Suddenly becoming a caregiver

Stroke is a leading cause of serious long-term disability. More than half of stroke survivors aged 65 and older have reduced mobility afterwards, so many families suddenly help with moving, washing and daily tasks.

About 1 in 4 older adults in the U.S. report falling each year. A broken hip or head injury can mean a hospital stay, rehab and a long stretch of help at home.

A serious diagnosis, like cancer or heart failure, can bring treatments, appointments and new needs very quickly. Families often feel out of control and worried about the next emergency.

Sometimes the person who was doing the caring gets ill, dies or simply can’t go on. A grandchild, sibling, adult child or friend may step in with no warning.

Caring can also start after a mental health crisis, a hospital stay or a suicide attempt. You may be juggling worry, appointments and trying to keep them safe at home.

Shock can make feelings go quiet while you handle the practical things. That is the mind protecting you. Feelings often arrive later, when things slow down.

After a sudden event, many families worry it could happen again at any moment. Having a simple plan for emergencies can ease some of that fear.

You can grieve someone who is still alive: their old abilities, your old relationship, your plans together. This grief is real, even if no one names it.

You may feel trapped, angry at the situation or annoyed with other relatives, and then guilty for feeling that way. Mixed feelings don’t mean you love them less.

When the person is present and able to make decisions, a provider can share information with you if they agree, or don’t object. Providers share what you need to know about their care.

It can help to

• Ask them to say it to the nurse or doctor directly
• Ask if the clinic has a form to name you as a contact
• Join appointments in person, by phone or video, if they want you there

If the person is not there, or can’t agree because they are unconscious or in an emergency, providers can use their professional judgment. If sharing is in the person’s best interest, they can share what is directly relevant to your part in their care.

Some states have stricter privacy laws, so what is shared can vary.

Try

• “What happened, in plain words?”
• “What should we expect in the next few days and weeks?”
• “What will they need help with at home?”
• “Who do I call with questions, day and night?”
• “Can you show me how to do that safely?”

Learning about the condition and the care tasks can ease the helpless feeling. Trusted health charities, caregiver videos and support groups are good places to start.

Only about 1 in 5 caregivers get formal training in medical and nursing tasks, so asking to be shown is normal.

A durable power of attorney for health care, also called a health care proxy, names a person to make medical decisions for someone if they can’t decide for themselves. It is usually someone who knows their values and wishes.

Advance directives are legal papers that record a person’s wishes about medical care, and who should speak for them, in case they can’t speak for themselves. Each state has its own forms and rules.

Managing someone’s money can be arranged through a durable power of attorney for finances, a separate document from the health care one. It is best set up while the person can still understand and agree to it.

Rules differ by state, so a legal aid office or elder law attorney can explain your options.

If the person can’t make decisions and has no papers, state law decides who can speak for them. Ask the hospital social worker how it works in your state.

Helping a parent bathe, eat or pay bills can feel strange and sad. Many parents fight hard to keep their independence, which can lead to clashes.

What can help

• Ask before you do: “Would you like help with that?”
• Let them do what they still can, even if it takes longer
• Keep some time that is just parent and child, not carer and patient

When a partner becomes ill or injured, the balance of the relationship can change. You may miss the partner who shared the load, and they may miss being the person they were.

What can help

• Talk about the change, not only the tasks
• Bring in outside help for some personal care, if that protects your closeness
• Keep small rituals: a shared show, holding hands, a morning coffee

When a child or adult child suddenly needs care, parents can feel fear, grief and fierce protectiveness all at once. Brothers and sisters often need extra attention too.

Friends, siblings and chosen family do a lot of caregiving. If you aren’t legally family, ask the person to name you as a contact with their care team.

The U.S. Family and Medical Leave Act lets eligible employees take up to 12 workweeks of unpaid, job-protected leave in a year to care for a spouse, child or parent with a serious health condition. Health benefits continue during the leave.

It covers employers with 50 or more employees, and you usually need to have worked there 12 months. Some states offer paid leave too.

Things to ask about

• Changes to hours or remote work, for a while
• Your employee assistance program (EAP), if there is one
• Family or caregiver leave policies
• Who to keep updated, and how

Nearly half of caregivers have had at least one major money impact, like taking on debt. Ask the care team’s social worker what services and benefits the person may qualify for.

In a crisis it is easy to drop everything for yourself. Try to keep one thing: a walk, a call with a friend, a favourite show. Caring for yourself helps you keep caring for them.

1. Share what the care team has said, in plain words.
2. List the jobs: visits, meals, rides, paperwork, money, updates.
3. Let each person pick what they can really do.
4. Agree on a way to keep everyone updated.
5. Set a date to check in again in a few weeks.

The Eldercare Locator, a public service of the U.S. Administration for Community Living, connects older adults and families with local services. Call or text 1-800-677-1116, or search at eldercare.acl.gov.

The National Family Caregiver Support Program funds training, counseling and respite for caregivers through local agencies.

AARP’s Family Caregiving Resource Line can point you to resources on home care, work, money and legal questions. Call 1-877-333-5885, Monday to Friday, 8 a.m. to 8 p.m. ET. You don’t need to be a member.

Respite means someone else takes over for a few hours or days. The ARCH National Respite Network helps families find respite services.

Try

• “Can I bring dinner on Tuesday?”
• “I’ll sit with your dad on Saturday so you can rest.”
• “I can drive to the appointment on the 12th.”
• “Want me to walk the dog this week?”

Most people ask about the person who is ill. Ask the caregiver how they are doing too, and listen without fixing.

Try to avoid

• “At least it wasn’t worse.”
• “You’re so strong, I could never do that.”
• “You need to take care of yourself” (without offering help)

Neighbours, faith communities and clubs can share meals, rides or regular visits. A shared online calendar lets people sign up for specific times. Support groups connect caregivers with people who understand.

A counselor or therapist can help you cope with shock, grief and stress. Your clinical provider can check how you are doing and refer you.

The National Family Caregiver Support Program funds counseling and support groups through local agencies. The Eldercare Locator can help you find them: 1-800-677-1116.

Find a free helpline in your country at findahelpline.com.