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Caregiver Loss

Are you asking yourself why you are feeling so down, or feeling awkward about visiting a grief counselor’s website, because your loved one is still alive, but he or she is suffering from a chronic disease or disability? It’s absolutely normal to grieve the loss of someone we love even before he or she dies if we know that death is approaching. If you’re also a caregiver to your loved one as he or she loses physical abilities and/or becomes increasingly cognitively impaired, your grief is likely coupled with a nearly-overwhelming stress.

Who Is a Caregiver?

Most people take care of others in their life, even under completely normal circumstances. You take care of your young children, of your spouse, even friends who are going through a hard time. When we talk about caregiver grief and caregiver stress, however, we are highlighting the especially challenging nature of the following types of situations:

  • Taking care of a disabled child;
  • Caring for a spouse, parent, child or sibling with a serious, fatal illness that involves a decline in cognitive and/or physical abilities;
  • Taking care of a spouse, parent or child through a potentially fatal illness, such as cancer treatment;
  • Caring for a loved one after an accident, whether or not he or she is expected to make a full recovery;
  • Caring for a parent or grandparent who is declining due to the normal aging process, whether or not he or she has a particular diagnosis.

Not all caregivers will feel like their situation fits neatly into those scenarios, but if you’re taking care of a loved one through an illness or disability, you might be experiencing the grief and stress of caregiving.

What Is Caregiving Grief?

As a caregiver, you might be focused on meeting the day-to-day needs of your loved one and your family. But you are probably also grieving. Here are some of the things caregivers often find themselves grieving:

  • Loss of future plans. Whether you’re caring for a disabled child or an aging parent, you’re grieving the activities you thought you would be able to do with that person or the future you had envisioned together;
  • Loss of financial security. Caregiving puts a massive financial pressure on most families, and the person doing the caregiving is also often responsible for managing the family’s finances;
  • Loss of personal freedom. Your caregiving responsibilities might mean that you can’t do the things that you used to do, even those things that didn’t involve the person you’re caring for;
  • Anticipatory grief. If your loved on has a fatal, degenerative disease, you might be grieving his or her death “in advance.” This is a completely normal reaction to a dire diagnosis.

Counseling and support groups can help you acknowledge the losses that you’ve faced in adjusting to your role as a caregiver. Making time to grieve the very real losses you’ve already experienced, as well as the ones you know are coming, is an important part of taking care of your own needs.

Common Caregiver Emotions and Concerns

Caregivers often find it hard to work through or even acknowledge their grief, since they’re also awash in emotions as well as overwhelmed with the practicalities of taking care of their loved one while still managing their own career, finances and responsibilities to others’ in their lives. Here are some emotions caregivers often find themselves struggling with:

  • Caregivers often feel like they have to be a “perfect” daughter, spouse or parent, and feel guilty for anything they perceive as being less than ideal. You might also find yourself thinking you wish it would just “be over,” which will then lead to feeling guilty.
  • It can be tempting to think that if you just take better care of your loved one, he or she will get better. This can be especially challenging to deal with when a loved one has moments or even days of improvement, even though the general trajectory is one of decline.
  • Social isolation. Caregiving takes a lot of time, often leaving caregivers with little freedom to pursue their own hobbies or spend time with friends.
  • Feeling out of control. While you fight to control the details of your life, like what time your loved one takes his or her medication, you might feel completely unable to influence the larger picture.
  • Lack of recognition. Your efforts as a caregiver might be invisible to your friends and your family. They might show concern for your sick loved one but never inquire about you or offer support.

Counseling can help you find strategies to cope with all of these emotions as they arise throughout your days and weeks as a caregiver.

Taking Care of Yourself Too

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As a caregiver, it’s important not to neglect your own health, both physically and mentally. You can’t be a good caregiver if you have your own health problems. And while it seems obvious that caregiving can affect your mental health, the stress associated with caregiving—as well as the real changes to your life—can have serious implications for your physical health as well.

Here are some ways to incorporate self-care into your caregiving routine.

Eat well and get physical exercise. Many caregivers find that their level of physical activity plummets and their eating habits change as they focus more and more of their energy on caregiving. This, combined with the lack of sleep that is common for caregivers, can lead to health problems.

Get respite care and other assistance. Work out what caregiving activities you need to do and what you can ask others to help with. Getting help with meals and cleaning can go a long way towards easing your caregiving load. If your loved one needs constant companionship and care, get help from friends, family or professional services so that you can get a break.

Connect with other caregivers. Finding other people who are going through a similar experience can combat the social isolation experienced by many caregivers. It’s especially helpful to look for support groups that are specific to the disease or disability that your loved one has.

Get mental health support. Attending regular counseling sessions can be an important way to work through all of your emotions in a safe, supportive environment. Having a regularly scheduled time to focus on yourself, your needs and your feelings will help you make sense of your emotions. A counselor can also help you create a stress-management plan and help you identify what steps you need to take to help you cope.

I work with adults who are struggling with the grief and stress of caring for a loved one in individual counseling sessions. I can help you identify, accept and work through the complex emotions that you’re feeling about your loved one’s illness or disability. Together we can find strategies to alleviate your own stress and to give you space to grieve your very real losses, even if your loved one is still alive.

Every caregiving situation is unique, as is each experience with grief. We can work together to find the best path for you. With the proper support, caring for a loved one can be a rewarding experience. Being able to take care of your loved one when he or she most needs it is a gift for both of you. It’s only possible if you make sure to take care of yourself as well.

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