The days after a dementia diagnosis are a blur of doctor visits, assessments, questions, planning, and processing. For many seniors and their families, the first and most powerful experience after a dementia diagnosis is grief. Understanding this grief better can help you cope while moving forward with caring for your loved one.
Understanding Different Kinds of Grief
A dementia diagnosis represents a huge loss. However, the feelings about it are complicated because it is a loss that will happen in the future. This type of grief is called anticipatory grief. The anticipation of a future loss can be harder to bear than the actual moment when it comes. In part, this may be because anticipatory grief is a way of preparing yourself for what will happen.
Another common type of grief is ambiguous grief. This happens when a loss feels incomplete or undefined. Because your loved one is still alive, there is not a clear, single moment of loss to point to. Ambiguous grief feels complicated and messy. You may even feel guilty for grieving because your loved one is still with you.
These complex types of grief are very real and very normal. You may experience them intermittently throughout the experience of living with or caring for dementia. Recognizing and making room for your grief is one of the best ways to cope and move through it.
Dementia and the Stages of Grief
You’ve likely heard of the stages of grief before. Being informed about these helps you better recognize your feelings, step back, and take space to engage in self-care.
While we speak of grief as having stages, the reality is not always clear-cut or predictable. You may revisit certain ideas again and again, or in an unexpected order. It’s also impossible to know how long each individual may take to work through their grief. What one person may process in weeks could take another person months or even years.
The stages of grief include denial, anger, bargaining, guilt, sadness, and acceptance. It’s particularly important for caregiving family members to be aware of denial, anger, and guilt.
Grief Pitfalls for Caregivers
Denial is a way in which you may distance yourself from painful feelings of loss. While it is a normal, important part of the grieving process, caregivers must pay close attention to avoid clouding of their judgement. Denial about new or worsening symptoms of dementia can lead to costly and sometimes tragic delays in treatment.
Many carers also struggle with anger. Often, anger is triggered by frustration when a parent or spouse can’t meet expectations based on their past abilities. Or you may feel angry at friends or family members whose grief does not mirror yours, or who aren’t directly involved in caregiving.
When you become angry, give yourself space to breathe, rest, and safely express your feelings, such as journaling, speaking with a counselor, or physical exercise. Remember that your anger is a normal part of grieving. This helps prevent outbursts that could be harmful to relationships or caregiving goals.
Finally, when caring for an ailing family member, guilt can be treacherous. Many carers, especially those caring for a spouse or parent, feel guilt about the idea of taking a break or using respite. Any tiny mistake or lapse in caregiving can open the door to painful guilt.
You may also feel guilt as dementia progresses beyond your ability to manage. You may feel a responsibility to provide care that does not match your level of training or availability. Or, you may worry that seeking professional help means that you have failed your parent in some way.
Remember that dementia is a serious disease. There comes a point for most families when the reality of dementia demands more than their personal ability to provide care. In the same way that you would not expect to provide all care for other serious illness, such as cancer, there is no shame or failure in seeking professional nursing care for dementia.
Cycles of Grieving
Often, families revisit the same kinds of grief repeatedly as dementia progresses. With each new stage of cognitive decline, there are also new losses to deal with. As memories, physical ability, and independence dwindle, families often feel that they have to say goodbye to their loved one more than once. Each new loss triggers the grief process in a new way.
If you find that you are revisiting the different stages of grief more than once, remind yourself that this is okay. There is no right or wrong way to grieve, and each stage of dementia may feel like it brings you back to where you started. Allowing yourself the space to feel and express these emotions can help.
Are you coping with a new dementia diagnosis in a loved one, or providing care at home for a senior with dementia? Click here now to learn about our senior care support groups and other resources for families and caregivers like you.