What to Expect Before Losing a Loved One

Melissa Murphey’s dad was diagnosed with dementia in 2015 at 84 years old. As his condition progressed over the last decade, she experienced a sense of loss. “I miss being able to reminisce and ask for his recommendations in life. I miss his storytelling, his wit, and his humor. He was a man of few words growing up but his words were impactful and influenced decisions in my life,” she says. 

Gradually grieving her elderly dad while he is still living is a different kind of grief than Murphey experienced after the loss of her mom. When Murphey was 21 years old, her mom died suddenly of an aneurysm at 52 years old. The unexpectedness of the loss gives her a unique perspective as she navigates her dad’s situation. 

“I feel fortunate to have my dad in my life. He has lived 40 years longer than my mom,” says Murphey. “It is bittersweet, but losing my mom while in college has allowed me to learn more about my dad, his journey as an Irish immigrant, and strong work ethic, and allowed me to develop a closer relationship with him.” 

Gratitude is perhaps the best way Murphey knows how to cope with anticipatory grief, which is grief that is experienced when expecting a loss. “We feel this sense of mourning before the actual loss occurs. We know that in time, we will lose that person/place/thing, and so we preemptively feel the loss and the grief,” explains Gina Moffa, LCSW, psychotherapist and author of “Moving On Doesn’t Mean Letting Go.” 

Understanding Anticipatory Grief

Anticipatory grief refers to intense feelings of sorrow before a loss occurs. A person may grieve as they anticipate death of a loved one or cognitive changes due to a mental health condition like schizophrenia or terminal or age-related illness like Alzheimer’s disease. They may also experience anticipatory grief due to a divorce or non-death-related circumstances. 

For those witnessing a loved one face dementia, Elizabeth Edgerly, PhD, senior director of community programs and services at the Alzheimer’s Association, says grief can be more complicated. While the sudden loss of someone to a heart attack, stroke, or accident is deeply painful, she says witnessing the decline of a loved one as they face a disease like Alzheimer’s is unique. 

“Grief starts when someone is diagnosed. People start to experience the loss of future plans like living in Europe for a year,” says Edgerly. “It’s like a thousand cuts, a little bit here, a little bit there, so you are experiencing this grief, this loss, over a longer period of time.” 

The Emotional and Physical Journey of Grief

The impeding loss of a loved one affects people differently. While people can never fully prepare, Moffa says they can show up for the emotional, psychological, or physical experience that arises rather than pushing it away. 

“What so few of us know with grief, especially while anticipating grief, is that it takes endurance,” she says. “With that, we have to take good care of our body—get physical rest, even if you cannot sleep, move your body, get fresh air, drink enough water, and make sure you’re eating nourishing foods.” 

Avoid self-medicating or numbing your feelings with alcohol or food, so you can stay healthy and able to endure the toll that grief and the lead-up to it can take, Moffa adds. 

Take note that you may experience a plethora of physical symptoms, as well, as grief is a full-body experience, says Moffa. “Full-body experiences [may include] headaches, stomachaches, increase or decrease in appetite, sleep disturbances, sexual disturbances, and many more,” she says. 

The Role of Communication

As a loved one faces dementia, Moffa says to embrace keeping an open dialogue when it is possible. 

“Sharing our love, commitment, favorite memories or talking about making more, having important logistical conversations where necessary, and being able to share feelings of fear, or grief is healthy in relationships,” she says. 

While communicating now won’t take away grief when the person is gone, it can help you feel like you haven’t left anything unsaid. “Having honest conversations in very vulnerable times can be daunting and challenging…remember that everyone, including the loved one who is ill, will have many feelings and thoughts, and so going gently and tenderly is most important for everyone,” says Moffa. 

Communicating may change over time and may come and go with dementia. “It can be jarring to folks when all [of a] sudden it seems like your loved one is there and present and able to communicate, and that moment may be fleeting, but you want to take advantage of that moment,” says Edgerly. 

During the early stages of the disease and on days a person is doing well cognitively, she suggests asking your loved one if they would like you to point out changes you witness as their condition progresses and asking them about logistical decisions they want you to make for them. Asking them how they are feeling and if they are noticing any changes can also be meaningful. “It’s pretty amazing to talk through with someone you love what they are experiencing, if they are able to,” says Edgerly. 

As the disease progresses and communicating verbally becomes harder, she says one way to deal with the loss is to communicate in non-verbal ways such as giving them a hand massage or listening to music together. Finding ways to keep a connection can “help with the real sadness [of] not being able to have those heart-to-hearts like you used to,” Edgerly says. 

Coping Strategies for Anticipatory Grief

Coping with the impeding loss of a loved one can take a toll. The following strategies might help with the process. 

Become Educated on Alzheimer’s Disease

“Recognize that there is a progression in disease [by] understanding what is going to be happening. You won’t know exactly when, but you’ll get a sense, and acknowledge, recognize, and give yourself time and the support to deal with these losses along the way,” she says. 

For instance, in later stages of dementia, many people may not recognize their family members or friends. Knowing this can help you cope with the reality of the disease and mourn the different phases and symptoms it presents. “You have to remind them who you are and work through that, so it’s the combination of understanding what to expect and how to handle it in the moment so that the person living with dementia has the most successful experience in life,” says Edgerly. 

“I have taken time to read information and belong to groups on social media that provide insights and tips with dementia and aging,” says Murphey. 

Express Your Feelings

Learning of a terminal diagnosis or witnessing a gradual decline of a loved one can be anxiety-producing. Given so, Moffa says expressing your emotions is essential. She suggests keeping a journal or writing notes in a small notebook as a therapeutic tool to help you process your feelings and experiences.  

Seek Out Support

Finding support from others who are going through the same thing can help you process the experience. “Sometimes that’s other people in your family and sometimes it is absolutely not people in your family,” says Edgerly.  

Online communities and message boards like the Alzheimer’s Association’s free ALZConnected community offer connections to people sharing their insights. “You can feel pretty alone and sometimes online communities can make you feel like you are not alone [because] others are going through the same thing,” Edgerly says. 

Murphey finds online resources helpful, and she credits her dad for being an excellent example of seeking out support. “He needed to pivot with the sudden loss of his wife. He did an excellent job of seeking out resources, participating in bereavement groups, and expanding his social network,” she says.

If support groups are not your thing, consider finding a mental health professional with knowledge of dementia and anticipatory grief. “Sometimes it hard to find the right fit so be patient; you might have to try different therapists out but it’s never too early to start,” says Edgerly. 

Find Closure at Your Own Pace

People accept the inevitability of loss at individual times and may not be the same as other family members. “Some people do not accept it until the last breath of someone they love because the loss feels too immense to process beforehand,” says Moffa. “Grief is messy and clumsy and non-linear. Grief comes when it comes, and there is no need to rush peace or ‘closure.’” 

Preparing for the Future

As you learn to understand the inevitability of loss, it is possible to find peace and closure. For Murphey, knowing her dad is safe and content in his day-to-day brings her comfort. “We have done all we can to have him transition to a memory care facility where there are many activities for
him to participate in,” she says. “We visit often and bring him strong Irish tea and coffee that he has always enjoyed.”

Bottom Line

Grieving a loved one as they face an age-related illness brings about complicated emotions. Understanding their condition, finding ways to cope with your feelings, and seeking out support can help manage the process.