Preparing yourself for the grieving process How to cope as your loved one nears the end stages of IPF
3 As your loved one nears the end stages of IPF, it s important that you be there for him or her as much as you can. Talk with your loved one. Listen to his or her wishes, fears, and concerns. Your loved one is going through a lot both physically and mentally. Providing your loved one with comfort, support, and love is the best way that you can help. Make sure he or she is as comfortable as possible, and ensure that his or her symptoms are properly managed. In some advanced cases, you may want to consider hospice care so that your loved one can receive comprehensive support around the clock. Table of contents Helping your loved one through this difficult time... 4 Considering hospice care... 6 Making difficult decisions...7 Preparing yourself for a loss... 8 Symptoms of grief... 9 Five stages of grief...10 Taking care of yourself... 12 Seeking help... 13 Tending to personal affairs... 14 Reaching out for support... 15
4 5 Helping your loved one through this difficult time The goal during this time is to make sure your loved one is as comfortable as possible. The focus of care should be on reducing pain, symptoms, and emotional stress and may include: Providing everyday care Your loved one may no longer be able to do routine activities on his or her own, like bathing, feeding, toileting, or dressing. Helping to manage symptoms It is important to offer as much comfort as possible. Look for signs of pain or discomfort and tell your loved one s doctor right away. Offering emotional support Something as simple as keeping your loved one company or holding their hand can help. You can also reminisce about the past and assure them that you will honor their final wishes. Your loved one may also have fears of dying or feeling pain. It is important that you listen and assure him or her that passing will be peaceful and dignified. Caring for your loved one at this stage is challenging and you may need help.
6 7 Considering hospice care Making difficult decisions Although the details may vary from country to country, hospice care offers support and care for patients and their families in the end stages of disease. The goal is to make sure the patient lives as comfortably as possible and keeps his or her dignity through death. Hospice care also offers emotional support to the caregiver and family. A team approach The hospice team is made up of many different people, such as your regular doctor, a hospice doctor, nurses, social workers, clergy, counselors, and home health aides. They work with you and your loved one to make a care plan that meets your individual needs. When hospice care is in your home A family member acts as the primary caregiver, supervised by the patient s doctor and hospice medical staff. The hospice team makes regular visits and provides extra care and services, such as help with personal care needs. The staff members are on call 24 hours a day, seven days a week. You may need to make some difficult decisions as your loved one nears the end of life. These decisions are hard and they can take an emotional toll on you. It s important to talk about these issues together, so you can understand his or her wishes. This way, you are prepared to answer questions and make decisions on their behalf. Decisions about whether to provide life support can be the most distressing, including: Artificial nutrition and hydration using tube feeding and/or intravenous fluids for necessary nutrients Cardiopulmonary resuscitation restarting the heart if it stops beating Mechanical ventilation (intubation) using an assisted breathing machine when the lungs have stopped working If you are thinking about taking care of your loved one at home, ask yourself these questions: Do your loved one s wishes for end-of-life care include staying at home? Is qualified support available to ensure 24-hour care? Are you able to have oxygen supplies and a hospital bed, wheelchair, and bedside commode in your home? Are you able to lift, turn, and move your loved one? Can you meet your other family and work responsibilities as well as your loved one s needs?
8 9 Preparing yourself for a loss Symptoms of grief You will be focused on caring for your loved one, but you need to care for yourself during this time as well. You have been and will be going through a lot of mixed emotions. Remember that these feelings are natural reactions from your body. You will probably have fears about your loved one dying. You may feel comfortable sharing these feelings with him or her, or with a close friend, family member, or counselor. It can help to talk about how you are feeling. Understanding your grief Grieving is a normal, natural healing process. It is your body s response to experiencing the loss of a loved one. The reality of your loss may not set in right away it may come in different stages. Emotional milestones may be especially difficult to cope with, such as birthdays and holidays. Understand that everyone grieves differently there is not a right or wrong way to grieve. Everyone is different and will heal at a different pace. It s important not to compare your feelings or reactions with those of others. Grieving is about your personal recovery after losing your loved one. Everyone handles a loss differently, so don t overanalyze how you act or feel, and don t compare yourself to others. Grief can take many forms Some common symptoms of grief include: Crying Sadness Feeling weak or fatigued Lacking energy or feeling exhausted Loss of appetite Eating too much Trouble sleeping Everyone grieves differently Feeling aches and pains Self-destructive activities Being overly active Pushing emotions away Social isolation Spiritual questioning Your feelings and reactions may surprise or worry you. Remember that feelings are neither right nor wrong they are simply feelings. It s important to make sure that you don t overanalyze or worry about your feelings they will come and go naturally. It s all part of the grieving process.
10 11 Five stages of grief These stages are not necessarily linear. You may feel one stage, only to return to a previous one. Each person s healing journey can take its own path. 1 DENIAL The first stage is one of shock and denial. You may feel a state of numbness due to the loss. Denial serves as a coping mechanism and helps us pace our feelings of grief. As you accept the reality of the loss, you are already starting the healing process without even knowing. You will become stronger and the denial will begin to fade. 2 ANGER Anger is an essential stage of the healing process. The more you can actually feel your anger, the more it will start to go away. There are also several other emotions you will go through, but anger is the emotion that we are most commonly used to managing. Anger can be used as a supporting system, giving you an emotion to focus your thoughts on as opposed to feeling nothing. Anger is also another indication of you loving the person you lost. 3 BARGAINING After losing someone, you may find yourself bargaining as a type of temporary truce. You may feel lost in a sea of what if statements in your attempt to have life returned to what it was before your loss. You may even find yourself trying to negotiate in return for what was in the past. You ll do anything to not feel the pain of the loss. 4 DEPRESSION This stage may seem as if it will last forever, although it will get better with time. All of your attention may be focused on empty feelings and sadness due to the loss. Depression after a loss is natural, normal, and an appropriate response. Feeling depressed is one of the necessary steps toward grieving over a loss and recovering back to a better state of mind. Try to keep in mind that these feelings will become less intense with time, and it is a sign that you re continuing to heal. 5 ACCEPTANCE Acceptance may be confused with being all right with the situation. But they are not the same. This stage is about accepting the reality that your loved one is physically gone, and recognizing that this reality is permanent. You will never like or be OK with the loss, but you will be able to accept the reality of the situation and not continuously try to re-live the past. As you begin to live again, you may feel guilty or that you are betraying your loved one. This is not the case. You can never replace them. But you can continue to make new connections and meaningful relationships. You may also start reaching out to others and becoming more involved with their lives. You will begin to live again, but you cannot fully do so until you ve given grief its time.
12 13 Taking care of yourself Seeking help Losing a loved one to IPF can take a huge physical toll on you and your body. That s why keeping up with your health and nutrition is essential to allowing your body to heal properly. Maintaining healthy habits is key to healing Eat healthy and try to exercise every day Get plenty of rest Keep a daily routine try to stay active Maintain daily hygiene habits Surround yourself with the people you love Ask for help your family and friends are there for you You are not alone Though you may sometimes feel like it, you are not alone. Talking to someone can be one of the best ways to process your grief. Hearing yourself express your feelings can help you process your emotions while receiving support and feedback from a loved one or counselor. Keep open lines of communication Talk to your friends and family those closest to you are there to help Talk to your doctor he or she can help with necessary prescriptions or referrals Grief counseling seek help from someone with grieving expertise Seek professional help therapists can act as a sounding board and help you with the healing process Join a support group connect in person or online with others in similar situations Avoid developing habits that are counterproductive to your healing Limit the use of alcohol, tranquilizers, sleeping pills, and any other mood-altering medications
14 15 Tending to personal affairs Reaching out for support Dealing with financial affairs and final wishes can be difficult to think about during the time of your loss. But they are necessary steps to ensure all expenses and assets are covered and protected. Manage insurance matters meet with your adviser to ensure costs are covered and policies are properly paid Make final arrangements honor your lost loved one with final ceremonies (seek help from friends and family so that you don t feel overwhelmed) Organize financial affairs manage wills and anything left behind Carry out final wishes tend to any last wishes your lost loved one wanted to be carried out Getting involved Focusing your efforts on something positive is a fulfilling and proactive way to expel all of the negative feelings and energy. Honor your loved one by giving back to others and helping those you can. Here are some helpful places to start: Family Caregiver Alliance www.caregiver.org The Compassionate Friends www.compassionatefriends.org Grief Share www.griefshare.org PFF Caregiver Support Community www.inspire.com/groups/pulmonary-fibrosis-foundation-caregivers/ discussion/welcome-pff-grief-support/ Help Guide www.helpguide.org
Important points to remember Grieving is natural Grieving is essential to healthy healing and moving forward By recognizing the symptoms of grief, you ll be able to avoid unhealthy habits and have a better sense of the process Everyone grieves differently Don t compare your grieving with anyone else s it isn t a matter of right or wrong Don t take anyone s grieving process personally grieving is natural, and everybody has their own way to mourn You will heal You will reach a point where you can accept the situation and continue to live your life. Time heals all wounds. It won t happen overnight, but you ll begin to feel better as you move forward Honor the memory of your lost loved one by carrying on their memory and living life to the fullest Find ways to remember you will get to a place where you can look back on fond memories in a positive and healthy way Boehringer Ingelheim International GmbH. All rights reserved. October 2016