How to Help
For anyone who knows someone that was recently diagnosed with sepsis, this is the place to find resources to help.
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Things You Should KnowWhat is sepsis?
A more specific definition of sepsis can be found here but in brief, sepsis is your body’s toxic, or severe, response to an infection. This extreme inflammatory response (swelling) in your body is frequently caused by a bacterial or viral infection, such as pneumonia or influenza, but it can be caused by parasitic or fungal infections.
Your body’s immune system, which is supposed to fight off the infection, goes into overdrive and begins to attack your body.
Sepsis is a medical emergency and must be treated quickly and properly for survival.
Some people still refer to sepsis as septacaemia. That is the older way of referring to it, but sepsis is the preferred term.
Sepsis affects you throughout your body. These are some examples of how someone’s body reacts when sepsis begins:
- Your blood pressure may drop because your blood vessels (the arteries and veins) have dilated, or have opened a bit wider. Because there is more space to fill, your heart has to work harder to push the blood through at a normal pressure.
- Your pulse rate goes higher because your heart is pumping harder and faster to do its work.
- You may feel breathless or are breathing quickly.
- Your skin may become cold and you may lose color, becoming pale. There may be a an unusual color or rash, or your skin may become mottled, marked in patterns or patchy in color.
Someone with sepsis may have other symptoms too, depending on the infection that caused the sepsis. For example, if you had pneumonia, you may have had a bad cough as well.
As sepsis progresses, your blood pressure may become very low, which means that not enough blood and oxygen can reach your organs. This can lead to organ failure. The kidneys, lungs, brain, and heart are particularly at risk. Signs may be:
- A drop in the urine you put out.
- Difficulty breathing.
- Darkening patches on the skin, perhaps blistering.
- You may become confused, may have lost consciousness.
- Your body may retain (keep) fluid, which causes swelling all over, making you much bigger than what you normally are. This occurs because the blood vessels may leak, allowing fluid into places it isn’t normally, including out of the skin.
The length of time patients have to stay in the ICU depends on how ill they are and the type of help they need. Patients with sepsis will only be discharged from the ICU when they no longer need the special drugs and machines to support their body and when they are strong enough to cope on a general unit. It can take weeks of treatment in the hospital overall. Some people go to a rehabilitation facility before going home. Patients who survived sepsis may find that once they are home, it may take several months to feel strong and well again.
The nurses help coordinate your loved one’s care and the responses to treatment.
- They monitor patients by watching their vital signs (pulse, blood pressure, temperature, etc) and test results.
- Giving medications and performing procedures, such as dressing changes, inserting urinary catheters (to drain urine from the bladder).
- Cleaning breathing tubes (tracheostomy) if patients have one, by suctioning out phlegm.
- Turning patients often to reduce the risk of bedsores; moving their arms and legs to keep them from getting too stiff.
It can be very frightening to watch your relative or friend get ill so quickly and then need so much medical help. The nurses and doctors are doing everything they can to help. If there is something you don’t understand or are worried about, speak to one of the nurses and ask questions.
Relatives have a very important role in helping patients. They can:
Talk. Tell loved ones where they are and what is happening. It may really help them to hear a familiar voice. Even if patients are sedated (put in a deep sleep with strong drugs), they may still be able to hear people talking to them. So keep talking to them, say comforting things, and hold their hand. If you find it difficult to know what to say, you could try reading something like a favorite book or newspaper aloud, so they hear your voice.
Answer questions. Help the medical staff by answering questions about how the patient was before they came into intensive care.
Do small, comforting things. Help look after the patient by doing things like brushing their hair or keeping their mouth moist by using a special damp sponge. If the patient is sedated, talk to them while you do this because they may feel these things but not understand what is happening.
Gently massage your relative’s hands and feet, with the nurses’ permission. You may need to be shown how to do this. Massage can be very comforting to someone in bed and it can also help swollen limbs that have too much fluid trapped in them.
Keep a diary of your relative’s progress throughout the illness. This can be very helpful for when the patient is recovering, as they often find it difficult to remember much of their time in intensive care. Just make a few notes each day about how things are and any important changes to their treatment, etc.
Be there. Just by being there, by letting your relative hear a familiar voice, giving encouragement, reassurance and support, can help speed recovery. Do be positive when talking to them about getting better but don’t tell them everything is fine if it isn’t. Instead reassure them that the doctors and nurses are doing everything they can to make them better.
It is very distressing to have a relative or friend so ill and you must remember to look after yourself at this time as well. You may have friends and family who want to do something to help you, so take up their offers of help if you can. You shouldn’t feel guilty for not being at your relative’s bedside 24 hours a day. The hospital will call you if there is any serious change to their condition.
A nurse will stay with a patient who is sedated and on a ventilator (breathing machine). When a nurse needs to leave the bedside, another nurse will cover, look after the patient for that while. Patients who are awake and stable will likely share a nurse with another patient. These patients are provided with a call bell and are still closely watched until they are ready to leave the ICU and go to a general unit.
Nurses check their patients for pain every hour when they are doing other checks such as blood pressure and oxygen level. They will check more often than that during treatment that might cause the patient pain. Even if a patient is sedated, there will be physical signs of pain, such as a raised blood pressure and pulse, sweating, or crying. They can become restless and agitated. The nurses will do all they can to try and make your relative comfortable. It may help for you to talk to your relative, hold their hand, and speak reassuringly.
Unless there has been any damage to your relative’s hearing, he or she will be able to hear you even when sedated. This is one of the reasons why the nurses will talk to a patient before touching or moving them. However, although patients may be able to hear sounds like someone’s voice, they rarely remember the actual conversations.
You would have to check with the hospital policies but it is very likely that this is not allowed because the patient is unable to agree to the photo (give their consent).
The nurses who look after your relative will have very detailed, up-to-date information about the patient but they can also arrange for you to speak to the ICU doctors or other specialists, such as surgeons when they have been involved in your relative’s care. However, keep in mind that not only certain designated relatives are permitted to receive this information because of confidentiality rules. As well, it is easiest if one person in the family is designated at the “point person,” who can get the information from the nursing staff. In turn, this relative can pass on the information to the rest of the family. This way, the staff doesn’t have to answer the same questions repeatedly.
Over two-thirds of sedated patients who are on ventilators (machines to help with their breathing) can experience strange, vivid dreams, as well as hallucinations. This is called delirium. Delirium can be very frightening for because everything seems so real, and it can be upsetting for you if your relative is unhappy or frightened.
Some of the reasons delirium happens are:
Medications – strong drugs, such as pain killers and sedatives may be needed to help the patient cope with their treatment, but they are very powerful and can cause delirium as a side effect. These drugs can also make it difficult for the patient to understand or remember what happened in the ICU.
Chemicals in the body – when a patient is very ill, they produce chemicals to fight the illness or infection, which can cause confusion. This can also lead to delirium
Forgetting – patients may not understand what is happening to them and this leads to gaps in their memory. These gaps may last for weeks. Patients try to make sense of what is happening and fill in these gaps in the form of dreams. These dreams can be very strange and frightening because the patient thinks they are real.
You have been through a very upsetting experience and it will take time to get over it. Once your relative is home, you might feel very relieved that buy you may also be anxious about the responsibility of caring for your relative. However, now that the danger is over, you may also have a reaction to the stress you have been under. You may feel upset, tearful, anxious, depressed or just very tired. Your relative might look and seem different to normal, and you may have to juggle things to find time to be there.
Don’t be afraid to ask for help, either from friends and family or from your doctor. If it helps, talk to your family and friends about what happened. If you are finding it difficult to cope, you might want to talk to a counselor or therapist.
Sepsis is a very serious illness and, unfortunately, sometimes patients do die because they don’t get treatment in time or their body is not able to fight the infection. It can be a terrible shock if your relative dies of sepsis because the illness can move very quickly and your relative may have been in good health before it happened.
It might be difficult for you to remember what happened, so it may help you to ask the nurses and doctors about anything you don’t understand.
Talk to your friends and family and ask for any help that you need. It may help you to talk to a bereavement counselor because they can offer support and understanding to adults and children who have lost a relative or friend.