Topic: 3

Care for the Caregiver and Handling Your Emotions

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WHAT YOU NEED TO KNOW

The experience of being a caregiver can bring out all kinds of emotions. “There are times of great love, intimacy and laughter. There are also times of frustration and exhaustion. Often the difficulties do not come from taking care of someone else but because we forget to take care of ourselves or we do not ask for enough support from family, friends and community services. Some of the frustration comes from trying to understand and benefit from the complex healthcare system where we live.”

(Caring for Loved Ones at Home 6th ed. Harry van Bommel, Saint Elizabeth Health Care Foundation)

You may feel:

  • More love for the person than ever before; and
  • Greater inner strength and resolve to do your very best for your loved one.

But it is equally normal to feel:

  • Sad
  • Angry
  • Fear and anxiety
  • Guilt
  • Emotionally exhausted

You may feel one way on one day and another way on the next day. Or you may feel sad and angry, for example, all at the same time. You may fear the loss of your loved one, anger at why this person is so sick or dying, frustrated at not being able to “do enough” and anxious due to how much responsibility you now have. Take comfort in knowing that all of these feelings are perfectly normal!

Be gentle with yourself about how you are feeling BUT take some action to relieve the pressure. Just like a pot boiling on the stove, you need to let off some “steam” if you are to continue to be a strong, capable caregiver.

Strategies for Coping

  • Pound a pillow
  • Sit in the car and scream
  • Go for a brisk walk or run
  • Get the resentment off your chest by talking to a friend, family member or your doctor
  • Access the visiting or wellness programs at your local hospice
  • Take a yoga class
  • Practice meditation
  • Join a support group of other caregivers
  • Talk to your spiritual or religious leader
  • Avoid people that make you angry
  • Walk away, step outside, take a break if your frustration is getting the better of you
  • Cry if that helps (It is one of the ways that the human body has for coping.)
  • Laugh and don’t feel guilty (Laughter breaks tension and is a wonderful stress relief.)
  • Write/ sketch in a journal about how you are feeling
  • Practice deep breathing and relaxation techniques
  • Arrange someone to stay with your loved one so you can have just a couple of hours to yourself even if you only go walk around the mall or sit in the park
  • Access the visiting hospice program

Get a Good Night’s Sleep

Sleeping well is so important to your mental, physical and emotional health. There are many reputable websites that provide help with learning how to sleep better. Search on “How to get a good night’s sleep”

How will I know if I am “burned out”?
Caregiver burnout is a very real thing. Everyone may feel emotionally exhausted sometimes but it is the intensity and frequency of the feelings identified below that separates a normal reaction from burnout. If this describes you most of the time, it is time to seek help from a doctor.

Caregiver Burnout The urge to run and hide from responsibility becomes very strong. Your activity is scattered and frantic. You are often irritable and angry. You can’t concentrate. You often lose track of important details. You lose more than 10 pounds and/or sleep less than three hours at a time. You can’t read more than a few sentences before losing concentration.

Try this exercise: Think about your life during the last few weeks and select Yes or No for each statement.

  1. Had trouble keeping my mind on what I was doing…
  2. Felt that I couldn’t leave the person that I am caring for alone…
  3. Had difficulty making decisions…
  4. Felt completely overwhelmed…
  5. Felt overcommitted in terms of how much I am needed…
  6. Felt lonely…
  7. Been upset that the person that I am caring for has changed so much from his/her former self…
  8. Felt a loss of privacy and/or personal time…
  9. Been edgy or irritable…
  10. Had sleep disturbed because of caring for this person…
  11. Had crying spell(s)…
  12. Felt strained between work and family responsibilities…
  13. Had back pain…
  14. Felt ill (headaches, stomach problems, or common cold)
  15. Been dissatisfied with the support my family has given me…
  16. Found that the person that I am caring for has a living situation that is inconvenient or a barrier to care…
  17. On a scale of 1 to 10, with 1 being ‘not stressful’ to 10 being ‘extremely stressful, please rate your current level of stress: ________
  18. On a scale of 1 to 10, with 1 being ‘very healthy’ to 10 being ‘very ill’, please rate your current health compared to what it was this time last year:   _______

To interpret the score: It is possible that you are experiencing a high degree of stress if any of the following is true:

  • You answered “YES” to either or both question 4 and 11.
  • If your total “YES” scores = 10 or more
  • If your score on question 17 is 6 or higher.
  • If your score on question 18 is 6 or higher.

If you are experiencing burn-out, you need to get help right away. Call your family doctor and schedule an appointment.

Keys to managing your stress, guilt, anger and depression

Your life has changed at least for now. No, you can’t do what you used to do or what you usually do when you want to do it. But you are doing new things that will stretch you as a person.

The person who is being cared for has things to offer you as much as you have to offer them. Open yourself to making it a give and take relationship. You can’t do all the giving. Enjoy what you are being given. No one is the servant and no one is the master. You are both in this situation together                 doing the best you can with the knowledge and skills you have right now.

Ask for help from others. Plan ahead so people can help you. Don’t isolate yourself from family and friends. They will help if you ask them and let them.

People don’t change very much when they are ill. Happy people with sunny dispositions will likely stay that way as best they can. Highly critical people will remain highly critical. Don’t expect there to be sudden personality transformations.

“The greatest predictor of how much you get out of this time together is whether or not you believe home care is a wonderful opportunity for everyone to slow down their lives and share in a common, life-defining experience. If you believe that, you will be fine.” (Caring for Loved Ones at Home 6th ed. Harry van Bommel, Saint Elizabeth Health Care) Foundation)

Try this exercise

Think about the changes you may have experienced or expect to experience as your family member’s illness progresses.

  1. Some of the changes that have happened in my life as a result of my family member’s illness are… Jot down your thoughts now.
  2. Some of the changes that may happen in my life as my family member’s illness progresses are… Jot down your thoughts now.
  3. Some of my reactions/feelings that I have had to these changes include… Jot down your thoughts now.

To help with the above exercise, here are some “names” of feelings. We usually think of four basic emotions: sadness, anger, joy, and fear; however, there are many variations of these four emotions.

Other words associated with anger: furious, enraged, irate, annoyed, bitter, agitated, resentful, impatient, and irritated.

Other words associated with sadness: hopeless, depressed, down, heartbroken, sorry, unhappy, tired, uncomfortable, inadequate, disappointed, discouraged, regretful, guilty, troubled, and useless.

Other words associated with gladness: affectionate, calm, delighted, content, competent, comfortable, thrilled, relieved, pleased, satisfied, thankful, respected, happy, and hopeful.

Other words associated with afraid: apprehensive, terrified, scared, fearful, frightened, insecure, threatened, unsure, anxious, worried, helpless, uncomfortable, and vulnerable.

Feelings are neither good nor bad; nor right or wrong. They just are. There is no need to judge yourself negatively because you do or do not have a particular feeling.Things to remember about feelings:

  • Feelings may vary in intensity.
  • Feelings don’t last forever. No matter what you are feeling, eventually it will pass and another feeling will take its place.
  • When a strong feeling happens, you do not have to act on it. All you have to do is recognize it and feel it. Feelings are not harmful; sometimes the actions can be.
  • Everyone has a right to his/her feelings.
  • Everyone is responsible for his/her feelings.
  • Denying a feeling does not make it go away. Not talking about a feeling does not make it go away. Self-medicating with alcohol or drugs does not make a feeling go away.

Grounding techniques to ease intense feelings can be used whenever needed. Some techniques include:

  • Take a couple of deep breaths
  • Move your body: stretch, walk, run
  • Listen to music
  • Count slowly up to 10 or down from 10
  • Visually track a vertical line in the room from ceiling down to the floor while breathing out

Please write out your answer to the following:
My preferred strategy to ease my intense feelings is: Moving forward I should try:

 

1. Read this scenario.

Nargis is the sole caregiver for her 53 year old husband who has acute Leukemia and has been undergoing stem cell transplant. The couple has a 20 year old son who is attending university, Nargis’s sister lives in England and her father is living in a nursing home. Her husband has been discharged from hospital and Nargis must drive him to outpatient appointments, clean the house, prepare the meals, coordinate oxygen and medication treatments, and keep her husband company while he is recovering. Although she hasn’t complained very much, even when asked, she is struggling to sleep at night, has difficulty focusing on anything for very long including conversations and often breaks into tears when she finds herself alone in a room. Nargis needs help.

2. Think about the answers to these questions before checking the sample responses. 
  • If you were her neighbor or friend what could you do to help?
  • What could Nargis do to help herself?
  • What could her husband do?
  • What could their son do?

Sample answers

If you were her neighbor or friend what could you do to help? Be specific.
A neighbor or friend could help with picking up the groceries, running Nargis’s husband to an appointment, sitting with her husband while Nargis takes a break out of the house maybe even just once a week for two hours to go for a walk or a coffee or to attend a support group.

What could Nargis do to help herself?
Nargis could ask for help with specific tasks from her friends or neighbours, call her local hospice to see what support services exist, call her local church, mosque or synagogue to see if they could help in some specific ways, talk to her family physician about how she is feeling.

What could her husband do?
Nargis’s husband could make suggestions for friends or neighbours that he would feel comfortable spending some time with. He could read, listen to some books, start a legacy project, and watch television Facetime or Skype with their son on his own for a while each day to give his wife some time on her own.

What could their son do?
Their son could set a time to call each week to talk to Nargis and his dad. He could listen when her Mom calls just so her mom could vent a bit. He could help problem solve the latest concerns and issues just by talking and thinking them through with Nargis.

3. Visit the Canadian Cancer Society’s Caregiver website http://www.cancer.ca/en/cancer-information/cancer-journey/if-you-re-a-caregiver/?region=on
4. Now that you have looked at the website, are there any other things that you could add to your answers that you hadn’t thought of? Jot down your ideas now.
5. Access the website of your local community hospice for programs and services or go to the HPCO website to find out more. http://www.hpco.ca

 

Use these additional resources to learn more about the topic of caring for yourself as the caregiver.

Respite Services Near you 
http://www.respiteservices.com/

Help Guide for Caregivers
https://www.helpguide.org/articles/stress/caregiver-stress-and-burnout.htm

Caring for Someone with Alzheimer’s
http://www.alzheimer.ca/en/on/Living-with-dementia/Caring-for-someone/Self-care-for-the-caregiver

Caregiver Resources
http://healthydebate.ca/caregiver-resources

Challenges of Being a Caregiver

Search on these resources for additional assistance:

Ontario Community Support Association ​
OCSA is the voice of home and community support, representing hundreds of agencies, 25,000 staff, and 100,000 volunteers across Ontario.

​Home Care Ontario
Home Care Ontario is a member-based organization representing providers of quality home care services from across Ontario.

​Ontario Ministry of Labour – Family Caregiver Leave
Family caregiver leave is unpaid, job-protected leave of up to eight weeks per calendar year per specified family member.

Service Canada – Being a Caregiver
Service Canada provides some links to supports and other resources provided by the Federal Government.

Canada Revenue Agency (CRA) – Family Caregiver Tax Credit
For 2014 and subsequent years, if you have a dependent with an impairment in physical or mental functions, you may be eligible for the Family Caregiver Tax Credit. Visit the CRA website for more information.

The Caregiver Exchange
If you’re caring for a family member or friend who is facing the challenges of age, disability, illness, or injury,

CaregiverExchange.ca
can connect you with a wide range of information, services, and supports.

The Family Caregiver
The Family Caregiver website provides articles, resources, tips, and online forums for caregivers across Canada.

Caregiving Matters Caregiving Matters is an internet-based registered charity offering education and support to family caregivers.

Canadian Virtual Hospice The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers, and educators.

The Powerhouse Project The Powerhouse Project offers online resources and articles for Ontario’s young carers – youth and young adults, who are in a caregiving role for a family member needing assistance with their daily-lived experience.