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Life After Caregiving: Coping with the Emotional Impact

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November 2, 2017

“When my husband got dementia, I had my hands full. I never joined any classes to learn how to care for him, and I think I should have,” says former caregiver Phyllis. “Eventually I put him in a home, and then he went downhill very fast and passed away. Now I am feeling very guilty about things I think I should have done.”

Phyllis’ story is not unique. We all expect to feel sad after a loved one passes away, but caregivers may have to cope with a variety of other emotions that range from guilt to loneliness to excitement about the future. Spouses and children who provided care for years to a family member with a chronic or life-limiting condition like COPD, cancer or Parkinson’s disease may discover it’s hard to forge a new path in life after their caregiving role ends. But despite these challenges, it is possible for caregivers to navigate their post-caregiving emotions and thrive again.

Phyllis’ Story: Coping with Post-Caregiving Guilt

The guilt Phyllis felt after her husband died is a common caregiver response during the grief process. Many caregivers look back to find all of the times they spoke in anger, lacked patience or otherwise fell short of being perfect.

But this sort of reflection can be damaging if it’s not balanced with memories of all the times you performed well. As former caregiver Karen Garner puts it, “You are human. You are doing the best you can. Being a caregiver is not a career we chose. We all made the best decisions we could in the moment, and we need to be kind to ourselves when looking back.”

Brenda’s Story: Feeling Relieved

“I felt so much relief after my husband passed away, but then I felt guilt about the relief. Did I do enough for him, especially in those final weeks? And now, where do I go from here?” asks Brenda.

Sometimes caregivers do feel a sense of relief when a loved one passes, especially when this occurs after a long illness. Relief is a normal emotional response that can occur when the rigors of caregiving suddenly cease.

Try to realize these feelings of relief do not mean you are happy your loved one is no longer with you. Rather, you might feel relieved that you no longer have to watch your loved one decline or that you no longer wake up feeling anxious in the morning as you wonder what caregiving surprises you’re going to have to face that day. It’s OK to grieve the person you lost while also feeling relieved about leaving the burden of caregiving behind.

Eileen’s Story: Meeting Loneliness Head-On

“Alzheimer’s is a very sad and tragic disease,” Eileen says. “I lost my husband in February after years of slowly declining mentally and physically. Now my friends and family are with me, but I still feel very lonely in the evenings.”

Caregiving often involves a lot of bustle and activity. When a loved one passes away, all of that commotion stops. The house can become very quiet and feel very empty.

“I think it’s important to face loneliness head-on,” says Karen Garner. “One of the best ways to combat feeling lonely is to get active. Join different groups so you’re out of the house several evenings a week. Maybe join the church choir or rediscover old passions. Perhaps you used to enjoy swimming or another activity, and you can take that up again.” Many caregivers who had become isolated find great relief in being able to socialize and forge new friendships as a way to combat loneliness.

Sue’s Story: Excitement for the Future

“As difficult as it is to be a caregiver, it really does become part of who you are,” Sue says. “I have slowly begun that journey of finding my new role in life. I’m excited to see what the future has in store.”

When providing care for a loved one over the long term, your world usually shrinks. As you must devote more and more time and energy to caregiving, your personal life can become smaller or even non-existent.

It’s no surprise, then, that some caregivers feel a sense of excitement about the future after a loved one passes away. These feelings may not occur in the immediate grief period, but certainly as the process unfolds you may find yourself able to look at the future with a sense of pleasant anticipation. You can embrace this state of mind. Try to envision all the possibilities available to you now to shape a new life for yourself after caregiving.

Losing a spouse, parent or other relative naturally brings feelings of sadness and grief. But family caregivers may need to process other emotions, too, such as the guilt Phyllis coped with or the loneliness Eileen experienced. Take heart in knowing you will be able to cope with the post-caregiving journey just as others have done. The strength you tapped to be a caregiver will get you through the end of the journey and on to a life filled with joy again.

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