Caregiving for a Veteran With Cancer: Practical Daily Care for Mesothelioma Families

If you are doing the day-to-day care of a veteran with mesothelioma, you have probably figured out that nobody trained you for this. Most caregivers we hear from learned the work by doing it: medication schedules, mobility, breathing trouble at 2am, the calls with the oncologist when something has changed. This page is the practical guide we wish we could give every caregiver in week one.

You will not be a perfect caregiver. Nobody is. But there is a body of practical knowledge that experienced cancer caregivers, hospice nurses, and VA case managers have built up over decades, and it can save you weeks of stumbling. Here is the most useful of it.

The first 30 days: setting up the systems

Most caregivers spend the first month operating on adrenaline. Your veteran is in active treatment, the household is reorganizing, the paperwork is overwhelming, and you are trying to keep working or running the house. The systems you set up in this first month determine how the next 12 to 24 months will feel.

One single source of truth for medical information

Your veteran will see five or more clinicians in the first month: oncologist, thoracic surgeon, pulmonologist, primary care, possibly a radiation oncologist, possibly palliative care, possibly a clinical trial team. Each will give you instructions, prescriptions, and follow-up dates. None of them will be coordinating with each other.

You need one place that holds all of this. A simple bound notebook works. So does a shared Google Doc. So does a printed binder with tabs. The format matters less than the discipline of writing things down the same day they are said. Include:

• Date of every appointment, who was there, what was said.
• The current medication list, with doses, schedules, and what each is for.
• The current treatment plan and what changes would prompt a treatment change.
• A list of every doctor and their phone numbers, including which one to call after hours for which symptoms.
• A running list of questions for the next appointment.

You will use this every week. Bring it to every appointment. Hand it to whoever is covering for you when you take a respite break.

The medication list, separately

Medications change frequently in mesothelioma treatment. A patient on chemotherapy or immunotherapy may also be on antiemetics, pain medication, blood thinners, antibiotics, breathing treatments, sleep aids, and the medications they were already on for blood pressure or diabetes. Drug interactions are common and dangerous.

Keep a separate one-page medication list, updated within 24 hours of any change. Include name, dose, when taken, what it is for, and the prescribing doctor. Bring it to every emergency room visit, every new specialist, every pharmacy pickup. Pin it to the refrigerator. Take a photo of it on your phone.

A second person who knows what you know

Caregivers get sick, go to their own appointments, or just need to be away. If something happens to you, somebody else has to be able to step in for a day or a week. Pick that person. Walk them through the medication list, the appointment calendar, the doctors, and where the paperwork is. Most adult children at a distance can be that person if you brief them.

Practical care: what you actually do

Mesothelioma symptoms vary a lot by stage and treatment. The most common ones we hear about from caregivers are below, with the practical patterns that other caregivers have found useful.

Breathing trouble

Pleural mesothelioma usually causes some degree of shortness of breath, and treatment-related pleural effusions can make it suddenly worse. Practical patterns:

• Pulse oximeter at home. A finger oximeter costs about $25 and gives a quick read. Below 92 percent at rest is usually a reason to call the oncology team. Below 88 percent is usually a reason to go to the ER.
• Sleep position matters. Many pleural patients breathe easier with their head and chest elevated 30 to 45 degrees. A wedge pillow or a hospital bed makes a meaningful difference.
• Know the path to thoracentesis or pleurX catheter. If fluid keeps coming back, the oncology team will offer one of these. Both are common, both are well-tolerated, and both significantly improve breathing within hours. Ask early.
• Plan for oxygen. Many patients need supplemental oxygen at some point in the illness. The VA covers home oxygen for service-connected veterans. Ask for the prescription before you actually need it; the equipment delivery takes a few days.

Pain management

Mesothelioma can cause chest wall pain that is both dull and sharp. Most patients can be made reasonably comfortable with the right combination, but it requires you to advocate.

• Track pain on a 0 to 10 scale. Same scale, same time of day, written down. This is the language oncology and palliative teams use to adjust medications.
• Ask for a palliative care consult early. Palliative care is symptom management, not hospice. Studies of patients with thoracic cancers show those who get early palliative care live longer and report less pain than those who do not. Ask within the first 30 days.
• Watch for under-medication. Many older veterans, especially men, will say their pain is fine when it is not. If your veteran is sleeping poorly, eating less, withdrawing, or moving less, pain is often the cause even if they are not naming it.
• Constipation is the side effect that needs prevention, not treatment. Opioid pain medication causes constipation in nearly every patient. Stool softeners and a daily laxative regimen should start the same day pain medication does. Talk to the oncology nurse.

Mobility and falls

Cancer treatment, age, and reduced activity all increase fall risk. A fall in a 78-year-old veteran with mesothelioma can change everything. Practical:

• Walk through the house and remove throw rugs, low coffee tables, and obstacles in the path from bed to bathroom.
• Add a raised toilet seat with handles and grab bars in the shower. The VA covers this equipment for service-connected veterans through their primary care team.
• If your veteran has lost more than 10 pounds since diagnosis, balance is probably affected. Consider a walker or a cane sooner than later.
• Get a physical therapy referral. VA covers it. PT for cancer patients is mostly about maintaining function, not rebuilding it. Even a few sessions help.

Eating and weight loss

Many mesothelioma patients lose weight from the cancer itself, from chemotherapy nausea, from treatment-related taste changes, or from low appetite. Significant weight loss makes treatment harder and recovery slower.

• Small frequent meals beat three large ones.
• Cold food is often easier than hot food when chemotherapy has changed taste perception.
• High-calorie nutritional drinks are useful and the VA can prescribe them.
• Eating with someone is more useful than eating alone. Most veterans eat better when family eats with them.
• Document weight weekly. A 5 percent drop in body weight in 30 days is a flag for the oncology team.

Bathing and personal care

Many veterans, especially older men, find it hard to ask for help with bathing. The result is that they stop bathing, which is both a dignity issue and a medical risk (skin breakdown, urinary tract infections).

• Frame help as a service from a paid aide or a son rather than from a spouse if it preserves dignity.
• The VA can provide home health aides for service-connected veterans through the primary care team. Ask.
• A weekly shower with a shower bench is often realistic when daily showers are not.
• If your veteran resists bathing for more than a week, talk to the oncology team. Sometimes it is depression, sometimes it is pain, sometimes it is exhaustion. All have specific responses.

Coordinating with the medical team

You are going to be the person who calls. Your veteran will not always remember to. Here is how to do it well.

Use the patient portal

Every major VA medical center and most non-VA cancer centers now have a patient portal. Sign up. Read every message. Respond to every message. Many oncology teams prefer portal messages to phone calls because they are documented in the chart.

Know which symptom calls which doctor

You should have written down, by week three, who to call for what:

• Sudden severe shortness of breath, chest pain, or fever above 100.4 → ER.
• New or worsening shortness of breath, but stable enough to wait → oncology team.
• Pain not controlled by current medication → oncology nurse line.
• Side effects from chemotherapy or immunotherapy → oncology team within 24 hours.
• Equipment problems (oxygen, pleurX) → the equipment provider.
• VA paperwork or benefits questions → Veteran Service Officer.

Be specific in every call

“He doesn’t seem right” is hard for a nurse to act on. “His oxygen has been running 88 to 90 percent at rest for the past 2 days, he ate less than half his meals yesterday, and he had a fever of 100.6 this morning that came down with Tylenol” gives them something to work with. The notebook helps you do this.

Taking care of yourself

This page is mostly about the patient. But the most predictable mistake caregivers make is to put their own health and life last. Most cancer caregivers gain or lose more than 10 pounds during the caregiving period, sleep less than 6 hours a night, and stop their own preventive medical care.

You will be a worse caregiver if you let yourself fall apart. The full guide to caregiver self-protection is on our page caregiver burnout in veteran families. The two-line summary:

• Use the VA caregiver programs. The Program of Comprehensive Assistance for Family Caregivers (PCAFC) pays a stipend to qualifying caregivers. The Program of General Caregiver Support Services (PGCSS) provides respite, training, and a 24/7 phone line at 855-260-3274.
• Pick one non-caregiver hour per week and protect it. A walk, a meal with a friend, a phone call. Schedule it. Defend it.

What to do if something changes suddenly

Most mesothelioma patients have predictable disease courses. Some have abrupt changes. If something is suddenly different, the questions to ask yourself are:

1. Is this a medical emergency? Severe shortness of breath, chest pain, sudden weakness on one side, confusion, fever above 102, or seizure are reasons to call 911 or go to the ER, not the oncology team.
2. Is this a side effect of a recent change? New medications, a recent treatment, a recent procedure can all cause changes that resolve on their own or with a small adjustment.
3. Is this disease progression? If the change is sustained over days and not explained by a recent treatment, the oncology team needs to know.
4. Is this the start of end-of-life? Sometimes the change is a signal that the disease has moved into a final phase. The hospice team or the palliative care team can help you read this. See end-of-life support for veterans.

Related resources

• Veteran caregiver support: a guide for the people doing the hardest job (the pillar)
• Caregiver burnout in veteran families
• Helping a parent with mesothelioma
• End-of-life support for veterans with mesothelioma
• VA benefits for mesothelioma
• About Larry Gates, our Client Advocate

If you have questions about VA caregiver programs, equipment, or how to coordinate the medical team during your veteran’s treatment, you can call the office at (800) 763-9692. The phone line is staffed during business hours.