Survivor Relatives Info

A Guide for Close Relatives of Sepsis Survivors

Introduction

This webpage is designed to help you through the early days of your loved one’s rehabilitation following sepsis and their discharge from hospital. We do have two booklets called ‘Sepsis: A Guide for Patients and Relatives’ and ‘Sepsis: Survivor’s Information’ to help you through this often difficult time. This section is here to help close relatives understand sepsis and it’s long term effects on both the individual and their family.

Being so close to someone who has experienced sepsis will mean you see the long term problems they encounter; problems which may not be obvious to other relatives and friends. Everyday tasks like getting dressed or climbing the stairs may have become major challenges for your loved one, in addition to the emotional and psychological turmoil they are often faced with because of sepsis.

As you are likely to be their temporary carer, you will have to cope with many unforeseen situations which life hasn’t prepared you for and for which there seems to be very little professional help or advice available once they are home. 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 hospital. Sometimes, even their GP’s are unaware of what to expect. So survivors and relatives can feel very alone and apprehensive during this time.

How will my loved one be once he or she is at home?

It’s extremely difficult to say how each individual will be after sepsis. A great deal will depend on how fit they were prior to their illness, what other chronic (long term) conditions they have to cope with, for example, diabetes, how severe their critical illness was and how long they needed to stay in hospital for.

Whether your loved one was so ill they had to be treated in a Critical Care Unit or they were treated on a ward, they are likely to experience a condition called Post Sepsis Syndrome (PSS) and it could take up to 2 years for them to feel anything like their ‘near normal’ self again. PSS is discussed in a later paragraph. Be reassured, they will improve slowly during that time and many of their initial difficulties will settle on their own, 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, they become a different person afterwards. Any ‘life threatening’ experience can alter someone, often permanently. This is known medically as an ‘ambiguous loss.’ When the person is still physically there with you but they are a very different person to the one you have known and loved for many years. A similar situation can occur when a person has a stroke or head injury. 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 this change in their lives and start afresh form that point on, accepting life seen from a new perspective. Thankfully, most survivors and their families do find a way to cope with the challenges before them.

How will this affect me as a relative?

As the spouse, partner or parent of a sepsis survivor, you will also have changed because of this experience. You will have witnessed the whole 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 organization 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 realize 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, after the many articles in the press and media coverage, a vast number of people have never heard of sepsis and it’s long term effects. So if your loved one looks almost the same as before their illness, now they are home, people may think everything is back to normal which is far from reality.

Post Sepsis Syndrome(PSS)

Sepsis survivors frequently experience similar long term physical, psychological and emotional problems, regardless of where their sepsis originated. As mentioned earlier, collectively, 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 Survivor’s Page and in our booklets.

Even experiencing some of these problems will make daily life very taxing and frustrating for both your loved one and you. The extreme tiredness being a particular problem during their rehabilitation period. We do have a fact sheet called ‘Chronic Fatigue Following Sepsis – Information Guide’ available to download from our website to help you both cope with this.

Emotionally, sepsis survivors are on a seemingly never ending rollercoaster ride. One day they may feel good and seem to be improving, then the next their physical strength seems to have disappeared and their mood is really down and they are tearful and upset. Often, there doesn’t seem to be a rational explanation for these changes. It isn’t always because they have over done physical activity earlier. These bad days can just appear out of nowhere and as their loved one you have to try and help them through it, keep their spirits up as well as keep the family on tract with daily life.

Sepsis survivors can often feel relatives are fussing over them too much which they find overwhelming. A gentle reminder 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 so 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 often 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.

When survivors have been shown a photograph of themselves lying in Critical Care with all the ‘life saving’ equipment connected to them, they often don’t recognize themselves but you would remember it very well. In fact, it probably haunts you, which is why you want to protect them now.

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 and very common after everything you have all been through. 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 and eventually when they have experienced a few minor infections and recovered as normal, 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.

Financial Worries

The family’s finances may well be stretched following your loved one’s prolonged period in hospital, even if they were not the main bread winner. 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 www.gov.uk/pip/overview This benefit is currently under government review.

How do I help my loved one?

Each survivor’s experience is different and so is their relatives. So we can only generalize on how to help them through their rehabilitation period. Trying to stay positive will help. Look after your own health as well as your loved one’s 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 other family members up on their offers of help. Even cutting down your work load 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 should increase their confidence and show them they are improving.

Try and get enough sleep. It may be very strange if your loved one has to sleep downstairs or in another bedroom for a while but at least they’re back home and on the mend. You may want to keep checking on them in the night, just to ensure they’re still okay but this may increase their anxiety. An intercom may be a useful, so you all get more rest.

Where can I go to for help?

If you would like to talk to someone about how things are or you have questions about sepsis and it’s effects, there are people who can help. If your GP doesn’t seem to understand, take along our ‘Sepsis: A Guide for Patient’s and Relatives’ booklet to show them, so they will have a better insight into what you are going through. If you would like to speak to a Sepsis Support Advisor, just phone our office on 0800 389 6255 and ask to be referred to the support team. We can arrange a convenient time to telephone you. We also have several support groups now running around the country and hope to have more shortly.

The UK Sepsis Trust also has an ‘IN Touch’ Service which is like a ‘buddy’ system. This can also be used for survivor’s close relatives, so you can contact someone in a similar situation to yourself. The office will have details.

May, 2016.