Pulmonary fibrosis is hard on everyone involved. So what do we need to know about caring for these patients? What can the caregiver really do to help their loved one with this terminal disease? When is outside help needed? Who and where do you get this help from? The answer to these questions are not always easy to hear. Often your doctor does not want to face that he is loosing another patient to this disease. We will cover these answers and ask that you and your caregiver discuss each topic early in the disease process.
Grief is real for the patient and caregiver. Accepting the diagnosis of pulmonary fibrosis is difficulty. If pulmonary fibrosis had been called cancer, we would probable accept it differently. Truth is: pulmonary fibrosis is worse. If you google chemotherapy drugs, the list will go on for what seems like forever. However, if you google medications for pulmonary fibrosis treatment, there is only two major medications listed. (Esbriet and Ofev) So as a patient with pulmonary fibrosis, you only have two major options for medical treatment. In some cases transplant is possible but so many patients for one reason or another do not qualify. For this reason patients and caregivers go through the stages of grief. “The 5 stages of grief and loss are: 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. People who are grieving do not necessarily go through the stages in the same order or experience all of them.” Words from Julie Axelrod. I would like to refer you to her blog on grief to learn more.
Grief has no time line or pattern. Patients, caregivers, spouse, children and friends can go through the grieving process. Today we want to focus on the caregiver. Much of their frustration comes from not being able to control the situation. Most want to push, encourage and even pressure the IPF patient to go to rehabilitation, wear oxygen, and/or take medication that often make them feel sick. He/She watches a situation without any form of control. They may go through the stages of grief several times. It is natural to feel angry, frustrated, exhausted, alone or sad. Caregiver stress — the emotional and physical stress of caregiving — is common.
People who experience caregiver stress can be vulnerable to changes in their own health. Risk factors for caregiver stress include:
- Being a female, as most caregivers are women.
- Having fewer years of formal education, non medial professional
- Living with the person you are caring for
- Social isolation
- Having depression
- Financial difficulties
- Higher number of hours spent giving care
- Lack of coping skills and difficulty solving problems
- Lack of choice in being a caregiver
Signs of caregiver stress
As a caregiver, you may be so focused on your loved one that you don’t realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:
- Feeling overwhelmed or constantly worried
- Feeling tired most of the time
- Sleeping too much or too little
- Gaining or losing a lot of weight
- Becoming easily irritated or angry
- Losing interest in activities you used to enjoy
- Feeling sad
- Having frequent headaches, bodily pain or other physical problems
- Abusing alcohol or drugs, including prescription medications
Too much stress, especially over a long time, can harm your health. As a caregiver, you’re more likely to experience symptoms of depression or anxiety. In addition, you may not get enough sleep or physical activity, or eat a balanced diet — which increases your risk of medical problems, such as heart disease and diabetes.
Strategies for dealing with caregiver stress
The emotional and physical demands involved with caregiving can strain even the most resilient person. That’s why it’s so important to take advantage of the many resources and tools available to help you provide care for your loved one. Remember, if you don’t take care of yourself, you won’t be able to care of anyone else.
To help manage caregiver stress:
- Accept help. Be prepared with a list of ways that others can help you, and let the helper choose what he or she would like to do. For instance, one person might be willing to take the person you care for on a walk a couple of times a week. Someone else might offer to pick up groceries or cook for you. Allow others to stay with your loved one while you take time for yourself.
- Focus on what you are able to provide. It’s normal to feel guilty sometimes, but understand that no one is a “perfect” caregiver. Believe that you are doing the best you can and making the best decisions you can at any given time. Word of cautions: Your loved one, may become difficult, speak sharply, or even hurt your feelings. Remember they are frustrated with needing to depend on you for their care. Stepping away and taking a break is okay.
- Set realistic goals. Break large tasks into smaller steps that you can do one at a time. Prioritize, make lists and establish a daily routine. Begin to say no to requests that are draining, such as hosting holiday meals, keeping the grandchildren, etc.
- Get connected. Find out about caregiving resources in your community. Many communities have classes specifically about the disease your loved one is facing. As PF is not wide spread, any caregiver support group can be helpful. Caregiving services such as transportation and meal delivery may be available.
- Join a support group. A support group can provide validation and encouragement, as well as problem-solving strategies for difficult situations. See if your church has support groups for loss or grieving members. People in support groups understand what you may be going through. A support group can also be a good place to create meaningful friendships.
- Seek social support. Make an effort to stay well-connected with family and friends who can offer nonjudgmental emotional support. Set aside time each week for connecting, even if it’s just a walk with a friend.
- Set personal health goals. For example, set a goal to establish a good sleep routine or to find time to be physically active on most days of the week. It’s also crucial to fuel your body with healthy foods and plenty of water.
- See your doctor. Get recommended immunizations and screenings. Make sure to tell your doctor that you’re a caregiver. Don’t hesitate to mention any concerns or symptoms you have.
It may be hard to imagine leaving your loved one in someone else’s care, but taking a break can be one of the best things you do for yourself — as well as the person you’re caring for. Some times insurance will assist with the cost of respite care. Most communities have some type of respite care available, such as:
- In-home respite. Health care aides come to your home to provide companionship, nursing services or both.
- Adult care centers and programs. Some centers provide care for both older adults and young children, and the two groups may spend time together. This can be good for your loved one as well. They will meet others in like situations and get involved in crafts, games or reading with others.
- Short-term nursing homes. Some assisted living homes, memory care homes and nursing homes accept people needing care for short stays while caregivers are away. As the caregiver allow yourself to take short breaks from your loved one. It is best for both of you.
The caregiver who works outside the home
Nearly 60 percent of caregivers work outside of the home. If you work outside the home and are feeling overwhelmed, consider taking a break from your job. Employees covered under the federal Family and Medical Leave Act may be able to take up to 12 weeks of unpaid leave a year to care for relatives. Ask your human resources office about options for unpaid leave.
You aren’t alone
If you’re like many caregivers, you have a hard time asking for help. Unfortunately, this attitude can lead to feeling isolated, frustrated and even depressed. This is not healthy for the caregiver or the patient.
Rather than struggling on your own, take advantage of local resources for caregivers. To get started, contact your local Area Agency on Aging (AAA) to learn about services in your community. You can find your local AAA online or in the government section of your telephone directory. As your doctor for local agency to help give you the breaks you need to take care of yourself.
Praise yourself for being a caregiver. Reward yourself with time away, accepting help, getting involved with support groups and taking care of yourself. Remember you are not “perfect” but your actions are acts of love. You can not do it alone. Ask for help and accept offers to help. You are not alone, there are other caregivers looking for caregivers just like yourself. Reach out to them.
Just in case, someone has not told you today, “thank you, for all you do”.