The Complicated Life of Being The Caregiver

by Jane Ashley

As if being diagnosed with cancer is not bad enough, working out the logistics of a prolonged and complex treatment might prove even harder. I sometimes think of those early days after my diagnosis when my husband, who was my caregiver, and I were so naïve about what we would be facing with my Stage IV rectal cancer diagnosis.

The Complicated Life Of Being A Caregiver

But we did make one commitment to each other, and that was that we would try to navigate this terrible diagnosis “one day at a time.” But in looking back at those early days, we were not prepared for what we were facing.

What kinds of things do the cancer patient and their caregiver need to know? What kinds of contingency plans do they need to make? 

Getting To and From Treatments

This seemingly mundane activity will be repeated many times during treatment. Many radiation treatments require daily treatments. Chemo infusions are usually weekly, bi-weekly or every three weeks. And then, there are appointments with surgeons and other specialists too.
Many patients are able to drive themselves to and from their radiation appointments safely. But some patients are on oral chemotherapy during their radiation and might experience side effects that could impact their ability to drive safely. For the first few sessions, it’s a good idea to have someone drive you back and forth.

Ride To Doctor

Your oncologist can’t predict whether you’ll have side effects from your chemotherapy or not. Patients react differently. And patients may not experience a serious side effect until later in their treatment. Most patients want to maintain their independence, but safety is more important – not only for the patient but for their fellow motorists and pedestrians.

It is best to always have a ride home from chemotherapy. Side effects that could impact your driving include:
• Nausea/vomiting
• Blurred or double vision
• Racing heart rate
• Extremely high blood pressure
• Significant fatigue
• Altered judgment/confusion from pain or anti-anxiety medicines

If you have been driving yourself with no problem and experience any of these symptoms, get one of the nurses or the social worker to call your caregiver, a friend, or a taxi to get you safely back home.

Related Article  24 Survivor's Tips to Better Handle Chemo and Radiation

When the caregiver’s job, income, and insurance is the only source of income, arrange for dependable transportation to and from chemotherapy. It is not wise to put the caregiver’s source of income at risk with frequent calls to their job because of the need for transportation after chemotherapy.

Call the local chapter of the American Cancer Society at 1-800-227-2345 for transportation help through their Road to Recovery program. This program offers volunteer drivers and civic organizations who provide rides to patients who lack transportation to and from chemo or patients who are unable to drive themselves.

Speak to the social worker at your chemo center about transportation issues. They may also be able to provide help with gas money.
Don’t wait until the last minute to get transportation arranged. Patients in rural areas may face transportation hardships due to lack of formalized programs.

Food Preparation

Day-to-day food preparation might become a challenge once treatment begins. Regardless of whether the roles in your family are traditional (woman cooks) or nontraditional (man cooks) or a blended partnership, the caregiver is going to deeply involved in grocery buying and food preparation. 

Urban families experiencing cancer have more options for grocery buying than the small town and rural families. Online ordering saves time. Some grocery chains now offer home delivery. Take advantage of these options to save time.

Take Them A Meal

Learn to compromise and utilize deli-cooked chickens, frozen entrees like lasagna or mac-n-cheese, Marie Callender frozen dinners and/or desserts. Utilize your slow cooker. Grill out. Make sandwiches with good quality meat and cheese.

Neighbors may rally and come to your aid. If someone offers to coordinate meals after surgery or other hospital procedure, accept graciously and know that you are loved.

If caregiver and patient are elderly, talk to the social worker about Meals on Wheels or other senior nutrition programs.
The caregiver should endeavor to provide a tasty, nutritious evening meal. The patient should be appreciative of their efforts.
In families where there are school-age children, ask your friends to include your children in family dinners. This removes part of the burden from the caregiver and provides a needed detraction from Mom or Dad’s cancer.

If the patient enjoys cooking, they might cook ahead on days when they feel good and freeze a couple of casseroles, bake some chicken breasts for the coming week of chemo or make dessert as a treat for the caregiver. Being kind to each other goes a long way during the stress of cancer treatment.

Scheduling and Coordination of Appointments

Many patients and caregivers find that keeping their upcoming appointments on both of their phones is sufficient to coordinate upcoming appointments. You can check on your phone when a new appointment is given and spot a conflict before it occurs.

If you don’t like utilizing your phone, keep up with appointments on a monthly calendar and hang it on your refrigerator.

Potential Loss of Income

The sooner that both patient and caregiver face the loss of income, the better prepared both of you will be. There are several ways that loss of income may impact you.

1. The patient is the major breadwinner of the family and the family’s health insurance is through their job. Patients may hope and want to work during treatment, but not everyone is able to continue working. Side effects, the progression of the cancer and loss of working hours (due to being in chemotherapy or going to radiation) may impact a patient’s ability to work fulltime. Talk to HR and get the details about what short-term and long-term disability insurance your employer provides and what percentage of your salary it will pay. Know your options up front. Be realistic – the caregiver may need to return to the workforce.

 2. Both patient and caregiver work. The family’s insurance is through the caregiver’s workplace. In this situation, the caregiver should be careful about missing too many days of work for fear of being terminated. The patient would be wise to try to continue working as much as possible and put their earnings away for unforeseen emergencies. In this situation, the caregiver should enlist the help of other family members and friends for transportation, food prep and other household chores like laundry and lawn mowing.

12 Signs Of Caregiver Burnout

3. The caregiver is the sole source of income and their health insurance comes from their job. It is best for the caregiver to farm out as many caregiving tasks as possible so that they can continue their role as sole provider for the family. Consider using vacation days for short-term medical emergencies. Use FLMA only when absolutely necessary (major surgery in a distant city). FLMA is unpaid; cancer treatment is expensive; the caregiver must strive to keep their employment at all costs.

Trim your household budget. See if you qualify for financial assistance with copays. You may be surprised at how high an income you can earn and still be eligible for financial assistance. 

Planning for the Future

Ideally, the family (whatever the composition-husband/wife, mother or father with grown children, domestic partnerships, widowed or divorced parent with grown siblings and/or parents still alive) should have a family meeting.

These discussions are almost always difficult. Regardless of what stage cancer, we need to plan for “what if.” Some of the topics we ought to discuss include:
• Are our wills current?
• Do I have an advance directive/durable power of attorney?
• If divorced, have I updated the beneficiary of my IRA, 401(k) and other assets?
• Is the household checking account a “right of survivorship” account?
• If you are unable to make a decision, what are your wishes? Life support or no life support.
• When a parent has cancer, who is going to be responsible for what? In the case of siblings, one may live nearby and the other siblings live in distant states. The distant siblings may provide financial support while the nearby sibling takes care of transportation and food.
• Can Mom or Dad live alone now?
• After surgery, what kind of at-home care will they need? 

The National Cancer Institute provides an excellent 64-page booklet for caregivers

Time Management

You may find yourself thinking, “So much to do, so little time.” The caregiver has to prioritize tasks and learn to let some things go. If someone offers, accept it – don’t feel like you have to clean up before they come over to clean up. Relax, give in and let go.
If someone offers to do the laundry, let them. If someone offers to mow your lawn, let them. Learn to accept help. Caregivers should never feel guilty for needing and accepting help.

Keeping your job and taking care of your loved one’s needs are the first priorities. But you must also take care of yourself, or you’ll either get sick or get burned out and have nothing of yourself left to give. It’s a fine line that caregivers walk. Consider respite care so that you can take a break, relax and recoup.

Planning for the Unexpected/Logistical Issues

It’s wise to have some contingency plans just in case. Think about the unimaginable so you’re not completely blindsided. Be prepared for the emotional upheaval you might experience thinking about potentially, catastrophic circumstances. 

What will the caregiver do if the patient becomes bedridden? What if they can’t get up and go to the bathroom by themselves? How will I get them to the doctor if they can’t walk? What if they become too weak to swallow pain medicine? What will I do if I can’t leave them alone?
You may face these situations. Have a list of potential solutions to put your mind at ease. You should call the oncologist to talk about your loved one’s deteriorating condition. This may be the time to decide about hospice care. Many families delay getting hospice care for their loved ones, but hospice care may allow the caregiver to continue working and their loved one stay safely at home.

Coping with Anger, Name Calling, and Hostility

Cancer patients experience anger, fear and frustration. These are normal feelings for any cancer patient. But how should you, as their caregiver, handle these situations?

There are no easy answers. First, realize that you are close at hand, and it’s easy to lash out at you because they are there. Take deep breaths and walk away if you can. Don’t get into a shouting match. Avoid confrontation.

Angry Patient

Pain medication on top of a patient’s anger contributes to cursing and name calling and accusations. Steroids may contribute to a cancer patient’s anger. Be sure to call their oncologist if emotional outbursts are a new behavior. The cancer may have spread or could be an indication of declining kidney/liver function. The change of behavior could be a side effect of one of their medications.

The best advice is to walk away. When you return, talk to them (if they are rational) about their outbursts and ask how you can help. Realistically, that’s about all we can do.

Personality change is one of the most difficult aspects of caregiving. Sometimes, hostile behavior is an outward sign that our loved one is tired and frustrated over their declining quality of life. They might hate losing their independence. Have patience. Remember the good times. Never speak words to your loved one that you will regret. 

Being a caregiver is complicated and full of emotional and physical ups and downs. Patience and love will carry us through the dark days.

Are you a caregiver with some tips to help others that are thrown into the role? Please comment below to help them. 

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