Caregiver - The Toughest Job You'll Ever Have

by Jane Ashley

Caregivers wear many hats — they act as scheduler, insurance coordinator, transportation manager, chief cook, and chief bottle washer, plus so much more. They act as second ears at doctor’s appointments. They encourage us when we’re down. They keep the household going, picking up the slack.

Comfort And Support

But caregivers are so much more. Caregivers are our cheerleaders to help boost our spirits. They entice us to eat. They remind us when it’s time to take our medications. They keep up with our medicals appointments. Caregivers not only provide physical support during cancer treatment; they provide emotional support during the highs and the lows.

Caregivers are most often spouses or partners, an adult child looking after their mother or father, or the parent of a younger adult child.

Caregiver basics – Caregiving 101

Caregiving is rewarding, but don’t underestimate how much time you’ll need. On top of your regular household duties and your outside job, you’re going to go to lots and lots of medical appointments.

If you work, talk to your supervisor and HR about what you’re facing. You can ask for a more flexible schedule or to work from home if that is an option. You may be covered under the Family and Medical Leave Act (FLMA) that allows you to take up to 12-weeks of unpaid leave to care for your spouse, child, or parent. Most employers will let you use those weeks a day or two at a time so that you can continue to work. Being able to continue working is especially critical if your job is the source of healthcare for the family.

Because of the COVID-19 pandemic, be sure to ask your loved one’s health team whether you can accompany your loved one to their appointments. Many cancer centers are not allowing even the caregiver to accompany the patient, so you might be able to adjust your work schedule to drop off and pick up your loved one.

Accept all offers of help. If neighbors offer to cook and bring over good, accept their offer. If some offers to mow the lawn, accept their generosity.

Order groceries online for pick-up to save time and limit your exposure to people outside the household.

Get organized so you’ll have a place to sort out all of the medical bills and be able to keep up with them. Don’t be embarrassed if you need to ask for copay assistance — the cancer center usually has a social worker who will help you with copays and gas to and from the center.

Get your insurance paperwork in order. Read your policy so that you understand the financial obligations you and your loved one will be facing.

Make sure you have some comfortable clothes for both of you.

Go With The Flow

Expect to feel all kinds of emotions.

Not only is a cancer diagnosis stressful for the patient, but it’s also stressful for the caregiver. Whether it’s your spouse, your parents, or your adult child, it’s difficult emotionally to see your loved one suffering, frightened or facing a difficult surgery or procedure.

Caregivers walk a tightrope — encouraging their patients without showing their fear. Caregivers walk a fine line when deciding how much of their own emotions to show. We want you to know that we are scared, too, but be reassuring that we have confidence in the medical team.

Fatigue sets in for all caregivers. There’s not enough time in the day to get everything done. That leaves no time for the caregiver to take care of themselves — take care and set aside some “me” time to sit down and enjoy a cup of coffee.

Caregivers feel anger too. Why does my loved one have to suffer? Why can’t someone get rid of their pain? A thousand times, “Why?” And there is no answer — illness is part of life, and something that each of us will face at one time or another. But knowing that does not make it easier for a caregiver.

Feeling overwhelmed is common. It seems like there are not enough hours in the day. It’s okay if the house isn’t spotless. And it’s okay if you resort to a Marie Callender frozen dinner or a deli chicken.

Don’t be guilty of hovering — don’t be a “helicopter” caregiver. Your loved one might move slower, but allow them to do as much as they can. Robbing a loved one of their independence may crush their will to live. Of course, no cancer patient needs to out in 90+ degree heat mowing the lawn, but, within reason, let your loved one do what they want to do.

Tips for dealing with uncertainty

Most caregivers quickly learn that cancer treatment is fluid. Just when we get into a routine, something new pops up. We, as caregivers, have to learn to “go with the flow.”

“Hurry up and wait” will become part of your caregiver vocabulary. They order a test ASAP, and then we wait and wait to learn the results. We, as caregivers, don’t realize that our loved one’s medical team is juggling multiple patients with similarly urgent situations at the same time. 

Fortunately, waiting for results seldom affects outcomes.

Some caregivers are, by nature, control freaks. Cancer treatment is one of those situations where we’re not going to be able to be in control. We have to learn to work around the medical team’s schedule and adjust to the reality that circumstances change throughout any patient’s cancer treatment. We have to adjust our expectations. Control what you can, and accept what you cannot change. We cannot be the “tail that wags the dog.”

Take care of yourself

Never Enough Time

Caregivers must take care of themselves too. Too little sleep and too much stress take a toll on the caregiver. Don’t try to Mr. or Mrs. SUPER CAREGIVER — you’ll experience burnout and won’t do your loved one or yourself any good.

• Get enough sleep.
• Learn to laugh in spite of the current situation.
• Eat healthy – nothing is worse than dealing with weight gain, heartburn or constipation on top of the job of caregiver.
• Take some time for your hobby, whether it’s golfing with your buddy on Saturday afternoon or lunch out with your co-workers or an afternoon of watercolor painting.
• Go out for short walks or other exercise several times a week.
• Forgive yourself for all the things that you can’t change.

Being a caregiver is one of the most rewarding roles that you’ll ever have. But you’ve got play it right. Balance is the key — take care of your loved one, keep up with essential tasks, take care of yourself — let the rest go until tomorrow.

Related Caregiver Articles

15 Tips For New Caregivers

Caregivers - The Benefits And The Challenges

For Caregivers Only - When Cancer Lasts a Long Time

The Complicated Life of Being a Caregiver

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