"I Love My Dad, but I Feel So Sad"

Six things to know about anticipatory grief and ambiguous loss

Senior man talking earnestly with his adult son

Roberto's father has Alzheimer's disease, and Roberto is taking care of Dad at home. Roberto believes in the old saying: "You cared for me, now it's time for me to care for you." And yet, he misses the way it used to be, when he could rely on Dad's wisdom, support and ready wit. Roberto often feels melancholy. Then he feels bad for feeling that way.

When a loved one is living with a terminal illness or a chronic, disabling condition such as Alzheimer's disease, grieving often begins before the person passes away — perhaps years before. Psychologists call this "anticipatory grief." They also talk of the "ambiguous loss" that caregivers feel when a loved one is still alive, yet is so changed that it feels like the person they love is gone.

People experiencing these kinds of feelings often judge themselves. This just makes things worse. They should know that what they're experiencing is a natural reaction, and very human. Here are some insights caregivers should know as they process the changes in their loved one, and consider what is to come.

Your feelings are normal. You might experience an overwhelming sense of sadness, tearfulness, and perhaps anger at your loved one, or at the universe for letting this happen. Experts say that anticipatory grief can be just as intense as grief after a loved one's death.

Woman hugs her elderly dad

Everyone experiences grief in their own way. You might not only be grieving the impending loss of your loved one and the changes in their condition, but also changes in your own life that result from your loved one's illness — caregiving responsibilities that might feel overwhelming, a life that is not what you expected, and the loss of support you once felt from your loved one. Accept these feelings; there is no need to feel guilty about them.

Don't keep these feelings to yourself. Experts say that expressing anticipatory grief openly can bring a great deal of relief. It helps us feel that we're not alone. Talk to friends and other family members. Join a support group, in person or online. Start a journal. Work with a counselor. And don't wall off your loved one. Depending on the dynamic between the two of you, it might help to say, “I love you very much, and I miss how things once were. You too?” This can be a powerful emotional connection for both of you.

Report depression. Grief is not a disease. But if you are experiencing a sense of hopelessness, sleep problems, trouble concentrating or a loss of interest in usual activities, sharing with friends and journaling might not be enough. Talk to your doctor and seek professional help from a counselor or psychologist who is familiar with caregiver issues.

Take care of yourself. Caregivers often neglect their own medical care, exercise routine and nutritional needs. Make yourself a priority. You can't provide good care for your loved one if you aren't caring for yourself. Go for a walk, visit friends, listen to music, meditate, take in a funny movie — whatever activities feel nurturing to you.

Get help with practical tasks. If the last item —  take care of yourself — seems like an impossible dream, it's time to get help. Ask family and friends to help with your loved one's care. Learn about support resources for your loved one, such as a memory care community, adult day care, or in-home care provided by a trained professional. Sometimes family feel guilty if they don't do it all themselves, but experts say family feel less depressed and exhausted and more able to connect with their loved one when they enlist professionals for hands-on care and respite.

Grief handbook from Right at Home

Learn More

Right at Home has just released a new resource, "Understanding Grief: A Guide for Grieving Caregivers," created with insights from grief support expert Dr. Eboni Green. Visit the Right at Home website to download the free booklet

For information on topics related to home care and healthcare, visit our Home Care and Healthcare Advocacy group on LinkedIn.  

Right at Home, Inc. is a national organization dedicated to improving the quality of life for those we serve. We fulfill that mission through a dedicated network of locally owned providers of in home care services.