Defining a New Normalcy

Woman and elderly man redefining normalcy

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 for nearly all caregivers, it’s that routine tasks become difficult or nearly impossible. Simple, everyday activities like running to the store, going to the movies, or taking a spontaneous walk must give way to caregiving demands. Sleeping late in the morning also becomes a challenge. Caregivers often perform tasks that are not part of a normal day for others. Feeding a disabled teenager, changing an incontinent parent, or constantly watching a confused spouse are examples.

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 and a licensed clinical social worker taught her that caregivers must see “normal” differently.

“You are setting yourself up for frustration if you judge your life by comparing it to others,” she cautions. “If you do that,” she says, “you’ll constantly think of yourself as a failure for not achieving ‘normal.’ 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 bathrooms in restaurants and arrange for handicap accessible bathing facilities. Bedwetting was another concern. Despite these difficulties, “You just keep trying to do as much as you can until you can no longer do it.” There comes a point, he says, when you must do less and 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 found that the MS Society provided resources for respite care. He routinely added vacation days to his business trips to renew his energies. “Those opportunities to go to the movies, 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.”

Finding Comfort in Shared Experiences

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.

The Importance of Self-Care and Outside Support for Caregivers

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.” Caregivers should consider this term to mean support groups, friends, professionals, or any combination. “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 personal time, or you’ll become too drained to be an effective caregiver. All contributors stress the importance of realizing you have a right to this time. You should be generous in giving yourself permission to take it.

Redefining a Normal Life

Caregiving for a loved one daily is not glorified, say caregivers and professionals who counsel them. They know only too well how hard it is.They acknowledge there is something in the human spirit that helps caregivers transcend troubles. One step at a time, caregivers find a way to overcome challenges. 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. Caregivers may find inner strength they never knew they had. Tapping into that strength, they find value and satisfaction. They even find a sense of normalcy in their lives in their own ways.