Guilt and Caregiving
Dr. Tam Cummings, Gerontologist
Dementia caregivers are often solo caregivers of a Person with Dementia for ten or more years before reaching out for help from skilled nursing facilities or assisted living and memory care communities. The stress, exhaustion, and intense level of care involved means dementia caregivers are placing their own health and in many cases their own lives at risk.
One of the most stressful things family caregivers face is the decision to seek outside placement for their loved one.
There are a number of reasons for feeling this stress. Typically, care has been going on for a decade or more and the family caregiver is physically and emotionally exhausted. The caregiver may be afraid of what others will think of them, there may be no funds available, or the behaviors of their loved one may be embarrassing or challenging. Spouses and relatives may see placement as the breaking of wedding vows.
Cultural issues for African American, Hispanic American, Asian American, and other families may mean facing severe backlash for placement of a loved one into dementia care. Members of the family, church members, neighbors, and other friends may view the move as abandonment rather than an attempt to get your loved one the specialized medical care they need.
Addressing guilt, the giant elephant in the room, is critical for an ongoing partnership of care.
Many people have made a promise to loved ones to never place them in a nursing home. Chances are people made this promise never realizing there were diseases like the dementias that eventually require specialized, round-the-clock medical care.
By Stage Five, People with Dementia require a great deal of reminders, hands on assistance, socialization, exercise, care, and patience. In Stage Six, two caregivers may be required for transfers, bathing, and toileting. Stage Seven means two or more caregivers may be required to do full care for the person with dementia. The care is physically challenging and is mentally and emotionally exhausting as well.
Other families may be dealing with the social expectations of caring for a loved one at home. African-Americans and Hispanic Americans have the highest risks for Vascular Dementias and the least support for care. They may even face a loss in social standing or family backlash. Other groups also face shame at home, places of worship, or in their neighborhoods, all for seeking outside care that their loved ones need.
It is important to support all families in their decision to turn over care of a loved one to medical professionals, to encourage them to join support groups, and to praise them for their loyalty to their loved one.
People who shame caregivers about seeking outside assistance are showing a lack of education about the disease, a lack of awareness of its impact on the person with dementia, and a lack of understanding about the physical, mental, and emotional impacts on caregivers.
The stress the caregiver faces is dangerous, with research in 2018 determining that an estimated two in 10 family caregivers are dying before their loved ones, due directly to the stress of care.
Once a person with dementia needs placement with professional caregivers, will the family come back for breakfast or lunch or dinner? Will they come to holidays, birthdays, parties, and education nights? Will this family continue to visit and treat this person with dementia as an honored family member? If the answers are “yes” then the family and the caregiver need to let the guilt go. No one expected dementias to appear, no one knew this would happen, and no one understands what the family caregiver faces, except for other family caregivers and perhaps the professional caregiver.
The move into the community should allow the family caregiver to return to being a spouse or a son or daughter. Time together can be spent sharing a slice of pie or watching an old movie, not changing a brief, or arguing about a dirty shirt.
Don’t discount the level of stress suffered by the family caregiver. That crabby, short-tempered, exhausted person may be doing dementia care and working at a fulltime job and providing for a family still at home. There is significant stress suffered by the caregiver and a heightened risk of death.
Being open and honest about the care the person with dementia needs gives families the information they need to seek out professional care.
Seeking out the professional care that a person with dementia needs is a very challenging and emotional process. Feeling guilt is common and caregivers may or may not receive the support of their families and communities throughout this difficult time, which makes support groups for the family caregiver critical. The family caregiver’s own health is at risk during this disease and a support group can save the caregiver’s life.
Dr. Tam Cummings As a gerontologist, Dr. Tam provides private consultation and education services to families, extensive education courses for nurses, social workers, administrators, activity directors, and marketers, keynote addresses and breakout sessions on dementia or the aging process for national, state or regional conferences and individualized programming for dementia and memory care communities.
Dr. Tam has worked in dementia communities for more than two decades, giving her firsthand experience with persons with dementia, their struggles and behaviors and the frustration families and professionals face daily. She has used that experience to develop her stages of dementia tool. She is dedicated and passionate about helping care partners learn the skills needed to provide for care.
Dr. Tam has been the director of social work for a skilled nursing facility, the program director for memory care communities and a geriatric case manager for persons with dementia. She has been in private practice for more than four years.