Severe Cancer Caregiver Distress

Caregivers get told to look after themselves. They rarely get told where to call.

• Call or text 988 for the 988 Suicide and Crisis Lifeline. It is free, confidential, and open every hour of every day. You do not have to be the patient to use it.
• Text HOME to 741741 to reach a Crisis Text Line counselor by text.
• Call 911 if you or the person you care for is in immediate danger.
• Call 1-800-662-4357 for the SAMHSA National Helpline if drinking or drug use has become part of how you cope. It is free, confidential, and open 24 hours a day.

Caregiver distress is one of the best-documented and least-treated problems in cancer care.

The National Cancer Institute cites a pooled analysis in which 42% of cancer caregivers had depressive symptoms. Individual studies it reports found raised anxiety in 29% of caregivers of people with kidney cancer, and in 39% of caregivers of people with pancreatic cancer. Among people caring for someone with head and neck cancer, about 20% met the criteria for post-traumatic stress disorder.

The load is also physical. NCI reports that half of cancer caregivers were also employed, working an average of 35 hours a week on top of the caring. Nearly three quarters were doing medical tasks: wound care, injections, tubes, drains, medicine schedules. Most were never trained for any of it.

If you feel wrecked, the numbers say you are having an ordinary response to an extreme job.

Mild strain and severe distress are different things, and the second needs treatment. NCI lists physical effects that caregivers commonly show:

• Fatigue
• Sleep problems
• A weaker immune system, and wounds that heal more slowly
• Higher blood pressure
• Changes in appetite or weight
• Headaches
• Anxiety, depression, or other changes in mood

NCI gives a clear threshold: if these changes last more than two weeks, talk to your doctor. Two weeks. Not "when the treatment is over."

Other signs worth taking seriously:

• You have stopped taking your own medicines, or missed your own appointments
• You are drinking more, or using something to get to sleep
• You snap at the person you are caring for, then feel sick about it
• You feel nothing at all where you used to feel worry
• You have thought that everyone would be better off without you

That last one is not a thought to sit on. Call or text 988.

The reasons are consistent, and none of them are good enough.

You think the patient's needs come first. You think there is no room in the appointment for you. You think you would be taking help from someone sicker. You think the answer would be another leaflet about self-care.

NCI puts the counter-argument in one line: if you do not take care of yourself, you will not be able to take care of others. That is not a wellness slogan. It is the operational reality of a job with no cover.

Advice to take a bath is not treatment. These are the approaches NCI identifies as tested with cancer caregivers:

• Cognitive behavior therapy, to reduce distress
• Problem-solving and skill-building programs, which teach the practical parts nobody taught you
• Psychoeducational programs, which explain what to expect and how to manage it
• Family or couples therapy, where the strain sits in a relationship

NCI's guidance on depression also notes that families do better when they talk about their feelings and solve problems together, rather than each person coping alone in a separate room.

Ask the cancer center for oncology social work. Social workers deal with caregivers as a matter of course, and they are usually the fastest route into everything else.

Respite care means someone else takes over so you can stop. The Administration for Community Living, a federal agency, runs the Lifespan Respite Care Program, set up by Congress in 2006. ACL describes respite as care that can be planned or arranged in an emergency, provided to relieve family caregivers for a time.

Ways to find it:

• Ask oncology social work what respite exists locally and what it costs
• Ask whether the hospice or palliative care team offers respite, if that applies
• Contact your state's lifespan respite program through ACL
• The ARCH National Respite Network and Resource Center, which ACL points caregivers to for detailed information
• Call the NCI Cancer Information Service on 1-800-4-CANCER (1-800-422-6237)

NCI is practical about time. It suggests keeping at least 15 to 30 minutes a day for yourself, and separately, finding larger chunks of time where you can. Both count. The daily 15 minutes is what keeps you upright between rounds. The larger block is the only thing that gives anything back.

Vague requests get vague answers. Precise ones get action. Try these with the care team:

• "The home plan is more than I can do. I need to say that before it fails."
• "I have not slept properly in three weeks and I made a medicine error on Tuesday."
• "I need a referral for myself, not for him."
• "What happens on the days I cannot be here?"

Medicine errors are worth naming without shame. An exhausted person handling a complex schedule will eventually get one wrong. Saying so early gets you a simplified plan or a district nurse. Saying nothing gets you a crisis.

And with family who keep asking how they can help, be blunt. Give them a task with a day attached. Thursday's drive. The Tuesday night shift. The pharmacy run. "Anything you need" is not an offer anyone can use.

• Support for Caregivers of Cancer Patients — National Cancer Institute
• Informal Caregivers in Cancer (PDQ), Health Professional Version — National Cancer Institute
• Depression and Cancer (PDQ) — National Cancer Institute
• Lifespan Respite Care Program — Administration for Community Living
• 988 Suicide and Crisis Lifeline — 988 Lifeline
• SAMHSA National Helpline: 1-800-662-HELP (4357) — SAMHSA