Caring for a loved one who has a prolonged illness or terminal condition can be tough. Seeing them suffer is even more challenging, and having your loved one die is almost unbearable. As a caregiver, you learn to balance your caregiver duties against the pain of seeing your loved one suffer.
Jump ahead to these sections:
- What Can You Expect After the Death of Someone You Cared For?
- What Types of Grief Do Caregivers Experience Before and After a Death?
- Tips for Dealing With Caregiver Grief After a Death
- How Caregivers Can Adjust to Life After Caregiving
- How You Can Help a Grieving Caregiver
Caregiver grief is real. It can consume you, keep you from functioning from day to day, and cause you to feel a profound sadness and loss. This type of grief is a form of anticipatory grief, one of the different types of grief you can experience as someone who provided end-of-life care to a dying loved one.
What Can You Expect After the Death of Someone You Cared For?
The passing of your sick or terminally ill loved one can have you feeling both guilt over their death and relief that they’ve passed on. These feelings of shame are typical of caregivers whose loved one has died while under their care.
You can expect to mourn not only their death but also all the cumulative grief that has piled on since you took over their care.
What Types of Grief Do Caregivers Experience Before and After a Death?
Society may overlook a caregiver's grief, as caregivers typically provide comfort and support to those facing the end of life. Caregivers can vary from trained medical providers adept at dealing with the effects of grief to a patient's loved ones with no prior experience. Although the levels of grief experienced may vary significantly from one individual to another, caregiver grief is a deep concern. There are three dimensions of caregiver grief that can affect individuals in this role.
Ambiguous loss
Ambiguous loss in caregivers stems from the confusion created when a loved one may be physically present but may not otherwise be cognitive, such as in cases of dementia patients or those in a coma. This type of loss is difficult to cope with because the caregiver may struggle with accepting the eventual death of their loved one while holding on to hope.
In many cases, the caregivers face losing their loved one's companionship while continuing to provide comfort, care, and support.
Anticipatory grief
Individuals facing the end of life may live at home being cared for by family members who are not trained to deal with death, dying, and the bereavement process. Caregivers can unwittingly begin the grieving process well in advance of their loved one's death while being unfamiliar with the anticipatory grief process that occurs before death.
Anticipatory grief includes financial losses, loss of companionship, and changes in the caregiver's roles and identity. Caregivers must cope with personal sacrifices, burdens, isolation, sadness, longing, and worry, along with other grief-related effects of loss.
Delayed grief
Caregivers experience higher levels of loss after the death of the loved ones they’ve cared for because of the added responsibility of their role. Many caregivers experience delayed grief responses to the immediate death of their loved one in part because they’ve emotionally shielded themselves from further loss.
They may also face delayed responses because grief can take some time to fully settle in. A caregiver has to adjust to the changes in their daily workload and caregiving responsibilities.
Tips for Dealing With Caregiver Grief After a Death
Finding ways of coping after your loved one’s death can prove challenging, especially when you’ve never before been in this situation. You may need to seek professional grief counseling to help you sort through the feelings and emotions you’re experiencing.
The following are some tips you can try at home that may help you deal with your grief:
1. Accept your role as caregiver
Assessing your role as a caregiver to your loved one may help give you a different perspective on the outcome. It’s typical for you to feel that you didn’t do enough while your loved one was alive, or that somehow you could’ve prevented or delayed their death. These feelings are part of the grieving process that follows the death of someone whose care you were providing.
Learn to let go of caregiver guilt. Caring for those who are incapacitated and can no longer care for themselves is always going to be a challenge. You may find yourself going over everything you should’ve done or could’ve done to be a better provider to your loved one. The reality is that your role was a limited one. Your job was not to figure out a cure or to bring your loved one back to health. In assessing your responsibilities, ask yourself the following questions:
- Did I provide the best care I knew how?
- When I felt frustrated, did I take a step back and course-correct?
- Was there anything I could’ve done differently?
You may find that you answer the first two questions in the negative and the last one in the affirmative. Remember that you are only human. Everyone makes mistakes or acts in ways that they later regret. No one’s perfect. During those times when you fell short, remind yourself that you had a tough job to fulfill.
2. Recognize the signs of depression
It’s normal to feel sadness and pain over your loss. These feelings are natural and are part of the grieving process. It’s also natural and expected for some caregivers to feel numb or relieved after their loved one’s death.
How do you know if what you’re feeling is grief or depression? Many people with signs of depression don’t know that they’re depressed. For caregivers, depression is common, especially for those who haven’t gotten past the feelings of guilt, shame, and remorse associated with caring for someone that has died.
Some common signs of depression are:
- Feeling sad, empty, and hopeless
- Changes in eating habits
- Changes in sleep patterns
- Lack of motivation
- A loss of interest
- Feeling numb
- Neglecting your physical well-being and appearance
- Thoughts of death or suicide, ideas of how to end your life
If you’re experiencing any of these symptoms that won’t go away, your grief may have developed into depression. Consider seeking the advice of a professional to discuss ways for you to cope with your feelings.
3. Allow yourself time to grieve
You may be feeling spent after the death of your loved one who you’ve been caring for, and it may have left you physically and mentally exhausted. Take some time for some self-care and allow yourself to grieve their death.
When a caregiver spends most of their time looking after someone who’s sick, it’s easy to get caught up in all of the things you have to do to ensure they’re adequately cared for.
After their passing, you may not know what to do with yourself. You’ll suddenly find yourself with all this free time but not know how to respond to their death. Grief may not set in for a few days or weeks after the day they die. Don’t rush things or wonder why you might not be feeling the typical symptoms of grief immediately after suffering a loss.
4. Figure out what comes next
After the death of your loved one you’ve been caring for, you may not know what to do next. Expect that after all of the death and funeral planning is taken care of, there’ll be a time of adjustment following. The routines that you had developed as a caregiver will suddenly disappear, and you’ll need to reclaim the life that you left behind.
Some of these adjustments will be greater than others. Take your time to get used to no longer having your loved one in your life or the constant demands of caregiving eating away at all aspects of your time.
5. Focus on rebuilding your life
Grief can consume you at some point after the death of your loved one. After enough time passes, and you’re starting to feel better, focus on getting your personal life back on track. Undoubtedly you had to give up many parts of your life and who you were when you became a caregiver.
A good way of getting past your grief is to focus on the things that bring you joy, like connecting with your old friends and acquaintances, going out and enjoying the outdoors, or taking in a movie.
6. Seek professional help
Everyone grieves differently. The path to healing can be more challenging for some than others. Seeking the professional help of a grief therapist may help you to understand your grief process better.
A counselor or therapist can teach you ways to deal with your grief and cope with your pain and sadness in ways you may not have considered. There isn’t any shame in admitting that you need help managing.
7. Reconnect with others
Although you may not feel like socializing after suffering such a tremendous loss, reconnecting with others opens the door to receiving the love and support that you may be needing right now.
You can start by taking small steps. Pick up the phone and call your sibling, best friend, or even your neighbor. Let them know how you’ve been feeling and invite them over for some coffee. Take things as slowly as you need to until you start to rebuild your connections to the outside world.
8. Get some exercise in
Caregiving duties may have left you without much time for yourself, let alone to get some exercise. Exercise releases feel-good endorphins that can keep depression at bay and help you better cope with your grief.
Any amount of activity is helpful to get you back on track with reclaiming your physical, mental, and emotional well-being. You don’t need to join an expensive gym - a walk around your neighborhood, to begin with, will help you boost your outlook on life, which will make you feel better.
9. Get sufficient rest
Proper rest is essential in bouncing back from major setbacks in life. You’ll not only need to reset your sleep schedule but your downtime as well.
You can expect your routine to be out of whack for some time following the death of your loved one until your brain begins to register your new reality. Your mind will still be racing in overdrive for a few days or weeks following. A racing mind is normal and is expected to settle down after a few days.
10. Try meditation
If racing thoughts keep you from getting proper rest and make you feel anxious, give meditation a try. Simple ways of calming the mind are also useful for keeping stress at bay, lowering blood pressure, and making you feel less anxious.
Meditation can be as simple as doing some breathing exercises and focusing on your breath. You don’t need special equipment or a special place to meditate. You can do it anywhere and anytime - even in a room full of noisy crowds.
11. Talk about it
Consider joining a caregiver support group to help you cope with your grief. Getting together with others who’ve shared in similar situations will help you open up about your particular experience.
There is no shame in admitting that you need help or having difficulty adjusting to your grief following your loved one’s death. You can share memories of your loved one with your support group and discover new ways of coping with your grief.
How Caregivers Can Adjust to Life After Caregiving
Adjusting to life after loss as a caregiver will take some getting used to your new dynamic. One of the first things you may notice is that you don’t know what to do with yourself once the person you cared for is gone. All the daily routines in keeping your loved one cared for in comfort are no longer there.
The daily habits and routines you developed will take some time to undo. In the meantime, you may feel loneliness and sadness as a result. Know that in time, you’ll start developing new habits and routines to fill your day.
Some things you can do to make things easier as you focus on rebuilding your life and identity are to:
1. Reflect
Take a moment to reflect on your life over the past several weeks or months when you started to care for your loved one. Think back to what your life used to be like and how it evolved during that time.
Ask yourself the things you gave up that you once enjoyed doing and whose company you most enjoy before becoming a caregiver. Learning to recognize these types of losses is a great place to start when it comes to mapping your future life post-loss.
2. Take time to grieve
Your pain and suffering can stem from the various losses you’ve experienced since your loved one passed. It’s not only their physical presence that you’ll miss. You may find yourself grieving for the loss of their companionship, the role you played in their life as you cared for them, and having to face a future without them.
Before jumping back into your old routines, allow yourself time to process your grief and reflect on your losses. Pushing yourself to get back to normal too soon may create some unexpected grief reactions.
3. Rebuild and reconnect
When you find yourself ready to move forward, take small steps in rebuilding your life back up. You can begin by reconnecting with your support system and social circle. Consider making yourself available for social invitations, dining out, and other opportunities you might have to reclaim your old self.
Your loved ones may feel unsure of approaching your grief and may not know how to open up conversations around that topic. You may need to steer the conversation the first few times until they learn how to communicate with you as you grieve your loss.
How You Can Help a Grieving Caregiver
Offering your love and support are always great ways to help someone you care about get through their grief. Remember that it’s not your responsibility to ensure that someone who’s grieving moves past their pain. Only they can do that for themselves.
However, what you can do is help a grieving caregiver come to terms with their loss and get through some of the most challenging times resulting from the death of the person under their care. When deciding how to help them best, determine how you can help without putting too much pressure on yourself. Here are some ideas.
Be their cheerleader
Sometimes all a grieving person needs is to have someone in their corner cheering them on and telling them what a great job they're doing. Caregivers who are grieving may find it challenging to ask others for help. They don't want to be considered a burden or extra weight for their friends and family to contend with, so they may not let on the extent of their pain and sadness.
Take time out each day or a few times each week to check in on them and ask them how they're doing. Ask them to give you daily examples of what they're doing to move through their loss.
Become a life coach
Who doesn't want to have their very own coach walking them through the exact next steps to achieving a successful grief recovery journey? Help your caregiver friend or loved one find new purpose and meaning in their life by talking to them about what options they're considering.
Don't be afraid to ask them about their dreams and aspirations. Let them take over the conversation once you've set the framework to get them thinking about their life after loss. Most people will discover their true joys and passions when they're allowed to talk about them.
Be a friend
More than anything, your bereaved caregiver will need a friend whom they can rely on when things get tough. Don't just offer to be there for them whenever they need. Find ways to make yourself available so that the caregiver doesn't have to come to find you to ask for help.
A true friend learns to anticipate others' needs and acts upon them without needing prompting or reminding. Consider reaching out daily by phone or text and planning weekly outings so that the two of you can spend some quality face-to-face time.
Dealing With Caregiver Grief
Caregiver grief is unique to only those who’ve cared for a loved one who was sick and dying. The role you played was an important, yet all-consuming one that forced many life changes upon you. With time and by working on your grief, the path to healing and coping can become easier.
If you're looking for more ways to get through your grief, read our guides on how to cope with a dying parent and sibling estrangement after a death.