Preparing for the death of a terminally ill loved one: What to expect

Some might think knowing of a loved one’s impending passing in advance somehow eases the pain, but anyone who has experienced this would tell you it’s one of the most difficult challenges a person could ever face. Everyone experiences and copes with grief differently, and ultimately there is no “right way” to handle a loss. One of the most important tools you have in navigating this difficult time with your family is preparation, from learning what your loved one’s final days may look like to knowing the kinds of reactions that might arise amongst you and your surviving loved ones.

What to expect from your terminally ill loved one

The exact sequence and occurrence of symptoms of physical decline will vary, so talk to your loved one’s doctor for specifics. There are, however, some general signs the body has begun to shut down that tend to appear in nearly everyone. You’ll likely see physical, emotional, and mental symptoms of decline, and while some may come gradually, others will seemingly happen overnight. It’s important to make yourself aware of them so that you are not caught off-guard later and will know exactly what to do. It may seem frightening at first, but knowing what to expect in such a distressing situation can give you a better sense of control and understanding.

Fatigue
Fatigue is a common sign of decline, so you may see your loved one start to spend more time sleeping than usual or fighting to stay awake. They might be difficult to rouse, perhaps increasingly so over time, and could also grow uncommunicative even while conscious. Don’t assume that no response means they can’t hear you or don’t understand what you’re saying. Continue speaking to them in a normal tone when you visit, making conversation they don’t necessarily have to respond to, and give them quiet time to rest if they need it.

Loss of appetite
In addition to increased sleep, your loved one may stop eating and drinking fluids as often, or in some cases, altogether. It’s easy to feel alarmed that they might not be properly nourished, but it’s all a normal part of the body’s shutting down process. The energy it would take to consume nutrients is often more than they’d gain from food or water, so don’t force eating or drinking if they refuse it. It’s also important to consider that they may have trouble chewing or swallowing after a certain point, so insisting they eat or drink could be dangerous. Keep small ice chips and water or juice with a straw handy, offering it to them every now and then to be sure they’re content. Lip balm or glycerine swabs can both be helpful in keeping your loved one’s lips moist and prevent cracking, which might be especially troublesome with their lack of hydration.

Discoloration and temperature changes
Some changes in your loved one’s body will be more difficult than others. You may notice discoloration and temperature changes in their limbs, especially in hands and feet, as their circulation begins to slow and change. The skin may turn a darker, bluish colour and feel cold to the touch. Some people may feel hot to the touch and even sweating at times. Do what you can to make your loved one comfortable in these conditions — warm socks and blankets can fight the cold, while switching the quilt on the bed for a light sheet or bringing in a small fan can help with heat — and check in to find out if they need additional considerations. Don’t be hesitant to make physical contact unless your loved one has told you it’s painful; many people feel uncomfortable touching someone who looks ill, but simply holding your loved one’s hand or placing your hand on their arm can be extremely comforting.

Disorientation
Disorientation is also likely to afflict your loved one, though it could manifest in any number of ways. Some people may feel momentarily confused about the day, time, or place. Some may have trouble recognising familiar faces, or struggle to understand what’s going on around them. Memory problems can also occur, both short-term and long-term. Make sure you keep your loved one calm and answer their questions in an even tone, especially if they seem distraught. Identify yourself as you enter the room or before you speak while there are others present, and never talk amongst yourselves as though your loved one can’t hear you.

Breathing issues
Some people may seem to take breaths less frequently in general, almost as if they’re sleeping. Or your loved one may display a general change in their breathing patterns, sometimes taking a series of shallow, almost pant-like breaths. These kinds of problems tend to worsen as a person nears the end. Fluid sometimes accumulates in the lungs, causing a “rattling” type of sound that can be unsettling, even frightening, to friends and family. Keep in mind, however, that while this noise tends to signal the end of life and may sound frightening, it doesn’t necessarily signal physical pain or suffering in your loved one. Children or particularly distraught family may want to take a moment to step out of the room — it’s important for your loved one to feel calm and at peace as they prepare for what’s next.

Withdrawal
For many watching a loved decline, it’s the emotional and physical symptoms that are especially difficult. They might begin to withdraw socially, only speaking at times or to some people. This can be frustrating for those attempting to communicate or say goodbye, but it’s important not to take it personally. Usually, your loved one is simply beginning the process of detaching from their surroundings and preparing to let go of this life. Don’t let it deter you from visiting or spending time at their bedside, because now more than ever, it’s important to let them know they are loved, supported, and not alone

Unusual Requests or communication
There may also be some unusual requests or communication from your loved one as they decline. They might ask questions they should already know the answer to, or make nonsensical comments out of the blue. Some people will make special requests of their friends and family, whether out of a need to settle unfinished business or as a “test” to ensure everyone is ready to say goodbye. Honour the requests that you can, even if you don’t understand them, and try not to be visibly flustered. Though you may not recognise the significance of the action or meaning of the statement, what you do know is that it’s important enough for your loved one to bring up, and therefore it needs to be respected.

Attempts to resolve issues and mend fences
Most people who are terminally ill dislike the idea of leaving unfinished business behind, so your loved one will likely make attempts to resolve issues and mend fences in their final days. That might mean having some difficult conversations, perhaps even being argumentative. Take the opportunity to clear the air, and encourage others to do the same. Giving everyone the opportunity to say their piece can not only give your loved one the serenity they need, it can help you move on, as well.

Seeking your permission to let go
Finally, your loved one may seek your permission in letting go. Once a person has resolved their own issues about passing on, they often worry about the family and friends they’re leaving behind. If they know that someone is having trouble accepting the situation, they might initiate a frank conversation seeking approval to pass on. This can be incredibly upsetting for all, especially if your loved one is specifically holding on in the interest of others. It’s crucial to let them know that you love them and, though you hate the idea of losing them, want them to be free of their pain and condition. Find a way to let them know they have your permission to move on, and help other friends and family do the same.

What emotions and reactions to expect from yourself and from your loved ones when caring for a terminally ill loved one

Now that you’re prepared for what you might encounter from your terminal loved one, it’s time to look both within and to your family. There will be a wide array of emotions from everyone throughout the process, so it’s crucial to be respectful of how everyone feels. Lean on each other, keep the lines of communication open, and avoid passing judgment on how others choose to cope. Some might feel better staying nearby and visiting your loved one often, while others may need to limit their visits and focus on work or other responsibilities — it doesn’t mean anyone cares more than anyone else. In fact, some of your friends and family may feel so consumed by their grief that they truly need other projects to keep their minds occupied.

Common emotions from loved ones in this situation include:

• Shock or denial
• Anger
• Depression
• Fear
• Guilt
• Helplessness
• Relief

These feelings might arise at any time, in any order, and in any combination. Some people might be so overwhelmed by the situation that they have trouble identifying exactly what they’re feeling, so it’s important to make sure everyone has an outlet. Writing your thoughts down or seeking guidance from a counsellor can be especially helpful, but it’s important that you all rely on each other, as well. Though it’s helpful to have the insight (and even the privacy) of an impartial audience to work out your feelings, never underestimate the comfort that comes from leaning on those who know and love you most.

Keep in mind, however, that while a terminal diagnosis may initially bring the family closer together, there is often turmoil with time. Caregivers may feel overwhelmed or resentful, especially if they have limited help. If you’re the primary caregiver of your loved one, it’s crucial that you take steps to give yourself a break every now and then. Engage in activities that bring you solace, whether it’s a long bath at the end of a particularly tough day or going for a run each afternoon. Others in the family should go out of their way to support both the caregiver and their afflicted loved one. Families might find it helpful to implement a rotating schedule: not only can this prevent caregiver burnout, it can give everyone a more balanced opportunity to spend time with their loved one as time grows short.

Considerations for your child: Talking to children about illness and the end of life

It’s difficult to say how your child will handle this kind of loss, especially depending on who the terminally ill person is. Some children handle the news better than adults — they might not truly grasp the situation ahead of time, and their tendency to live in the moment will prevent them from thinking too far ahead about it. However, the loss will have a significant impact on them at some point, and they’ll need your help moving forward.

One of the most crucial factors to keep in mind with children is the need to be honest. While there may be certain details you don’t need to give them — younger children might not necessarily need the explanation of the kind of cancer — it’s important they have an accurate understanding of what’s going on. Use language they can understand, and simplify when possible. Answer their questions, and be prepared to go over things more than once. You might need to address things they’ve overheard from others, so be mindful of what’s said around them.

Some children end up feeling somehow responsible for the illness of a loved one, especially if it’s a parent or someone else especially close to them. It’s easy for them to remember a time where they shouted an angry thought or “wish,” and they conclude that they have caused the condition. Even if your child doesn’t say they are feeling this way, make sure they know in no uncertain terms that the illness is not their fault, and there isn’t anything they could have done to prevent it. Explain that sometimes, terrible things happen and wonderful people become ill.

Talk to your child about what’s going on regularly, even if they don’t outwardly seem to be very bothered by it. They might find comfort in creating a memory box full of photos, memorabilia, and other items that remind them of their loved one. Giving them a grief journal to write down their thoughts and feelings can also be soothing, whether it’s before or immediately following the passing. If your child seems to be struggling to cope or isn’t talking to you, they might feel more comfortable speaking to an older sibling or another family member. Try not to get upset if this is the case — it’s possible that your child sees you coping with your own grief and doesn’t want to add to it. Let them know you’re always available to talk whenever they’re ready, and that it will never be a bother or inconvenience. Even if they don’t open up right away, it’s crucial to say the words so they know the door is always open.

Let your child be involved with visiting and caring for your loved one for as long as it’s appropriate. It may be difficult for them to see that person, especially if they are visibly deteriorating, but it can be an important part of understanding and coping with the ultimate death. Give them the opportunity to say goodbye, especially if you become aware that time is running out.

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This information was adapted from details provided by selfexam.org and was shared with AMMF as a useful resource for those affected by cholangiocarcinoma.

Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

February 2020