregivers will speak in a quiet, natural way, lightly massage my forehead, read aloud, or play some soothing music. It may soothe me for you to talk about a favourite place we enjoyed together or about a favourite memory. I may not be awake or conscientious but that doesn’t mean I cannot hear what is going on around me.
What is known to be really important is that there is only one conversation in my room at a time. This applies to having the TV on while having a conversation with me. All you need to do is pause and/or mute the TV. However, when finished and leaving, turn the TV back on as the sound of it is likely to be a source of comfort for me.
To repeat, if I am restless or agitated, only one person should speak at a time. You need to make a conscious effort to wait for that person to finish, count one mississippi, and then speak.
It is unknown whether I will want to be touched when agitated. I’m guessing the answer is yes, since I like to be touched anyway, so feel welcome to try and see how I react. My caregivers will be watching so they can coach you on what’s okay when I’m restless or agitated. If unsure during a visit, ask them what they think.
Although I don’t really know, but it may prove comforting for me if you crawl in bed with me. My caregivers will know if that’s the case.
I understand that many dying people like to have a nightlight on so they are never in the dark.
My doctor will know if sedatives might help with restlessness when other things don’t work. Throughout my life, I haven’t taken many drugs so my preference is that meds are the last option when everything else fails.
Weakness and Sleepiness
An my illness progresses, I will feel weaker and much more tired. Typically these changes happen over a few days but can sometimes happen very quickly, over a few hours. At a certain point, I’ll likely spend all my time in bed. A shoutout here to Graham Owen for giving me such a good deal on the bed his Dad had which allows the head and feet to be raised … not to mention the vibrator,
As I become weaker and have difficulty moving myself, my caregivers will change my position every six to eight hours. You might be asked to help with that and given my low weight, it shouldn’t present a problem.
I may appear to be in a light sleep much of the time and more awake at night. I suggest you visit during times when I’m more prone to be awake and alert. I hope I am lucid until very near death so we can have two-way conversations. Even if that’s not the case, you might have to carry the conversation. As mentioned previously, talk about memories we share. However, you can also talk about what’s going in the world.
You do not need to be quiet around me. You should speak in a normal voice. However, loud noises should be avoided as they may startle and disturb me, causing some distress. Everyone who visits should talk to me as if I can hear everything. I may be too weak to respond or may not be able to speak at all, but there is a pretty good chance I will still be able to hear you and understand what you say. This is also true of someone from away who might like to connect via a video call.
In spite of how stressful a time this will be, I have thrived on humour for much of my life. This time is no different. It is okay to laugh when with me. I welcome it.
Very Near the Time of Death
I understand as the time of dying comes very close, my hands, arms, feet, and legs are likely to become cooler and the colour of my skin is likely to change. The underside of my body is likely to become darker and my skin might look purplish. This is a normal sign that the circulation of blood is decreasing to my limbs and is being reserved for the most vital organs.
My caregivers will keep me warm with blankets.
My eyes may be open and odds are I will not blinking at this time.
There is no need for my caregivers to take my blood pressure or pulse as doing so might be uncomfortable.
There is a chance that even if unresponsive to this point, I may become more alert as death approaches. This can last for minutes or for hours before I become very sleepy and then unresponsive again. This is normal.
Congratulations. I realize this was a challenging and likely uncomfortable read. It was difficult to write but in doing so I am better prepared for what lays ahead.
My plan is to die at home. I do not wish there to be any barriers keeping you from spending time with me as my health declines. I have no control over the countdown clock on my life. That is in God’s hands. He continues to hold my hand as he has been doing from the beginning of my treatment and this has given me the courage I needed to face this challenge with dignity, courage, humour, grace, and faith.
As always, I thank you for joining me on my journey as a support pillar. You, my family, and good friends from around the world have been a crucial source of motivation to keep me living large every day.
Peace, Love, and Laughter