Beginning rehabilitation

Leaving hospital and returning home is a major step in your recovery and is likely to have been a goal youʼve 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.

Here are answers to some questions that are likely to arise at this time:

What is a Rehabilitation Plan?

Before you leave hospital, your physiotherapist may give you an exercise plan to help with your recovery. You may also be assessed to identify any psychological or emotional problems you are likely to experience once you are home, 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.

What is an ICU Discharge Summary?

When you leave the hospital, you may be given a letter that summarises your time and treatment in ICU. It will contain contact details of the person co-ordinating your rehabilitation and a copy of your Rehabilitation Plan.

Will I recover quickly once I’m back home?

You should not expect too much of yourself once you are home. Physically and mentally, you have been through a major ordeal and youʼll probably feel very tired and wonʼt 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.

It is therefore normal to go through times where you feel depressed or frustrated because you donʼt seem to be getting better. Set yourself small goals – maybe walking a few more steps each day before resting – but don’t overdo it. 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.

After youʼve 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 are no longer 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. Donʼt bottle things up and get angry.

How might I feel after being in the ICU?

People feel differently about their time in intensive care. For some, being so ill can be a very traumatic experience and it may take time for them to come to terms with it afterwards.

It may take up to 18 months for you to fully recover. Your mood may change often and you may experience anxiety and sadness about your slow recovery, your dependence on others, not being able to sleep, your fear of becoming ill again, your loss of appetite. All these worries can make you moody, quick-tempered, depressed, fearful and insecure.

The strong drugs and the treatment the ICU staff had to give you to help support your body, will have affected your body and mind. It is common for patients in an ICU to experience hallucinations or nightmares that can seem real and very frightening. You may have had dreams or feelings of being tortured, trapped in bed or felt as if you were being held captive. This was probably caused by having drip lines and catheters inserted into your body to help support your bodyʼs normal functions and monitor your condition. The fear this causes can remain for weeks after you have been transferred to a general ward or discharged from hospital.

All of this can be upsetting and confronting for you as you try to recall and come to terms with what you have experienced. It is an important part of your recovery to express your thoughts and feelings, however confused they may be, so confiding in a trusted friend or family member is a good idea. Together, you can work through your memories, thoughts and anxiety.

If your relatives or visitors kept a diary while you were in the ICU, reading it can help you understand what happened. It may take a while before you feel ready to read it, and it can be very emotional, but many patients who have read their relative’s diary find it helps them understand what happened.

Talk to your loved ones or go to see your GP who may be able to offer you treatment or counselling to help you through this difficult time.

Everything is different now. Will I ever get back to normal?

Your muscles will have lost strength while you were ill and not active. The longer you were ill for, the more your muscles will have weakened. This muscle loss happens faster for patients who have been on a breathing machine.

You may also have lost a lot of weight because of this muscle loss. You will put weight on again as you begin to get better and exercise. You will get stronger, but it will take time.

You may also notice dryness of your skin and hair, bruising on your body and changes to your hearing, taste, touch and sense of smell. Dehydration, drips and tubes and the drugs you may have to take can cause these symptoms which will improve in time.

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.

Problems with going to the toilet are also common. When you were in the ICU, a doctor may have put a tube (a urinary catheter) in your bladder. It drains urine from your bladder and allows the staff to check your fluid levels. When the tube is taken out, your muscles may be weaker so you may find it difficult to control your bladder. Donʼt worry, this usually returns to normal. If you are experiencing pain or having difficulty urinating, it is best to consult your doctor as you may have an infection.

Will I ever enjoy eating and drinking again?

While you were in ICU you will have received your food as a liquid, through a tube inserted into your nose and down into your stomach, or by a drip straight into your vein. Now you may have difficulty eating because you donʼt feel hungry, your mouth is too sore to eat, food tastes different or it hurts to swallow. No wonder you are off your food!

Try starting with small portions and eating more often throughout the day. You can buy specially prepared milk drinks and desserts, like the ones you were given in hospital, which contain lots of vitamins and minerals. Take your time when eating and relax afterwards to avoid indigestion.

If some foods taste very salty or sweet it is likely that your taste buds are taking time to get back to normal. This is common and will soon improve – donʼt add extra salt or sugar to your food.

During your recovery you must make sure you drink enough. Drink regularly throughout the day so you donʼt become dehydrated. You can have hot drinks as well as water and squash.

If you enjoy drinking alcohol, check with your doctor that it is safe to drink it with the medication you are taking and that it will not have a bad effect on your condition. Even if it is safe, donʼt drink too much.