Life After Loss: Beyond the anticipatory grief of dementia

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Family walking together after funeral

The anticipatory grief of dementia can fool caregivers into thinking it will be easier to say good-bye when your loved one reaches the final stages of the disease. “She’s been gone a long time,” people often say, thinking of all the losses that have happened during the cognitive and physical decline of dementia.

But for many Alzheimer’s and dementia caregivers, anticipatory grief does not prevent a feeling of heartbreak, loss, and loneliness after your loved one has died. You may have spent years shaping a life and habits that ensure the safety and well-being of your loved one, so what now? Initially, you might feel relief and gratitude for time to catch up on self care and consider your own needs. And then you might feel guilty about your sense of relief. These mixed feelings are a part of what complicates the grieving process.

Following the recent loss of her mom, Gloria’s Way founder Tonia Porras shares her feelings of restlessness, relief, and loss of purpose—“I have spent so many years doing something that has brought me back here to Cleveland. Now that is gone. Everything is quiet.” 

In her experience of grief, Tonia has days when she needs to take a break from the stories and memories that others share of her mom, as well as days when she loves to hear from friends and family. She also finally has “time to look up and truly evaluate what I currently have and what’s next for me.”

Many people give up a lot to become a caregiver. While you may not regret those sacrifices, you will likely be faced with some unexpected losses (and grief) once you take time to consider how your life has changed. So much can change in the average 4-8 years that most people survive following an Alzheimer’s or dementia diagnosis.

Do you still have the same job status, relationships, and physical health that you did before you started caregiving? Did you sacrifice professional growth or spend your savings on your loved one’s dementia care needs? How do you pick up the pieces, then?  “There are so many  questions left to be answered while grieving at the same time,” says Tonia. 

Part of the anticipatory grief of  dementia is a fear of uncertainty and the unknown. Unfortunately, this fear may not go away when your loved one dies. Instead, it may take on a new, more self-reflective form. Whether you are still in a season of caregiving and anticipatory grief or you are experiencing the complex emotions that often occur following the death of a loved one, keep in mind that there is no such thing as “normal” grief when it comes to dementia. This is also true of grief in general. 

Below are a few gentle reminders that we hope will ease your journey through grief following the loss of a loved one and your loss of a role as a caregiver. 

Give yourself time.

 

Grief experts often recommend that you avoid making major life changes immediately after a loss. Pay attention to signs of rushed decision making and fear-based thinking. Give yourself time to reflect and rest before leaping into your next major commitment or caregiving role.

 

Everyone experiences grief differently.

There is no right or wrong way to cope with grief, unless you find yourself escaping into substance abuse or other unhealthy behaviors. Some people need to talk, some need to cry, and another person might need to go out in the garage and build something. These are all healthy ways of coping. In fact, your own needs, wants, and coping mechanisms may change from day to day (or hour to hour). Be flexible with yourself and with those who are grieving alongside you.

 

Prioritize self care.

Caring for dementia caregivers is central to our mission at Gloria’s Way, and that doesn’t stop once a loved one has died. Healing from grief and loss is a very personal journey, so be gentle with yourself. And remember to pause and ask the question, “What do I need?” as often as possible. By doing so, you will stay in touch with your own needs and decrease overall stress and anxiety, creating more space and energy for healing. 

Connect with others.

Talk to a friend or faith leader, volunteer in a way that honors your loved one, or consider joining a bereavement support group. Sometimes, feelings of being overwhelmed and sad persist, and it seems as if everyone else has moved on while you’re “stuck” in feelings of grief and loss. It may help to speak with a trained counselor or bereavement professional. Below are links to several local resources in the Greater Cleveland area. 

Western Reserve Grief Services | A full service grief support program including groups and individual counseling. Services are offered as an extension of Hospice of the Western Reserve. Remember—your loved one does not have to be a hospice patient in order to connect with bereavement support services. 

Cornerstone of Hope | Support groups, in-person and virtual counseling. Cornerstone of Hope therapy and counseling services are conducted by licensed clinicians with extensive experience working with grief and trauma. All of Cornerstone’s grief support services are offered at an affordable cost or provided free of charge. Through Cornerstone’s Compassionate Care Program, no one is ever turned away for an inability to pay.

Cleveland Clinic Bereavement Services | Our focus is caring for you through compassionate listening, quality grief and bereavement education, and the offering of group services which support healing of mind, body, and spirit. These are all offered at no cost. Groups will be available online during the COVID-19 public health emergency. To sign up for any group, please call 216.444.9819.

GriefShare | Offering seminars and support groups throughout Northeast Ohio, led by caring professionals. GriefShare promotes optimism with weekly meetings and valuable resources to help you recover from your loss. 

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