For years before her death at age 96, Nancy Lundebjerg鈥檚 mother underwent a long, slow decline.
Arthritis made it hard for Margaret Lundebjerg to get around. After two hip surgeries, she needed a walker when she was out and about.
Incontinence was a source of discomfort, as was the need to rely on aides to help her perform daily chores.
Little by little, Margaret became frail and isolated. 鈥淭here was a sadness to seeing my mother鈥檚 circle of life become diminished,鈥� said Nancy Lundebjerg, 58, CEO of the American Geriatrics Society, who wrote about her experiences in the organization鈥檚 .
The anguish accompanying aging isn鈥檛 openly discussed very often, nor is its companion: grief. Instead, these emotions are typically acknowledged only after a loved one鈥檚 death, when formal rituals recognizing a person鈥檚 passing 鈥攖he wake, the funeral, the shiva 鈥� begin.
But frailty and serious illness can involve significant losses over an extended period of time, giving rise to sadness and grief for years.
The loss of independence may be marked by the need to use a walker or a wheelchair. The loss of a cherished role may dishearten an older woman who is no longer able to cook dinner for her extended family, gathered at the holidays. The loss of shared memories may be painful for adult children when their older father is diagnosed with dementia. And these are but a few examples.
Looming over everything is the loss of the future that an older adult and his or her family imagined they might have, often accompanied by anxiety and dread.
This pileup of complex emotions is known as 鈥渁nticipatory loss.鈥� 鈥淭he deterioration of function, disability and suffering have their own grieving processes, but helping families deal with that isn鈥檛 built into the health care system,鈥� said Dr. John Rolland, professor of psychiatry at Northwestern University鈥檚 Feinberg School of Medicine and author of 鈥�
Rolland and several other experts offered advice on how to deal with difficult emotions that can arise with frailty or serious illness:
Acknowledge Your Feelings
鈥淕rief starts the moment someone with a serious illness receives the diagnosis,鈥� said Tammy Brannen-Smith, director of grief and loss services at Pathways, a hospice in Fort Collins, Colo. But it doesn鈥檛 stop there. Each time a capacity is lost 鈥� for instance, an older adult鈥檚 ability to negotiate stairs, to drive or to manage household finances 鈥� sadness and grief can arise afresh. Brannen-Smith encourages people to acknowledge their feelings and try to 鈥渘ormalize them, because people don鈥檛 understand that everyone goes through this.鈥�
Talk Openly
When families avoid talking about an aging parent鈥檚 frailty or serious illness, the person with the condition can become isolated and family relationships can become strained.
鈥淢y view is, you鈥檙e better off trying to get through whatever you鈥檙e facing together,鈥� Rolland said.
When Rolland works with couples who are dealing with multiple sclerosis, for instance, he asks them to make a list of things they鈥檇 like to discuss but don鈥檛. 鈥淯sually, there鈥檚 about a 75 percent overlap, and it鈥檚 a tremendous relief to most people to find out they don鈥檛 have to keep things locked up inside,鈥� he said.
鈥淧eople who are facing serious illness think about what might lie ahead all the time,鈥� Rolland said. 鈥淔or a family member not to bring this up, for everyone to be off in their own grieving pockets, alone, isn鈥檛 helpful.鈥�
Communicate Sensitively
Abigail Levinson Marks, a clinical psychologist in San Francisco, regularly works with adults who have brain tumors, which can alter their thinking and wipe out their memories, as dementia does for millions of older adults.
鈥淧eople with these conditions aren鈥檛 the same as they were before, but it would be heartbreaking for them to know that you didn鈥檛 see them as the same person,鈥� she said. 鈥淪o, the truth becomes something that cannot be named and that everybody avoids, for fear of shaming the person.鈥�
In her practice, Marks asks 鈥減eople to share what each person is going through and not worry about protecting each other from what they鈥檙e feeling,鈥� she explained. 鈥淏ecause protecting each other leads to feeling more alone and magnifies the feelings of loss.鈥�
For a caregiver of someone with dementia, that might mean saying,鈥淪ometimes you might see a look crossing my face and think that I鈥檓 disappointed. It鈥檚 not that I鈥檓 upset with you. It鈥檚 that I鈥檓 sad that there are things that happened in our past that we don鈥檛 remember together.鈥�
For someone who has suffered a stroke, it might mean encouraging them to open up about how hard it is to lose a measure of independence and be seen as someone who鈥檚 disabled.
Lean In
How people respond to sadness and grief varies, depending on their personality, past experiences, the relationship they have with the person who鈥檚 frail or ill, and the nature of that person鈥檚 condition.
鈥淪adness can make you cherish a person even more and appreciate small moments of connection,鈥� said Barry Jacobs, a Pennsylvania psychologist and co-author of 鈥�.鈥�
Some people, however, can鈥檛 tolerate feeling this distress and end up distancing themselves from someone whose health is declining. Others might show up in person but focus on tasks instead of allowing themselves to connect emotionally.
If possible, lean in rather than letting yourself become distant. 鈥淐herish the time that you have together,鈥� Jacobs said. 鈥淩ather than pulling back, move toward the person and be as engaged with them as possible, particularly on an emotional level.鈥� In the end, connection eases the pain of grief, and you鈥檒l be glad you had this time with the person.
Seek Support
鈥淒on鈥檛 confront grief alone or in isolation,鈥� said Alan Wolfelt, founder and director of the in Fort Collins, Colo. 鈥淗ave people around you who are supportive and who will be present for you鈥� 鈥� family members, friends, people from a support group, whoever is willing to be a companion through your journey through serious illness.
Ultimately, this journey will help shape how you ultimately experience a loved one鈥檚 death.
Wolfelt describes mourning his mother twice. 鈥淭he day she was diagnosed with Alzheimer鈥檚 and all the days I watched her dwindle. And then, the day she died, I had to begin mourning again, at a whole other level.鈥�
But Lundebjerg of the American Geriatrics Society found a measure of peace when her mother finally passed away, after two seizures and the family鈥檚 decision not to pursue further treatment. 鈥淚t was OK that she died because she was ready 鈥� she had made that very clear. And I had come to peace, over a very long time, with the fact that this was going to be coming.鈥�
We鈥檙e eager to hear from readers about questions you鈥檇 like answered, problems you鈥檝e been having with your care and advice you need in dealing with the health care system. Visit to submit your requests or tips.
黑料吃瓜网 News鈥� coverage of these topics is supported by , and