Caregiver Grief After a Loved One's Death

The experience of grief after the death of a loved one is almost always painful, but the emotions can be different and sometimes complicated when you have been that person's caregiver—whether you cared for your loved one in your home, made sure they were safe in their home, or visited and monitored their care in a nursing home.

The Unique Aspects of Caregiver Grief

When a parent, partner, or other family member dies, your world changes. A person who has been part of your life is no longer here. When you've been that person's caregiver, your world may change in some additional ways:

• Part of your identity has been as a caregiver, a role you no longer need to play.
• The adjustments you've made to your schedule and priorities in your personal, work, and family life are now open to readjustment.

There are other differences, too, between caregiver grief and the grief experienced by those at a greater distance from the loss:

• You may already have experienced, in advance, some of the grief that typically follows a death. If your loved one has needed extensive help, chances are they've been gradually losing the ability to take care of themselves. That can mean you've been grieving the person you once knew for some time. You may have lost them to dementia a little bit at a time. You may have lost their active, capable former self to increasing physical infirmity.
• You've probably experienced losses of your own, too, because of your caregiving responsibilities. You may have cut back on work you found fulfilling. You may have made financial sacrifices or forgone pleasures like vacations and travel to care for your loved one. You may have lost touch with friends and former colleagues. You may not have spent as much time as you wanted with younger, healthier family members, especially children and grandchildren.

Because you've already experienced these kinds of losses, your reactions to the death of your loved one may surprise and confuse you. They may not match the reactions of those around you.

The Mixed Emotions of Caregiver Grief

Where grief after a sudden or unexpected death can begin with shock and disbelief and move through waves of sadness, anger, regret, and other powerful emotions, caregiver grief can follow a different pattern and be dominated by other feelings and reactions. These may include

• Relief—that your loved one's decline and suffering is over, that your work as a caregiver is finished, and that you are now free from worry for your loved one and the constraints that caregiving has placed on your life
• Guilt—that you feel a sense of relief rather than purely sadness (which might seem callous to you, but it is a perfectly natural reaction)
• Regret—about not doing more for your loved one, or for times when you were impatient or angry with them
• Anger—at others who didn't do more to help or haven't appreciated all you have done, or at the thought of what you have given up to provide care for your loved one
• Sadness and loneliness—at the finality of this separation, and at the loss of the routine and social connections associated with caring for your loved one, including regular contact with other helpers or with the staff and other residents of a nursing home
• Confusion—over who you are missing, the infirm person you were caring for and who is fresh in your memories; or the younger, healthier, engaging person your loved one used to be
• Feeling lost or adrift—as you face a future without the anchor of your caregiving responsibilities and the sense of purpose they provided

Caregivers can also experience a form of post-traumatic stress after a loved one dies, with flashbacks to frightening times and fresh surges of anxiety, even though the pressures and worries of caregiving are no longer present.

Hopefully, amid this mix of emotions, you also feel a sense of satisfaction for what you have done for your loved one. By being a caregiver, you showed your love with your actions. As you work through your other emotions, pay attention to this one. Allow yourself to feel the satisfaction of having done the right thing—if not perfectly and not every day, then well enough and often enough to have made a difference when your loved one needed you.

Coping with Complicated Emotions

• Notice your emotional reactions to the loss of your loved one, and accept them as natural and valid. Allow yourself to feel the full range of your emotions—relief along with sadness.
• Don't judge yourself or think there's something wrong with you if you feel more relief than sadness. That shows how much you put into your caregiving responsibilities and how much it pained you to see your loved one suffer. It could also be an indication of how much you have already grieved the gradual loss of your loved one during their decline.
• Let go of guilt and regret. Remember the good you've done by helping and caring for your loved one. Of course, you could have done more or handled some things differently. No one is perfect. But you made the effort and did a lot for your loved one. Focus on what you did that made a difference, rather than what you could have done differently.
• Focus on positive memories of your loved one. Think of times your loved one made you smile or showed their love for and appreciation of you. Think of happy moments you had together. Look at pictures from the past when your loved one was at their best.
• Give yourself time to feel your loss and adjust to the changes in your life. The emotional reactions to a loss can take time to surface and process. They often come in waves of intense and less intense feelings that can last a long time. What you feel today may be very different from what you feel tomorrow, next week, or next month.
• Connect with other people. Caregiving can be isolating. Now that you have fewer demands on your time, reach out to and reconnect with old friends. Spend time with supportive family members. You've lost one human connection with the death of your loved one. Rediscover and strengthen other connections—old and new.
• Accept your anger as genuine, but be careful how you express it. Take care not to damage relations with family members and friends by venting your anger or resentment while your emotions are raw.
• Talk with a professional counselor. It can help to talk through angry, uncomfortable, or confusing feelings with a professional therapist, someone who can help you turn those emotions to good purpose in helping you gain a better understanding of yourself and your relationships.

Moving Forward with Your Life

As a caregiver, your life and your priorities have been tied to the needs of your loved one. Now that your loved one is gone, so are those ties. You have more freedom now to consider how to spend your time. You can now choose your priorities, rather than having them chosen for you. That freedom can be liberating, and it can be frightening.

Take time to consider your next steps in life. As a caregiver, you had probably settled into a daily and weekly routine. You might have accepted as a given that there are things you couldn't do—go away on vacation, for example, spend extended time on activities you enjoy, or take a full-time job.

The part of your routine associated with caregiving is gone now, which you may feel as a loss. But that open schedule is a valuable opportunity. You have a chance now to spend your time in ways that give you a different sense of purpose, increase your income, or bring you different kinds of joy and satisfaction.

Make good use of this change by considering how you'd like your life to be different going forward:

• Think back to your life before you became a caregiver. What activities brought you a sense of fulfillment and pleasure? Whose company did you enjoy? What kinds of work did you find rewarding? The answers to these questions can help guide you to activities, people, and work that might be part of this next stage of your life.
• Take small steps. Try an activity you used to enjoy. Visit with friends you've missed. Prepare food you like. Do at least one thing for yourself every day.
• Considered paid or volunteer work that will give you a new sense of purpose. You were valuable to your loved one in your role as a caregiver. Find new ways to be valuable—to an organization that can use your knowledge and skills or to people who can use your help. (Be careful, though, not to fill the vacuum left by the loss of your loved one with a replacement activity that takes your energy without providing sufficient meaning and purpose.)

As you grieve your loss and adjust to your life moving forward, take care of your health, too. Be sure to get the sleep you need, eat healthy and satisfying foods, and stay active with a daily walk or other regular exercise.