Dementia and Alzheimer’s Disease are among the most challenging health diagnoses for caregivers. The sense of loss takes on unique characteristics when we watch the person we knew disappear before our eyes. We often experience grief both similar to and different from what we feel when someone we love dies. But with dementia, that loss is often less clear and harder to talk about than when a loved one passes away. When the stress and grief of caring for a loved one with Alzheimer’s builds up, it can take a significant toll. Self-care is essential, and so is identifying our limits. Many caregivers reach a point where a dedicated memory care facility is the best option for giving their loved one the compassionate support and safe environment they need.
What Is Dementia Grief?
The gradual loss of a loved one to Alzheimer’s or dementia brings up many of the same thoughts and feelings we have when someone dies. The psychologist Dr. Kesstan Blandin, writing for Dementia.org, calls the process “dying two deaths.” When a loved one dies, the loss is final. With dementia, there are two deaths: the gradual loss of the person and then their physical death. Blandin identifies some of the characteristics associated with Alzheimer’s and dementia:
- Compounded loss: losses that occur one after another and build up over time. Caregivers watch as loved ones lose the ability to navigate basic tasks like driving and self-care. These losses snowball and can become overwhelming.
- Anticipatory grief: feelings of grief that caregivers experience before their loved one dies. We see this with cancer and other terminal illnesses, but it can hit especially hard with Alzheimer’s. Our minds prepare for our loved one’s physical death. At the same time, we’re grieving the loss of their psychological presence. We may also be devastated when we realize we can no longer care for a spouse or parent.
- Disenfranchised grief: grief that others don’t acknowledge in the same way as traditional grief. With dementia and some other forms of loss (including suicide), we may not talk about our experience because of stigma or lack of understanding.
- Ambiguous loss: a significant loss that lacks clarity or finality. When our loved one has Alzheimer’s, they may be physically present but psychologically absent. We may feel guilty for grieving their loss because we don’t have the sense of finality that comes with physical death.
How Can Caregivers Cope With Dementia Grief?
Caring for a loved one with dementia can bring stress, guilt, frustration, sadness and anger. Blandin has several recommendations for coping with dementia grief:
- Find a community of other Alzheimer’s families to share experiences.
- Identify and engage in mindfulness practices.
- Find time to grieve in your own way, and recognize that this will not necessarily look the same as if your loved one had died.
Other tips for caregivers include:
- Individual counseling and support groups.
- Respite care for your loved one allows you to take time for yourself (your local Agency On Aging can be a great resource).
- Explore the possibility of long-term memory care when the mental and physical toll of caregiving becomes too much.
When Should I Consider Memory Care?
In an interview with U.S. News and World Report, geriatrician Dr. Elaine Healy identifies five signs that it may be time for memory care for a loved one with dementia:
- Changes in behavior
- Confusion and disorientation that put physical safety at risk
- A decline in the patient’s physical health
- Caregiver’s deterioration
It’s worth noting that experts focus on both the patient’s health status and the caregiver’s well-being when determining whether long-term care is needed. If you are experiencing mental and physical health challenges because of your caregiver role, it’s vital to seek support. Memory care units offer specially-trained staff and facilities to meet the needs of patients with dementia and Alzheimer’s. Choosing memory care allows you to visit and support your loved one without having to shoulder the entire burden of their care.
The memory care unit at Evergreen Health & Rehab offers secure, round-the-clock memory care. Every aspect of the unit’s design–from décor to engaging programs to meals and a quiet atmosphere–creates a soothing, home-like setting for people living with Alzheimer’s disease.
As a caregiver, you may be hesitant to give up your role. But high-quality memory care gives you the time and space to process your grief, along with the peace of mind of knowing your loved one is in good hands. If you’d like to start the conversation, the professionals at Evergreen are ready to listen.