The Dying Process
Serious Diagnosis
Receiving a serious diagnosis is devastating. The future becomes a huge question mark. All our normal defenses fall to the side. Even though we never know what the future holds, we plan and act as if we are in control. This changes once a serious diagnosis is given.
What to Expect
Depending on the diagnosis, your doctor should be able to give you a prognosis; her/his best guess about how long you (or your loved one) have to live. This can be scary, and rarely are doctors exactly right. But having an idea of how much time you have to live is very helpful. There will almost always be various treatments that can extend life. The problem is, they may challenge your quality of life as well.
Quality of life is unique to each person. What gives your life meaning and purpose? If you are vomiting all the time and losing weight, is this worthwhile? Or, if you don’t know who you are or who your loved ones are, is it time to stop treatment? Only you can answer these questions. Try to think about what is most important to you and let that be your guide.
For example, I want to be able to communicate with my loved ones, if at all possible. That may mean writing if I can’t speak. Or being able to hold their hand and nodding yes or no. Sometimes being able to blink once for “yes” and twice for “no” is still communicating. What’s important to me, is that I still have the ability to be in relationship with others.
If a person is in a coma, doctors should be able to tell you how likely it is that they will recover. It might be important to ask if “John” will be who he was before this happened. Doctors can give you their best guess. There is still so much we don’t understand about the brain and the body.
Evidence shows someone in a coma can hear. Talk to them. Let them know you are there. Offer any words of encouragement you can. Even if you cry, tell them that it’s because you care so much. You can touch their shoulder or hold their hand. Touch is another way of reassuring a loved one that you are with them. Avoid having lots of difficult conversations in their presence. There is always hope in these situations. Even if that hope is simply that they are comfortable and know they are loved. That is sufficient.
Most families want to know if their loved one is in pain. This is often their primary concern. Sometimes, we wonder if our loved one is suffering. This is different. It involves a deeper level of pain; that is, an overarching experience of emotional and physical pain. You need to know if the doctors are giving adequate pain medication and/or alleviating awareness if the situation is dire. There are so many medications and you can advocate for your loved one if you sense they are not comfortable.
Once your loved one is home, feel free to update them on what you heard from the doctors. Families often protect one another. This is normal but can interfere with good communication. Ask them what they want to know.
You can always write down questions that remain for your next doctor visit. Some doctors have assistants who help field questions and can be available by phone or email. Be proactive. This time is already overwhelming. You can help by better understanding what’s happening or what to expect.
Family Meetings
Family meetings can be very important. If you feel like you need to get everyone on board with what’s happening, ask the nurse or doctor if you can have a family meeting. Often, using cell phones to include those who are not local is an easy way to include everyone.
At the meeting, try to have one person from the family give input. This can include what you understand so far and what you think your loved one would want. If you don’t understand what the doctors are saying, tell them. They should be able to explain things to you. That’s their job.
Grief
In the beginning, anticipatory grief is happening. Whether you admit it or not, your mind is planning what might happen to help prepare you. Some of us think of the worst-case scenario. Others might only go so far. All of us are thinking, “What if?” It can be helpful to become aware of these thoughts and to consciously allow yourself to process what you think might happen and how you’d respond.
As you walk through your grief, you will feel a rollercoaster of emotions. Some days, it will be difficult to see any good, positive things happening. Other times, you’ll be able to do your normal routine. Kubler-Ross gave us five emotions she used to help describe grief. The problem is, many people believe they will go through each of these in stages. That’s not how it happens. Denial will mix with anger which can move to depression. Bargaining is not really a stage but a negotiating you do with God or the universe.
Grief is any response to loss. And yes, you are grieving before someone dies. A bad diagnosis is a loss. It dashes hopes you had for a better outcome. Not being able to tolerate chemo is a loss. Losing hair is a loss. The truth is, we experience loss regularly, but it isn’t until it’s a bigger loss that we really take notice.
The most important thing in your grief journey is being able to share your thoughts and emotions with someone who can listen. That may be hard to find. Many well-meaning friends and family find it difficult to really listen. They may want to give advice or minimize your feelings. It makes them feel better. Rarely does it make you feel better.
If you feel stuck in any emotion, it will be important to either seek out a professional or someone who’s been through a loss. They get it. You will know if they are able to support you when you talk to them. If they flip to talking about their loss all the time, it’s too soon. If, however, you feel truly heard and understood, you’ve found a good person to share your feelings with. Good for you.
In the hospital, there should be chaplains available. Everyone thinks chaplains are religious folks who just pray. Chaplains have gotten lots of training in how to listen. They will never preach or give advice or make you feel uncomfortable. Chaplains are there to help support you. They let you take the lead.
Make sure you are able to talk freely about this experience. It will help you to cope as you try to support your loved one. If you are the decision-maker, you may need help getting all the information to do what’s best. Try to find out what your loved one wants before you’re in a crisis. You can fill out an advanced directive. What’s most important is the conversation.