A serious illness impacts both the patient and members of the family. On a certain level, everyone “has” the illness. The whole family is in it together.
With this illness come many losses. And threats of potential losses. Fortunately, there are ways to ease the distress of difficult emotions.
Below are some strategies to help you get a sense of what is “normal” in the context of serious illness, and when you would be wise to get help. If you have questions, our palliative care service can be reached at 1-877-352-6200 toll free or 724-352-6200 locally.
Losses for the patient
Of course there is the physical pain or discomfort of the disease. But the person with the illness is also likely to experience strong emotions around:
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- Loss of independence
- Loss of previous roles
- Loss of energy
- Loss of social contacts
- Loss of future dreams
- Loss of faith or purpose
Losses for family caregivers
Family members experience many of these same losses, but from a different perspective. Even though caregiving can create opportunities for very tender moments, it can be very stressful.
And no matter how much you love someone, there honestly are sacrifices. Sometimes there are resentments, frustration, and anger. And then comes the guilt.
Caregiving also brings family systems to the forefront. Old hurts and family “baggage” frequently reappear and make caregiving even harder.
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No such thing as a wrong emotion
Reactions run the gamut
Sadness is a common reaction to loss. But so is anger, fear, anxiety and frustration. Remorse over past decisions and actions. Worry and guilt about “being a burden.” Even jealousy of those with better health. These common reactions don’t have to be logical. They are, however, very real. And they can be extremely distressing.
Sometimes these emotions are focused inward. Sometimes they get projected outward onto others.
It helps to simply know that all of these feelings—sadness, anger, fear, resentment, guilt and regret—are normal. Whether you are the person with the illness, or a family member. They may be uncomfortable, or not seem fair. And if left unattended, they can be destructive. But they are not bad in and of themselves. They are simply warning signs that something is out of balance. A serious illness is an extreme stressor, for everyone. It definitely throws a family out of balance for a while.
How to know if a reaction is destructive?
If it takes up a larger than usual percent of your awareness, and lasts for several weeks, then it’s time to pay attention. You might feel “Of course I’m depressed, this is depressing.” That’s true. But it doesn’t mean that one needs to get caught in the mire.
Clues that your emotions are in need of attention might be:
- they are getting in the way of doing what you need to do;
- they are blocking your ability to find moments of joy in life.
Some of the symptoms of depression may also be caused by the illness, for example sleep problems, memory issues and shortness of breath. Working on the emotional side, however, can help reduce those distressing physical symptoms. Our body, mind, heart and spirit are all inter-connected.
Talk of suicide
This is absolutely a red flag. Even if it’s been waved a thousand times before in your family dynamic, it is a call for help. You don’t have to handle this alone. Reach out. Our team of palliative care professionals can help! Give us a call at 1-877-352-6200 toll free or 724-352-6200 locally.
What are your hunches telling you about any difficult emotional reactions? What would trigger you to seek more help?
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Most of us think of depression as sadness. Indeed, feelings of powerlessness lead some people to grief. But others rev their engines by getting angry. That fire feels better, more empowering. At the root of it, however, is sadness at the losses, or potential for losses posed by the disease.
Depression is treatable
Even under difficult circumstances, life does not need to carry that overwhelming and sinking feeling that comes with depression. There are things that can be done to help ease depression. And the sooner treatment is started, the greater the chance of a beating the depression.
Signs of depression
Classically, if a person has experienced four or more of these symptoms nearly every day for the last two weeks, there is a high likelihood of depression:
- fatigue, listlessness, lack of energy
- inability to remember, concentrate, or think clearly
- lack of motivation
- no joy in activities one used to find pleasurable
- withdrawal from others
- changes in eating patterns (eating more or less than usual)
- changes in sleeping patterns (sleeping more or less than usual)
- an increase in the use of cigarettes, alcohol, or other mood-altering substances
- feelings of sadness and bouts of crying
- feelings of hopelessness or despair
- feelings of worthlessness
- feelings of guilt
- thoughts of suicide
Talk with the doctor
It is not difficult to see how a serious illness itself might bring about many of these symptoms! The physical signs could well be things a patient would experience from his or her disease. Nevertheless, it’s worth checking to be sure there is no depression added on top of the condition. If there is, these symptoms can be lessened, which leads to a better quality of life. The earlier treatment is started, the better.
If feelings of hopelessness or worthlessness are coming to the fore, it’s especially important to contact the doctor. It becomes even more urgent if conversations lean toward guilt about being a burden, or thoughts of suicide. Emotional suffering is every bit as painful as physical suffering. Your health care provider will help you find ways to fix it.
If you as the caregiver are experiencing four or more of these symptoms, let your doctor know. Your health and well-being are every bit as important as the person’s you care for.
Depression is not inevitable
Depression is a condition that can and should be treated. By addressing depression head on, you can free up more energy to focus on the other tasks before you.
If depression seems to be in the picture, what are the barriers to getting treated? How might you overcome them?
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Beyond depression, serious illness brings uncertainty for everyone involved. Who knows what the future will bring?
- Will the treatment be successful?
- How difficult will the side effects be?
- Have we made the right decision?
- What if this is a terminal condition?
- Will dying be painful?
- Is there an afterlife? And if so, is it a pleasant one?
The stakes are so high with a serious illness, fear and anxiety are regular companions for the person with the disease, and for family members.
Anxiety often pairs with depression, but not always. Many of the symptoms are the same. Yet there are a few differences. And the treatments can be different.
Symptoms specific to anxiety include:
- Near-constant worry and nervousness
- Feelings of powerlessness
- A sense of dread
- Shortness of breath or hyperventilation
- Sleep problems
- Racing heart
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While there are medications, they can backfire and cause even more agitation. Talk with your health provider to see what makes the most sense for you. The good news is that anxiety responds very well to learning more from experts and talking about your concerns.
Easy and effective strategies
Whether you are a person with a serious illness, or a family member, there are things you can do that ease the pain of difficult emotions. Our palliative care team can help.
- Communicate your fears. Even if it’s scary to talk about, most people feel better when their imagination can be reined in with facts. Talk to your health provider and ask your worst case scenario questions. Getting them out on the table can take away some of their punch.
- Learn more about the condition. Fear of the unknown is a huge factor with anxiety and depression. Knowing what to expect can be immensely reassuring. Plus, knowing what you can do to reach your goals of care helps to counteract feelings of powerlessness. Again, a conversation with the doctor or nurse will be very helpful.
- Support better sleep. Sleep problems are intimately related to both depression and anxiety. In fact, people who have trouble sleeping often become depressed or anxious. Everyone feels better, and sees the world more clearly when they feel well-rested. Check out our article on fatigue for useful tips.
- Indulge in simple pleasures. The things that bring pleasure now may be different from what they were even just a few months ago. But make note of them. Practice random acts of joy. Seriously! One of the best cures for depression, even in the face of serious illness, is to intentionally engage in pleasurable activities 2-3 times a day. It can be a phone call with a friend, eating a favorite food, taking a walk in the garden. Stick to the simple pleasures, and activities that are overall healthy for you.
- Discuss any spiritual concerns. Some of your anxiety may relate to existential questions, like “Why me?” or “Why does God allow suffering?” Spiritual distress is very real. And it can provide significant barriers to healing. You may start to question your faith. Maybe there are regrets about past mistakes in life and how that might impact life after death. Our chaplains are well-versed in helping people come to terms with these spiritual questions. They do not push a particular faith belief. Rather, they ask questions and encourage you to look inward to your own beliefs to discover what your heart and soul tell you is true. If you would like help with spiritual questions, give us a call at 1-877-352-6200 toll free or 724-352-6200 locally.
Projects you might find valuable
- Conduct a life review. A life review is a worthy activity anytime you have a few decades under your belt. It helps to put your life into perspective. It doesn’t have to be long. And it doesn’t have to be written. Talk into a recorder, or video tape reminiscences as they come up. And don’t feel you have to start at the beginning and move chronologically. Concentrate on highlights or crossroads in your life, beginning with those that feel the most meaningful to you now. As you reflect on your life, the things you are proud of will come more into focus. And you may gain new insight into those bumpy spots in your journey. Perhaps some of your emotional distress has to do with unfinished business? A life review might make it clear what you want and need to do to resolve any relationship issues.
- Make amends as needed. All families have conflict now and then. Families simply are messy. There are sore spots and unanswered questions. After a life review you may realize you want to communicate with someone from your past. Maybe forgiveness is in order. Or you need to say thank you. Even if the person has already died, it’s amazing how healing it can be to write a letter.
- Create an ethical will. A serious illness causes everyone to look at their priorities. And certainly it makes one think about what they have to offer succeeding generations. Consider it a legacy. Not in the sense of money or gifts. An ethical will is a way to share your wisdom, giving the bequest of lessons learned and loving insights for those who will follow after you in the family. It can be written, but like a life review, it can be dictated or video recorded.
- Reflect on your strengths. Think about times in your past when you encountered difficulties and feel that you handled them well. What personal qualities did you draw upon? How did you manage your stress in a healthy way? How can you apply those to the current situation? In the same vein, are there coping strategies you used in the past that were not as helpful? What would you like to do differently this time? How can you support yourself to reach for a different strategy?
Which of these approaches seem the most realistic for you? Any barriers? How might you overcome them?
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