When a loved one receives a life-changing diagnosis for a condition like Alzheimer’s disease, Parkinson’s disease, cancer, or a permanent disability, your life can change, too. These changes can be even more pronounced if you take on caregiving duties.
If you’re new to the role of family caregiver, know that you aren’t alone. According to the CDC , over 20% of adults in the United States provide some sort of care to a friend or relative on at least a monthly basis. That means that millions of adults in this country are facing the challenges of not just loving someone with a life-changing condition, but also the challenges of caring for them, too.
And these challenges can lead to caregiver grief and burnout.
What is Caregiver Grief?
Putting a name and clear definition to your experience can be liberating... and help you better identify what you need to manage your emotions during this difficult time.
Caregiver Grief - What is It?
Not every single person will experience grief the same way. Caregiver grief comes in many forms and can be a mix of many different feelings and loss, including:
- Ambiguous loss - Closure is powerful and can help us understand a situation and move forward. When closure is not clear or is prolonged, it can lead to feeling lost and uncertain, preventing someone from resolving their emotions or getting necessary closure. Something that is continually exhausting, like caregiving, can lead to feelings of ambiguous loss and that there is no resolution to the feelings of ongoing grief.
- Anticipatory grief - Sometimes we cannot expect a tragedy. It happens suddenly, and we only experience grief after the fact. Other times, such as caring for a loved one who has received a life-changing diagnosis, is different. In these situations, someone can experience what is known as anticipatory grief, or grief that emerges when we anticipate a loss, such as the future loss of a loved one’s life, as is the case with a terminal diagnosis, or loss of life as you know it, as is the case with a chronic condition like dementia.
- Complicated grief - Loss and grief are complex. Complicated grief is when your negative emotions of loss either do not improve with time or continue to decline. The pain you feel is severe enough that it impedes any sort of healing or living your life.
- Renewed grief - Sometimes loss and grief are not felt at once. You can feel them over a long period of time, or long after you thought you had completely healed from a traumatic experience. When caring for someone with a degenerative disease like Alzheimer’s disease, renewed grief is common. The condition worsens over time, and lack of progress or new outbursts from a formerly warm and caring loved one can bring up feelings of grief all over again.
Ways to Manage Caregiver Grief and Loss
The role of caregiver can be rewarding, but it can also come with lots of unexpected emotions, including grief. While managing your loved one during this difficult time can be, well, difficult, it can also be hard to manage yourself and your emotions as well.
Remember, though: You are not alone.
There are plenty of ways you can manage your grief and emotions during this time, including the methods below.
Recognize that this is a grieving process
It helps if you accept that grief can happen at any stage of life, not just after losing someone you love. Loss of free time, loss of an old life, loss of well-established relationships, and more can all trigger the grief process for not just care recipients, but people who are assuming a caregiving role as well.
Accepting a new reality where your loved one is changing—along with your relationship to them—can be unsettling and lead to a wellspring of complex emotions. It can lead to feelings of frustration (Why can’t Mom just listen to me or her doctors?). It can lead to feelings of guilt (I wish my aunt would just pass away so I wouldn’t have to care for her anymore, and I feel awful for thinking that way.). It can lead to feelings of grief and loss (I miss my old life and how my spouse used to be.).
Know that your feelings—even the highly negative ones—are widely shared by others who have also gone through the experience of caring for a loved one who suddenly faces new or worsening cognitive impairment, disease, or disability. Your emotions are your emotions, but what you feel does not have to define your future or how you act.
What matters is how you manage those emotions. You may feel frustrated that your aging family member is acting belligerently, but you still meet her where she is and treat her kindly. You may wish you didn’t have to be a caregiver, but you still perform your duties to the best of your abilities. You may miss how things used to be, but you don’t let that stop you from living in the present and planning for the future.
Accepting that you are likely going to experience grief when you assume caregiving duties means you are more likely to recognize grief reactions when they strike—which means you know what you are dealing with, so you can seek out the help that you need in that moment.
Find a support group and other kinds of caregiver help.
Feeling isolated is common among caregivers. Even if you have wonderful friends who listen to you, it might feel frustrating to talk or vent your feelings to people who don’t quite understand what you are going through. That is why many people find comfort in caregiver support groups, because they offer a chance to connect with others who understand exactly what you are experiencing.
The following are just a few of the many organizations that offer caregiver support groups or can help you connect to one near you:
- AARP Family Caregivers Discussion Group
- Alzheimer's Association 24/7 Helpline (800.272.3900)
- CDC Caregiving Resources
- Dementia Caregivers Support Group
- Family Caregiver Alliance: LGBT Community Support
- Latino Alzheimer's and Memory Disorders Alliance
Take time for yourself
You can’t take care of others if you aren’t taking care of yourself.
Also known as caregiver stress syndrome or caregiver syndrome, caregiver burnout is what happens when someone becomes physically and emotionally overwhelmed by their caregiving experience.
Signs and symptoms include:
- Difficulty concentrating
- Emotional volatility
- Fatigue or loss of energy
- Hopelessness or despair
- Changes in eating habits and weight
- Sleep problems
Caregiver burnout can have some incredibly negative consequences. According to the CDC, unpaid caregiving is associated with:
- Elevated levels of depression and anxiety
- Higher use of psychoactive medications
- Worse self-reported physical health
- Compromised immune function
- Increased risk of early death
Your well-being matters just as much as the person you are caring for. And that means you need to practice self-care, even if (or especially if) you feel that you don’t have the time for it. Taking short walks, a long bath, getting your favorite coffee, or something else personal and just for you can go a long way to helping you feel more relaxed and in control of your life.
If you need an extended break from caregiving duties, you can take advantage of respite care services at local assisted living communities or skilled nursing care communities.
Seek professional help for your loved one.
You don’t have to handle care alone. If you and your family members want extra assistance with caring for someone you love, hiring someone to help with in-home care can be a wonderful way to ensure that your loved one is cared for while also helping you avoid burnout.
When hired in-home help is no longer enough, it may be time to consider residential senior care. We at Monarch Communities® are here to help if you decide that this move is the right one for your family. We can help you decide on the right level of care for your relative and coordinate moving into one of our stellar senior living communities.
’s healthcare provider portal to find hospice care near you. by phone (800-273-8255) or online . It is FREE and available 24/7 in English and Spanish.
Life After Caregiving
Caregiving isn’t forever. At some point, you may need to help your loved one arrange end-of-life care, otherwise known as palliative care or hospice care. This type of care can help the one you love spend their remaining days in peace, with less pain and greater dignity. You can use Medicare.gov
When you say goodbye to your loved one, you may experience the stages of grief all over again, and more powerfully than ever before. At this stage, you can find help by attending grief support groups or grief counseling sessions, as they can specifically help you manage the complicated grief reactions you are feeling.
The following groups can help you confront the grief you are feeling in a safe environment, surrounded by others who know what you are experiencing:
- Grief in Common
- HealGrief - Actively Moving Forward
For mental health emergencies, contact the National Suicide Prevention Lifeline