By Megan Willome

When you’re a caregiver, it can feel like you’re trying to run a marathon in platform shoes. They’re awkward and uncomfortable. Sometimes your ankles give way under a burden you never anticipated and you crash. Although I have not done the heavy lifting of caregiving, I have literally grown up around cancer. Eleven people in my family have battled the disease, including both of my parents. Of course, cancer isn’t the only illness requiring long-term care. Alzheimer’s and other types of dementia are on the rise. Soldiers are returning home with complicated injuries requiring multiple surgeries. You might be caring for a child with a disability or a chronic condition. Maybe a loved one is simply growing old. Who is a typical caregiver? The National Alliance for Caregiving reports that 66 percent of the time, it’s a woman — probably in her mid-to-late 40s. Fifty-seven percent of female caregivers work outside the home and earn between $50,000 and $99,999 per year. Most caregivers provide an average of 20 hours of care per week for approximately four-and-a-half years. Many caregivers don’t actually live with their loved one, but live near enough to provide frequent care. Some caregivers who live out of town visit an ill family member once or twice a month. And there are people who wish they could be around more, but live in another state. All of us are caregivers.

Here are 21 rules for caregivers, at whatever level of care you give. I chose the word “rules” because the people I interviewed used lots of capitalization, bolding and underlining to emphasize their tips. For privacy reasons — both personal and medical — all names used are pseudonyms.

1. Get Help

When friends ask if they can help, let them. Renée said, “Let people help you. Don’t be afraid to take that meal that’s offered. When a neighbor asks to come and sit every Wednesday night so the caregiver can go to choir practice, take them up on it!” On an even more basic level, Barbara said, “Ask for help from your friends and family. Let them give you a respite — even for an hour to sit in the sun.”

2. Get Educated

Unless you were trained in medicine, you may need help understanding your loved one’s condition. Rosalie said, “As a caregiver, you’re not prepared for what happens medically. New information is being thrown at you about someone you care about. It’s bigger than your brain can absorb. You never knew about this stuff in your whole life.” Educating yourself is especially important for those caring for people with Alzheimer’s. Denise said, “It would have helped us to have known sooner that memory loss is not a normal part of aging and is always a sign of dementia caused either by Alzheimer’s or strokes. We dealt with difficult behavior for two years before we finally learned from the doctor that my husband’s parents did have Alzheimer’s.”

3. Get A Support Group

Although there are organized support groups for caregivers, you can find solace and a sounding board with friends who have been there. Gail, who lived out of state, gathered together a “lunch bunch” of high school and college friends when she came in town to visit her aging mother. The camaraderie of old friends and good food helped make a long, difficult situation a little easier to bear. Support groups also allow you to give back. Someone else needs the wisdom you’ve gained in the trenches. Helping them will make you feel like you’ve learned a thing or two.

4. Get Friends

Even if you don’t have an official support group, you can find listening friends. Rosalie said, “You have to have someone you can talk to, someone you can dump on and unload on without feeling guilty. Maybe you need two or three people. When my daughter’s cancer came back, I called my good friend in California — not my sister. An acquaintance doesn’t understand. Talking takes the magnification away.” Of course, not all friends are created equal. Barbara warned about friends who don’t understand. “Learn to weed out hurtful remarks from well-meaning friends who do not live in your shoes. Then do what you have to do and refuse to live in the sweet past when things were easy or in the future that cannot be predicted,” she said.

5. Get There

If you live close enough for a day trip, make it a priority to visit as often as you can. It doesn’t matter if you can’t find anything to do to help — just be there. Sitting and talking is not time wasted. Come for every holiday and family birthday party. While you’re in town, the best gift you can give is a short reprieve for the primary caregiver.

6. Get Organized

When you’re in the doctor’s office, it can feel intimidating, but caregivers have day-to-day insight that the doctor lacks. You know more than you think. Denise, who gave care for Alzheimer’s, said, “It was important to go with my in-laws to their doctor’s appointments. They were not able to accurately answer questions or remember the doctor’s instructions. Also, sometimes their memory and behavior was better at the doctor’s office than in normal life, and I needed to be able to communicate that to their physicians.” To stay organized, Laura said, “Keep a big binder with medical bills, payments, EOB (Explanation of Benefits), doctor’s letters and anything else you will need. Know the human resources number and contact person. Get a handbook from their employer so you know how much the insurance is supposed to pay.” Rachel, who has been an oncology nurse for more than seven years, said, “For sure, keep a calendar. Write a list of questions. Keep any kind of symptoms on a list. Make sure you know the medications they’re taking exactly — how much, what dosages, how often they’re actually taking them. Not just medications, but supplements, too. So many people are on herbal supplements, and that’s a huge deal with oncology. We recommend not doing any herbal supplements at all because they can interact with what we’re doing.”

7. Get To Know Health Professionals

The men and women who give medical care to your loved one are professionals. Make them your allies rather than your enemies. Denise said, “Talk to doctors and other caregivers. We found that it really helped to get the perspective of people who have gone down this road before. My cousin, who is a hospice nurse, gave me the best advice: ‘Let the professionals do their job. Use their help as much as possible. No one else can do your job of being family.’” Rachel, the oncology nurse, encouraged caregivers to feel free to take a break during chemo appointments. “It’s almost a respite for the caregiver when they get to drop [the patient] off at chemo. They know they’re in good hands. There are no issues that are out of our control. They have the freedom to run errands, to go take a nap — whatever,” she said.

8. Get A Routine

Having a routine not only lessens daily stress, but also makes it easier to identify when a behavior or symptom is abnormal. Rosalie became a caregiver when her grown daughter and grandson moved back home after her daughter’s cancer returned. She said that having her grandson around made it easier to slip into a daily routine. Every morning he had to get to school, and every afternoon he had to be picked up. Rosalie would run into friends as she rode bikes with him to and from school.

9. Get Sustainability

There is a difference between short-term caregiving and long-term caregiving. Most people can give their all for a year or so. When caregiving stretches into multiple years, that level of enthusiasm is not sustainable. Barbara said, “Live in the moment, and I don’t mean ‘smelling the roses.’ I do mean pay attention when driving, cooking, dressing and showering. Being in a hurry, thinking of too many things at once, not focusing, can suddenly, and with no warning, render the caregiver helpless.”

10. Get Regular Breaks

This is the rule every caregiver knows, but few want to follow. Rosalie said, “I didn’t want to leave. But it’s good to collect your thoughts and reconnect with society. I did volunteer once a week at the [school] library. That reconnecting with adults and helping kids find their books showed that life is still going on. I went the week after [my daughter] died, too. It was the best thing I ever did. To stay away is — that’s the easy way. I don’t think you heal as fast. Your mind gets sour.” Renée echoed her thoughts. “Always take care of oneself during the process. This includes spiritual care and leaving time for just plain ol’ fun. It really is OK to get out sometimes and go see a movie while a friend or relative sits with the ill person. This sounds simple, I know, but you’d really be surprised at how many people just don’t do these things.”

11. Get Your Own Health In Order

Nothing makes you re-evaluate your own health like watching a loved one fight for theirs. It’s time to eat right and get a good night’s sleep. It’s time to simplify. Laura wished she had let go of some responsibilities while caregiving. “In hindsight, I should have stopped teaching Sunday school and Awana. It was stressful to know that I might not be there and [have to] find replacements. Also, my mind was just not on the task at hand,” she said. Barbara, who is 72 years old and caring for two family members in her home, recommended regular exercise. “Join a health club; the fees pay off long-term in your ability to sustain. Walk the dog — briskly. Park at the very end of the grocery store parking lot. If you can’t leave home on a regular basis, find and use an exercise for your age and ability on TV. The mind, emotions and body cannot function if the body isn’t fit,” she said.

12. Get Meals

Texas women are great at organizing meals when someone is sick. Words of advice: If you are bringing food to a person on chemotherapy, it is virtually impossible to keep up with the ever-changing list of what the patient can and can’t eat. Focus the meal on the caregiver, instead. They are the ones who really need that plate of barbeque. Also, don’t forget to continue to bring meals when an illness lingers. After the first few months’ worth of casseroles have been consumed, those meals become even more appreciated.

13. Get A Job (Or Not)

Karen’s mother developed brain cancer about the same time that her youngest child entered first grade. She continued with her plans to return to work, but settled for part-time hours. She said she would have gone insane without the meticulousness needed to keep the books for a small business. On the other hand, caregiving became Laura’s full-time job, even with two small children in tow, because her mother was completely isolated. “Mother didn’t have any church family or friends, so it was up to me to travel to DeSoto two to three times a week, and I should have been there more,” she said.

14. Get Drivers

You can’t drive to every single appointment. Don’t burn yourself out; allow others to come alongside you. Nell had radiation therapy twice: in 1984 and in 2008. Some of the same friends who drove her the first time also drove her the second time, even though the two rounds were 24 years apart. Those friends gave her some good girl-time and gave her husband a small break. On the subject of drivers, a caregiver may face the difficult task of taking away the car keys from an ill family member. Denise said, “Stopping my father-in-law from driving was very difficult, but perhaps the most important thing we did. Most Alzheimer’s patients do self-regulate their driving, but even with limited driving, they are not able to handle unexpected things. We finally got the doctor to write a note to have my father-in-law’s license taken away. And we eventually were also able to convince him to stop driving and sell his car. However, due to a mix-up at the DMV (Department of Motor Vehicles), [after] he passed away I found that he had actually received a new valid driver’s license and had it in his wallet!” File that one under you-can’t-control-everything.

15. Get A Pencil (Or A Keyboard)

Even non-writers benefit from the therapeutic value of journaling their thoughts while caregiving. People who haven’t written a paragraph since college find themselves composing poetry. Renée said, “I think it’s helpful if the caregiver can keep a journal or blog for processing all that’s going on.” Blogging has an added benefit — 24/7 access. There is an amazing amount of compassion you can get and receive from strangers who are walking the same road late at night or early in the morning. Barbara has an anonymous blog for caregivers. Denise incorporated her caregiving experience into her personal blog.

16. Get Legal Advice

If you have an ill or aging parent who can no longer manage his or her own affairs, you may need to speak with an attorney. Laura, whose parents were divorced, had to manage everything when her mother got sick. She said, “Go to a good lawyer and get a will or update a current will. Spend the money and time to make sure everything is in proper legal order. Put your name on the bank account. This saved me. Get power of attorney, medical power of attorney and a living will. Carry a copy of these papers with you.”

17. Get Home Or Nursing Care

My grandmother, age 96, lives independently in a retirement home, thanks to its amenities. She is part of a growing demographic — the “oldest old” — those living to 90 and beyond. Even with her good health, she still needs a caregiver to drive her to appointments and do the laundry. There are several potential steps between living alone and living in a skilled nursing facility. Maybe Mom needs a little home care with a paid caregiver who can assist with grocery shopping and meal preparation. On the other hand, maybe Dad needs home health care from a medical professional who can refill his oxygen tank, offer wound care and perform other outpatient tasks. Tending to these needs can cut down on hospital visits.

18. Get Happy

What do you and your loved one enjoy doing together? Whatever it is, do it! Take a drive in the country. See as many movies as you can. Go window shopping. Read favorite books aloud. Furthermore, don’t underestimate the need for humor, even if it’s gallows humor. The week after her mother died of cancer, Anne’s father underwent cancer surgery in one wing of the hospital, while her sister was in premature labor in another wing. Despite the family drama, she wrote a series of emails that were hilarious. Anne will be OK — she can still laugh.

19. Get Honest

Caregiving can feel a little like living in an isolation tank. Take advantage of the time together to talk about important subjects. Laura advised, “Don’t sweat the small stuff. Love them while you can. Forgive. Get rid of bitterness. Don’t drag up too much. Make peace. It will help so much during the grieving process because there will always be regrets, but if you tried your best and really loved them, that will cover so much pain.” Renée said, “Let the patient know you love them and they are not a burden. Try to take care of any past ‘bad blood’ issues.” She also suggested gently broaching a subject, then letting the patient take the lead as to whether to pursue the topic or not. In Barbara’s case, honesty is not possible. “I have to walk on eggshells because neither receiver [of my caregiving] believes they need care,” she said.

20. Get Ready

At some point, you may be able to see the end on the horizon. Don’t wait until the last minute —call hospice. Steve, a hospice chaplain, clarified hospice’s mission. “Some people have this weird, terrible myth that it’s euthanasia, which it’s not. I think that’s the number one fear. Statistics are that people on hospice live a little longer. We explain the hospice philosophy — that it is holistic, that we are trying to provide comfort, to manage pain, and we mean pain in every kind of way — emotional pain, physical pain, spiritual pain. Just because we’re not giving curative treatment doesn’t mean that we’re not giving treatment. Many family members describe that we’re like family. We want to get there early enough to help. It’s like that Bible verse: ‘Death, where is thy sting?’ That is our hope — to define life even in death,” he said. When death seems to be right around the corner, both Laura and Anne suggested making funeral arrangements before the family member dies so that you won’t be doing everything in a haze of grief. Finally, Renée said, “Allow the patient to die. Many times, a dying person is concerned about the people left behind, so assure them that you and the family will be OK. Also, tell them that you will see them in a little while.”

21. Get In Touch With Your Dreams

Caregivers must put their own dreams on hold. As months stretch into years, start asking, what’s next? As you develop an answer, tentatively make plans. Jerilyn has faithfully given care to family members for the last 20 years. She is one of those rare souls who never needed a single one of these rules — she did what needed to be done with a smile. Jerilyn, honey, you deserve that trip to Italy you’ve always wanted to take. Get thee to an airport!