Hearing that your illness cannot be cured is a devastating experience. Rather than using the dreaded words “terminally ill”, the Koreans describe it in a more compassionate way, namely as “running out of time”. As a matter of fact, all of us are all running out of time, and we don’t know when our last day will be.
The dreaded diagnosis:
When an illness such as cancer does not respond to treatment anymore and the patient’s condition continues to deteriorate, doctors refer to terminal or end-stage cancer. For doctors it is difficult to make a time-limiting diagnosis and even more difficult to inform the patient that he or she is likely to run out of time much sooner than expected, which can be days, months, or years, depending on the severity and type of illness.
For the patient, the news is devastating and may feel like receiving a death sentence.
Emotional issues to deal with:
There is no right or wrong way to feel when you hear that you are running out of time. You will probably feel numb at first and unable to take in the news. Over time it is normal to experience a range of emotions, such as shock, denial, helplessness, sadness, fear, isolation, frustration, depression, anxiety, even anger, and hopefully acceptance as well. One may not experience all of these feelings and not in any particular order.
We are all different and not everyone would want to talk about the emotional rollercoaster they are going through, although talking about your worries and fears when you are ready to do so, may help to make them easier to deal with. Apart from your own feelings, the people close to you have to deal with their own feelings about your time-limiting diagnosis. Discussing your feelings with an independent person such as a counsellor may initially be easier, until the rawness of your feelings and the feelings of people close to you have worn off to some degree.
You’ll probably wonder about things that seem overwhelming, such as how much time you have left, how and when your body will change, and the effect it will have on your quality of life. The feeling of being unable to cope with your situation may not go away and you may lack the emotional energy to get much done. While such feelings are normal, how you will react to them and manage them will be unique to you.
When you are up to it, an honest and open discussion with your loved ones about how you are feeling and what you are experiencing, would also allow them to express their thoughts and emotions as well. This can help improve the emotional support that you and your loved ones will need in the time ahead.
Keep in mind people may not know how to respond, or what to say to you, or be afraid of saying the wrong thing, and may even avoid you initially. Give them time to process your situation.
Practical issues to deal with:
Apart from creating emotional support, the next focus should be to create a practical support network. Things to consider are, for example, who can take over some of your responsibilities when your become unable to do so, or you may simply wish to let go of them to devote your time elsewhere.
Now is the time to process some practical issues that need to be done.
- Process all the required paperwork to put your financial, personal, and legal affairs in order, if they are not up to date.
- Finalize your will and gather all the documentation that the executor of your estate would require.
- Compile contact details of your employer or pension fund, with an indication of the documents they would require processing a death benefits claim.
- Gather Insurance policy documentation and contact details.
- Compile banking documentation and contact details.
- Draw up a durable health care power of attorney, in which you nominate someone to make medical decisions on your behalf if you become unable to do so.
- Create a living will which spells out the treatments you want or don’t want towards the end of your life.
- Preplan your funeral or memorial service with your loved ones so they are aware of your wishes and to make it easier for them to carry out your wishes around your final disposition, for example a traditional funeral service, or a private cremation and memorial service later.
- Learn as much as possible about your illness and its probable course to better understand what is happening to you, and don’t be afraid to ask questions, after all, this is your body, your life.
- Your energy levels will probably drop, and you may feel fatigued, so it is time to nurture yourself and get enough rest and lighten your schedule. It is time to eat balanced meals.
- Consider that you may need full-time care later as the illness progresses and possibly move to a hospice facility, and plan accordingly with the people close to you.
- Make a list of the passwords on your accounts, computer, and phone, and provide them to a trusted person as well as to the executor of your estate, otherwise your phone and computer may be rendered useless without passwords.
- Make sure a reliable person close to you have ready access to money, as there are expenses to be paid immediately after a death occurs, for example the funeral or cremation costs, and any outstanding bills. Try not to leave your family with the burden of unpaid medical and other bills.
- Try to find a support group for people with the same condition, as you’ll discover you are not alone in this predicament.
Make the most of your time:
Getting your practical affairs in order will give you peace of mind and allow you to spend more quality time with the people close to you. Take some time to do things you enjoy and are most important to you, such as:
- Tell yourself that it is okay to stop being concerned about and take time for yourself.
- They say that hope is the strongest human emotion. Find your hope in your tomorrows, the next visit of someone dear to you, the next thing you would like to do, in your spirituality, and in finding meaning in your life.
- Decide how to spend the remainder of your days with purpose and intentionality.
- Spoil yourself with therapies such as massages and aromatherapy.
- Spend time in nature and enjoy the surroundings, fresh air, and sunlight. There is truth in the saying “nature heals” in helping you deal with emotional issues. Watch the sunset and find joy in small things like listening to the birds sing.
- Prioritize relaxation and deep rest.
- Make a point of telling the people close to you the things you want them to know, for example that you are proud of them, grateful for their support, and that you love them. Ten to one they’ll respond in kind.
- Keep in mind the most memorable moments of our lives are not only found on exotic vacations or events but are found all around us every day.
- Enjoy being with your friends and family, surrounded by their precious love and friendship.
- Depending on your health and mobility, do some of the things on your bucket list. For example, travel somewhere you have always wanted to, attend a special event, connect with old friends, see a favorite movie again, start reading a book by your favorite author.
- If religion or spirituality is important to you, you may find some comfort and spiritual peace pursuing it.
- Talk with family and friends about times you have spent and memories you have made together. In this way you will be honoring your life together, which they will cherish.
- Say goodbye to the special people in your life. Most people don’t have this opportunity due to sudden and unexpected death. It may give you a sense that your life is complete.
Effects on people close to you:
As your loved ones attempt to cope with the thought of losing you, they will also experience many strong emotions. Apart from intrusive thoughts and the inability to sleep, they may also experience anxiety attacks and feel overwhelmed and inadequate.
Nowadays it is fairly common to lose a loved one to a lingering terminal illness, rather than to a sudden death. As a result, death has become less of a sudden unexpected event and has rather become a process, which starts with the diagnosis, then a period of treatments, eventually ending in death.
Sad as it may be, on the positive side your loved ones have much longer to face the prospect of death and have time to say their goodbyes. The grieving process is also different, as the prolonged grief includes the person that is slowly slipping away.
Generally, there are five stages of grief which do not simply end with one stage and start with another, as family members may have to deal with issues related to more than one stage at any given time.
- Crisis: The diagnosis disrupts the equilibrium of loved ones and creates a crisis to deal with. The most common initial reaction is anxiety, such as how long before the patient’s time runs out and uncertainty of what to expect and what to do.
- Unity: The reality of the diagnosis and impending death of a loved one usually has the effect of pulling family members together. The needs and care of the patient become paramount and family members have different roles to play, for instance some dealing with emotional issues and others dealing with practical issues.
- Upheaval: When the process of running out of time drags on for some time, the unity experienced in the previous stage starts to wear thin, as the lifestyles of everybody involved undergo significant changes. They may also experience mixed feelings as the patient’s quality of life slowly deteriorates.
- Resolution: As the patient’s health deteriorates, family members may experience more memories, both good and bad of past experiences shared with the patient. It provides an opportunity to resolve longstanding issues and heal wounds. It also redefines everyone’s role in the family.
- Renewal: This stage starts with the funeral and with celebrating the life, as much as marking the loss, of the family member who have passed away. This is again a time of mixed emotions, characterized by both sadness and relief. This is a time for remembrances and revitalizing family relationships and traditions. It is also a time for looking ahead.
Conclusion:
After the initial shock of the diagnosis, try to deal with the emotional stuff first, then tackle the practical stuff, then find moments of joy and make the most of the time that is left.
After all, our place here on earth is leased, not owned. We are all running out of time, some just sooner than others.
References:
Running out of time. Published 19 September 2023. Blog by Dr Ben Kim. (www.drbenkim.com)
Coping with a terminal illness. Reviewed 23 August 2023. National Health Services. UK. (www.nhs.uk)
10 Practical tasks to help you deal with a terminal illness. Updated 20 February 2020. Verywell Health. (www.verywellhealth.com)
Finding out you are dying. Reviewed 22 March 2022. Cancer Research UK. (www.cancerresearchuk.org)
Processing & accepting your terminal diagnosis. Published online. Hospice Basics. (www.hospicebasics.org)
Completing your life. Published October 2022. Cancer.Net. American Society of Clinical Oncology. (www.cancer.net)
Serious, chronic, or terminal illnesses – tips for patients and caregivers. Updated 3 July 2023. Anxiety & Depression Association of America. (www.adaa.org)
The five stages of family grief: Saying goodbye. Updated 29 March 2023. Help Guide.Org. (An independent nonprofit organization, in collaboration with Harvard Health.) (www.helpguide.org)
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