Caregiver Tips

Caring for Yourself

Coming to terms with what is happening

When someone very close to you has a terminal illness, the adjustment is extremely difficult. It usually takes a long time and a lot of effort to come to terms with what is happening. For everyone involved there is a very normal sense of approaching change and loss. These feelings usually bring about a reaction called anticipatory grief.

During this time, as a caregiver you may find that:

  • Time stands still
  • Priorities change
  • Life and death take on new meanings
  • Things you previously took for granted are changed forever
  • Your hopes for the future are gone
  • Life may even lose its meaning for a while

How you can help your loved one and yourself…

If you and your loved one share anticipatory grief, you may be able to support one another and take comfort from special moments together.

Take your cues from how your loved one is feeling, but acknowledge your feelings as well.  Keeping a daily journal may help you with this.

Be truthful, especially when you or your loved one is doing poorly.  Everyone, whether sick or well, should be treated with honesty.

Respect the privacy of the sick person and allow as much control as possible when making decisions about care and activities.

Go easy on giving advice and be open to it being ignored.

Share your hopes, thoughts and feelings with your loved one. It may provide comfort to you both and build a better understanding of what is important and how you can provide the best support.

Enjoy the good days and make the best of your times together.  This can be a good time for you and your loved one to share special moments and remember the important things in your lives.  It may help you both to adjust to what is happening.

Reminisce about your life together, the good and the not so good.

Include your loved one in family activities whenever possible.

Spend time together talking, listening to music, watching television, playing cards or games.  Share your thoughts and feelings, laughter and tears.

Try to resolve any conflicts or unfinished business that you might have.  If this is difficult, perhaps a third person can help both of you come to an understanding.

Share your plans for the future, even though it seems impossible to imagine.

Help the person with putting affairs in order.  Settling the estate can help you both to prepare.  This is a good time to check that your loved one’s will is up to date and you know where it is.

Take care of yourself.  Talk about your feelings and concerns with someone your trust and who understands your situation such as a family member, friend, counsellor or religious advisor.

You might expect as your loved one health declines…

  • As the illness progresses, both you and your loved one will have many changing emotions.
  • Increasing fear, yearning, anxiety, edginess, irritability and sadness may occur.
  • You may both feel totally out of control, confused and powerless.
  • Mood swings between periods of denial and acceptance, hopefulness and hopelessness are common.
  • The person who is dying may withdraw from normal life activities.
  • Changing physical appearance may make the person reluctant to be seen by others.
  • The person may become anxious about being a burden.
  • At times you may be uncertain about what you should be doing.
  • You may become distracted causing you to wonder if your memory is poor
  • Worries about how you will cope now and after the death may be present.
  • You may have a greater awareness of your own mortality.

Caring for yourself the Caregiver

Caring for your loved one who is ill can be rewarding but it can also be physically and emotionally draining.  It is difficult to predict how long you will be providing the care.  If you are going to keep giving to others, you must make sure that you take care of yourself as well.

What you can do to care for yourself

  • Ask for and accept help with personal care, household and other tasks; phone calls and shopping.
  • Find ways to handle updates and enquiries; use emails, designate a friend.
  • Notice what gives you comfort or pleasure; time with others, reading, nature.
  • Remember to breathe, to eat and sleep.
  • Set limits and say no when you need to. Let others know how you are doing.
  • Continue to pay attention to the humour and beauty in life.
  • Share stories and memories.
  • Acknowledge this is a difficult time. Remember that everyone (including you) is doing their best.
  • Do anything that feels like self-care; massage, haircut, nap, walk, sit  quietly, cry.
  • Maintain your spiritual and religious practices.
  • Sing, play or listen to music that comforts or uplifts you.

Information provided by “A Caregivers Guide” CHPCA and Victoria Hospice Society.