This page is here to help you through the early days of your loved one’s rehabilitation, and to understand sepsis and its long-term effects.
We have two booklets called ‘Sepsis: A Guide for Patients and Relatives’ and ‘Sepsis: Survivor’s Information’ to help you through this often difficult time.
Everyday tasks like getting dressed or climbing the stairs may have become major challenges for your loved one, in addition to the psychological turmoil they may be facing because of sepsis.
As their temporary carer, you will have to cope with many unforeseen situations for which there may seem to be very little professional help or advice available. Many survivors and their relatives are not given any information about the after-effects of sepsis or what to expect in the following months when they are discharged from the hospital. Sometimes, even their GPs are unaware of what to expect. So survivors and relatives can feel very alone and apprehensive during this time.
It’s extremely difficult to say how each individual will be after sepsis. A great deal will depend on how fit they were before their illness, what other chronic (long term) conditions they have to cope with (for example, diabetes), how severe their sepsis was and how long they needed to stay in hospital for.
Your loved one may experience a condition called Post Sepsis Syndrome (PSS) and it could take up to 2 years for them to feel anything like their normal self again. Be reassured, they will improve slowly during that time and many of their initial difficulties should settle without professional help.
Some survivors never quite return to being the same person they were before sepsis. This is when an individual has been affected so severely, physically, psychologically or emotionally, that they become a different person afterwards. How much they will return to their ‘normal’ selves, only time will tell. Some relatives describe it as like a bereavement because they have lost the person they knew before sepsis and they have to get to know this different person afterwards. Other survivors and relatives describe it as getting used to their ‘new normal’ way of life. They slowly learn to accept life seen from a new perspective. Thankfully, most survivors and their families do find a way to cope with the challenges before them.
As the spouse, partner or parent of a sepsis survivor, you may also have changed because of this experience. You will have witnessed the traumatic event of your loved one becoming desperately ill, often extremely quickly, until their life was hanging in the balance. You will have watched, terrified, as they were attached to drips and machines to try and keep them alive. Thankfully, you will have seen them improve very, very slowly until they were fit enough to come home. You would then probably have expected life to get back to normal after a few weeks or months.
However, once you were both home again together, everything may have seemed different. Your loved one may have changed and it may have been hard to ‘fit together’ as the family you were before. Your loved one may need a great deal of help physically to do even the smallest of daily activities; even having a bath may have become a huge challenge. Going out can become a major event which now needs a massive amount of organisation and once out, survivors may become exhausted within a very short space of time. Nearly every aspect of your family life may have changed and you don’t know if it will ever return to normal again.
Other, less close family members may not realise how much has changed and can come out with well-meaning platitudes which can be simply inappropriate or hurtful. They often have no insight into your present situation. Even today, despite all the media coverage, a vast number of people have never heard of sepsis and its long-term effects. So if your loved one looks almost the same as before their illness, people may think everything is back to normal, but this could be far from the reality.
Sepsis survivors frequently experience similar long term physical, psychological and emotional problems. As mentioned earlier, this is known as Post Sepsis Syndrome (PSS). These problems include: poor mobility, breathlessness, chest pain, oedema (swollen hands or feet), taste changes, reduced appetite, temporary hair loss, leg and joint pains, repeated infections, altered vision, insomnia, poor concentration and short term memory, extreme lethargy, anxiety, depression, nightmares, flashbacks, PTSD – just to name a few. An extensive list is available on the Survivors’ Page and in our booklets.
Even experiencing some of these problems will make daily life very difficult for both you and your loved one. Extreme tiredness is a particular problem during their rehabilitation period. Emotionally, sepsis survivors are on a rollercoaster ride. One day they may feel good and seem to be improving, the next their physical strength seems to have disappeared and they are tearful and upset. These bad days can appear out of nowhere, and as their loved one you have to try and help them through it and keep their spirits up.
Sepsis survivors can often feel relatives are fussing over them too much, which can be overwhelming. A gentle reminder that they have been desperately ill, and you are only trying to help them get better, usually helps. Remember, most survivors can’t remember what happened to them when they were acutely ill and so feel they should be able to carry on fairly normally and become very frustrated when they can’t. When you have been used to being independent all your adult life, it’s extremely difficult to allow other people to help you with personal and basic care. It is important to try and see things from their perspective as well. They may also be feeling guilty because of all the extra work they are now creating for others to deal with.
The fear of sepsis coming back can cause a great deal of anxiety for both the survivor and their close relatives. Even having a normal cold afterwards may trigger major anxiety and stress for both of you. This is perfectly understandable. If you learn the signs and symptoms of sepsis and know what to do and where to go for help, this will ease some of the anxiety. Eventually, when the survivor has experienced a few minor infections and recovered, the fear should start to subside. A small number of survivors do need to be readmitted for a milder version of the original infection but generally they are well again in a few days. Do seek help from your GP or a registered counsellor if the anxiety becomes a major problem.
The family’s finances may well be stretched following your loved one’s prolonged period in hospital, even if they were not the main breadwinner. If they are not ready to return to work for some time, which is generally the case, money worries can become a real concern. There is a benefit called Personal Independence Payment (PIP) available from the government, which may help, but it can only be claimed after a 3-month period from the beginning of their illness. Go to Citizens Advice benefits for more information on claiming benefits.
Each survivor’s experience is different, and so is each relative’s, but trying to stay positive will help. Look after your own health, as well as your loved one’s health, because if you become overtired or ill, then life may become very hard.
Try and make some regular time for yourself, so you can go out, have a coffee with a friend – anything that’s normal for you. Eat a nourishing diet. You need your energy as much as your loved one does. Stay active and try to exercise as you would normally. Take friends or family members up on their offers of help. Even cutting down your workload a little will make a huge difference. Let your loved one do as much as he or she can manage on their own, as this will increase their confidence and show them they are improving.
Try and get enough sleep. Strange as it feels, it may be necessary for your loved one to sleep downstairs or in another bedroom for a while. Although you may want to keep checking on them in the night, this may increase their anxiety. An intercom may be useful, so you all get more rest.
If you would like to talk to someone about how things are, or you have questions about sepsis and its effects, there are people who can help. When you visit your GP, it’s a good idea to take along our ‘Sepsis: A Guide for Patient’s and Relatives’ booklet, so they will have a better insight into what you are going through. If you would like to speak to a Sepsis Support Nurse, just phone 0808 800 0029 and talk to a member of our support team. We also have several support groups around the country and hope to have more shortly.