"We go to a patient's home with a plan for the visit, but often times that plan goes out the door when we walk in," said Zoe Burroughs, LMSW, Arbor Hospice Social Worker. "We never know what the family will need that day. Something may have just happened that makes the patient or caregiver upset. It is our job to meet the patient and family wherever they are and offer support on whatever they need. Sometimes it is education, other times it is validation and sometimes caregivers need extra help - they are burned out."
Arbor Hospice's Social Workers offer the following advice to caregivers:
- Keep track of your feelings. Advanced illness and the end of life can be frightening and overwhelming for both the patient and family. Many people find it helpful to keep a journal or record their emotions through art. This provides an outlet for your pain, grief or frustrations.
- Share your feelings with the people close to you. Remember that you are not alone. Millions of people care for a loved one and they have experienced similar feelings. Sharing your emotions does not make you a burden to someone else. You are entitled to every emotion you have. Do not be afraid to share them with the people you trust.
- Join a support group. Talking with someone who has had a similar experience can be very beneficial. Many disease-specific associations, such as the Alzheimer's Association, offer caregiver support groups. You many also find support groups through a local Area on Aging Association, Adult Well-Being Association or Veteran's Affairs. If you cannot leave your home for a support group because your loved one depends on you, consider joining a virtual support group. There are many websites where you can chat with others who are going through the same thing.
- If you are working and caring for a loved one, talk to your employer. Caregivers should let their managers know that they are caring for a loved one and discuss their needs related to caregiving. Make it known that you are committed to your job and want to find ways to remain productive. There may be options, such as different work hours or the ability to work from home.
- Know your rights. Consult human resources about what you are entitled to under the law. The Family Medical Leave Act (FMLA) requires large employers to provide up to 12 weeks of unpaid time off with job protection when workers must care for a sick or injured family member.
- Develop ritual caregiving techniques. Caregiving tasks, such as helping your loved one in and out of bed, should be ritualized. Establishing rituals that you or your loved one can follow will ensure the best possible care. It will also help your loved one know what to expect and how something is going to happen. Visit the resource section on the Arbor Hospice website for how-to caregiving videos and tip sheets.
- Create an atmosphere comfortable for your loved one. Often times, the person with a serious illness has a bed in the family's living room, or a room on the first floor near a bathroom. While this may be ideal for helping someone move about, it can be very distressing for your loved one. Keep in mind that your loved one may not sleep well if there is noise around him or her, if the television runs continuously or if someone is talking. Make sure your loved one is in a place where he or she can keep his or her dignity and have some quiet.
- Understand the difference between listening and talking. Take the time to really listen to your loved one. What does he or she want? If you are doing all the talking, you are not uncovering his or her real needs or desires.
- Organize help. Determine which of your loved one's needs you can or want to handle on your own, and which needs you could use help with. Ask family members, friends, neighbors, co-workers, professional caregivers or members of your church for help. Even if you find help from one or two people, they can make a difference. This will give you an opportunity to focus on yourself.
- Forgive yourself for any bad days and give yourself a fresh start the next day. Understand that you are not going to be able to do everything, or solve every problem. Remember everything you do right, and learn from your mistakes. Caregiving is hard. Any support you are giving is making a difference.
This blog post was written by Jaclyn Klein, Arbor Hospice Communications Specialist with input from Zoe Burroughs, LMSW, Arbor Hospice Social Worker. You may contact Jaclyn or Zoe by commenting below or emailing firstname.lastname@example.org.