Twelve Things NOT to Say to a Caregiver

By Beverly Bigtree Murphy, MS, CRC, Caregiver
Courtesy of the Monterey County Chapter of Alzheimer's Association

It is time to discard the old clichés that have been imposed on us. I would like you to think about some of these statements before you use any of them. More important, I want you to challenge others when they say:

1. "The Burden of Caregiving."
   Webster's Dictionary defines "burden" as: "That which is borne or carried; a load. That which is borne with labor or difficulty. That which is grievous, wearisome or oppressive; as, my burden is greater than I can bear. The carrying of loads; as, "a beast of burden." The phrase, "the Burden of Caregiving," is used almost exclusively to describe the care of our elderly. Every time you use the word "burden" in relationship to caregiving, you are imprinting a negative image. Child rearing is a "challenge." The care of the elderly is a "challenge." Caregiving is a "challenge." We have to stop denigrating the care of our elderly as being something out of the ordinary. Our elderly deserve the same regard and love, as do our children who are just as dependent upon us for help.
   
   
2. "Let's face it, none of us want to be a burden to our children."
   None of us want to be a burden to anyone. We all hope to die without needing someone else to care for us. And while this is a universal desire, the fact remains that few of us will have that luxury. Most of us will need to be tended to by someone else before we die. Our ultimate hope is that we will not be diminished in the eyes of those who decide to help us.
   
   
3. "No one should have to sacrifice their lives for another."
   Caring for another human being is about unconditional love. It is not about being a patsy. Those of us who take on the challenge feel that it isn't a sacrifice in the negative sense of that word. Our care is about commitment and obligation. Whatever our reasons, they are ours, and they are not for anyone else to judge.
   
   
4. "Your family member would never want you to do this for them, they would want you to get on with your life."
   I actually heard this said to an 85-year-old man who had just put his wife of over 60 years in a nursing home. The support group leader failed to relate to the grief he was feeling and the comment she made only angered him. Besides, what does "getting on with your life" mean to an 85-year-old whose wife of 60+ years is still living? What does this comment mean to any of us who are caring for a family member? This statement is about justifying what feels like abandonment. It is not about comfort.
   
   
5. "It is so hard watching someone lose their dignity."
   Dignity is in the eyes of the beholder and has nothing to do with whether or not a person can dress, feed or toilet themselves. Those are simply tasks. They are not a measure of a person's worth as a human being.
   
   
6. "You will want your children to remember their grandparent as they were, not as they are now."
   This is used as an excuse to justify not visiting a frail elderly member of the family. Generations of people before us shared the aging and death experience with their elders as a continuum of the life cycle without any known perversion of their memories during happier times. We respond to what we are told to expect. If there are no expectations for connection, none happen. However, vast numbers of us experience a sense of completion and peace by being able to share the last days with a family member. Some of us learn to see it as a rite of passage, a necessary part of our personal growth. We also view it as our role in helping our family member meet their transition with dignity and grace.
   
   
7. "Isn't it time to put your person in a nursing home? How much longer are you going to keep them home?"
   I have heard this offered as a response to just about any question a caregiver can ask - from "Where do I get a wheelchair? My wife stopped walking last week and I've been carrying her around the house. I need help!" to "My husband keeps missing the toilet; can anyone in this support group help me figure out what to do?" It is as if the world at large thinks all you have to do is drive your person up to a nursing home and drop them off and voila! the care problems go away. They don't! First, those caregivers with a sense of a continuing connection with their institutionalized family member, their involvement is often magnified by the fact that the care has been transported to a "foreign" place. Second, quality nursing home care is expensive. The majority of caregivers facing Alzheimer's with a family member do not have the money, and they often don't qualify for the Medicaid entitlement. Nursing homes are not an option for the majority of caregivers, and it is not because they don't know they exist. Third, this question is rarely an answer to requests for options, information, tools, and respite, an exploration that should include examination of the home-care choice as well as the nursing home choice.
   
   
8. "Why visit him so much, he doesn't even know who you are anymore?"
   I maintain that what matters is that we know who they are. If you do nothing more than nurture and tell them you care about them, you have fulfilled your obligation as a human being. We don't wrestle with these issues in working with infants who will die, if denied nurture. We have learned that people in a coma benefit from the presence of their family members. Are our elders, particularly those with dementia, less needful of human contact, touch, and tender loving care? Loneliness is not something that disappears with old age.
   
   
9. "Don't feel guilty. You've done everything you can."
   Guilt is not the word to use. People deal with grief issues when they leave a family member in a nursing home. If these issues are explored, caregivers might find resolution to the decision they made. I believe if caregivers are given the opportunity to explore all the care options, there is less separation trauma when and if nursing home placement becomes the reality.
   
   
10. "You should get out more often."
    Isolation, lack of money, and loss of friends often leave the caregiver with nowhere to go. It is an easy solution that is often tossed off by well-meaning helpers who haven't stopped to recognize that unless the family member is taken care of, the caregiver is going nowhere. The advice needs to be given along with options about volunteers, respite opportunities and information on daycare.
    
    
11. "Enough about your family member, I want to know how you're doing."
    The primary caregiver and the family member become entwined in ways that are often not recognized or valued by outsiders. There is a deep and often very complex bond that forms between the caregiver and the family member. When well-meaning helpers exclude the family member in their attempt to focus on the caregiver's needs, it often serves to isolate the caregiver even more.
    
    
12. "You must be so relieved it's over." (Used after the family member has died.)
    A caregiver who has lived through a long-term illness with a family member is still going to experience mourning when the person dies. The grieving process they face may be different from those who face a sudden death, or the death of a child, but the loss is just as deep. To diminish this event, is to dismiss the effort they made in care as well as their connection with that person.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.