Family Caregivers Online – Updated for December 2021

Author: Iris Waichler, MSW, LCSW

When you are in the midst of being a caregiver, you build your time and your life around managing the caregiver tasks that need to be done. As a caregiver for my dad, I know my schedule revolved around visits to the doctor, the hospital, the assisted living facility, and ultimately the skilled nursing facility where he died. His care and optimal well being became the center of my life and thankfully, my husband and daughter understood. The role of caregiver superseded that of wife, sibling, mom, friend, speaker, and author.

Many caregivers put the needs of the person they are caring for above their own. That is why so many caregivers experience burnout. When we are in the midst of caregiving, we often see the person we care for changing in many ways as they move closer to the end of their lives.

Often we go to a place where we try to imagine what our lives will be like without them. This is called anticipatory grief. This is our way of emotionally preparing for the loss, the death of a loved one. It is a painful vision, but it is our mind’s way of determining ways to cope with the devastating loss of a loved one. Sometimes these thoughts occur on especially challenging days. It is not unusual to have them and it is nothing to feel guilty or ashamed about.

The actual death of a loved one, even one that was expected, can leave us overwhelmed and immobilized. It becomes a reality that we are forced to face. This grief can encompass many emotions including, sadness, anger, emptiness, relief, uncertainty about the future. Your body grieves too. That grief appears as inability to sleep, sleeping too much, loss of appetite, eating too much, stomach problems, tearfulness, body aches, and an inability to focus or think.

Each of us grieves in our own unique way. There is no right or wrong associated with grief, especially after being a caregiver. The challenge is suddenly your attention and focus must switch from the person you cared for to yourself. Many of us do a worse job of taking care of ourselves than we do of taking care of others. So what can we do to cope after the loss of a loved one and our identity as a caregiver? How do we move on? Here are some tips to take the next step:

Talk with someone you trust about how you are feeling. Keeping grief inside can harm you in many ways and can intensify the feelings, causing more intense physical and emotional harm. Allow yourself to express your feelings regarding this loss. Cry if you need to. Connecting with others in person will also reduce the tendency to isolate yourself in the midst of coping with grief. If there is nobody you can connect with in this way, consider going to a grief support group or grief on-line chat room. It can really help to connect with others who have experienced a similar loss. It helps you feel less alone and it will normalize your feelings.

If your loved one was in hospice, or at a skilled nursing facility, getting home health care, or at an assisted living program, talk to the staff or people there. They can offer you important support and counsel you. In the Jewish religion, after a person dies, the family sits Shiva. One of the key components of Shiva is to hear stories about the person who has died. This offers comfort to the family. Others learn about the person who has died, and it keeps their memory alive in significant ways.

Celebrate the life of the person you lost in meaningful ways. If they liked nature, take a walk in the woods. If they liked poetry, read some of their favorite poems. Recall the positive experiences you had as a caregiver with your loved one and focus on those memories. If you can replicate what those moments entailed by yourself or with a trusted friend, that may be a source of comfort to you and help you to move forward.

Don’t berate yourself for things you should or could have done differently. Caregiving is hard and we all have moments of frustration where we wish we could change our reactions or responses. Forgive yourself as you would forgive others and focus on the things you did as a caregiver that helped your bring safety and quality into the life of your loved one.

Give yourself permission to move forward without guilt. Focus on restructuring your time in meaningful ways, surrounding yourself with people and tasks that will nourish and strengthen you.

Know that you will have bad moments or days along the way after the death of the person you took care of. There will be obvious triggers like birthdays or anniversaries. Plan ahead and think about how you want to manage those days. Who would you like to be there with you? Unexpected triggers will happen too causing you to tailspin. You may see someone that looks like the person you took care of or smell their perfume or hear their favorite song. Acknowledge that this was a tough day.  Remind yourself this is another step in the grief process and figure out ways to make the next day a better day.