The slogan she saw on a man's t-shirt at the mall stopped Brenda in her tracks. "It said 'Normal Is Dull,'" recalls the 55-year-old caregiver whose mother has Alzheimer's disease. "I just stood there thinking, 'You should spend a few days with us, mister. You sure wouldn’t have to worry about normal being dull anymore!"'
If there is a common experience shared by nearly all caregivers, it is that things they once did routinely, sometimes on only a moment's notice, suddenly become difficult or even virtually impossible. Simple, everyday, normal things like running to the store, going to the movies, taking a spontaneous long walk or sleeping late in the morning all must give way to the demands and logistics of providing for their care recipients. In addition, caregivers often must perform tasks that are not part of the normal day for other people, doing such things as feeding a disabled teenager, changing the clothes of an incontinent parent or keeping a constant eye on an increasingly confused spouse.
But while normalcy is undoubtedly a casualty of caregiving, there are things that caregivers can do to restore some facets of a normal life to themselves and their family.
Acknowledging the Limits of Normalcy for Caregivers
Nan is the mother of two sons with cerebral palsy. Ten-year-old Aaron uses a walker; thirteen-year-old Jay is in a wheelchair. Her experience as a caregiver herself and as a licensed clinical social worker in private practice has taught her that caregivers must look at normal from a different perspective.
"You are just setting yourself up for frustration if you are trying to judge your own life by comparing it to what is normal for other people," she cautions. "If you do that," she says, "you'll constantly be thinking of yourself as a failure for failing to achieve normal, and no caregiver should think that."
Her sentiments are echoed by Al, whose wife suffers from multiple sclerosis. He recalls a trip they took together five years ago. "In a normal life you just make reservations and go. Our trip wasn't that simple. I had to think about access to the bathroom in restaurants, arrange for handicap accessible bathing facilities and be concerned about bedwetting, to name just a few." He believes that despite these difficulties, "You just keep trying to do as much as you can do until you can no longer do it." There comes a point, he says, when you must do less and you must accept those limitations. “You can’t be judgmental about it. You just have to do your best. There is no basic training for caregiving – it’s a lot of trial and error.”
Finding Your Own Normalcy
Both Al and Nan have made a concerted effort to normalize at least a part of their own personal lives. Prior to his retirement, Al, who found that the MS Society would provide resources toward respite care, routinely would add a couple of vacation days on to his business trips to give himself a chance to renew his energies. "Those opportunities to go to the movies, or for a walk or to visit a museum gave me a life outside the sickroom. That part of my life was normal," Al says.
Support groups formed another oasis of normalcy for Al. "Illness is isolating and friends really don’t know how to deal with it," he says. Even though he initially resisted getting into a support group, when he did join, he found a wealth of help and information. ''We shared medical information, but I also got tips on how to cope," he recalls. "Hearing that these other caregivers felt the same things I did made me feel more normal."
Nan also advocates a strategy of keeping a portion of a normal life just for you. "You need to look back at your old life and find something that you used to do that was really important to you and try to get that back. Choose something that you enjoyed or that relaxed you and give yourself the opportunity to do it at least one in a while,” she counsels. Having been there herself, she is quick to caution that caregivers should not feel guilty about taking these snippets of time to recharge. "This isn't being selfish," she says. "This is something you deserve and that will make you a better caregiver."
One great help, Nan has found, has been her friendship with a woman whose child also has cerebral palsy. Their outings together with their children reinforce a sense of normalcy because they understand each other. “We say things to each other that we could never say to anyone else,” Nan explains. “It’s very comfortable.”
A final tip from Nan concerns a constructive way to vent the natural feelings of anger and frustration that occasionally beset every caregiver. “Of course we’re all grateful for the good things that we have, but we are still entitled to feel resentment and sadness that so much is missing from our lives. So when things really get to be too much, it’s okay to throw yourself a ‘pity party”. You can allow yourself to indulge the sadness – and then you get out of it and move on. It helps.” It’s just one more way she says of reaffirming that, “It’s not so much that we’re not normal, it’s just that we’re different.”
A Word from the Professionals
Doctors encourage families to view the illness that has invaded their lives as an unwelcome visitor. "Families that become normal in an abnormal situation," says Dr. Hepworth, "are the ones that don’t let the illness define them as a family." This means making every effort to go on with some normal activities or find some news ones.
Dr. Hepworth recognizes that in order to accomplish this, arrangements must be made to allow the caregiver time away from the care recipient. “Of course, all this is made easier if a family has the money to pay for respite care. But if that is not the case, they must be willing to ask friends to help them.” She stresses very strongly that caregivers are not failures because they can’t do everything all by themselves. “You’re not supposed to do all this alone,” she emphasizes. “Friends want to help, not out of pity, but because they care about you. Allowing them to help is a way of giving to them.”
Another step toward normalization is sharing your experiences with others in a similar situation, counsels Dr. Rolland, a former caregiver himself. “Other people who are dealing with the same or similar situations have a deeper knowledge that can be shared,” he says. Refining this even further, Dr. Rolland suggested that, where possible, it’s useful to talk to people at a similar stage of life, not only in circumstances but also in age or phase of family life. For example, he says, a 25-year old couple caring for a small child would not only find it useful to talk to another 25-year-old couple in a similar situation, but also to couples of any age who were caring for a small child.
Carol Hausman, PhD, advocated systematizing your time to help keep life at home normal. She notes that when you are trying to do too many things at once, you don’t spend quality time on any of them. This is especially important if the demands of the care situation are so great that you never get any time to yourself. "If you commit to a certain amount of quality time," says Dr. Hausman, "you can explain that you’re not available right now, but that later you will be there for an uninterrupted period. That way you have a better chance of meeting everyone’s expectations."
In trying to gain some degree of normalcy, all our professionals advocate seeking outside support. Dr. Hausman says that an impartial ear can provide a constructive outlet for venting anger and frustration. Dr. Rolland believes that sometimes a caregiver needs to hear from a professional that the way he or she is living “is very difficult, but not abnormal." Dr. Hepworth acknowledges that not all caregivers feel comfortable in a formal support group. She defines outside support as “support services” and encourages caregivers to consider this term to mean support groups, friends, professionals or any combination of these. “It’s really having people you can count on’” she says.
Underlying all the advice, from both caregivers and professionals, is one common theme. You must take care of yourself and make some personal time for yourself or you’ll become so drained that you won’t be an effective caregiver. In the regard, all of the contributors stress the importance of realizing that you have a right to this time ad that you should be generous in giving yourself permission to take it.
Redefining a Normal Life
No one who is a caregiver or who is a professional who counsels caregivers would try to glorify the role of caring for a loved one day after day. They know only too well how hard it is. But neither will they deny that there is something in the human spirit that helps caregivers find a way to transcend, one step at a time, the troubles that confront them. Nan says simply, "I believe we make a choice about how we handle our lives. I can choose my attitude and I know that when I am at home, with my family, we’re normal.”
Dr. Hepworth suggests there might be some truth in the t-shirt slogan that “Normal is Dull” if dull means that no one has control. “Experiencing a marking event, such as a serious illness in the family, makes you redefine what is important. It can make you look at your life more creatively.” In making that effort, may caregivers find an inner strength they never knew they had, and in tapping into that strength, they find value and satisfaction and even, in their own individual ways, a sense of normalcy in their lives.