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Are You Experiencing "Care-grieving"?

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To commemorate National Family Caregivers Month, I asked bioethicist, educator and author Viki Kind to submit a blog post. She chose an excerpt on the topic of "care-grieving" from her book, The Caregiver's Path to Compassionate Decision Making: Making Choices for Those Who Can't. Also see Viki's website, Kind Ethics.

–Brigid Cahalan

Are You Experiencing "Care-grieving"?

by Viki Kind, M.A.

Does it feel like the caregiving never ends? Do you feel guilty because there just isn't enough time? Do you feel like you are drowning?

For caregivers, there is barely enough time to do all that needs to be done and at the end of the day, you are too exhausted to take care of yourself. I was the caregiver for four family members for many, many years. Sometimes I could manage just fine. But at other times I felt overwhelmed and unappreciated. Even when I knew what to do, I was still exhausted and worried all the time. All I wanted to do was to crawl into bed and just sleep. Even though I wanted to take care of the seniors in my life, sometimes it all became too much.

One of the reasons for this exhaustion is something that I call "care-grieving"—the grief that comes with caring for and caring about another person. Not only is caregiving overwhelming, frustrating and emotionally draining, it is also associated with profound grief.

So, why might you be care-grieving?

You may be care-grieving because your loved one isn't the person he or she used to be. You used to look to this person to support and nurture you, and now that aspect of your relationship is gone. Or maybe this was the love of your life and now you cry yourself to sleep at night because he or she is living at a care facility. And sometimes, your loved one may still be physically present, but the person you knew is no longer with you.

Your grief may be over the dramatic changes in your life. Maybe you had to quit work or your health is deteriorating. You may be responsible for your loved one's bills and the financial burden is growing. Or you may realize that you aren't being as good of a parent to your own kids as you used to be. For most caregivers, every free moment is spent worrying about the person in your care and your life is no longer your own. And the worst thing is, you feel guilty when you say, "I want my life back" or "I wish this would all be over."

Grieving the future.

You may also be care-grieving because you realize that your loved one is going to die, possibly soon. This is called anticipatory grief because we anticipate the loss and begin grieving before that loss is a reality. Sometimes this loss comes along slowly and sometimes it rushes toward us. Either way, it is painful and difficult. Unfortunately, oftentimes nobody will talk to you about this. People will tell you to stop worrying or to put on a happy face. But this grief is real and normal. Each day, as you witness the changes in your loved one's physical and mental abilities, your grief grows.

You may also be experiencing grief over your own mortality. Maybe you just realized that when your parents die, it will be your turn next. I hated it when someone said to me, "Now that both of your parents are gone, you're an orphan." It wasn't something I wanted to hear said out loud. It reminded me of how much I had lost and that I was of the next generation in line to die.

All of these changes create a sense of loss. For many of us, the pain can be so intense that we try to deny it and run from it. But no matter what we do, grief will chase us. Whether we acknowledge our emotional suffering or not, it is draining and damaging. Care-grieving can become so overwhelming that it creates in us a desperation and need to runaway in order to survive. It doesn't mean you're a bad person if you feel angry or sad. You are normal and your grief is normal.

How to get the help you need.

Ultimately, you can't get around grief. You have to get through it. You have to experience it and allow the emotions to be felt and heard. You need to talk about it with people who can help you. This may be your family, but often we have to look to others for this support, as our family members may be grieving too. Please reach out for support from your friends, your extended family, illness-specific organizations and your faith community. You can also get help from local caregiver support groups, online forums, chat rooms and from anyone else who may be willing to listen. If it is getting to be too much, seek professional help. Care-grieving is normal, but ongoing suffering is not. Please reach out to get the help you need.

About Viki Kind, MA:

Viki Kind is a clinical bioethicist, medical educator and hospice volunteer. Her award winning book, The Caregiver's Path to Compassionate Decision Making: Making Choices for Those Who Can't, guides families and healthcare professionals through the difficult process of making decisions for those who have lost capacity. Patients, families and healthcare professionals have come to rely on Viki's practical approach to dealing with challenging healthcare dilemmas. She has also been the caregiver for four members of her family.

Viki Kind also provided the following links to resources for caregivers—and care-grievers:

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Very moving, and helpful.

Very moving, and helpful. Thank you.

As Usual, Vicki Kind Hits The Nail On The Head

She's right - so often we punish ourselves for not doing what we wish we could do, even though we can't do everything.

Caregrieving Article

Hi Viki, I so appreciated your insight to how caregiving and grief go hand in hand. I am in the middle of experiencing all these emotions as well. I am also creating a platform for other heart caregivers that are going through challenging times to find support. I would love to feature your book and your wonderful advice in order to help us all through our caregiving paths. Thank you.

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