After a diagnosis, hospital stay or fall

Hospitals are noisy, bright and full of interruptions, so most people come home short on sleep. Your energy may come and go. Doing less is not lazy: healing uses a lot of energy.

Try to…

• Keep your discharge papers in one place and read them with someone
• Put follow-up appointments in your calendar right away
• Know who to call with questions, day and night
• Ask friends or family for meals, rides and help with chores
• Do a little gentle movement each day if your care team says it is okay

People who were very ill, sedated or in intensive care sometimes have gaps in their memory, or vivid memories of things that did not really happen. This can be unsettling. Some people find it helps to ask their care team or family to go over what happened, so the story makes more sense.

Ideas that help

• Ask a family member to tell you, gently, what happened day by day
• Write down questions for your follow-up appointment
• Look at any photos or notes family kept during your stay, when you feel ready

After a hospital stay, it is common to worry about getting sick again, feel frustrated by what you cannot do yet, or feel down. Depression and anxiety are recognized problems after intensive care, and they deserve care just like your body does.

What helps

• Set small goals and notice progress week by week, not day by day
• Stay in touch with people, even by short calls or messages
• Get outside for a few minutes of daylight when you can
• Tell your doctor how your mood is, not only how your body is

If you feel able to get up, take your time. Roll onto your side, push up onto your hands and knees, and crawl to something sturdy like a heavy chair. Put one foot flat on the floor and push up slowly. Then sit and rest.

If you cannot get up

• Use a phone or personal alarm if you can reach it, or shout or bang on the floor or wall
• Keep warm with anything nearby, like a blanket or coat
• Gently move your arms and legs, and shift position about every 30 minutes
• Call 911 if you may have hurt your head, neck, back or hip, or cannot get up

A doctor can check your balance, strength, eyesight and other things that can make falls more likely, and may refer you to a falls or balance program. Shock can hide pain at first, so it is wise to get checked.

After a fall, it is natural to feel nervous on stairs, outdoors or in the shower. But when fear makes you cut back on activities, your muscles and balance get weaker and the risk of falling goes up.

Rebuild confidence step by step

1. Start with short walks in safe places, with someone beside you at first.
2. Join a strength and balance class. Doing these activities at least twice a week helps.
3. Practice getting up from the floor with a physical therapist or trainer.
4. Slowly add back activities you love, one at a time.

• Clear clutter and remove trip hazards like loose rugs and wires
• Use a non-slip mat in the bath or shower, and consider grab rails
• Wear well-fitting shoes or slippers with good grip
• Ask for help with hard tasks like heavy lifting or reaching high shelves
• Keep up with eye and hearing checks

In the first weeks, information can feel like a flood. Learning about the condition, a bit at a time, often makes the future feel less frightening and helps families feel more in control.

1. Keep a notebook or phone note for questions as they come up.
2. Bring another adult to appointments to listen and take notes.
3. Ask the care team: “What do we need to do this week? What can wait?”
4. Ask where to find trusted information, instead of searching late at night.
5. Ask for a social worker, who can help with practical and money questions.

Parents often blame themselves, especially when a condition was present at birth, runs in families or has no known cause. Guilt can become overwhelming and strain family life, making it harder to support your child and each other.

Try

• Ask your child’s doctor directly what does and does not cause the condition
• Notice “if only” thoughts, and answer them as you would for a friend
• Share the feeling with your partner or a trusted person, instead of carrying it alone

Much of the most useful information lives with other parents who have walked the same road. Parent groups can focus on one condition or on shared needs like child care, school or transport. Support groups also ease the isolation many families feel.

In the U.S., every state has a Parent Training and Information Center. It can explain your child’s rights, tell you about local services, teach you how to speak up for your child, and connect you with parent groups.

Children often sense when something is wrong. Not knowing can be scarier than the truth. Give honest information that fits their age, and let them ask questions over time.

Ideas

• Use simple words: “Your body needs extra help with…”
• Let them share sadness, frustration or anger without rushing to fix it
• Prepare them ahead of appointments, tests or procedures
• Keep clear, steady family rules. Children still need limits to feel secure.
• Encourage independence and the things they can do

Caring for a child with extra needs can wear out even the strongest parent. Short breaks, like an evening walk or a relaxing bath, are essential, and respite care can give families a longer rest. Parents also need time with each other and with their other children.

Small ways to refill

• Protect sleep and regular meals as much as you can
• Say yes when friends offer meals, rides or babysitting
• Share caregiving tasks with your partner or family
• Keep one small thing that is just for you each week