By Terry Fries-Maloy
Katherine, still in her hospital gown, glared at her daughter as she was carefully maneuvered onto the narrow gurney by two uniformed men. The ambulance, which had been arranged by the hospital discharge planner, awaited them at the emergency entrance. “Mom, I’m so sorry … I had no choice. I can’t give you the care you need. There are no other options.” Katherine lowered her eyes and simply said, “But you promised …”
The above scenario is a common one. During my years as a hospital social worker, I saw it occur over and over again – different faces, different medical conditions, but the same “promise.” “Mom, I’ll never put you in a nursing home.”
My own mother, who suffered from a life-long mental illness and, in her later years, dementia, spent the last two years of her life in a nursing home. Despite compassionate care by the nursing home staff, my mother hated every minute of her life in the facility and made that fact clear to me each time I visited. “Why did you put me here?” “When can I go home?” “Get me out of here!” Each visit was painful for both of us, but I knew that I could not provide the care she needed and was grateful to the staff who could.
Maybe it was my years of practice as a geriatric social worker that helped me to approach my mother’s aging process from a realistic and informed perspective. I never made “the promise” as I watched my mother slowly lose the ability to live independently. As my need to provide hands-on support to her in her home increased, my only ‘promise’ to her, and to myself, was to keep her safe and healthy for as long as possible, to keep her as independent as possible, to help her live in her home as long as it made sense to do so and to be certain that, if she did need placement, that I would find a facility that would provide her quality care that I would oversee.
Because of my professional background and practical experience, I knew that making “the promise” of giving my mother the false hope that she could stay in her home until the day she died was unrealistic and, more important, unfair to both of us and likely unachievable. That sudden severe stroke that results in significant mobility challenges, extreme behavior issues associated with dementia or the need to deliver complex medical care are just a few of the reasons that keeping an elder at home may not be an option.
Many of us are working full-time jobs out of necessity and managing busy families and complex lives. Even for those who do not work or who have the ‘luxury’ (and it may be no luxury at all) of quitting their job to provide care, there may be certain conditions that require skills or abilities that are beyond one person’s capabilities. A person with advanced dementia may be combative, unreasonably demanding or wander unsafely all night. Following a stroke a person may require two people to transfer from bed to a wheelchair, to dress and to bathe. Even significant urinary or bowel incontinence in an elder may impact one person’s ability to provide adequate care in the home.
And, as our parents and grandparents are living longer, we caregivers are aging right alongside them. It’s not uncommon to find a seventy-plus-year-old daughter or son trying to take care of parent who is past age ninety. In addition to medical and physical difficulties which may affect a caregiver as they age, the social isolation often associated with caring for someone with significant needs can lead to the caregiver developing depression and a further decline in physical health.
When “the promise” is made, or even more challenging, when an elder asks you to make “the promise,” look deeper to discover what is driving that request. Is it fear of being abandoned? Is it resistance to change? Is it fear for their safety? Fear of the unknown? A more honest and realistic response may be “I’ll always look after you,” or “I would never place you in danger and will do everything within my power to keep you safe,” or “Your happiness, health and safety will always be a priority for me.” Elders can spare their children (and possibly their own) future emotional distress and disappointment by never asking others to make “the promise.”
If you have already made “the promise,” know that, promise or no promise, sometimes there simply is no choice. Recognize that, just because your parent or other family member may enter a nursing home, doesn’t mean you are no longer a caregiver. It means that your role as caregiver will shift from hands-on to a supervisory and advocacy role. You can share the care with the nursing home staff and help create a better life for your family member and ultimately peace of mind for you. Get to know the people who are caring for your parent and thank them often. Speak up when you feel care could be improved and be a part of the nursing home “team” to resolve any issues that need to be addressed. Attend the regular “care plan” meetings and include your parent whenever possible in any decisions relating to his or her care.
Feelings of guilt are common when one has to break “the promise.” You can find support for your choice in a variety of settings – from your family and friends, from the staff at the nursing home, from your physician or clergy person, through attendance at a caregiver support group or with individual counseling. By stepping into a changed caregiving role, you may find that you are more patient, feel less stressed and have more energy to give to your elder. During your visits at the facility, you can then focus on enjoying the time you have together rather than on the sometimes overwhelming tasks of hands-on caregiving.
In a 1990 Ann Landers column addressing a fan who wrote that “the promise … has ruined my life,” Ms. Landers notes “… there is no moral law that requires a person to keep that promise and pursue a course of action that will create hardship and cause resentment.” An honest, open discussion about the possibilities for an elder’s future care today can go a long way in avoiding feelings of guilt, disappointment and resentment in the years to come.