Chronic kidney disease (CKD) affects how we think and feel
CKD can affect every area of life. Relationships, work, spiritual beliefs and how we socialise with other people may all be affected. This includes our mental health. Many people have times where they struggle to cope, and may become anxious or depressed.
Mental health problems may develop because:
- Adapting to CKD is stressful – for the individual and family members.
- We may feel our body and general situation are out of control, and there is nothing that we can do.
- We feel lonely and isolated from family and friends. Sometimes it can be difficult to talk about the illness with those close to us. We don’t want to worry or upset them.
How having CKD can affect you emotionally
People with CKD and those who care about and for them can have a range of emotional responses: shock, sadness, grief, fear, anger, frustration, feeling down, tense, or alone, and sometimes many of these.
Some losses may seem relatively trivial – like limiting social engagements or shifting housework to a partner – yet these can be important and may signal changes in relationships, such as greater dependence.
Grieving for previous health
Many people also talk about a grieving for their previous health, abilities and their life before CKD.
Grief can involve:
- Shock and denial – ‘This can’t be happening . . . I just need some rest.’
- Anger – ‘It’s not fair! Why me? I hate you!’
- Fear and anxiety – ‘What will happen?’
- Feeling down – ‘I don’t know if I will be able to cope . . . I’m so sad.’
- Bargaining – ‘Please God, I’ll stick to my fluid restriction if you make this better.’
- Accceptance –‘This is not going to go away, so I should start to work out how to manage and enjoy my life with it.’
These feelings are natural and very common, and it is important to recognise and acknowledge them.
For some, the emotional impact can feel overwhelming. It can leave us very anxious and depressed. It can stop us from doing the things we need to do in our daily lives, and from taking pleasure in things we usually enjoy.
Depression and Anxiety are very common with CKD
Depression and Anxiety are very common with CKD. They can appear in people affected and in those who care about them, through all stages of CKD – from diagnosis to dialysis, following transplantation, and even in deciding not to start or to withdraw from dialysis.
These feelings are normal and it is helpful to talk about them with people who care about us. While they are unsettling, it is important to remember that each of us has the ability to learn new coping skills and develop relationships with individuals who can provide support.
How many people with CKD are affected?
Depression affects around half of those affected by CKD at some stage. Around half of all family members will also be affected by mental health problems. This includes children, teenagers, adults and older adults.
In children and older people, symptoms are sometimes not recognised, as they are assumed to be inevitable as part of ‘growing up’ or ‘growing older’.
Any concerns about younger or older people should be discussed with a GP, who can make an assessment, provide treatment, and refer, if necessary, to a psychiatrist or psychologist who specialises in this area.
Sarah felt that her world had been turned upside down when her husband Andrew was diagnosed with CKD and had to stop work.
There was so much to worry about, from his health to their finances. She felt helpless and frightened. Sometimes she also felt angry and resentful at Andrew, and then she felt guilty. Everything started to worry her and soon she felt anxious most of the time.
Finally she told Andrew how she was feeling and together they decided to talk to the social worker at the renal unit.
They were surprised to learn how common Sarah’s experiences were among family members of people with CKD. The social worker also explained what help was available.
Why are mental health problems more common among people living with CKD?
Depression and Anxiety are medical conditions. As with many other conditions, some people are born with a genetic disposition to developing them. And certain things – for example, stress or other life events – can then trigger the onset of symptoms.
Adjusting to, and coping with, all the changes that accompany CKD bring ongoing stress that can build up over time. Certain events are also particularly stressful, and you may be more likely to develop Depression or Anxiety at these times – such as at diagnosis, beginning treatment, after a transplant or when taking certain medications.
People you have got to know during treatment may become very unwell or die. Coping with other medical problems such as skin cancers or high blood pressure, or dealing with relationship break-ups or job loss can also be stressful triggers. The presence of these stresses is probably the most common reason for poor mental health in people with kidney disease.
Jane wasn’t prepared for the feelings of depression and anxiety that came immediately after her kidney transplant, and for the months following. But it isn’t surprising that she was feeling like this, considering all that she’s been through.
Being diagnosed with CKD, having to wait for a kidney to become available, the stress of a big operation and also the worries she had about family and work all add up. It led to a big come down after her operation.
Depression can also be a result of physical changes
Some depression symptoms may be the result of physical changes caused by kidney failure, such as anaemia. The build up of waste products in your blood can also cause changes in:
- Behaviour – including irritability, edginess, moodiness, memory loss and confusion.
- Problems with sleep resulting in fatigue, low energy levels, depression and anger.
Many people are not aware that certain medications, such as those used to counter rejection of a transplant, can also have Depression, Anxiety and moodiness as direct side-effects.
Discuss your concerns with your nephrologist or pharmacist, and ask for a Medicines Information Pamphlet to see a full list of side-effects.
Finally, Anxiety and Depression are common, and affect many people anyway. You may just happen by chance to become anxious or depressed at the same time as you become physically ill.
There are a number of factors that can help to protect you from the effects of Depression and Anxiety. These include trying to have an easy-going approach to life, a social support network, support through ongoing medical and mental health care, having stable relationships, and being willing to adapt and work on problems.
What is depression?
Depression is a medical condition in which people experience a significantly low mood for a long time.
While everyone feels down from time to time, people with Depression experience a persistent feeling of sadness, without reason, that cannot be shaken and that affects their capacity to get on with their daily lives. In addition to a deep sadness, other symptoms of depression may include:
- Feeling worried for no reason.
- Having difficulty concentrating on tasks or decisions.
- Losing interest in things which the person used to enjoy doing.
- Moving or talking slowly.
- Sleeping badly, or sleeping excessively, and still feeling tired.
- Either losing or gaining weight and appetite.
- Losing interest in sex.
- Thinking about killing oneself; feeling hopeless, guilty and that life is not worth living.
Dysthymia is a milder but still serious form of Depression, which can go on for years. Those affected may be able to function in their day-to-day life, but have a persistent low mood, even saying they just don’t know what it feels like to be happy.
After six years on dialysis, Tomas began waking up in the middle of the night and had trouble falling asleep again.
He was often tired and irritable at work and started making more frequent errors on the job. When he’d get home from work he lacked the energy to play sport and often didn’t feel like doing his hobbies. He started to spend his evenings on the couch, drinking beer. He felt like a failure.
Finally he went to his GP to ask about sleeping tablets. The doctor diagnosed Depression and drew up a treatment plan. Tomas and his work colleagues were relieved to know that there was something he could do to get back to his old self.
What are Anxiety disorders?
A person with an Anxiety disorder feels distressingly worried a lot of the time for no apparent reason, interfering with their ability to function and to take pleasure in life.
There are several types of Anxiety disorders.
- Generalised anxiety disorder – is characterised by worry that is persistent, excessive or unrealistic. It can be about almost anything – money, work, health, relationships or being harmed.
- Social anxiety disorder – involves intense anxiety associated with social situations. For example, someone affected may become nauseous with fear at the thought of attending a work function or a family gathering.
- Obsessive compulsive disorders – make people feel compelled to act or think in a certain way to avoid irrational feelings of anxiety. For example, someone with a clean house may become convinced that it is dirty. They might react by obsessively cleaning the kitchen, making them late for work.
Other forms of Anxiety disorders include Panic disorder and phobias – unreasonable or excessive fears of everyday situations, or of needles, for example.
Other symptoms of an anxiety disorder may include:
- Worrying excessively or persistently and becoming emotional about things that do not warrant it.
- Panic attacks or feeling frightened for no reason.
- Breathing fast.
- Racing heart, headaches or stomach aches.
Why can Depression and Anxiety disorders be difficult to recognise sometimes?
Some of the physical symptoms of Depression and Anxiety – such as feeling tired, poor sleep and loss of appetite – may be similar to those caused by CKD or its treatment. When the focus is on treating the kidney disease, symptoms of Depression and Anxiety may not be recognised.
Symptoms of Depression or Anxiety may also seem hard to describe. Fear of being dismissed as ‘neurotic’ or not listened to, can make people reluctant to discuss symptoms. It can take courage to talk openly about how you feel and to ask for help.
Discuss these feelings with a social worker or doctor; they can help to sort out whether it is your physical illness, Depression or Anxiety that is responsible for them. See the Kidney Health Australia Factsheet, ‘Making the most of your visit to the doctor’.
Sometimes we might disregard how we feel because we think that intense sadness or worry are simply to be expected with CKD. This is not true. Just because someone has kidney disease doesn’t mean they will experience actual Depression or an Anxiety disorder.
If you are concerned that you, or someone you know, may have Depression or an Anxiety disorder, and want to speak to someone confidentially, contact the SANE Help Centre on 1800 18 SANE (7263) or call the Kidney Health Information Service on 1800 682 531.
How Depression and Anxiety can affect you
Depression and Anxiety can affect how you make decisions regarding your treatment. As a patient on dialysis is actively involved in their day-to-day treatment regarding fluid intake and diet, you need to have a clear mind in order to make the best decisions. Depression and Anxiety can cloud thinking, making decision-making difficult. They can mean you put off decisions, or even make unwise ones.
Depression and Anxiety are not good for your physical health generally. They can affect immune function, making you more vulnerable to illness and infection. People with Depression and Anxiety report more general physical discomfort and see their GPs over twice as often as the general population. They may also affect how well people respond to dialysis.
People who are anxious or depressed are less likely to get out and exercise or to do everyday tasks. Their ability to communicate and express emotion may be affected, placing additional stress on family and friends as well as themselves.
Some of those affected are also more likely to engage in risky behaviours, in particular excessive use of alcohol.
Depression and Anxiety may affect physical health, lead to managing CKD treatment poorly, and even cause disagreement with family and friends. There are many reasons, therefore, for seeking diagnosis and treatment.
The road to recovery
Depression and Anxiety disorders are treatable, and learning to understand them and how they are treated – especially the things you can do to manage symptoms yourself – is a powerful way to start on the road to recovery.
Recovery means that you will be among the many people living with CKD who have been through this experience and are leading productive and satisfying lives.
One of the most important people caring for you is yourself
Recognising that your mental health – how you think and feel about things – needs attention is the first step in getting treatment and support.
Ask for help
The most important first step in dealing with Depression or Anxiety is to acknowledge to yourself and others how you are feeling, and ask for help. Talk to a doctor so that a diagnosis can be made and treatment planned. The treatments for these conditions are safe and effective.
A university student whose grandmother has CKD, Maria had been helping her gran and often stayed overnight. Maria’s grades were slipping because she was tired all the time. She said, ‘There is no time to study, no time for me. I know it is selfish for me to feel this way because my grandmother is the one who is sick, but I am mentally worn out. I just feel like running away.’
Maria told the social worker at the hospital what was happening. With Maria’s permission the social worker made an appointment for her with a psychologist. She also arranged an aide for her grandmother.
It’s still not easy, but Maria feels she is coping a lot better and has much more support around her.
Don’t cut yourself off
Depression and Anxiety often mean that we don’t feel like talking to other people. It can feel like you’re inside a world of your own and everyone else is outside it, on the other side. Or we may be afraid to risk being judged. Not mixing with others can then make things worse, of course, as we then feel even lonelier.
Be aware of this and try to combat it by keeping up human contact – whether it’s by making an effort to stay in touch with family and friends, joining in conversations when you’re with other people, or simply by exchanging a few words with a shop-keeper when you go to buy a newspaper. It’s natural that this might feel an effort at times, but you’ll feel better for having done so afterwards.
Having a pet can also be a positive sociable step. Taking a dog for a regular walk means you exercise and get to chat with other dog-owners. Dogs and cats can also be good company, they bring affection into our lives, and they’re good listeners too!
Maintaining relationships with family
Kidney disease, depression and anxiety can all cause a great deal of stress for you as well as your family. Family rules may change, routines can become disrupted and family members may take on different roles.
Understanding the stresses put on relationships is part of adapting to change. Staying in touch with family and friends is very important even if you don’t feel your best.
At first you may feel more detached from your family. Physical and emotional tiredness may also mean you have less time and energy for them. It may seem that they continue with their own lives and don’t understand the problems you are experiencing. This can cause resentment towards the people you most care about.
One of the most helpful things you can do is talk to them about how you feel. Even the people closest to you can’t read your mind.
Don’t be too hard on yourself
Try to develop a habit of being flexible rather than over-demanding on yourself or others. Don’t try too hard to be perfect in everything you do, and remember that you’ll never be able to control everything that happens, or what other people do and think, so why not accept this and concentrate on enjoying just being yourself.
Learning to tolerate uncertainty
Many anxious people feel a strong need to ‘know for sure’ about situations. Do what you can to accept this isn’t possible, that things often are uncertain, and to ‘wait and see’.
Sometimes people with CKD make dangerous decisions, such as not taking medication or skipping dialysis in order to feel ‘in control’. These actions will ultimately backfire by making them more unwell.
Understanding that you are the most powerful person on your health care team is the first step in regaining control. Only you can choose to care for yourself well. Your kidney health care team can provide information, treatment and advice, but you are in control of looking after your CKD and overall health.
Recognise changes in yourself
CKD, depression and anxiety can all cause fatigue and a lack of motivation and interest in life. As energy levels go up and down, our ability to concentrate, manage the tasks of daily living, and desire to be social are also affected. This can stop people from doing important and pleasurable activities that would make them feel better. For example, they may stop going out, opt out of regular exercise or recreation, or stop going to see friends.
Recognising these changes means you can start doing something about them. Encourage yourself to start exercising especially, however gently; activity can lift your mood and make you feel more in control.
Start with things you’ve always enjoyed in the past – like going to see movies with a friend, for example – and try to make them a habit.
Break activities down
Break tasks down into steps or manageable ‘chunks’ and tackle these one at a time. Start with easier tasks and then progress to more difficult ones: this will help you to regain confidence. Be realistic and allow yourself more time to do fewer things. Allow yourself to feel pleased at what you have achieved and reward yourself.
Victor had been planning a holiday to the Gold Coast when he started hemodialysis. He felt overwhelmed thinking about all he would need to do to ensure the trip went smoothly.
But then he spoke with the Kidney Health Information Service about his plans and they gave him some tips about how others had been able to travel while on dialysis. He worked out exactly what he might need to do, and began working through the list methodically. For example, he called friends on the Gold Coast and asked them to help him find the nearest renal unit. Two months later he was enjoying the surf at Broad Beach.
When you meet a challenge that can be changed, like limiting the amount of fluid you drink, make a plan to solve it and mark your progress along the way. Determine to give the task at hand your best-shot and set small attainable goals.
If you don’t make it, don’t get angry and punish yourself or fall back into the ‘all or nothing’ way of thinking. Just take a deep breath, set a new goal, and celebrate the successes along the way. Ask for assistance from a health care team member who can help you.
Get involved in your health care – physical and mental – by talking with your doctors and support workers. Consider joining a support group to share problems and solutions with other people with CKD, or who are carers.
Understanding is power
The more we understand about Depression and Anxiety disorders, the better armed we are to start dealing with them. Reading this is a good first step, as well as finding out more from your treating health professional.
Recognise the warning signs
Depression and Anxiety can come and go. This means we need to recognise early warning signs that an episode is coming on, so that it is not allowed to develop if possible.
Anticipate a situation that will be particularly stressful – having a transplant is a major example. Are there certain thoughts or attitudes associated with a period of Depression or Anxiety starting? Do we become more short-tempered? If others observe a change in us, we should take these concerns seriously and not dismiss them.
When you notice these signs, don’t dwell on them and worry, but do things you know will relax you, and make an appointment to see a doctor so that action can be taken to avert or alleviate the episode.
Learn to relax
We all cope with stress better when we’re relaxed. We feel better able to cope with things; it’s easier to keep things in perspective. Yet many of us forget to make a space in our lives for relaxation.
Getting plenty of regular sleep is essential for everyone, of course. Going for a walk, having a massage, listening to a relaxation CD or simply immersing yourself in a book, movie or music can all be relaxing. How we relax otherwise is a very individual matter though. Think about things that help you to unwind and feel comfortable, then think about how often you actually do those things.
Take a slow breath in for five seconds, hold it for another five, and then breathe out slowly. Don’t rush the breaths, and repeat for a minute or so. Repeat this exercise twice a day. This will help you to relax your mind and body.
Jane Wan’s doctor talked to her about breathing slowly as a way of relaxing. This new way of breathing felt unusual at first, and hard to master. But it wasn’t as difficult to change as she thought – the doctor explained that it’s actually the natural way we’re meant to breathe.
After practicing the breathing twice a day for a few weeks it soon became a habit. She was amazed at the difference it made to how she felt.
Physical exercise is a proven way of improving mood because of healthy changes this brings about in the brain and the rest of the body. Many dialysis patients believe they cannot exercise, but in fact most can. If your movement is restricted, speak to your specialist about exercises you can do, such as stretching.
Many people with CKD describe regular exercise as the first activity that made them feel ‘normal’ again after starting dialysis treatments. Movement – even if it is only for a short time each day – helps people feel better, stronger, less fatigued and more in control of their health. A regular exercise program, however limited, not only enhances a person’s potential for physical activity, but also improves overall quality of life.
There are lots of ways to keep fit when you have kidney failure. Some people find strenuous sport or activities too tiring, so enjoy exercise such as walking, yoga and Tai Chi. Some contact sports such as football may need to be avoided, particularly after a transplant.
If you are on peritoneal dialysis, you need to protect your catheter while exercising. If you have advanced kidney disease but are not yet on dialysis, do as much as is comfortable in consultation with your specialist.
Before beginning any exercise program, be sure to check with your doctor. For lots of practical tips about enjoying a physically active life with CKD speak to the Kidney Health Information Service about a Health Action Plan.
Enjoy healthy food and drink
Having CKD involves limits on food and drink that can be very frustrating. In addition, Depression, Anxiety and kidney disease can all lead to a lack of appetite, or even cravings for things that are not good for us.
Paying attention to your diet can make you feel physically and mentally better. A hungry or malnourished person will feel irritable, angry, moody, tired, weak and lacking in motivation. Your doctor may want you to see a renal dietitian, who has special training in diet for CKD.
Our physical and mental health interacts continually. Getting enough sleep, eating healthy meals and avoiding recreational drugs and excessive alcohol not only does your body good, but will make you feel good too. Too much caffeine can contribute to feeling anxious, so try reducing or even giving up coffee or other drinks that contain caffeine, such as cola. Try not to drink too much alcohol to make yourself feel better. It can actually make Anxiety and Depression worse and will also not be good for your physical health.
Tackling suicidal thoughts
It’s not uncommon for people to have thoughts about harming or even killing themselves when they are depressed. The renal team understand that patients may sometimes think about taking their own life. It’s important to remember that such thoughts are just thoughts, and you do not have to act on them, that they will pass, and that you shouldn’t keep them to yourself.
Be open with your doctor about any suicidal thoughts. They are a clear sign that your treatment needs to be improved, by a change in medication or in some other way. Make an agreement with family or friends that you’ll call them if you’re in danger of taking action on these thoughts, so that help can be called. Keep a list of essential telephone numbers with you, including that of your doctor, someone you’ve promised to call if you feel suicidal, and the number of Lifeline (13 11 14).
For further information, please see Thinking of suicide, which is specifically for helping to manage and prevent suicidal feelings.
How to help someone with Depression or Anxiety
Helping someone who is depressed or anxious means learning skills and attitudes that will help you as well.
How can family and friends help?
When someone you care for develops a mental health problem, it can be worrying for everyone involved. The most important things are to help them get a diagnosis and start treatment, and also to look after your own needs as a carer.
What do I do if I’m worried about someone?
It is often a friend or relative who first notices anxiety or depression coming on. However, only a doctor can make a diagnosis of Depression or Anxiety. If you are concerned about someone, it is important that you do not ignore the symptoms you have noticed or assume that they will just go away. Get help early. The sooner someone receives treatment, the better the outcome is likely to be.
How can I bring the subject up?
If you think that someone you know may be depressed or anxious and needs help, let them know that you are concerned about them and are willing to help. Be available to talk when they are ready. If the person doesn’t feel comfortable talking to you, encourage them to discuss how they are feeling with someone else.
Suggest that they talk about their feelings and what is going on in their mind. If the person says that they are feeling sad or very worried, you should ask them how long they have been feeling that way. Listen to them without expressing judgement. Be an ‘active listener’; reflect back what the person has said to you before responding with your own thoughts.
Don’t assume that they know nothing about Depression or Anxiety as they, or someone else close to them, may have experienced it before. Offer some information, perhaps suggesting that they read this.
Ramon’s father is a widower and has lived with CKD for many years. Recently he has seemed very tired and less interested in family events. He has been telling Ramon that he feels very guilty about problems in the family that are not his fault and he says that the family would ‘be better off if I wasn’t here’.
Ramon is worried and asks his father how he is feeling. His father says that he is really down, but assumes that Depression is just a part of getting older and being unwell. Ramon asks his father it if would be alright if they went to see his GP.
The GP consulted with the nephrologists and ran some tests. He explained to Ramon’s father that his Depression was a treatable medical condition, and explained the treatment he was going to prescribe.
Encourage diagnosis and treatment
Encourage your friend or family member to get professional help and effective treatment as early as possible. Offer to support them by accompanying them to a doctor’s appointment, but take care not to take over completely – everyone needs to make their own decisions as much as possible.
It may take some time to get a diagnosis. Try to help the person not to give up.
Further information may also help, please see ‘Depression’, which gives a more in depth explanation of the condition.
Tips for friends, family and colleagues
Here’s how you can support someone who is depressed or anxious:
- Treat the person with respect and dignity.
- Respect the person’s privacy and confidentiality, unless you are concerned that the person is at risk of harming themselves or others.
- Remind the person that depression or anxiety disorders are medical conditions, and that they are not to blame for how they are feeling. If necessary, let them know that you don’t think less of them, or think they are weak, faking or a failure.
- Give the person hope for recovery. Explain that depression and anxiety are very common in people with CKD, and that, with help, they can get better.
- Encourage eating a healthy diet and help them to avoid drinking too much alcohol.
- Ask the person if they would like any practical assistance with tasks. Be careful not to take over or encourage dependency.
- Break tasks into small steps, so that gradual progress can be made. For example, if you are encouraging someone to get out of the house regularly you might like to offer to go with them on walks. You might start with walking around the block slowly together at a quiet time of day, and then work on varying the time and going for longer distances.
- Offer emotional support and understanding. Be patient, persistent and encouraging. Let the person know that they will not be abandoned. It is more important for you to be genuinely caring than for you to say all the ‘right things’.
- Talk about the feelings you both are having. Acknowledge their feelings and ask them to acknowledge yours. Opening the lines of communication is very important to prevent misunderstandings.
- Learn as much as you can about mental illness, treatments and what services are available in your local area. Encourage the person who has experienced the illness to be involved in this process as much as possible. Find out if there are education and training courses for carers you can attend.
Draw on the support you need
Don’t forget that being a good support person includes finding support for yourself too. This may mean mutual carer support, attending a group with others who are in the same situation; education and training in looking after yourself as well as the person with the illness, and finding respite care too so you can take a break.
Talk to your GP or other health professional about where you can find out more about mental illness and about support for yourself as well as the person affected. Family, friends and other carers make a big difference to the lives of people affected by mental illness, but you have to make sure you look after your own mental health as well.
For details of carer support groups in your area, contact the SANE Help Centre on 1800 18 SANE (7263).
When your child is unwell
Children can experience Depression and Anxiety disorders too. With a young child, you may not wish to express all the emotions you are feeling for fear of burdening them. Remember, however, that children are very aware. If they ask, do not deny your feelings. If you do deny them, they may take this as a cue that they shouldn’t talk about such things either.
Children should be encouraged to discuss their thoughts and feelings. You can then help them understand and deal with them. This is a valuable process for children and can boost confidence in their ability to handle difficult times. Your child will feel much more secure knowing they can talk to you and look for solutions.
The Kid’s Companion on Kidneys from Kidney Health Australia may be helpful at this stage.
Develop realistic expectations
Reducing symptoms of Anxiety or Depression can take time, and coping with the changes that accompany CKD can sometimes trigger a new episode. It is important to accept the person as they are now and to have sensible expectations of what can be achieved and how long recovery may take. Learning more about the disorder and about treatments helps to develop realistic expectations about this process.
If the symptoms of Depression or Anxiety are getting worse and the person has started to talk about not wanting to live, or has hinted at harming themselves, take these statements seriously and make sure that their doctor knows about this.
What if someone says they don’t want help?
If someone doesn’t want professional help, find out if there are specific reasons for this. For example, the person might be concerned about finances or not having a doctor they like. These reasons may be based on mistaken beliefs, or you may be able to help the person overcome their worry about seeking help.
If the person still doesn’t want help after you have explored the reasons with them, let them know that if they change their mind they can always contact you. While encouraging the person to seek help, respect their wishes unless you believe that they are at risk of harming themselves or others.
What if the person is suicidal or self-harming?
For further information on how to help if someone is suicidal or at risk of self-harm, see Suicide prevention.
You can also contact the SANE Help Centre on 1800 18 SANE (7263). If there is an immediate risk to someone’s life, call 000.
Develop a plan for crisis situations
Work out a plan for coping day-by-day and for when a crisis occurs. Involve the person with the illness and the treating health professionals in the process. See How to help in a crisis.
Discuss strategies for when symptoms begin to recur or when the person talks about committing suicide, for example. Suicidal thoughts should always be taken seriously and discussed with the treating professionals. Mental illness often creates a feeling of powerlessness - developing a plan helps everyone regain a sense of control over the situation. Families, Friends and Carers can help with this process.
Carers need looking after too
When someone becomes Depressed or Anxious, it’s not surprising that this has an effect on family and friends, and they need support too.
When someone develops a mental health problem, family members or friends may have to take on added responsibilities. There may be confusion and tensions as everyone tries to cope with the demands of the illness, the anxiety of treatment and disruption to everyday life.
The effect a CKD diagnosis can have on families and friends
Family members may feel overwhelmed, especially if they have not faced a major crisis before and the diagnosis was unexpected. They may feel helpless because they cannot do anything about the illness. They may be confused and frustrated at changed behaviour. They may be angry that CKD or mental illness has happened in their family. They may feel guilty if they did not realise the serious nature of the illness. They may feel anger or resentment.
They are also likely to feel guilty about reacting in these ways. They may feel that they are responsible for the illness in some way; that they are not helping the person enough, or even that the illness is the fault of the person who has it. Family and friends can feel isolated and helpless at these times.
The important thing to remember about these emotions is that you need to express them. Do not feel you need to suppress or hide them, and do not be ashamed for having them. Not giving these emotions an outlet will make them more powerful, and feelings of guilt may increase.
Common causes of stress
Even when life has more or less settled down, there are additional, ongoing stresses when someone you care for has a chronic illness. For example, one group of dialysis caregivers identified the following ongoing stresses:
- Not enough time for own activities.
- Need space to simply relax and take stock of life.
- Difficulty being ‘on call’ 24 hours a day.
- Having to change plans at the last minute.
- Feelings of helplessness when unable to make the situation better or the pain go away.
- Difficulty in determining the seriousness of complaints by the person cared for.
- Feeling overwhelmed with responsibility.
- Unable to share feelings and concerns with others.
- Handling the daily financial responsibilities and arrangements.
- Hiding problems in order to avoid upsetting the person being cared for.
- Not knowing how to respond when the person being cared for doesn’t want to undertake treatment.
- It hurts to see the effects of the illness on the person.
If the person you care for has CKD and Depression or an Anxiety disorder, you’ve gone through the same ups and downs. In addition, you may feel tired and worn out. Sometimes caregivers are so involved in taking care of the other person, they forget to take care of themselves.
It’s important to remember that you need to take some time for yourself, whether it’s a short break during the day or a trip away somewhere.
Twelve-year-old child, Jackson, was diagnosed with CKD. He struggled with the illness, the treatments and being so different to his friends. Crying all the time, and not wanting to go to school or see friends, he started talking about running away from home.
Finding a support group for parents made his mother and father feel a lot less alone. When Jackson was diagnosed with Depression it was actually a big relief for everyone – they knew that there was something concrete that could be done to help him feel better.
When someone has CKD, Depression or an Anxiety disorder, it is not uncommon for family members to also have these conditions. It is important to be aware of this possibility, keep an eye on how you’re coping, and get help for yourself. After all, you are just as important.
With elderly parents, it is important to discuss expectations. Do they expect you to be their primary caregiver or would they prefer someone else?
Adult children are often surprised their parents are more comfortable with someone from outside the family helping them. Parents do not wish to be a burden on their children, or simply prefer the relationship to be non-emotional and professional. Discuss these issues if they arise, to avoid misunderstandings and hurt feelings.
Support groups for caregivers
Ask the dialysis centre’s social worker, the Kidney Health Information Service or the SANE Helpline, to refer you to a support group of other caregivers who are dealing with the same issues.
Many hospitals have support groups and invite educational speakers to talk. You can learn many things about coping with CKD and mental illness which will help.
Here are a few other resources for families and friends of someone with CKD:
- Families, Friends and Carers – explains the importance of dealing with your own reactions to mental illness, will help you find support, explains the skills which will help you to help the person improve their level of recovery, and looks at what needs to be done to plan ahead.
- Joe’s Diary is an illustrated storybook written specially to help young people who have a parent or other person close to them with a mental illness.
- For older children and young adults, ask the Kidney Health Information Service for more information.
Depression and Anxiety are treatable
Once Depression and Anxiety disorders are diagnosed, there is much that can be done to treat them, so we can start to get on with our lives again. With treatment, we feel better mentally, emotionally and physically.
The first step is talking to a professional. Many people find talking to their renal nurse helpful. They have a wide range of knowledge and experience about most aspects of kidney disease, including the emotional impact. You could also speak to your nephrologist or social worker at the dialysis unit or transplant facility. Remember, asking for help is not a sign of weakness, but of your desire to get better.
The person you choose to speak to will probably suggest a medical check-up with a GP. A physical condition may be causing the symptoms. Sometimes sadness, moodiness or anxiety are the direct result of a physical condition such as thyroid disease, low glucose or a hormonal contraceptive. In other cases they are the result of clinical depression or an anxiety disorder.
If the GP identifies Depression or Anxiety, they will be able to provide treatment, or make a referral to a specialist mental health professional such as a psychiatrist or psychologist. GPs often work closely with these specialists.
Psychiatrists are medically-qualified doctors who specialise in the study and treatment of mental illness. They have expertise in diagnosis, providing psychiatric treatment, prescribing medication and referral to other services.
If you are referred to a private psychiatrist, most of the cost can be claimed through Medicare.
Visits to a psychiatrist at a local Community Health Service or Community Mental Health Services are usually free of charge.
Clinical and counselling psychologists specialise in the treatment of mental illnesses, including depression and anxiety disorders. They can provide psychological therapies, which are often very effective treatments.
Psychologists cannot prescribe medication. Ask your GP about a Mental Health Care Plan, which allows for referral to a psychologist, or other suitably-qualified health professional, where most of the cost of visits can be claimed through Medicare.
Helping the health professional to help you
Help each professional to help you by giving as much information as possible. We all know what it’s like to leave a doctor’s surgery and remember something we forgot to say. Make sure this doesn’t happen by writing down a list of key facts beforehand and taking it with you.
Note down, for example, the exact symptoms concerning you, how long you have been experiencing them, recent stresses, if sleep or work are being affected, and any physical symptoms or other illnesses for which you are being treated. It is also useful to request a longer appointment, giving you both time to talk.
For more tips on getting the most out of your appointment with the mental health professional, see Making the most of your visit to the doctor from Kidney Health Australia.
What are the treatments for Depression and Anxiety?
The most effective treatment for many forms of Depression and Anxiety disorder is psychological therapy. Sometimes medication may also be prescribed for a while or longer-term. Sometimes a combination of psychological therapy and medication will be most effective. Individuals respond to different treatments in different ways. What works well for one person may not work well for another.
Discuss with your doctor how these treatments work, how effective they are, and what possible side-effects are. You will then be able to make a decision together on which is the best for you.
For further information on different treatment options available, please see 'Depression' in this guide.
Sam struggled with Depression for years, trying herbal remedies and seeing a counsellor. Nothing seemed to work and finally she felt that she had hit rock bottom. Her nephrologist referred her to a psychiatrist.
Sam was hesitant about taking the medication the doctor prescribed for her, but she gave it a go. She was pleasantly surprised a few weeks later when she started to feel a bit better, and began a course of psychotherapy.
What other support is there?
Many people find it helpful to meet at support groups with others who have the same diagnosis and had similar experiences. Discussing symptoms and tips for dealing with them in a relaxed, understanding environment such as this can be a great support. Contact the SANE Help Centre on 1800 18 SANE (7263) or call the Kidney Health Information Service on 1800 682 531 for details of a group in your area or a Kidney Health Australia Peer Support Volunteer.
Ask your treating health professionals or enquire at your council offices about other support programs available, and ask others what services they would recommend.
The SANE Help Centre can give details of services in your local area for people affected by mental illnesses, including supported accommodation, rehabilitation, recreation and employment, as well as support for carers too. Some States and Territories offer more of this type of support than others. Metropolitan areas also tend to have more services available than rural areas.
The important thing to remember is that you are not alone. Your health care team will work together with you and your family to get through this difficult time and successfully make the changes needed in your life.
In a crisis
See How to help in a crisis for advice on what to do when someone experiences a mental health crisis.