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.
The period between a dementia diagnosis and the eventual death of the person has been labeled “the long goodbye” by experts, and for good reason. When individuals are diagnosed with a terminal disease such as cancer, heart disease or anything else, they are able to retain their “self” until the very end. But for individuals with Alzheimer’s disease or another form of dementia, the disease robs them of their personalities, abilities and self. By the time someone with cognitive impairment passes away, the person they were – the person whom loved ones remember – has been “gone” for some time.
“It seems a little taboo to say, but when a loved one with dementia dies, it can feel like they’ve already passed away years ago,” says Andrea Campisi, Marketing and Admissions Director of The Reutlinger Community, a Continuing Care Retirement Community in Danville, CA. “The family and friends of someone with dementia become strangers over the course of the disease, and vice versa. This can make the grieving and adjustment period unique once the individual has passed away.”
There’s no right or wrong way to process the feelings that come following a loss, says Andrea, nor is there any one road to follow. “You may find yourself wavering from one extreme to the next. One day, you may feel relieved that the ordeal is over; the next, you may be wracked with grief and remorse. It’s important to remember that all these feelings and stages are normal and are to be expected following a complicated loss that a disease like Alzheimer’s can cause.”
Dealing with Loss and Bereavement
Throughout the dementia journey, those who love the individual experience grief in many ways. This can begin as soon as a diagnosis has been made, throughout the caregiving process and all the way to after the person has died.
Everyone’s relationship with grief and bereavement is personal, and everyone will face it in their own unique way. How you and your family members will feel after your loved one has passed away is affected by many different things, including your relationship, your history, your role during the dementia journey, the grief you’ve already experienced throughout the process and so on.
Sometimes, after an individual with dementia dies, their caregiver may discover that the grieving process doesn’t start fully until days, weeks or even months after their loved one’s passing. This is known as delayed grief. It’s not uncommon for caregivers to feel a sense of emptiness or loss of purpose. It can be hard to adjust to life without your loved one after they’ve been a part of your daily life for such a long time.
To cope with these feelings and the grief you may be feeling, it helps to talk to someone you trust. This can be a close friend, family member, spiritual leader or a professional psychologist. Dementia caregiver support groups can be especially helpful during this time. The most important thing is to recognize your emotions, accept them and work through them in healthy ways.
Tips for During and After Bereavement
- Try not to make any big, life-changing decisions immediately following the person’s death. While moving to a new place, getting rid of all your loved one’s personal items or getting a new job may seem like a good idea at the time, it’s best to wait and process your feelings so you don’t do anything you might regret later.
- While it’s important to reflect and grieve in your own way, try not to become isolated from friends and family. Being around others you trust, and love can help you work through your loneliness and sadness and help you build a path to what life will look like now.
- It’s okay to hold on to mementos of your loved one, such as a piece of jewelry they always wore or a favorite comfort item. Keeping these items can help you feel connected to your loved one and give you an anchor during the grieving process.
- Take care of yourself physically, mentally and spiritually. If you’re a religious person, consider reconnecting with your spiritual family and practicing your beliefs – this can be helpful and healing following a bereavement. Be sure to stay in touch with your personal physician, too. You are more susceptible to illness following a loss (everything from catching colds and the flu to depression). Get enough sleep, eat a healthy diet and get plenty of exercise.
- Try to reconnect to people, hobbies and interests that you enjoy. You may pick up an activity that you’ve put aside, or you may want to try something new. This will give you something to look forward to and be interested in and can also give you a social outlet.
- When you’re ready, talk about your loved one and reminisce over the life you shared. You can commemorate their life by creating a photo album, sharing personal belongings with those they loved, collecting donations for a fund, planting a tree or holding a memorial service.
Know that readjusting to life following bereavement can be a long process, but that there will come a time when you’ll be able to move forward. If you feel like you’re struggling and unable to reach the point of acceptance, please consider finding professional support to help you find what you need.
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.