Grief and Loss with Dementia

Grief and loss and guilt are a dementia caregiver’s constant companion. The stresses brought on by caregiving, like setting the bar for yourself too high, comparing yourself to others, and developing negative feelings toward your loved one’s needs and behaviors, build over time. Whether there is emotional baggage because you did not have a good relationship, or you are feeling trapped by your commitment, or you might feel too guilty to take time for yourself. Combined with lack of sleep and no respite, you are leaving yourself open for a meltdown.

Over time you grieve for what your relationship once was before the dementia but will never be again. Moreover, you may rail against the loss, even try to force him to remember. You might even lose your temper because you’ve sold yourself on the idea he is lying and trying to manipulate and hurt you. You are losing your loved one as his life and memories unravel one inch of thread at a time. As a result, every day brings on new loss, both small and large. An inside joke no longer shared, a common interest disappears, shared intimacy dissolving day after day until not even a smile lingers on his lips when he sees you. In other words, dementia in its unyielding journey never gives up, never reverses course, never waivers.

You are now a stranger and mourning for a shared future which will never come.

Additionally, the grief and loss you are experiencing is as real and intense as the mourning that takes place when someone you love dies. You are coping with the loss of someone who is right in front of you and very much alive, but your interactions are with someone who is no longer mentally present in the moment. Over time, there is no longer any true social interaction. Even though we try to focus on what is left, not what is lost, it is impossible to separate those feelings of loss.

Guilt’s Five Warning Signs

Grief and guilt are holding hands and holding the reins over your emotions. This is a natural side effect of dementia caregiving. Likewise, you are not alone in your feelings and there are endless reasons you can invent to increase your own guilt. The warning signs for guilt:

1. You frequently use emotionally trapping words like always, never, ought, could, and should. For instance, do you say the phrase, “I have to . . .” regularly? This is the trap you are setting for yourself when you set your “ideal caregiver bar” too high. We become what we think about the most. Whenever you catch yourself using these words, reframe the situation. Instead of using those negative emotional words, choose something like, “This time I’ll . . .” or “I chose to . . .” With practice over time it will change the way you feel about the situation.
2. You compare yourself with other caregivers who seem to be able to do it all. No two caregivers have the same personality or will have the same experiences with dementia care. No two people with dementia travels the same path either. Comparing yourself to others discounts your ability to give care for your loved one. It also sets you up for not taking care of you.
3. Feeling guilt for needing a time out. We are all human beings and cannot be “on” 24/7. It is physically impossible. Taking respite time creates energy and reduces stress. Give yourself permission to take care of yourself.
4. Feeling guilty for not doing enough or beating yourself up in hindsight over what you could have done better. I once worked in an industry where being average was the ideal and being average returned solid consistent results. Don’t set yourself up for failure. Perfectionism is impossible with dementia care. We all have homes to run, family life, and relationships to maintain, even jobs to keep. Stuff will fall through the cracks. You might miss paying a bill or forget someone’s birthday or leave out a dog toy your loved one falls over. It is not the end of the world. Life happens. Set your bar to average and you’ll achieve consistent results with less stress.
5. You feel guilty for asking others for help. Asking for help is not a sign of weakness, it is a sign of strength. There is a saying, “Many hands make light the work.” Dementia care is isolating and solitary when you don’t reach out. The more you can share the burden, the better you will feel. Caregiving is not martyrdom; it is about living and sharing.

Understanding Your Feelings of Loss

First, your feelings are normal. When you are feeling overwhelmed with guilt and loss or anger, get advice from a trusted doctor, therapist, or support group. Sometimes the obvious is so close we can’t see the forest for the guilt. Therefore, hearing a neutral third party tell you there is nothing to feel guilty about in a self-induced-guilt situation is quite validating. They may help you let go of your guilt.

Second, we are human beings and imperfect. There is no such thing as everlasting calm. You will lose your temper. Take time to breathe. Forgive yourself and apologize to your loved one when you’ve calmed down.

Third, be realistic about the demands of caregiving. There will be occasional bright spots, moments of emotionally fulfilling clarity. These becomes rarer over time. The rest of the time it is hard work. Don’t beat yourself up when you are struggling with some aspect of care. Reach out for help.

Equally important, don’t blame yourself when bad things happen. Bad things will happen, they are out of your control. You can’t prevent them. You can choose how you will react to them.

In the same vein, choose to take care of yourself, not just your loved one. Also, allow self-care time for feeling your full range of emotions in private. You are grieving. It is a real and natural part of dementia care. You need to grieve, cry, release your anger, or feel sad without interruption and without criticism. Releasing your emotions will make room on your face for a real smile when you need to share it most.

The Grief and Loss of Taking Care of a Spouse

Notably, taking care of a spouse takes a deeper, more intimate, emotional toll. Therefore, if you are caring for a spouse, it can be more difficult to get time out or connect with friends or even relatives. By the same token, you are at even greater risk for depression. Visit the Well Spouse Association at www.wellspouse.org. They are a non-profit and have local chapters around the country who offer face-to-face support groups. In addition, they also offer local phone support for spouses with partners who have a chronic illness—like dementia, and disabilities. If you cannot connect with a support group, vent your feelings on paper. Keep a journal to keep your sanity.

Ward off Grief and Loss: Group Caregiving Builds Community

For this reason, consider a group caregiving option to ward off grief and loss. Chiefly, group care consists of a bunch of friends, family, co-workers, or anyone else you know who would volunteer to help care for your loved one and you and your family, so that no one single person must bear the brunt of the caregiving. For example, ShareTheCaregiving, Inc. is a non-profit centered around the book Share the Care, How to Organize a Group to Care for Someone who is Seriously Ill. They crafted their program to lead friends, neighbors, co-workers and even acquaintances with a guided plan for creating and maintaining a ‘caregiving family’ to support someone they know facing a health, aging, medical issues—including dementia, or any circumstance where support is needed.

About the Program

To clarify, the program covers every aspect of caregiving, including the tight-knit bond forged by those sharing the responsibility of caregiving. Namely, one of the first things they discuss is what is in it for the caregivers. What are the caregivers’ fears about caregiving and what are the benefits they expect to receive? You wouldn’t expect benefits from caregiving for someone who is slowing leaving you, but the benefits exist.

According to Sheila Warnock, co-author of the book, in the section of her book, The Special Benefits of Being Part of a Caregiver Group:

“As people played their unique roles in caring for someone else, their priorities seemed to shift from reasoning to trusting, from revering the intellect to revering the mystery, from looking good to doing good, from living in the future or the past to living in the moment, and from accomplishment to meaning.

Some people said they felt more connected to humanity. Some said they began to see how we all share the same fears, needs, and desires. Other felt they got a sense of their own place in the world—a sense of belonging. They found out more about their own strengths and weaknesses and they began to acknowledge the strengths and accept the weaknesses. They realized that having limits doesn’t mean you’re bad or weak, or that the job won’t get done.”

 If you would like to know more about the program visit their website at www.sharethecare.org.

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Tracy Cram Perkins is a dementia caregiving survivor and blogger. Her twelve-plus-years of experience caregiving for two parents with dementia provided the nucleus of  Dementia Home Care: How to Prepare Before, During, and After. She experienced the depression, anxiety, and guilt which comes with dementia care and recognized each person’s journey with dementia follows a different path. This guide grew from the questions presented by family members and friends overwhelmed by caregiving challenges and the frustration of not being able to find caregivers hands-on answers in one book.

Tracy believes that the sound of our laughter and the memories we create with others are the most important things we leave behind. She believes laughter is an important part of the caregiving equation.

According to Tracy, the Surgeon General’s warning for laughter could read, “Warning, laughter produces chemicals known to the State of California to be cathartic and to make you feel better. Other states of mind may follow.”