The emotional turmoil that follows after a loved one is diagnosed with a terminal illness is natural and understandable. Given the nature of the chronic disease, it’s crucial to discuss uncomfortable subjects such as end-of-life care and death. However, talking about it would make the conversation a little easier for you and your family.
This blog post addresses terminal illness post-diagnosis steps. We will also suggest some additional resources along the way to prepare yourself for what’s to come. Moreover, you will find many practical details in this guide.
Let’s begin with it:
Facing the Inevitable
When a dear one is diagnosed with a life-threatening illness, we wish the time to freeze. In an Amazon Original science fiction movie called “The Map of Tiny Perfect Things” released this year, time freezes the day the protagonist’s mother is supposed to pass due to cancer. It goes on a loop and the same day keeps repeating itself.
As much as we’d like this to happen, our reality is quite different. We have to learn to move forward in life – a fact even established in the fictional flick! And before that, we need to brace ourselves for the inevitable. How do you ever do that?
Everybody reacts differently. Some immediately swing into action, some cry, and others instinctively deny the fact. Regardless of your effort and coping mechanism, life will continue to go on. You need to seek help – as much as you can – to pull yourself together for the rest of your family.
And there’s a great deal of support you can muster!
- Seek legal and financial advice.
- Arrange for the funeral.
- If all treatments stop working, prepare an end-of-life care plan by consulting a healthcare provider.
- Join support groups and share your grief with people who are undergoing something similar.
Many other terminal illness post-diagnosis steps spread across this guide that will help you cope as the end draws closer.
Managing the Anticipatory Grief
If you’re reading this, you’re most likely familiar with it. Anticipatory grief, an overwhelming sadness that accompanies the news and as events unfold. Friends, family, and the patient struggle to come to terms with it, and rightly so.
They feel a multitude of emotions involving:
Depending on the relationship shared with the patient, you should focus on making the most out of the time that’s left. After all, how you spend this time will make a lasting impression on your memory and possibly the actions in the future.
You can shun the grieving thoughts and focus on the last-resort treatments. You may feel conflicted, guilty, or anxious. However, that would only add to your anticipatory grief instead of helping you deal with it.
The following terminal illness post-diagnosis steps might comfort you:
- Talk with sympathetic family members and friends.
- Join an online or offline support group.
- Read books that help you deal with grief.
Say Your Goodbyes
When you begin even to imagine it, goodbyes can be painful. However, approaching the end of life due to a chronic illness means that you and your loved one have some time to make amends, share your appreciation, and express your feelings for each other.
More often than not, people regret not having enough time or chance to say or do these things due to the unexpected death of their loved one. Ira Byock, a long-time hospice advocate and the author of Dying Well, suggests the following words be exchanged between families and their dying loved ones:
- Thank you.
- Forgive me.
- I forgive you.
- I love you.
Often the patient dying doesn’t find comfort because their loved ones won’t be alright if they let go. You have to see it in you and tell them that you’re ready and that you’d be okay. The shared assurance would help you manage your grief and offer enormous relief to your loved one.
Perhaps, you can fulfil a shared dream or anything that would make them feel a little better.
How to Communicate about Death
It’s probably the most challenging conversation anyone can have. On the one hand, you don’t want to instil fear in your loved one or undercut their will to survive. But on the other hand, you want the communication to be honest because they deserve to know.
To them, it may feel like you’ve given up on the promise of a cure or that you’re abandoning them. However, you cannot let your discomfort, sadness, or anxiety make a poor choice of words. If you approach the conversation carefully, it doesn’t have to be terrible.
This is what clinicians suggest when it comes to talking to terminal illness patients about death:
- Reassurance: Everyone has a different viewpoint about death. Some fear abandonment, and the only way to make them feel better is to offer comfort. No matter what happens, you have to convince them that they’ll be embraced, not abandoned when the time comes. That they will never be alone.
- Empathy: Your loved ones, especially seniors in advanced years, may fear a lot more than just abandonment. They may have some unfinished plans. They may fear losing control or leaving their loved ones, even becoming a burden on them. Most of all, they may dread a painful death. Their physical and emotional plan is only aggravated by fear. While there is little you can do to take away the fear entirely, you can still spend time with them and let them express their concerns. This way, they won’t feel alone, overwhelmed, or consumed with their thoughts. That’s called empathy.
- Honest Conversation: Depending on individuals, some patients diagnosed with a terminal illness may not fear the end as much compared to others. All they might want to do is talk and have an honest, open conversation with their friends and family.
Approaching the Conversation
We have figured out the things to talk about in the previous section. But how do you go about the conversation? Not every terminally ill person would like to talk about death. How do you then figure out the right time?
At this point, you must realize that your elderly loved one may not necessarily prefer talking about death. All they might need to know is that when they do feel like talking about it, you’ll be by their side.
According to psychiatrist Elisabeth Kübler-Ross, you can open the door to a difficult conversation by asking simple questions like:
“Is there anything you want to talk about?”
“How can I help?”
“What do you worry about?”
Depending on the elderly’s receptiveness and comfort level, you can ask more specific questions like:
“What are you wondering about?”
“What would be a good death?”
Here are other terminal illness post-diagnosis steps that may help:
- Seek hospice advice: Social workers trained in hospice care are equipped with experience and resources that would help you and your family grapple with the grief surrounding death.
- Ask for spiritual guidance: Depending on the faith and beliefs of the patient, you may seek counsel from religious or spiritual leaders. At times, it offers comfort to those who believe. As the illness progresses, many people find peace and comfort in their faith.
- Please consult a doctor: It’s important to know what to expect as the symptoms unfold. Consulting your doctor to gather all the information necessary somewhat prepares you for it. That way, you can talk about ways to ease the fear and pain of your loved one. However, some doctors may limit themselves to educating you about the disease but may not necessarily talk about death in general. In contrast, others perceive death as a failure and would try everything in their power to help you.
- Let it go: Most patients and their families experience episodes of denial through the course of the life-limiting disease. Here, it’s essential to know that talking or even thinking about death is difficult. At this point, let your elderly finish the conversation. Let them talk about it or hold on to their fantasies or comforting thoughts. All you can do is be there for them. That’s the most essential part.
You will find plenty of resources to deal with the subject matter here.
Other Practical Aspects
There are other pressing matters you need to resolve when the elderly reach the terminal stages:
- You need to take care of advance care directives such as a power of attorney and a living will when the elderly would not be physically or mentally able to make decisions. Make sure you have additional copies just in case.
- At one point, you will need to decide whether the senior needs life support options such as mechanical ventilation, artificial nutrition, intravenous hydration, and hemodialysis. A doctor would provide the best advice.
- Another factor to consider here is insurance coverage. In 45 states across the U.S., hospice care is covered under Medicare for up to 6 months of prognosis.
By following the terminal illness post-diagnosis steps laid out in this blog post, you can ensure maximum comfort and peace of mind for your loved one.