In this four-part series, we explore the stages of dementia grief and loss for those affected. Understanding the process, accepting your feelings and learning healthy ways to cope with the emotions will help you and your family during these difficult times. Walking this path is never easy, but with compassion, understanding and acceptance, you and your loved ones can have a meaningful, fulfilling and loving journey.
As a caregiver to a loved one with dementia – or as a person dealing with a diagnosis of dementia – managing your feelings of grief and loss is one of the most challenging, significant issues you will face. Dementia is a progressive and ultimately fatal disease that destroys brain cells, resulting in memory loss, ability loss and ultimately the loss of one’s self. Whether you’re the individual with dementia, you’re caring for a spouse or you’re a loved one watching the disease progress in someone you care about, loss and grief are feelings you will walk hand in hand with throughout all stages of the dementia journey.
“Grief and loss are not feelings we feel and then get over,” says Andrea Campisi, Marketing and Admissions Director of The Reutlinger Community, a Continuing Care Retirement Community in Danville, CA. “Instead, they are ongoing emotions that will ebb and flow throughout the journey, shifting to focus on different aspects at different times. One day, you may mourn the loss of your plans and dreams for the future. The next, you may grieve the loss of the person you loved – even if he or she is still there. These feelings of grief and loss can make the experience even more difficult as you move through the process of the disease.”
It’s important to remember, says Andrea, that those living with dementia are feeling those emotions of loss and grief as well. “Dementia can be doubly difficult for those living with it because they are mourning the loss of the abilities and future they hoped for as well as the reality of what they’re losing day by day,” she says. “For those of us who are caregiving or love someone with the disease, it’s important to find ways to manage our own grief while also supporting and helping our loved ones through their personal journey of loss and grief, too.”
Ambiguous Grief and the Dementia Journey
As mentioned in the first part of this series, ambiguous grief is a form of grief that differs from the more “traditional” grief that comes from a loss like death. This is because ambiguous grief does not have closure or resolution, because you’re dealing with the loss of someone who is still alive and, often, someone who is still quite present physically and mentally. However, the ambiguity for the future and the feelings it causes can be difficult to cope with. Fortunately, understanding this very unique form of grief can help to forge a path forward.
“Ambiguous grief is what you feel when a loved one is still physically there but is not as present in the same way as they were before,” says Andrea. “This form of grief is complicated because we aren’t taught how to process this form of loss, and friends and family may not know how to provide adequate support.” Ambiguous grief can also confuse existing relationships and prevents the parties from moving on. For example, if you’re married to someone with dementia, you may not feel like you’re still in a romantic partnership because your spouse no longer recognizes you.
These feelings of grief and loss are ongoing and not a one-time trauma that can be worked through and dealt with. Throughout the dementia journey, you and your loved one will experience many losses, and it’s important to acknowledge each of them. It’s surprising, but healing happens when you’re able to allow yourself to feel the loss, grieve through the pain and move past it instead of avoiding it. By recognizing, adapting to and moving from these losses, you and your loved ones can make the positive changes needed to enhance the quality of life for everyone in your circle.
Tips for Managing Your Feelings
Find others who share your experience.
Look for others who are dealing with dementia, whether it’s an in-person support group, online forum or others in your circle who have lived through a similar experience. Finding those who understand where you’re coming from is the best, most healing thing you can do to cope and manage your feelings throughout the dementia journey. Being with people who understand where you’re coming from and who won’t judge you will provide immeasurable support.
Understand that grief is not a linear experience.
Unfortunately, grief is not something you will experience and move past. Loss will come throughout the journey, and each time you will need to accept, absorb and move through it as it comes. Knowing that some days will be easier than others, and that loss can come in waves, will allow you to be gentle with yourself and give yourself permission to grieve as the losses come – while also celebrating and enjoying the moments that are good (of which there can be many).
Find ways to mourn in your own way.
Each of us walk the grief and loss journey in our own way. There is no one right way to navigate your feelings, so take the time to find ways to grieve and mourn in your own way. This may be by communing with nature, going to church, finding a support group or any other approach that works for you. Don’t get caught up in the “right” way to grieve and instead focus on what works for you. If you need to cry, that’s fine – but if you want to laugh or make jokes, that’s okay, too. Consider speaking to a therapist experienced in dealing with dementia loss to manage your feelings and find creative, productive ways to mourn.
Practice mindfulness and acceptance.
Learning techniques like meditation or mindfulness can be instrumental in managing and accepting your grief during the dementia journey. It may seem strange that your most powerful tool is learning to accept your grief and be present in the moment. However, accepting that dementia and the grief that comes with it is merely a part of your life that you are learning to live with can help refocus and reframe your state of mind.
Cherish the time you have left.
As much as you can, cherish the moments you have with your loved ones for the time you have left. Spend time together, make memories together and create fulfilling moments that will fill you up and nurture you for years to come. Remember that, although we don’t know what the future will hold, we can hold fast to what we have at this moment – and that we can live, love and experience life in those heartbeats and those breaths. Take each moment and each day as it comes and embrace the love and life that can stem from living an existence of love and appreciation.
For more information about dementia caregiving, or to learn more about our community, mission and values, please contact us at 925-272-0261.
Premier Senior Living, Dedicated Care
The Reutlinger Community’s mission is to provide high quality health care and social support services in a life-enhancing and stimulating environment with a commitment to Jewish values.
Offering Assisted Living, Enhanced Assisted Living, Memory Care, Skilled Nursing and Rehabilitation, The Reutlinger Community provides a continuum of care that allows seniors to live a life-enhancing and stimulating environment. Located in Danville, California, The Reutlinger Community’s newly renovated, 110,000 square foot community combines the comfort and familiarity of home with seasoned senior care and skilled nursing specialists to suit any senior’s needs, allowing them to live the life they choose with freedom and security.
Because we specialize in a continuum of care, our residents never need to worry about leaving the community they call home or wonder what will happen when they need some more care. Residents and families alike can have peace of mind knowing that there are full-time licensed nurses available, along with activity coordinators, social workers, caregivers, a concierge and Rabbi who focus solely on helping each resident thrive. Even better, our services and amenities are equal to those of a state-of-the-art resort. This is the lifestyle and care that your loved one deserves.
At The Reutlinger Community, seniors have numerous opportunities to engage in award-winning programs that are designed to engage the mind, renew the spirit and provide opportunities to meet new people and learn something new. Whether residents are enjoying our art program and museum, listening to a lecture or educational program or attending spiritual programming and our wide range of activities, there’s something for each resident to love. Participate as much or as little as you like, the choice is all yours.
For more information or to schedule a personal tour, contact us today.