When you become a caregiver it may seem difficult to view yourself in that role.  

You already have an established relationship with the person you are caring for and now that relationship has changed.  While you remain a wife, husband, son, daughter, grandchild, parent; you are also a carer if you:

  • Talk to medical staff about the person’s conditions and organise their medications.
  • Take care of chores, finances and meals for someone because they cannot manage to do it themselves.
  • You care for another person without getting paid.

Doing these things may feel to you as something that you ‘just do’ when a loved one needs assistance and your role as carer is to be expected.  However officially designating yourself as a carer means that you may have access to:

  • Information about your family member’s condition and the right to be present during consultations.
  • Services such as respite care, a carer’s allowance from Centrelink and tax offsets.
  • Training on more complicated aspects of your family member’s care such as giving insulin injections.
  • The right to be involved in decisions on long term care.

The Four Phases of Caring

In the earlier section on grief there was information on the stages of grief, caring is similar in that it also has stages.  You may find the stages overlap and some will last longer than others.  The shock stage may not occur if the person’s health was declining steadily and the carer’s role had been expanding over time.

The Shock Stage

This is the period immediately after the accident/illness when stress is high and you are coming to terms with what happened.

Many people cope well at this stage as you are living on adrenalin and offers of help come from family and friends.  It is important to not rush into major decisions such as giving up your job or selling your home: think through decisions and gather as much information as you can.

The Reality Stage

This period is marked by increasing feelings of loneliness, isolation and resentment.  The resentment you feel may not be directed at the person you are caring for; it may be directed towards the friends and relatives who are no longer helping or the situation in general. When people outside of the home feel that the crisis is over they will return to their normal lives and activities and think “she/he has it all under control”.

As a carer you are particularly vulnerable to developing depression as you have put so much of your life on hold and you may fear losing your individual identity.  This period is when you may settle into routines that are not healthy such as doing tasks late at night instead of sleeping.

The Acceptance Stage

You can reflect on your role and are coping with the routine in your life. At this stage you will find yourself considering your options as you reflect on how much you can do.  The person you are caring for may have also come to accept what is happening or become more independent (e.g. they have a prosthesis) While you may have come to terms with your role, be aware of unhealthy behaviours such as thinking you are the only person capable enough to care for your family member and viewing your identity solely through the lens of a carer.

The End of Caring Stage

When your role as carer ends through the independence of your family member, the need for nursing care or death; you may struggle with your identity. You had invested so much of yourself in the caring role that now you find yourself lost or isolated. It is important to not rush into decisions but consider what you want to do now: return to work, volunteer, learn something new and investigate how to make it happen.

Communicating effectively

As a carer you will have occasions when you need to have a conversation that may result in disagreement. The basics of effective communication are levelling, listening, validating and non verbal communication.

Levelling (the playing field): Disagreements often occur because we assume people can read our minds or ‘between the lines’.  When you are communicating make sure that you clearly express your needs and feelings.

Listening:  Communicating is more than talking: you need to listen.  Pay attention to what the person is saying, clarify you are understanding them and let them speak without interruption.

Validating:  You need to show that you understand how and why they feel the way they do.  This does not mean you have to agree with them.  Accept their feelings as truthful.

Non verbal communication:  When communicating your tone, eye contact, and gestures are the real indicators of how you feel.  If your non verbal expressions do not align with what you are saying the other person will know you are not speaking truthfully.

Other communication tips:

  • Try to choose a time that will have minimal interruptions and stress.
  • Avoid sarcasm.
  • Stick with the pressing issue, avoid bringing up everything at once or old grievances.
  • Don’t use ‘you always’ ‘or ‘you never’ both of these will make the other person defensive.
  • Postpone the discussion if you or the other person are becoming angry.

Using “I” Statements

In this section there are references to a communication technique called “I statements”.  This is a way to minimise conflicts and express needs.  Using I statements such as “When you x I feel y” instead of “You can’t x” is a way of communicating your needs in a way that may reduce conflict.  When you express your feelings as if they were a universal fact and not your subjective experience the other person will become defensive as they see your statement as telling them their feelings are wrong.

The following is an example of a conflict without “I” statements. Do keep in mind that this technique is not a guarantee of resolving conflicts but it may help.

Daughter: Dad you can’t live on your own, if you had a fall no one would be there.  

Father: I like this house, I’ve been there 48 years and I can look after myself just fine. 

Daughter: Don’t be selfish, think about how others feel for once.

Father: You’re the selfish one, I’m a grown man, you don’t make my decisions for me. 

Daughter: You’re so stubborn I can never make you see sense.

Notice how both people become determined to be ‘right’ and the conflict grows, hurtful things are said and the original issue is not resolved.  Now the conversation with “I” statements:

Daughter: Dad, now that you are living on your own I am worried about what happens if you had afall.

Father: I’ve been here 48 years, I need myindependence so I don’t want to move.

Daughter: How can I not worry about you

Father: If you are really worried I could phone you at a certain time each day.

Daughter: I think that will work, let’s try it for a while and see if it helps me to worry less.

You will find communicating in this way takes practise but it will become more natural over time.

Stress

Providing care for a loved one can be immensely rewarding but also stressful.  It is natural to feel stress; as a caregiver your life changes significantly.  Stress can come from different sources you might experience it from one source or many in your role as caregiver.  If you can recognise the source of your stress it becomes easier to deal with.

Recognising sources of stress 

Physical stress: You are tired, not eating well.  The care tasks are physically demanding such as transfers which are causing you pain such as backache.

Emotional stress: The person may be angry, lashing out or depressed.  You may be grieving, guilty or feeling alone and unsupported.  You may have drifted away from friends, lack the freedom to socialise or had conflicts with family about the caring arrangements.

Financial stress: You have lost a source of income, your retirement plans are on hold, your savings are dwindling and medical expenses are costly.

Some stress can keep us motivated but too much is bad for your physical and emotional health. How do you know that you are becoming too stressed?  The signs to watch for include:

  • You have symptoms of depression.
  • You have anxious feelings and overwhelming worries.
  • Minor illnesses take a major toll on your health.
  • You are exhausted.
  • You are quick to anger and are often irritable.
  • You forget things easily or cannot concentrate.
  • You have lost interest in hobbies.
  • Your weight is fluctuating.
  • You are neglecting your own health such as missing your annual mammogram.
  • You have recurring health problems like headaches.
  • You find yourself needing alcohol or drugs (legal or illegal) to get through the day.

When it’s too much

If the stress is too much external care is something to consider.  You have options when choosing respite including:

  • Residential care:  the person stays in a care facility for two weeks or more.
  • Respite care: the person has a few days away from home in a care facility.
  • Day respite: the person goes to a care facility for the day and returns at night.
  • In home care: a professional carer comes to your home.
  • Family arrangements: you arrange informal respite with relatives or close friends.

Not all options are available in all areas so investigate what is available where you are.

When considering respite it is normal to feel guilty and to worry about your loved one leaving your care.  Think of respite as helping you to be a better carer by allowing your body and mind to rest.  If the other person is not amenable to respite try to work out a compromise so that you have some time for yourself on a regular basis.

You can explain that you need the rest so that you can continue to care for them at home as long as possible and you are not giving up or abandoning them.

Often we are fearful of respite because we do not know what is involved.  If you have seen reports on sub­standard care facilities or abuse by carers; you or your loved one may be fearful.  You may also be of an age where you knew of somebody in an ‘institution’ and how depressing and restricted those places were.  A good respite facility will allow you to visit, take a tour and ask questions.  The practise of strict control over clients is long gone, client’s are encouraged to maximise their independence and make choices.  You could look into short stays to assess the facilities before committing to longer care.

Shorter respite can help ease the transition to longer respite for both of you, helps you choose a good facility and give both of you peace of mind by knowing an option is there if you cannot be a caregiver because of injury or illness.

Tips for making caring less stressful:

  • Think over the big decisions before acting.  Never sell your home, quit your job or move a family member into your home until you have researched and evaluated your options.
  • Set limits.  You don’t have to do it all. Look for ways you can delegate tasks.
  • Consult with other family members.  Discuss their feelings on how your family member should be cared for.
  • You may be eligible for a carers allowance, tax offsets and funding for equipment or respite services.  Talk to Centrelink, your occupational therapist, doctor and the ATO about what you may be eligible for.
  • Plan for the future.  Investigate the prognosis for your family member’s future and think about your own future.  Let go of guilt and make the decision for assisted care when it is needed.
  • Don’t give up things you enjoy.  Keep involved in some of your favourite activities as it keeps you from feeling overwhelmed and isolated.
  • Make a list of the most important tasks you need to do each day.
  • Be willing to change what you are doing when something goes wrong.
  • Know where to find all the financial, legal, and medical papers.
  • Make lists of emergency phone numbers, medicines, and other important information.  Post these lists in places where people will see them.
  • Know your limit.  Be willing to say “no” when one more task will cause you too much stress.

Future and emergency planning

As a carer you will need to undertake long term planning as you may not be able to continue caring due to illness, injury, death or natural disaster.  The following are some ways to minimise the stress of a change in a loved one’s care.

Organise legal affairs for both of you including wills and powers of attorney.  You both need to have directives covering financial responsibilities and health care.  Decide how your loved one should be cared for if you cannot do it any more.  Organise your finances to cover the costs of outside care.  Consider the future costs of external care and have contingency money for difficult times.

Imagine you have gone to the bank where you trip over, hit your head and are taken to hospital while unconscious.  Would anybody know there is a person reliant on you at home?  As unpleasant as it is to think about your own incapacitation or death; carry emergency details with you so that medical personnel know that someone is in your care.

Decide with your loved one on an emergency carer.  You may need to have a surgical procedure or attend to a family issue such as an interstate funeral.  Make sure the emergency carer knows the reality of what is needed from them and is willing to do it.  If you do not have someone know what your local respite options are.

Is your home at risk of floods, cyclones, severe storms or bushfires?  Plan how and when you would evacuate and where you could go if ordered to leave your home on short notice.  Plan how you would transport your loved one’s aids, equipment and where to get needed medications.  Consider the risks of being without electricity or clean water for days after a natural disaster.

 Staying physically healthy

  • Eat a healthy diet and drink plenty of water and other liquids without alcohol or caffeine.
  • Splurge sometimes by eating “comfort foods”.  These include pasta, potatoes, and other high­carbohydrate foods which can help you feel better when stressed.
  • Make extra portions when you cook.  Freeze the extra in meal­sized containers which you can later heat up.
  • Let someone else cook. Ask if any local groups, such as “meals on wheels,” offer free or low­cost meals to older people and those with disabilities.
  • Try to go to bed and wake up at about the same time each day.
  • Keep your bedroom cool.
  • Listen to quiet music or relaxation tapes to lull yourself to sleep.
  • Exercise during the day, not at bedtime.
  • Do not drink caffeine or alcohol before bed.
  • Go to the doctor for check­ups.
  • Be active each day. This may be walking, swimming, gardening or doing other activities with a friend.
  • Stretch your muscles to help your body relax and stay strong.

Staying emotionally healthy

When friends and family members ask how you are, tell them.  This includes talking about your feelings and what you find hard about being a caregiver.

  • Write in a journal. For many people, this is a good way to express feelings.
  • Visit with friends and family rather than always being alone.
  • Ask for help when you have problems, concerns, or do not know what to do.
  • Laugh. Maybe you and the person you are caring for can both enjoy laughing at funny books, web sites and TV shows
  • Calm yourself by taking deep breaths, doing yoga, or meditating.
  • Reach out. Studies show that people often feel better when they hug someone or pet an animal.
  • Take time for yourself.  Do something you enjoy such as playing music, reading, or being outdoors.
  • Get help when you need it.  Tell your doctor or healthcare provider if you have signs of depression.  These signs include having no appetite or trouble sleeping, feeling cranky, crying a lot, or having trouble thinking or remembering.
  • Do not deal with your feelings by drinking alcohol, taking drugs or working too much.
  • Take a break from being a caregiver.  Ask family, friends, or healthcare workers to help so you can take some time for yourself.
  • Do something you enjoy at least once a week.
  • Give yourself a treat from time to time.
  • Do activities that can be quickly stopped and started again.  These might be reading, doing crossword puzzles, and playing games like chess or drafts.
  • When people offer to help, let them.  You have nothing to feel ashamed or guilty about.
  • Have lists of small chores and jobs that others can do.
  • Ask people to do what they are good at.  For instance, someone who likes to cook can make you meals.  Or someone who likes to garden may want to mow your lawn.
  • Join a local caregiver support group to meet others facing the same problems as you.