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Dealing with feelings and emotions

Taking care of yourself

"I constantly worry about making mistakes. Then I get stressed and end up making more mistakes. I’m going to bring it up at the next self-help group meeting to see how other people manage." (Fatima)

"I am drinking more and more coffee and have started smoking again. I don’t think it actually helps. I just seem to do it. Sometimes I feel so stressed, I could scream." (Dave)


Dealing with stress

As a carer or a person with dementia, you may find yourself under considerable stress as you try to find out information about the disease, envisage the future, organise care and come to terms with your own fears and worries. As time goes by, you may find yourself in situations that are unfamiliar to you. Carers may become increasingly exhausted, both emotionally and physically. People with dementia may also find it exhausting as they try to make sense of a world which is becoming increasingly unfamiliar and deal with a gradual loss of capacity. For these reasons, it is important to develop a good support network and to be on the lookout for signs of stress which include the following:

  • drinking too much coffee each day
  • taking sleeping tablets to get a good night’s sleep
  • lying awake at night worrying
  • abusing medication
  • starting to drink too much alcohol or to smoke too much
  • binging on sweet things e.g. chocolate, sweets and cakes
  • often feeling the need to scream or cry
  • thinking about or contemplating suicide
  • feeling overwhelmed or that everything is hopeless
  • feeling isolated and on your own with your problems
  • losing or gaining weight
  • suffering from odd aches and pains
  • being irritable about everything
  • arguing, especially over trivia
  • having a pounding heart or palpitations

If some of the above apply to you, try to tackle the problem straight away. Having stress is not a sign of personal weakness or lack of character. All kinds of people suffer from stress. To help your body cope with stress, try to make sure that you take more exercise, cut down on smoking and drinking alcohol or coffee, get plenty of rest and seek support from other people. It is also important to eat well i.e. have regular meals, avoid high calorie snacks and sweets, cut down on salt, sugar and caffeine, drink plenty of water, have lots of fruit and vegetables etc[1].

If and when you do feel stressed, try to concentrate on your breathing. Take slow, deep breaths and at the same time, tell yourself that getting stressed is not going to make the situation any better. If possible, find out about different relaxation techniques and see which one works best for you. Relaxation tapes can also help.

If you find yourself saying things like - “I’m useless” or “I can’t cope” – try to replace this with more constructive statements like – “If I just take my time, I’m sure I’ll manage” or “I’m not very good at this, but I’m pretty good at ….”. Stress is often linked to a feeling of lack of control. Try to find out what is stressing you and see whether there is anything you can do about it. If there isn’t, work out how you could better live with it.

For the person with dementia

  • Try to avoid stressful situations as much as possible and/or occasions which you find give rise to stress/agitation.
  • Develop routines.
  • Concentrate on your existing abilities and set yourself realistic targets.
  • Ask for help if needed.
  • It is understandable to feel stressed but at the same time important to do something about it. Try to talk to someone about it.

For the carer

  • If possible, try to have a break from the source of stress. You might find respite care a good solution. There are different kinds of respite care. For example, it could be a person who comes into your home and cares for the person with dementia whilst you are away or a residential centre where the person with dementia spends a few hours, days or weeks. There might also be sitting services in your area. This involves a person keeping the person with dementia company so that you have some free time or simply a good night’s sleep.
  • If the stress is linked to your workload, try to reset your priorities and/or get assistance.
  • Some carers might benefit from various kinds of training e.g. time management, stress management, assertiveness training, relaxation techniques etc.
  • Remember that it is best to deal with stress straight away. If not, it is likely to interfere with your ability to care and be detrimental to your health and wellbeing.
  • Concentrate on what you can change and try to accept what you can’t.

[1] Source : the British Heart Foundation brochure “Stress and your heart”

"I’m in the very early stages of dementia and am going to group therapy for depression. I don’t know yet if it will help but I’m certainly going to give it a try." (Clifford)

"Sometimes, I used to sit down on my own in the dark and just cry. I didn’t feel like eating and couldn’t sleep very well either. I thought I possibly had good reason to cry so I didn’t take it very seriously and told myself that my wife was far worse off than I was. When my daughter found out, she was very concerned and thought that I might have depression. I have promised her that I will ask a doctor about it." (Terence)


Dealing with depression

Many things can contribute to depression e.g. biological factors (too little or too much of certain brain chemicals called neurotransmitters), cognitive factors (negative ways of thinking), genetic factors (a family history of clinical depression), medication, situational factors (moving to a new place, a significant loss, and financial problems) and a co-occurring illness (e.g. Alzheimer’s disease or Parkinson’s disease). It is quite common for depression in the elderly to be mistakenly diagnosed as dementia and vice versa.

When you are depressed, it is not always possible for you to know that you are depressed. You may read what is written but not think that it applies to you. It can also be difficult to distinguish between depression and grief, sadness or worry as it is fairly common for carers and people with dementia to feel down, sad or discouraged as they come to terms with various losses and changes in their lives. However, with depression, the symptoms may be more severe, persist beyond a few days or weeks and seem impossible to surmount.

The most common symptoms of depression are as follows:

  • Tiredness and loss of energy
  • Persistent sadness
  • Loss of self-confidence and self-esteem
  • Difficulty concentrating
  • Not being able to enjoy things that are usually pleasurable or interesting
  • Undue feelings of guilt or worthlessness
  • Feelings of helplessness and hopelessness
  • Neglecting personal hygiene
  • Sleeping problems - difficulties in getting off to sleep or waking up much earlier than usual
  • Avoiding other people, sometimes even your close friends
  • Finding it hard to function at work/college/school
  • Loss of appetite
  • Loss of sex drive and/ or sexual problems
  • Physical aches and pains
  • Self-harm
  • Thinking about suicide and death (Adapted from: Depression Alliance)

If you have regularly experienced some of these symptoms for over two weeks, then you should contact your doctor who will be able to make a proper diagnosis and rule out any other physical causes. It is unrealistic to expect people to just “snap out of it” or “cheer up”. Treatment might include a combination of medication, psychosocial support and/or counselling. In the early stages of the disease, psychological counselling can still be beneficial to people with dementia. It is important to remember that depression is not a sign of weakness or anything to be ashamed of. It can happen to anybody (male or female) at any age and is treatable.

For the person with dementia (and also the carer)

  • As people are often unaware that they are depressed, people with dementia, carers, friends and relatives need to be very vigilant and rely on each other.
  • Depression can just creep up on you. You don’t know how you got to feel so bad. You don’t know much about the journey. You just know that you’ve ended up somewhere very dark and frightening.
  • When you are depressed, the way you see things is very different to the way others around you might. There is no point trying to reason with a depressed person or contradict their view of the world. This does not usually work.
  • If you are depressed, you must get help from a doctor in order to start your recovery.
  • With help you can get through but you have to work hard at it yourself. It is something you have to fight for.

"Sometimes, I pretend to understand when people are speaking to me. I’m afraid that they will stop asking for my opinion once they realise that I don’t fully understand what they’re saying." (Fiona)

"My biggest fear was not being able to manage everything that needs to be done in the house. I’m not getting any younger after all. We discussed it though and my son is going to arrange for us to move to sheltered housing next year." (John)


Dealing with fears and worries

Caring for a person with dementia is a new experience for most people and one that is often accompanied by fears and worries. It is not uncommon for new carers to feel overwhelmed and daunted by the prospect of what lies ahead. People with dementia may also have fears and worries e.g. the fear of abandonment, of being a burden to others, of “going mad” and of losing control.

Fear of possible stigma associated with dementia is common and can lead people to avoid contact with others. Fortunately, attitudes are gradually changing due to greater awareness about the disease but in certain cases, it may be necessary to develop a thick skin and simply brave it. Another common worry is embarrassing behaviour. Most people are afraid of showing themselves up in front of others. With dementia, however, as the disease progresses the person cannot always make sense of situations, may have forgotten certain rules and etiquette and may be trying to communicate to the best of their ability. Explaining to people a bit about what dementia is may help them to understand.

Financial issues can cause a great deal of concern. It is therefore important to try to sort out one’s finances as soon as possible and most importantly whilst the person with dementia is still able to take part in the decision-making process. Depending on your circumstances, as carer or a person with dementia, you may be entitled to certain state benefits and social work support, tax exemptions or financial aid. Try to find out what you are entitled to now and what kind of benefits may be available to you in the future.

For the person with dementia

  • Remind yourself that you are not “going mad” but experiencing the consequences of a disease.
  • Try to surround yourself with people you trust and in whom you can confide.
  • Discuss your fears and worries either with your care partner or with someone else you can trust.
  • Support groups can be helpful as they can give you the opportunity to discuss such issues with people who are in a similar situation to you.
  • Don’t think of yourself as a burden. Caring might often be hard work and stressful, but the majority of caregivers place this in the context of a relationship which amounts to much more than just that.
  • If you are worried about doing something embarrassing, try to make sure that you are with someone who can help you out of the situation.
  • Alternatively, you could explain to people in advance that you have dementia. Some people carry a card (about the size of a credit card) which briefly explains that they have dementia in case they find themselves in a difficult situation and don’t want to be overheard (please see page 52).
  • Try not to let your fears prevent you from getting on with your life. After all, even people without dementia do embarrassing things sometimes!
  • Think about writing an advance directive (living will)1. This can be used to inform doctors about your preferences with regard to future medical care and treatment. It could also contain details of other preferences which you would like future carers to take into consideration e.g. that you prefer coffee to tea, like to go to bed late and prefer a bath to a shower. Your local Alzheimer association will be able to give you more information about advance directives.
  • You might also find it useful to have a power of attorney which allows a specified person to do certain things on your behalf.

For the carer

  • Symptoms will tend to appear gradually rather than all at once, so you will have time to build up your confidence and expertise in dealing with them. You will also have time to ask for advice from professionals and support from family, friends and relevant organisations.
  • Set yourself clear limits at the start concerning up to what point you can manage and when you are likely to need outside help. Try to involve other people in caring.
  • Take care of yourself as much as possible.
  • Try to work out what the person with dementia is really trying to do or communicate through their behaviour and learn to identify situations likely to trigger potentially embarrassing behaviour.
  • If you think it would help, explain to people that the behaviour is due to a disease and is not intentional. Other possibilities include distracting the person with dementia or leading them away from other people.
  • Think about whether it really is necessary to do something about the behaviour. Maybe the person with dementia is not embarrassed, maybe the behaviour is unusual but not disturbing anyone and maybe the person with dementia is enjoying him/herself.
  • Avoid making promises early on which you might be unable to keep for ever e.g. that the person with dementia will never go into residential care. You can only do your best and cannot guarantee that you will always have the strength and good health to care for the person with dementia at home.

"People told me that I looked angry and was sometimes offhand for no reason. I spoke to my counsellor about it. Gradually, I realised that I was angry with the disease not my family and friends. Now, I try to deal with the anger in my therapy sessions." (Denis)

"Julie gets so angry when her father forgets to do something that he said he would do. She knows he’s got Alzheimer’s disease but thinks that he sometimes does it on purpose. I know it’s not the case, but as he doesn’t look ill, it’s easy to jump to conclusions." (Sandra)


Managing anger

People with dementia and their carers may feel angry from time to time – with each other, with themselves, about the disease, about the frustrations of daily life, with doctors and other health care professionals etc. For example, sometimes people with dementia move something, forget having done so and think that someone has stolen or moved the object in question.

Consequently, they may make false accusations and become angry with other people. Sometimes they may feel that the anger is justified but at other times, that it seems to be based on a misunderstanding of the situation, frustration or the consequences of the disease. Anger is often linked to feelings of injustice i.e. someone is acting unfairly or an event is unjust. However, it is not the event or action that makes people angry, but rather their interpretation of it.

Most people have some degree of difficulty dealing with anger. Perhaps this is due to childhood training, to the mistaken belief that anger inevitably leads to aggression or to a feeling that anger is in some way wrong or destructive. If handled correctly, anger can be constructive in that it can bring about positive change. On the other hand, it can be destructive if repressed, expressed indirectly or expressed in a way that is out of proportion to the event that caused it. Expressions of anger should not be confused with acts of aggression but an angry person’s threshold for aggression is lower than that of a person who is not angry. Consequently, effective management of anger is important in order to prevent and control aggression.

As a general rule, it is best to acknowledge that you are angry, experience the bodily sensations which accompany the feeling (e.g. tense muscles, feeling warm, clenched jaw, shallow breathing etc.) and then verbalise the feelings. It is not always necessary to say something directly to the person concerned but if you don’t, you should at least acknowledge the angry feeling to yourself. Experiencing the bodily sensations is important as this helps prevent expressing your anger in a destructive way.

It is possible to learn certain other techniques to manage anger but as dementia progresses, people with dementia will unfortunately not be able to use them all. People with dementia will find it increasingly difficulty to interpret events and actions so it may be difficult for them to find out what is making them angry. In some cases, medication may be a solution for the person with dementia.

Things to do:

Find a quick way of regaining control

Take a deep breath, count to 10 etc.

Express your feelings in a safe environment

Hit a pillow, do some manual work, shout, mutter to yourself etc.

Develop the ability to empathise.

Try to empathise with the person you are angry with.

Turn anger-arousing thoughts into anger-reducing thoughts

e.g. instead of thinking “she probably did that on purpose” tell yourself “accidents happen”.

Turn blaming “you” phrases into “I” phrases.

e.g. instead of saying “you don’t let me do anything myself”, say “I’d prefer to do that myself”.

Weigh up the advantages and disadvantages of getting angry

Ask yourself what you will gain from being angry and work out whether it’s worth it.

Share your feelings

Discuss what made you angry later, either with the person concerned or a neutral person.

Things to avoid:

Passive-aggressive behaviour

Anger is sometimes expressed indirectly out of fear of displeasing people e.g. letting the meal burn instead of saying “I can’t be expected to cook the meal and tidy up after you”.

Denial

People sometimes distort the facts in order to convince themselves that there is no problem when in fact there is e.g. “I know my brother really wants to help but he’s just too tired when he gets back from work”.

Displacement

Avoid taking out your anger on something or someone else e.g. shouting at your children or making the dog wait to be taken out.

Suppression

Try to express your feelings in order to prevent them being converted into psychosomatic symptoms e.g. headaches, ulcers, backache etc.

Labelling people

People have a tendency to attribute negative labels to others who are making them angry e.g. lazy oaf, clumsy fool etc. This may make them feel self-righteous and superior. Try to focus your anger on the actual issue/problem rather than summing up the whole person in a totally negative way.

Mind reading

Avoid jumping to conclusions about why a person behaved as they did. Try rather to understand what the person really intended to do or say.

Being judgemental

Instead of saying to yourself “He should stop doing that”, try “It would be nice if he stopped doing that”.

For the person with dementia

  • You are entitled to feel angry and to express your anger.
  • If the anger is misplaced, this is unfortunate but not something that you should blame yourself for. However, if you realise that it was misplaced, you can always apologise as you may have hurt the other person.
  • Counselling can sometimes be effective in the early stages and could give you the chance to recognise and express your anger.

For the carer

  • Try to remember that annoying behaviour from a person with dementia is very often due to the consequences of the disease and is not intentional.
  • If possible, think about the events that preceded the outburst of anger.
  • See if there is anything you could change to prevent it happening again.
  • See if there is anything you could change to prevent it happening again.
  • Don’t be afraid to express your anger in the presence of the person with dementia. This is sometimes necessary in order to avoid a build up of anger which may eventually be difficult to control effectively.

"I feel like a burden to my wife. We planned to tour Europe together when we retired. Now she has to spend her time keeping an eye on me. She assures me that touring Europe is not the most important thing and that we still have each other. Still, I feel guilty about it." (Ben)

"I used to go fishing with my grandfather a lot but he started mixing up the bait and not reeling in the fish when he’d caught them. I got really annoyed and sometimes wasn’t very nice to him. Some time later, he was diagnosed with dementia. When I look back, I feel guilty about being so angry and self-centred. It’s too late now to do anything about it so I just try to help him as much as I can and to be more understanding." (Louis)


Dealing with feelings of guilt

People who are caring for someone with dementia often suffer from guilt feelings. There are a number of reasons for this. For example:

  • they might not have got on very well with the person with dementia in the past
  • they may resent having being assigned the role of carer
  • they may have conflicting demands (e.g. between work and family commitments)
  • they may feel bitter about the person with dementia having the disease and the implications that this has for their own future
  • they may feel that something they said or did triggered the disease
  • they may feel that they are not good enough at caring

People with dementia may also suffer from feelings of guilt, particularly if they perceive themselves as being a burden to their family or the carer. They may also feel guilty about not being able to continue work, being responsible for their partner having to work more or of depriving their family of a certain kind of lifestyle and the future they hoped to share. Making mistakes can also lead to guilt feelings. Carers and people with dementia may feel guilty about needing help from others, about not being able to manage alone and about getting irritated with each other.

For the person with dementia

  • Having dementia or being a carer does not make a person immune to feelings of irritation.
  • If you feel irritated, try to express this.
  • Let other people help you.
  • Don’t feel guilty about letting others help you.
  • Sometimes it can help them too.

For the carer

  • Try not to overcompensate for the past but rather concentrate on what you can do now and for the future.
  • Make sure that your expectations related to caring are realistic. This involves recognising your own limits.
  • Don’t blame yourself for feeling irritated. You’re only human.
  • Reassure yourself that nothing you said or did caused dementia. Your doctor will confirm this.
  • There is no need to feel guilty about accepting help. Caring can be exhausting. Accepting help means that you will have more energy and may be able to carry on caring for longer.

 

 
 

Last Updated: Friday 11 September 2009

 

 
 

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