Learning that you or a loved one has a terminal condition is a life-changing moment. It can be difficult to take in the news, and it can often feel like no one understands the challenges you're going through. But remember, you don't have to go through this difficult time alone. Whatever you are experiencing, there are people who are capable of helping you through this.
A terminal illness is simply a disease which will lead to a natural death8. A wide variety of illnesses could be considered terminal, and a patient may have just one or several in tandem.
Some terminal illnesses may include cancer, dementia, motor neurone disease, lung disease, advanced heart disease, or a neurological disease like Parkinson's.
The list of conditions which could be categorized as terminal is lengthy and diverse, but all share a single trait; the patient being diagnosed is expected to die from the condition.
As with any illness, there are a variety of side effects. Few people are prepared or consider the tremendous emotional impact of being diagnosed with a terminal illness. Here are some of the emotion side effects to be expected.
There is not one single reaction that one may have upon receiving the news that their illness is life threatening or terminal1. Some patients may react with denial and shock, and the heavy reality of what is happening may take some time to come to the surface. Others may react with anger, or sudden profound sadness7.
Whatever your reaction is or the reaction of a loved one in your life with a terminal condition, just know that it's perfectly natural.
Rashpal18 Sidhu Thomson was diagnosed with breast cancer for the first time at the age of 35. "Initially it was like a bombshell, but as time's gone on I've come to accept a new normal. You have bad news and you adjust to it - you just carry on. So it's a cycle of accepting what you have and then if things progress; accepting that and just moving on. So, it's a bit of a rollercoaster."
Many patients who are facing life threatening conditions feel guilty or ashamed, as though their condition is a punishment for something they have done. This is a natural feeling. Sickness is an unfortunate part of life.
When Ekata16 was first dealing with a diagnosis of terminal leukemia, her first thought wasn't of her own needs, but of her family. "My family looks to me for cues on how to act, so I was concerned about making them worry about me. There are certain things I can't open up about with them."
It's also common to feel isolated and alone, even for patients whose family and friends are present in their life and supporting them through their illness. This doesn't make you ungrateful, but rather it's simply challenging to feel like anyone outside of your own experience can truly understand it.
Teva19 Harrison was young when she was diagnosed with Stage 4 metastatic breast cancer, a newlywed, and at first found difficulty finding any understanding from her peers. "Later, my husband and I attended a retreat for young adults with cancer. I talked, not just to other people with breast cancer, but people with advanced cancer, who can't be cured. Younger people like me, just hitting their stride in life, knocked down by the punch in the stomach of terminal illness… What I was looking for was experiential information about what it feels like to have cancer, to go on living with it."
Terminally ill patients often feel guilt or pain at the thought of leaving behind their loved ones, especially when they are caretakers or financial providers for their family. Remember that your illness is not your fault, and that you are not to blame for the impacts that your illness is imposing onto you or your loved ones.
Some patients may be more concerned with having to cope with the process of a progressing illness. They may worry about the changes their body will go through, such as losing weight, struggling to be independently mobile, or experiencing hair loss.
Wondering how long they might be able to remain working or living independently may also be top concerns for a recently diagnosed terminal patient.
While receiving a terminal diagnosis can bring about depression, fear, guilt, and anxiety, many terminal patients also find that their prognosis brings a bit of optimism and lightness to their emotional state.
Holly Webber13, a 25-year-old with terminal lung and liver cancer, wrote "Sometimes I feel like I'm on another planet looking in on this one. I can't relate to people stressing about work or getting the Tube. People are so wound up, but it's such a waste of time and energy. Chill out! I hope that by reading this, someone out there will take a second to think, 'I'm glad that's not me. Maybe I should worry less about the things that don't really matter.'"
Anyone connected with the patient may experience grief and sadness upon hearing the news of a terminal prognosis. Partners, children, siblings, parents, family, friends, coworkers, and more may find it difficult to cope with a loved one receiving a diagnosis for a life threatening illness.
Those whose loved one is diagnosed with a terminal illness may experience what's called anticipatory grief6, where the death is expected or anticipated. This can be just as painful as a sudden loss, and often can be a serious struggle if the patient's illness is prolonged or they go through significant physical changes.
When Gloria Eid's25 father was diagnosed with stage 3 pancreatic cancer and given a 3-6 month prognosis, Gloria went through the difficult process of anticipatory grief. "For me, it was a period of regular questioning and concern. The only family member living at the other side of the country, I would constantly wonder: What can I do from here? Do I stay or do I go? How and where do I spend this time that still feels normal? How long of “normal” is remaining? Will doing this or that cause me regret? The thoughts were not only of losing my dad, but, self-absorbingly, of losing myself. On having to come to terms with my life being irrevocably changed. On figuring out how to strike the balance of accepting what is, hoping that what is may change, while living life “as is” until it does. As much as the anticipatory period is focused on the care of our loved one, it also results in hugely grieving our own lives being changed, without our permission, without our asking."
Understanding and coping with the illness of a loved one can especially be challenging for the children of the patient, who may or may not have a full awareness of death and sickness4.
Parents and family members should take the time to explain what's happening to the child, answer any questions they have, and help them express and process any emotions that may come up. This can be a painful and challenging process, but it's an important part of allowing them to verbalize their feelings and come to terms with the prognosis for themselves. The grief of a child is just as valid as the grief of an adult and deserves to be honored by their loved ones.
When Caroline Wright14 was given a year to live, she and her husband had to determine how to explain what was happening to their two sons. "At first, my husband and I didn't have the words to explain to them what was happening, because we didn't know. It was like trying to describe a hurricane from the eye of a storm. A parenting book given to us by a friend encouraged age-appropriate honesty with children of terminally ill patients. It argued that lying breaks the trust between a parent and a child, and that if I died after telling them that I wouldn't, my children wouldn't be able to find resolution or take advantage of the resilience that comes naturally to them. It made sense to us and suited our parenting style."
There is no perfect coping mechanism or text book way to handle the grief of a terminal diagnosis. Every person and every family handles it differently. Here are a few ways in which individuals and families can find some comfort and help.
Firstly, take the time to process this information. Coming to terms with this prognosis can take a lot of processing and time, and there's no rush. What's important is to remember to not push your emotions aside and try to work with the feelings as they come up. It can be very challenging to deal with, but refusing to acknowledge or process the emotions of grief can make coping with the illness exponentially more challenging.
When Senya15 was diagnosed with breast cancer in 2015, the news came as an absolute shock to the otherwise perfectly healthy, physically active 20-something. Giving herself time to process the shock made a huge difference in her emotional ability to manage. "Some advice I would offer others going through a similar situation is give yourself time. It's ok to take your time to heal, both physically and mentally, from this challenging time. Be patient with yourself and understand it's ok to take it slow."
Find someone to talk to with whom you feel you can be honest about your feelings. If you don't feel you could be honest with your family and loved ones about what you're going through, finding a therapist or counselor to work with can be very helpful to have a listening ear. Counselors who specialize in working with the terminally ill can also help connect patients with resources for planning their end of life needs and work with the patient's family to help them process the loss.
Finding others to talk to who are also terminally ill can help lessen the feelings of isolation and loneliness that many patients face when coping with a life threatening condition.
Support groups24 take place in many hospitals or mental health organizations, or you can simply find an online forum or community where you can discuss your feelings with other terminally ill patients. There are also hotlines available for terminally ill patients through The Samaritans, American Cancer Society, and other organizations that specialize in working with the terminally ill who can help.
Sarah13, a 42-year-old with terminal Motor Neurone Disease, found that through finding community and resources among the terminally ill community, she found a restored sense of hope. "I felt hopeless after my diagnosis, but I've managed to overcome that with support. I've attended my local hospice since 2001 and the staff help me with emotional and medical problems. I believe all difficulties can be solved with the right resources - I've been fortunate to find them. I suppose that I'm trying to say that however bad life appears to be, there is always hope. I feel as if I've been given a window of opportunity, not a death sentence. I'm going to make the most of it."
Have a frank conversation with a doctor regarding what kind of changes you can expect to see as you progress through the disease. Understanding any potential loss of mobility, changes to your physical appearance, or new symptoms you may experience can make it less alarming and stressful when these changes take place.
This kind of information is a lot to process, and it can be difficult to absorb everything the doctor has to tell you. Ask if you can bring a friend or family member with you into your doctor's appointments so they can help keep track of all the information and support you emotionally.
Peter White13, a 57-year-old with terminal Multiple System Atrophy, was most concerned about losing his ability to speak and communicate. "There are things that bother me about having this disease… The idea of losing the ability to speak is hard. Josie and I are writing cards out so I can hold them up to communicate when the time comes."
If you are responsible for providing financially for your family or taking care of other family members, such as children or other ill members of the family, it can be helpful to sit down and create a plan for how your family plans to provide for themselves after your death.
This can help bring closure and peace for both the patient and the family, and remove some of the stress to promote healing.
Helping to create a plan for your final wishes, such as funeral arrangements, can help bring a sense of peace to your final days.
Victor13, a 65 year old biker with terminal prostate cancer, found peace through deciding on personal touches for his funeral. "I've put together a CD of the music I'd like played. It starts with Biker's Prayer, followed by 'I'm Not Alone' by Boney M and then I'd like to go out on 'YMCA' by the Village People - that's an in-joke between me and my mates. It'll be the biggest biker funeral in a long time - I'm friends with loads of other clubs. I imagine there will be one hearse for me and the rest will be bikes. I'd like them to remember me and celebrate my life, too."
The number of tasks that need to be done at the end of one's life can feel like a laundry list of challenging and emotional chores. This can quickly become overwhelming for someone who is already processing through the grief of the upcoming end of their own life.
Try to take baby steps and make small, achievable goals. Remember that there are plenty of resources available to support you through these tasks, and ask for help from loved ones as much as you need.
Finding resources to assist with the needs of managing your illness can be challenging. Reaching out to community services can lessen a lot of the work of managing your treatment and illness.
When Pat20 was diagnosed with bowel cancer, her first concern was not what one might expect. "My main worry was transport: “How will I get to hospital for all these appointments?” My husband is 89 and can drive only in the local area. Our children are all working and I wanted to lessen the impact on them. The local community care service put me in touch with a volunteer palliative care group. The volunteers are marvelous. They drive me to all my appointments, but also offer mentoring, comfort and friendship. I also got some help with house cleaning, which has taken such a burden off me and my husband."
Be proactive about finding a pain management plan. Being prepared for pain ahead of time can make it considerably simpler later down the road as more problems appear. Talk with your doctors and caregivers about how you'd like to manage pain and what kinds of difficulties you can expect as the disease progresses.
Many doctors will prescribe prescription-strength painkillers, but many patients find pain relief with alternative methods, such as yoga, natural supplements, massage, and acupuncture. Discuss these options with your medical team to decide what may be most effective for your particular care needs.
Remember that despite the challenges you're going through, you can still take time to relax and enjoy yourself. Try to maintain your participation in old hobbies, and do things simply for the enjoyment of doing them. Spend plenty of time with family and get out into nature as often as possible.
This may be a great time to try a hobby you've always wanted to try, or splurge on something fun and relaxing that you've never had a chance to try. Get a massage or go to an extravagant restaurant. Even simple activities can soothe distress, such as reading, coloring, and painting.
When Adrian9, a 47-year-old Irish man, was diagnosed with stage 4 lung cancer, the prognosis was clear from the time he was diagnosed that the cancer would not be curable or treatable. While he struggled with it at first, Adrian quickly found that ticking items off his "bucket list" made the time spent near the end of his life turn from dour and depressive to joyful and hopeful. "Yes I am dying, yes this disease is a nasty, brutal, horrific thing, but I'm not dead yet - I'm living and loving and experiencing a wonderful life, and Tim and I are busy ticking off wishes on our list and building memories."
Taking up wellness activities as part of your routine, like journaling or writing, can also relieve some of the distress experienced by terminal patients. You can continue to take care of your body by focusing on eating well, getting as much exercise as is possible, and sleeping as much as you can. Try meditation and taking up yoga as a way to relieve some of the stress you're experiencing and help soothe your body's physical anxiety.
Coping with this is going to be a difficult challenge, and it's going to be much easier if you still take care of your mental and emotional health as much as your physical health. Remember that there are always going to be good days and bad days, and it's okay to have a challenging day. Remember that you still have the opportunity to make every day count.
A support system is crucial for those that are going through a life-threatening diagnosis and a terminal illness. Here's some ways that family and friends can show their support.
Take the time to research their illness2. That way, the burden of educating you about their disease does not fall on the sick loved one.
Try to find a way to talk with someone who has also supported someone with the same condition, or speak with a doctor about what needs may come up in the coming days.
Caregivers experience their own struggle, and should seek to find community among other caregivers of terminal patients for support and guidance.
The American Cancer Society has specific resources for caregivers here: https://www.cancer.org/treatment/caregivers/caregiver-resource-guide.html
When Fiona11, a medical doctor herself, became a caregiver for her terminally ill husband Morgan, she was surprised to find herself feeling unprepared for the challenge. "I was lucky to have some knowledge of what caring for someone who is dying might entail, but whatever I knew as a doctor was a fraction of the real experience. I prepared, though. I read blogs written by other women who had cared for their husbands through brain cancer. I researched the timeline, what might happen, how his death might be, what symptoms may occur. I tried to predict."
A helpful task that a loved one can do for the patient is to help them arrange their final affairs. This can be a painful process for both the patient and the loved ones assisting, but having it taken care of ahead of time can significantly lessen the financial and emotional strain of the patient's family and friends after their passing. Learn about arranging a funeral with little money here.
Some terminal patients may not be ready to address their final affairs, especially if their diagnosis is recent and they're still processing their shock. This is entirely normal, and a patient who isn't ready to be thinking about their final affairs shouldn't be forced into the process. However, many find that making these decisions can help come to terms with the inevitable and make peace with it.
Decisions that are helpful to make before the patient's passing include making funeral arrangements, finalizing their will, cleaning out their house or storage spaces, and writing an obituary5. Those wishing for a religious funeral may want to meet with a clergy member to discuss what they'd like included in the service.
The patient may also want to meet with a funeral home to decide upon the patient's preferences for burial or cremation. Many funeral homes have pre planning options where the patient can select and pay in advance for their funeral options, so as to make things considerably simpler for the family afterwards.
Ask if the patient would like to add anything to make the end of life services special, like creating a special pendant with a photo engraving or custom fingerprint jewelry or creating cremation jewelry with their ashes. Being involved with special mementos to be kept after their death can help patients feel less anxious about their afterlife. You can learn more about cremation jewelry here.
Meeting with an estate lawyer can be helpful for finalizing a will and testament and preplanning any financial concerns with funeral home costs and settling any remaining medical bills.
A lawyer can also help assign the power of attorney to a loved one or family member for patients who anticipate mental decline, such as those with neurological conditions or who may be taking heavy medications that impact their decision making skills.
You can learn more about the benefits of preplanning and prepaying for a funeral here.
"Because his cancer developed so quickly we tried not to put off discussing painful issues," says one wife and caregiver of a terminally ill cancer patient17. "We were lucky enough to be able to talk about most things and since his death, it has been helpful to me to know that I was able to carry out his last wishes, which would have been difficult if they had not already been spoken about as his ability to communicate at the end was negligible due to medication."
You can offer to sit down with the ill loved one and get information like their account passwords, insurance information, and banking information. This can make it considerably easier to manage their affairs after their death and lessen the burden of arranging their estate for the family. Learn more about end of life planning for caregivers of the terminally ill.
For some, having a terminal illness can feel like a full-time job. The stress of constant appointments and physical pain can take over a person's schedule much more than one might expect.
Loved ones can offer to support by providing babysitting so that the patient can attend doctor's appointments, or offer transportation to and from errands. Picking up groceries and prescriptions can also hugely lessen the burden that a terminally ill patient experiences. Transcribing letters to family and friends while they dictate can help ill patients maintain contact with loved ones.
Providing meals, household needs, or cleaning services can allow the patient time and space to get rest and take care of their own needs. Try asking the patient where their biggest needs are, and insist that you're available and willing to help. It can often feel difficult to accept help from others, so be gracious, gentle, and firm about your ability to step in and help with whatever they may need.
Dr. Sarah Winch10 suddenly became the primary caregiver for her husband, Lincoln, when he was diagnosed with kidney cancer at the age of 48. As advice for other caregivers of those terminally ill, Winch offers "If you are a carer, accepting as much help as you can, as early as possible, is vital for you and the person who is dying… When care needs increase, the amount of work required can seem daunting and carers are often emotionally burdened, as well as physically tired." Winch recommends seeking out and accepting any offer of help available to ensure that both the patient and the caregiver have the rest they need to process what's happening in their lives.
When a child is terminally ill, it can be difficult to know how to inform them of their illness and help them come to terms with their prognosis. Using simple, honest terms to explain to them what's happening and ask them about their feelings can help children understand what's happening to them.
Coming up with a simple "wish list" of things they'd like to experience in their final days can help them make the most of the time they have left. You can learn more about coping with the loss of a child.
Being a caregiver of a terminally ill patient comes with its own challenges and struggles. Although you may not be the one who is sick, you still need care. Ask for help from family and friends to support your caregiving efforts, and take the time and space you need to care for yourself.
When Carrie's father21 was diagnosed with glioblastoma, learning to be a caregiver for her dad was a huge adjustment. "Throughout my dad’s glioblastoma journey, I wanted to do everything I could to help him. My dad spent a lot of time in the hospital. When he was an inpatient, I would visit him after work and sometimes before work, too. Being a caregiver is difficult because you feel powerless, as does your loved one. To be the best caregiver, I realized I must also take care of myself. At first, I felt guilty about taking time for myself, but I realized it was necessary. I started going to MD Anderson’s employee gym during lunch breaks and after work to help ease stress and anxiety. When friends or family members wanted to help, I let them come visit my dad so my mom and I could take a break from the hospital. When this happened, my dad got to visit with a loved one, and we got to run errands or take time for ourselves. It was meaningful to him and invaluable for us as caregivers."
There is no "right" and "wrong" thing to say to someone with a terminal diagnosis. Every person is going to have a different relationship with their diagnosis, and is going to feel differently about the responses their friends and loved ones offer.
The best thing a loved one can do is offer compassion and honesty to their terminally diagnosed loved one. Offering closure on longstanding disagreements or conflicts can help them come to peace with their death, such as asking for forgiveness on conflicts you may have shared in the past or thanking them for their companionship and care.
Even simply sharing fond memories you have made together can bring a great comfort to the dying by helping them feel secure that they will be fondly remembered by their loved ones.
Lorna Hurst12 cared for her son Sam through terminal bowel cancer when he was just 17, and through communicating frankly with her son and family, they all found a measure of closeness and comfort towards the end of his life. "Through honest conversations with clinicians about the benefits or otherwise of future treatment, discussing preferences for his ongoing care and early referral to palliative care, Sam was given the opportunity to consider what was important to him and to decide what he wanted to do in the limited time that he had left. As a result, we all felt supported and as prepared as possible when he died peacefully at home, four months after receiving his prognosis. In all aspects of his care - physically, spiritually, and emotionally - Sam died a good death."
Some patients who are terminally diagnosed may still find it uncomfortable to discuss directly with their loved ones, or may find it emotionally overwhelming to discuss and would rather not3. Work with them on the level they're comfortable with.
If they'd rather discuss a favorite TV show or small talk, don't force a difficult conversation on them for your own benefit. Allow them to change the topic of conversation if they seem uncomfortable, and try again another time or ask them if there's a time they'd like to discuss it.
Dr. William Dale23, director of the Center for Cancer and Aging Research at City of Hope, has advice for how to speak with a terminally ill loved one about their illness and prognosis. "Loved ones fear saying the 'wrong' thing, but what patients crave is normalcy. They want people to act normally around them. That includes talking about their day, laughing, telling jokes. If they liked talking about sports before the diagnosis, they probably still do. Loved ones of terminally ill patients need to be careful not to project their own feelings or assume they know what the patient is thinking."
Ultimately, there is no single way that is the best when it comes to coping with a terminal diagnosis. Every patient, family, and prognosis will come with its own challenges, trials, and joys. But remember that no one has to suffer alone, and there are resources out there that can help you along this journey.
As Melinda Welsh22 put in her op-ed for the Los Angeles Times, "I understand that my infinitesimally tiny piece in all this is coming to a close. Letting go will be difficult, but death has its own clock. So I will take solace in the idea that, once gone, I may come to occupy a small space in the hearts of the people who loved me most. And perhaps from there, I will be a source of a few simple reminders: Time is limited. Life is miraculous. And we are beautiful."
May 21, 2021 by Frances Kay
References:
1. "Coping with a terminal illness: End of life care," NHS https://www.nhs.uk/conditions/end-of-life-care/coping-with-a-terminal-illness/
2. "10 Practical Tasks to Help You Deal with a Terminal Illness: Suggestions to help you make the most of the time you have left." Chris Raymond, verwell health. https://www.verywellhealth.com/dealing-with-terminal-illness-1132513
3. "Terminal illness: Supporting a terminally ill loved one." Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/grief/art-20047491
4. "Coping with Terminal Cancer" University of Rochester Medical Center. https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=85&contentid=p07169
5. "Saying Goodbye: Coping with a Loved One's Terminal Illness" Harvard Health HelpGuide. https://www.helpguide.org/harvard/saying-goodbye.htm
6. "When a Loved One is Terminally Ill" Harvard Health HelpGuide. https://www.helpguide.org/harvard/when-a-loved-one-is-terminally-ill.htm
7. "Finding out you are dying." Cancer Research UK. https://www.cancerresearchuk.org/about-cancer/coping/dying-with-cancer/coping-with-the-news/finding-out-you-are-dying
8. "What does terminal illness mean?" Marie Curie. https://www.mariecurie.org.uk/who/terminal-illness-definition
9. "Adrian's Story" Northern Ireland Hospice https://www.nihospice.org/adult-hospice/personal-stories/adrians-story
10. "Having cared for her husband as he was dying, Sarah Winch explains how to do it well" PalliativeCare Australia https://palliativecare.org.au/sarah-winch/
11. "Caring for my beautiful husband as he died and through the days that followed" PalliativeCare Australia https://palliativecare.org.au/caring-beautiful-husband-died-days-followed/
12. "Mum celebrates her son's life while remembering his death" PalliativeCare Australia https://palliativecare.org.au/mum-celebrates-sons-life/
13. "What's it like to know that you are dying? Four people share their experiencing of living with a terminal illness - from a 25-year-old who has learned to love life, to a biker who's angry as hell" The Guardian. https://www.theguardian.com/lifeandstyle/2011/jun/19/living-death-terminal-illness-cancer
14. "Explaining My Terminal Illness to My Young Children," Caroline Wright. https://elemental.medium.com/explaining-my-terminal-illness-to-my-young-children-56b6498cb8be
15. "Stories of Help and Hope: Senyabou B., Diagnosed with breast cancer." https://www.cancercare.org/stories/64-seynabou_b
16. "Stories of Help and Hope: Ekata D., Diagnosed with leukemia." https://www.cancercare.org/stories/92-ekata_d
17. "My soul mate died of cancer," Dying Matters. https://www.dyingmatters.org/story/my-soul-mate-died-cancer
18. "The Last One - Rashpal's Story" Breast Cancer Now. https://breastcancernow.org/about-us/news-personal-stories/last-one-rashpals-story
19. "Personal essay: Comics about living with cancer were born out a desire to communicate how the experience felt for me, writes Teva Harrison" Quill & Quire https://quillandquire.com/authors/2016/03/29/personal-essay-comics-about-living-with-cancer-were-born-out-of-a-desire-to-communicate-how-the-experience-felt-for-me-writes-teva-harrison/
20. "Palliative care stories" Cancer Council NSW. https://www.cancercouncil.com.au/cancer-information/advanced-cancer/palliative-care/stories/
21. "Ten Months: One Patient's Story of Stage IV Cancer" The Oncologist. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5634760/
22. "Op-Ed: 'I have terminal cancer. And I'm dying in a yearish.' Los Angeles Times. https://www.latimes.com/opinion/op-ed/la-oe-welsh-time-i-have-left-20151213-story.html
23. "When You're Living With A Terminal Illness," nextavenue. https://www.nextavenue.org/when-youre-living-with-a-terminal-illness/
24. "Care for any terminal illness - David's story." Saint Michael's Hospice. http://www.saintmichaelshospice.org/fundraising/case-studies/care-for-any-terminal-illness-davids-story
25. "Anticipatory Grief, and Living Life That Feels 'On hold.'" Medium. https://medium.com/@glo_eid/anticipatory-grief-and-living-life-that-feels-on-hold-6672e65f0161