Returning home - what will life be like now?

Leaving hospital and returning home is a major step in your recovery and is likely to have been a goal you've been working towards for some time. It is a very positive step but it will take time and effort to get back to a normal life.

Before you leave hospital, your physiotherapist may give you an exercise plan to help with your recovery. If not, you (or a friend or relative) can ask them for a plan.

When you leave hospital

When you're well enough to leave hospital, you may have an assessment to find any difficulties you might face when you get home. This would include psychological or emotional problems, as well as any care and equipment you need.

Your healthcare team should discuss and agree with you what your rehabilitation goals are (what you want to achieve as you get better), and organise any referrals and any other care or rehabilitation you will need before you leave the hospital.

When you leave the hospital, you may be given:

  • a letter that summarises your time and treatment in ICU (this is called an 'ICU discharge summary');
  • the contact details of the person co-ordinating your rehabilitation; and
  • if appropriate, a copy of your rehabilitation plan.

When you get home

You won't have the same support you had in hospital and it can be a difficult time for you and for your relatives. It's normal to go through times where you feel depressed or frustrated because you don't seem to be getting better. Setting small goals in your daily routine can help you recover and show you that you are improving. A small goal could be something as simple as making a drink for yourself, or walking a few steps further without needing to rest. Don't push yourself too hard as this can end up making your recovery take longer.

When you've been critically ill, you'll probably feel very tired and won't have much energy. It will take time before you feel well enough to cope with everyday life and many more months to get back to full strength.

Set yourself targets to help you get back to normal, and keep doing the exercises your physiotherapist gave you. Don't overdo your exercise as this can set your recovery back.

You will need to slowly increase your activity to build up your strength, but make sure that you rest when you need to. In the early days you may need to take things very slowly.

If you've had an operation, you must follow your surgeon's advice. Your body will tell you if it's getting tired or is in pain. If you feel unwell or get out of breath, stop what you're doing and rest.

Checking up on your recovery

A member of your healthcare team may offer to meet with you two to three months after you left the ICU. The meeting will be to discuss any physical, psychological or other problems you've had since you left hospital.

If you're recovering more slowly than expected, they should be able to refer you to the appropriate rehabilitation service.

Who can I ask for help?

When you're back home, your GP will be involved in your general care and recovery. For most people, your GP will be involved with the hospital's medical staff in looking after you after your critical illness. They should be able to refer you to other services if you need them, such as community-based physiotherapy.

If your GP isn't able to help, you can always contact the ICU where you were treated. Before you left the hospital you may have been given the contact details for a person in the ICU who can help.

Social life and hobbies

When you've been seriously ill, you may feel differently about things and you may not want to do things you used to enjoy. For example, you may not feel like seeing lots of people at once, so start by seeing one or two friends at a time for short periods.

You may find it difficult to concentrate and may even find it hard to follow a TV programme. Your concentration will get better. During your recovery you may be forgetful, but your memory will usually improve as you get better.

Your recovery may take a long time and, as you get better and begin to do more, you may find that things get on top of you. During this time you may lack confidence, worry about your recovery, or even feel depressed. Talking about this to your family or a close friend can help.

Relationships and family

After you've been critically ill, you and the people around you may seem to change. Your family may make a fuss and might not understand why you seem different, or why you aren't keen on the hobbies and interests you used to enjoy.

Your family and friends were afraid you might die, so they may want to do everything for you when you get home. If this annoys you, talk to them calmly about how you feel. Don't bottle things up and get angry.

You may not remember your time in hospital clearly, and this can be confusing and frightening. It may help to talk to your family about what they remember about your stay in hospital, how they felt when you were ill and the things that happened while you were there. If your relative kept a diary while you were in the ICU, it can be helpful to look at this with them.

Getting back to your daily routine

Lots of people worry about coming home from hospital or returning to work after a critical illness. It's normal to wonder whether you'll be able to cope.

Talk about it with your family and think about how you can adapt things at home to help you.

If you used to work, you may not be well enough to return full-time straight away. When you're feeling better, it's a good idea to arrange to go back and see your colleagues and talk to your boss. Depending on your job, you may be able to do a few hours a day at first.

If you have young children you may feel under even greater pressure to get back to normal. Do the important things first – other jobs can wait. Take a nap at the same time as the children and don't be afraid to ask your friends and family for help.

Sexual relationships following critical illness

It's normal to be worried about when it's safe to start having sex again. Your partner is likely to be worried about this too.

You may be concerned about the following.

  • Will my scars be healed enough?
  • If I have to use a medical device, such as a colostomy bag, catheter or pacemaker, will it get in the way?
  • Will I hurt or ache too much?
  • Will I have the strength?
  • What if my partner doesn't want to have sex?
  • What if I can't continue or can't reach an orgasm?

You may worry because you don't know what will happen. If you're worried about your strength, compare the energy needed for sex with the energy you need for your exercises. If you're coping well with your exercises, you may be able to cope with sex.

Most people find it difficult to talk about sex, but try to relax and keep a sense of humour. Cuddles are really important. Take things slowly and see what happens.

Sometimes, medical problems such as impotence (being unable to get and keep an erection) can affect your sex life. If you're worried, talk to your GP.