Caregiver Grief: How to Cope Before & After a Parent’s Death

Caregiver grief describes the intense emotions that family caregivers often experience leading up to and after losing a loved one. While most of us equate grief with sadness, the caregiver grieving process can also include guilt, anger, relief, numbness, exhaustion, and loss of purpose. These feelings are normal, but moving through them can be challenging, and it’s common for caregivers to feel isolated in their experience.

If you’re wrestling with caregiver grief—whether you’ve lost a loved one, or are watching them decline—you are far from alone. Read on to learn more about anticipatory grief, grief after a parent’s death, signs and symptoms, coping strategies, and how to get help.

What is caregiver grief?

About 70% of deaths happen after a chronic illness like cancer or dementia. In the months or years before they pass, chronically ill seniors are frequently cared for by family members. Yet as prevalent as senior caregiving is, we don’t always talk about the unique feelings of grief that caregivers experience.

Caregiver grief encompasses the intense set of emotions that caregivers experience while caring for a loved one who is declining, as well as the grief that occurs after a loved one passes. Caregiver grief doesn’t just involve feelings of loss, but also caregiving stress, financial anxiety, changes in relationships, and complicated feelings about the end of the caregiver role.

As difficult as caregiving grief is, the reality is that most senior deaths involve prolonged caregiving. In this way, caregiving and grief are often bound together. Being aware of this can’t always take away the pain, but knowing that you aren’t the only one going through this experience can be comforting. 

Anticipatory caregiver grief

How can you grieve someone who is still alive? It’s hard to fully understand this concept before you’ve been in it personally, but if you’re taking care of a senior who is in declining health or experiencing cognitive issues, you may understand that it’s possible to be in full grieving mode even while your loved one is very much alive.

Caregiver grief and anticipatory mourning often go together. Anticipatory grief—or grieving someone who is still alive—is most common when caring for someone with:

• A chronic illness
• Cognitive decline or dementia
• Severe mobility challenges or frailty
• A terminal illness

Why does this happen? While seniors in decline are still themselves in many ways, caregivers may notice shifts in personality, and declines in overall energy. What’s more, the dynamics in the relationship may drastically change. You might feel like you are now the parent, and your parent is now the child.

These shifts can be startling and upsetting. For many caregivers, it can feel like you’re losing your loved one slowly and painfully, before they’ve even passed away. 

The unique anticipatory grief in dementia caregiving

Depending on which type of dementia a person has, the progression can be quite slow and last for several years. During that time, caregivers don’t just notice loss of memory and the decreased ability of the person to live independently, but also serious and heartbreaking personality changes. These may include impulsiveness, loss of empathy, emotional instability, indifference, and behavioral changes that may include fits of anger or toddler-like meltdowns.

For me personally, as the caregiver to my mother who has Alzheimer’s disease, personality changes and behavior problems have been some of the most difficult parts of the experience. To watch a strong, capable woman turn into a small child is one of the most painful things I’ve witnessed. I never expected to lose my mother this way, and the grief it has caused me feels like a tremendous weight on my chest.

But I know that I’m not alone. These changes—while devastating at times—are a normal part of the disease. It’s nothing your loved one is doing on purpose. But that doesn’t mean it doesn’t trigger intense feelings of frustration and grief.

Caregiver grief after the death of a parent

The loss of a parent is one of the most intense kinds of grief a person may experience in their lifetime. But caregiver grief after the death of a parent is its own distinctive experience.

Grief is almost always a complicated experience, but caregiver grief after the death of a parent may feel particularly overwhelming and confusing. On the one hand, you are mourning your loved one, and may feel profound levels of sadness and loss. But these feelings may be intermingled with relief and a sense of appreciation that your loved one is now at peace. 

Caregiver burnout

It’s also common to feel caregiver burnout mixed with grief after the death of a loved one. This can lead to feelings of guilt, emptiness, and feelings of heightened stress. It’s common for caregivers to feel completely exhausted and depleted after losing a loved one, because their guard can finally be let down after months or years of having to keep everything together for their loved one. 

Grieving the caregiver role

You may also be wrestling with your changing role. So many caregivers become entrenched in their role as manager of every aspect of their loved one’s life—from medical care, dealing with insurance companies, and feeling responsible for the emotional well being of their loved one—that when the role ends, they may not know what to do with themselves.

In this way, caregivers mourn not only their loved one, but the role of caregiving itself. 

The caregiver grieving process

Many of us are aware of the five stages of grief—denial, anger, bargaining, depression, and acceptance—and expect that grief will follow a predictable path. But rarely does grief play out in distinctive stages. It typically comes in waves or cycles, and you may move through different experiences of grief in unpredictable ways.

Caregiver grief in particular may be complicated by caregiver burnout, the echoes of prolonged stress, financial stressors, and complicated family dynamics. Years of anticipatory grief may also influence how your grieving process plays out, so that by the time death actually happens, you may have moved through some of the stages of grief already, and find yourself experiencing other feelings, like relief and guilt.

Some people are surprised or ashamed of the feelings that arise when they are grieving a loved one—in particular, the feeling of relief that may arise after someone you cared for has passed. You can be assured that all of these feelings are normal. Just because you’re relieved that your caregiving role has ended, it doesn’t mean that you love your parents any less.

Relief can co-exist with love, and most people are relieved not only for themselves, but that the suffering their loved one experienced is now over. 

Recognizing signs and symptoms of caregiver grief

Wherever you are in your journey, caregiver grief includes a mix of emotional, emotional, and physical symptoms. Some of the emotional and mental signs you might notice include:

• Sadness
• Stress
• Anxiety
• Irritability
• Feelings of guilt
• Anger
• Feeling empty or numb
• Trouble concentrating
• Experiencing a loss of purpose 

Caregiver grief somatic symptoms

What surprises many people is that caregiver grief can have somatic symptoms, too: symptoms that are located in the body. For example, grief might be experienced as:

• Worsening of health conditions you already have
• Digestive issues
• Headaches
• Muscle aches
• Trouble sleeping
• Trouble concentrating
• Feeling depleted

Importantly, if you are experiencing new or worsening health symptoms that aren’t going away or are disrupting your daily life, you should see a healthcare provider to rule out potential medical issues. 

Why caregiver grief can feel so intense

If you’re feeling like caregiver grief is more intense than you expected it to be or than you think it should be, you aren’t the only one. Many of us have this experience. That’s because caregiver grief isn’t just the grief of losing a loved one—it’s grief compounded by a caregiving experience that can last for a long time, and can be traumatic at times.

Some factors that make caregiver grief so intense include:

• Caregiver burnout
• Isolation while caregiving
• The impact of long-term caregiving stress
• Financial worries
• Having to wade through health insurance red tape
• Complicated family dynamics
• Feeling torn between relief and sorrow 

Complicated grief

Although it’s normal to experience intense feelings tied to caregiver grief, grief that lasts for a long time and makes it difficult for you to function might be a sign that you’re experiencing prolonged grief disorder, often called complicated grief.

Complicated grief is characterized by feelings of intense loss and longing for the person you’ve lost, intrusive thoughts, and trouble moving past the loss. It can impact your day-to-day life and relationships with others. Prolonged grief disorder (PGD) is a mental health disorder included in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR) and is usually diagnosed when you’ve had symptoms for six to 12 months.

The important thing is that complicated grief is treatable. Please reach out to a therapist if you think you might have complicated grief disorder. If you are on Medicare, Sailor Health therapists—who specialize in later-life mental health issues—can support you in managing your complicated grief.  

Coping strategies

Caregiver grief can be very challenging to live with. That said, there are some strategies you can employ to move through it more comfortably and with resilience.

Caregiver grief coping strategies that may be helpful include:

• Allowing mixed emotions to exist without judging them
• Opening up to someone supportive, such as a good friend or fellow caregiver
• Joining a caregiver support group
• Rebuilding simple routines after caregiving ends
• Prioritizing sleep, food, movement, and basic self-care
• Creating space to remember and honor your parent
• Seeking therapy
• Giving yourself permission to rest and adjust slowly
• Allowing yourself to grieve in small doses
• Letting yourself engage in activities that feed your soul, including hobbies and meaningful interpersonal relationships
• Reminding yourself that you can’t be the person you need to be for your loved one or for other family members if you don’t fill your own cup first 

How Sailor Health can help

Therapy can be enormously helpful for seniors in declining health or facing the dying process, as well as their caregivers.

Therapy for seniors can help manage feelings of fear, anxiety, and sadness about aging and dying. In turn, this can be beneficial to caregivers by lessening the load they bear as the “family therapist” to their loved one.

Additionally, research has found that allowing caregivers to talk about their experience is extremely helpful and healing, both before and after the death of their loved one. It’s not just having someone to vent to—therapy can help you manage the complex emotions that come up during the caregiver grieving experience.

Sailor Health is a specialized provider of affordable, effective mental health therapy for seniors, and our therapists specialize in the experiences particular to this population. If you’re also a Medicare beneficiary, therapy through Sailor Health can help you work through grief, complicated grief, anticipatory grief, PTSD, burnout, anxiety, depression, and more.

We work directly with Medicare to keep costs low, and most Sailor Health patients pay $0 out of pocket. Telehealth therapy sessions take place either by online video call or over the phone, making mental health support more easily accessible. 

We make it easy to get started, and can help match you with a credentialled counselor who fits your needs and preferences. You could begin therapy in as few as 24 hours after signing up. Take the first step today.

Caregiver Grief FAQ

Is it normal to grieve before a parent dies?

Yes. Most of us think of grief as something that happens after we lose a loved one, but it’s normal to experience grief in the months or years before someone dies, as you are watching them decline.

Why do I feel relief after my parent died?

Relief is a valid and normal feeling to experience after a loved one dies. This is especially common if your loved one’s illness lasted many years, created a huge burden on you, or if you witnessed your loved one suffering for a long period of time.

How is caregiver grief different from caregiver burnout?

Caregiver grief describes the feelings of sadness, relief, anxiety, and other complex feelings you may feel as a caregiver for a loved one who is in decline or who has recently died. Caregiver burnout describes the physical and emotional exhaustion that’s frequently experienced by caregivers.

What is a caregiver grief inventory?

Caregiver grief inventory is a tool designed to measure caregiver grief and anticipatory grief in dementia caregivers.

Does Medicare cover telehealth therapy for grief support?

Yes. Medicare covers therapy for grief counseling when necessary to treat a mental health condition related to grief such as depression, anxiety, prolonged grief disorder, or others, and this therapy can happen virtually. 

References

1. Nielsen, M. K., Neergaard, M. A., Jensen, A. B., Bro, F., & Guldin, M. B. (2016). Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Clinical psychology review, 44, 75–93. https://doi.org/10.1016/j.cpr.2016.01.002 
2. Vandersman, P., Chakraborty, A., Rowley, G., & Tieman, J. (2025). "I thought he had longer than that": family caregivers' experiences of grief, loss, and bereavement in residential aged care. BMC palliative care, 24(1), 296. https://doi.org/10.1186/s12904-025-01929-6 
3. Boerner, K., & Schulz, R. (2009). Caregiving, bereavement and complicated grief. Bereavement care : for all those who help the bereaved, 28(3), 10–13. https://doi.org/10.1080/02682620903355382 
4. Toyama, H., & Honda, A. (2016). Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home. Global qualitative nursing research, 3, 2333393616682549. https://doi.org/10.1177/2333393616682549 
5. UCI Mind. (2025). Personality Before Memory? When Subtle Changes Signal the Earliest Stages of Dementia.
6. https://mind.uci.edu/personality-before-memory-when-subtle-changes-signal-the-earliest-stages-of-dementia/ 
7. EKR Foundation. (n.d.). Dr. Elisabeth Kübler-Ross and the Five Stages of Grief.
8. https://www.ekrfoundation.org/5-stages-of-grief/5-stages-grief/ 
9. Hirano K. (2025). Awareness of Care Managers Concerning Grief Care for Older Bereaved Individuals Living Alone Following the Loss of Their Spouse: A Qualitative Research. Nursing reports (Pavia, Italy), 15(10), 346. https://doi.org/10.3390/nursrep15100346 
10. Szuhany, K. L., Malgaroli, M., Miron, C. D., & Simon, N. M. (2021). Prolonged Grief Disorder: Course, Diagnosis, Assessment, and Treatment. Focus (American Psychiatric Publishing), 19(2), 161–172. https://doi.org/10.1176/appi.focus.20200052 
11. Chan, I., Yap, P., Wee, S. L., & Liew, T. M. (2020). The three dimensions of caregiver grief in dementia caregiving: Validity and utility of the subscales of the Marwit-Meuser Caregiver Grief Inventory. International journal of geriatric psychiatry, 35(2), 213–222. https://doi.org/10.1002/gps.5238