Gone, but not gone. She is your mother, but not the mother you knew. If she had died, it would be easier to grieve the loss. It’s hard to do that when she’s sitting in front of you. Roberta Epstein
There are close to six million people in the United States living with some form of dementia, cared for by approximately sixteen million adult family caregivers.
Dementia is a cruel, relentless thief that we are powerless to stop. Our loved ones’ personalities wear away piece by piece. As their memories depart and functionality declines, their bodies may remain healthy, making the situation even more painful. Over time, our loved ones remain physically present but don’t remember nor recognize us, leaving us to grieve while they are still alive.
Dementia grief begins with the initial, shattering diagnosis leading to a devastating destination. A place where your loved one is still alive but has no idea who you are. The early stages can be particularly painful as your family member is aware enough to realize they are losing both functionality and memories. Other stages can bring marked changes in personality, rage, profanity, even violence as your loved one morphs into someone you no longer recognize. In the final stage, you are alone, sitting with someone who no longer recognizes you, someone to whom you have become a stranger.
As their memories fade, our loved ones forget how the pieces fit together – who in the family preceded them in death, how old their children are and where they live. They think they live in houses long sold and hold jobs that ended decades ago. They confuse us for other family members and become sad or depressed when their long dead spouse or favorite sibling doesn’t visit.
We also lose the roles our loved ones played – the backbone of the family, the organizer of gatherings, the host of Christmas and other holidays, the peacekeeper, the shoulder we cry on, the sympathetic ear, the keeper of our memories. We are deprived of our most important companions, our sources of support, the people with whom we travel, the loves of our life, our lifelong partners.
Death can bring a sense of relief followed by a renewed sense of loss. You might feel regret or shame about the times you lost your temper, got irritated or became impatient. You might be grateful for the time you had together and the life you made. You might feel angry that your spouse died young or that you had to spend the final years of your marriage caring for someone who no longer recognized you. You might resent other friends or family members with healthy spouses who try to make it better by saying, “She’s better off now” or “At least, he lived a long, full life.”
What helps when you’re caring for a loved one with dementia?
- Realize that your feelings are healthy and normal. It’s challenging, demanding, painful, all-consuming to care for someone with dementia.
- Share your feelings with other people who understand what you’re going through – a trusted therapist, a support group, friends and family who have also cared for a loved one with dementia.
- Know that you will lose your loved one piece by piece during the course of their illness. And that you will grieve every single one of those losses.
- Stay connected with the outside world. Isolation and loneliness make the pain worse. Spend time with friends. Take a class. Engage in the activities you enjoy or find some new ones.
- Realize that others, including your own friends and family members, won’t understand how painful it is to watch one of the people you love most become a stranger. They may see your seemingly healthy loved one and may not grasp how much he or she has and will continue to change.
- Offer yourself grace. Be present instead of perfect. Know that what you are doing is incredibly hard and that you are doing the best you can.
- Take care of yourself. Exercise, eat healthy food, take breaks, sleep, rest. Do something that brings you peace or joy every day, even if it’s just for a few minutes.
- Ask for help. And accept help when it’s offered. Your loved one needs you. To have the necessary energy, you will need the support of other people who love you.
- Cherish the moments of connection, sweetness and love that remain, rather than focusing only on all that has been lost.
An elderly man hurried to his 8:00 am appointment, telling the doctor he needed to be done quickly. When the doctor asked why, the man replied that he has breakfast every morning with his wife, who has Alzheimer’s, at the care facility where she lives. When the doctor asked why he continues to have breakfast with her if she doesn’t know who he is, the man replied, “Because I still know who she is.”
Some of our favorite dementia resources:
- “How My Mother Disappeared” – The mother she knew and loved disappeared slowly right in front of her. She struggled to process what was happening and grieve the loss while her mother remained in plain sight.
- “Finding Joy In Alzheimer’s” – “But my grandmother showed me that we are more than the sum of our memories. She taught me the vital importance of forgetting; and that sometimes it’s only our commitment to remembering that prevents us from accepting the love and peace that surrounds us.”
- “The Terrible Nature of Alzheimer’s: Grieving for Someone Who’s Still Alive”
- “When My Mother Forgot Me” – as her mother lost her memory, she realized that she was losing the mirror in which she saw herself.
- Weeds In Nana’s Garden – beautiful children’s book about the nature of dementia and the power of love
- I Smile For Grandpa – dementia is compassionately explored through a child’s innocent eyes to create a greater understanding of the disease
- Still Alice – Lisa Genova’s debut novel written from the perspective of a 50 year old woman diagnosed and living with early onset Alzheimer’s
- 100 Best Dementia Books Of All Times
- Living With Alzheimer’s – Sean Donal O’Shea shares how his life and his father’s have been affected by his mother’s dementia.
- “Nine Movies About Alzheimer’s And Dementia You Shouldn’t Miss”
- The Hummingbird Project – pairs clients with therapeutic activity specialists who are trained to help older adults re-engage in old passions and explore new interests. Their specialists create customized activity plans that reflect the unique personality, life history, interests and abilities of each client. Their goal is to work with families and care providers to create opportunities for joy. Learn more in this beautiful video.
- Joyful Moments: Meaningful Activities To Engage Older Adults – unique activity cards that help friends and family members engage with an aging loved one.
- Artisan Mind – is a non-profit committed to honoring the dignity of individuals living with physical and cognitive challenges by nurturing their strengths, hope, and joy through creative and spiritually engaging experiences.
- Laughter On Call – provides one-on-one comedy care sessions with dementia patients as well as training workshops for caregivers, family members and staff at senior centers and healthcare facilities. Comedians also perform interactive sessions with groups of families and patients. Learn more by reading “Using Laughter To Connect With Dementia Patients“.
- La Demencia – In 2011, photographer Rich Beckermeyer’s mother, Cindy, brought her parents from their Texas home to Michigan to care for them as they faced the beginning stages of Alzheimer’s and dementia. Shortly thereafter, Rich began capturing his grandparents in a series of stunning black and white images in what turned into a seven year project from 2011-17. Rich also documented the daily struggle involved with being a caregiver by photographing his mother, Cindy.
- Dementia Grief: A Theoretical Model of a Unique Grief Experience – a model of pre-death grief in dementia caregivers. In the model, caregivers’ grief cycles between three states – separation, liminality (the state of being in-between a previous situation and an emerging situation) and re-emergence (characterized by acceptance).
We invite you to become part of our community. Share your story, ask a question, make a comment. We’d love to hear from you.
Never miss an article! Subscribe here to be notified whenever new content is posted to Salt Water.