Understanding How Being a Caregiver Affects You
Download a PDF version of this topic… HPCO - Topic 3
The Indigenous Wellness Framework identifies that emotional wellness is facilitated through relationships, having an attitude of living life to the fullest, and having connections to family and community. Emotional wellness therefore creates belonging.
(National Native Addictions Partnership Foundation, Honouring Our Strengths: Indigenous Culture as Intervention in Addictions Treatment Project – University of Saskatchewan. (2014). reference Guide Bothwell, Ontario: Author. Canadian Institute of Health Research, Funding Reference Number AHI-120535.)
When a member of the community finds out that one of their members is seriously ill, they will have a wide variety of individual and community responses, including: shock, denial, fear, anger, and sadness. It takes time for the community to adjust to the new reality of living with a member who is seriously ill. People may find it helpful to talk with others about their feelings, and join together to support each other. As the person continues their journey, both the community and the person who is seriously ill may experience reactions to a variety of different losses along the way.
They may begin to accept the reality of death and what it might mean for their community. There may be frustrations around wanting to do more to help or fix an unfixable situation. They may feel sadness and anxiety. Some community members may become very angry or some may hide their feelings. Others may feel guilty because they feel some relief when the person dies. These are all normal reactions for people who are part of a community that is caring for a person who is seriously ill.
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)
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
- 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 )
- Laugh and don’t feel guilty (Laughter breaks tension and is a wonderful stress )
- Write/ sketch in a journal about how you are feeling
- Practice deep breathing and relaxation techniques
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.
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: On a scrap piece of paer write down the numbers 1-18. Then answer yes or No to each question.
- Had trouble keeping my mind on what I was doing…
- Felt that I couldn’t leave the person that I am caring for alone…
- Had difficulty making decisions…
- Felt completely overwhelmed…
- Felt overcommitted in terms of how much I am needed…
- Felt lonely…
- Been upset that the person that I am caring for has changed so much from his/her former self…
- Felt a loss of privacy and/or personal time…
- Been edgy or irritable…
- Had sleep disturbed because of caring for this person…
- Had crying spell(s)…
- Felt strained between work and family responsibilities…
- Had back pain…
- Felt ill (headaches, stomach problems, or common cold)
- Been dissatisfied with the support my family has given me…
- Found that the person that I am caring for has a living situation that is inconvenient or a barrier to care…
- On a scale of 1 to 10, with 1 being ‘not stressful’ to 10 being ‘extremely stressful, please rate your current level of stress:
- 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. 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.
Try this exercise
Think about the changes you may have experienced or expect to experience as your family member’s illness progresses. Record your thoughts now.
- Some of the changes that have happened in my life as a result of my family member’s illness are:
- Some of the changes that may happen in my life as my family member’s illness progresses are:
- Some of my reactions/feelings that I have had to these changes include:
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.
Things to remember about feelings:
- Feelings are neither good nor bad; nor right or They just are. There is no need to judge yourself negatively because you do or do not have a particular feeling.
- Feelings may vary in intensity.
- Feelings don’t last 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 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 answers to the following:
My preferred strategy to ease my intense feelings is:
Moving forward I should try:
1. Read this scenario.
Tina is the sole caregiver for her 53 year old husband who has acute Leukemia and has been undergoing stem cell transplant. The couple’s son is living away. her husband has been discharged from hospital and Tina must take him to outpatient appointments, clean the house, prepare the meals, coordinate oxygen and medication treatments, and keep her husband company while he is convalescing. 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. Tina needs help.
2. Think about your answers to these questions before reading the sample responses.
If you were her neighbor or friend what could you do to help? Be specific.
What could Tina 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 neighbour or friend could help with picking up the groceries, running Tina’s husband to an appointment, sitting with her husband while Tina takes a break out of the house.
What could Tina do to help herself?
Tina could ask for help with specific tasks from her friends or neighbours and talk to her family physician about how she is feeling.
What could her husband do?
Tina’s husband could make suggestions for friends or neighbours that he would feel comfortable spending some time with. He could read, listen to some music, start a legacy project.
What could their son do?
Their son could set a time to call each week to talk to Tina and his dad. he could listen when his Mom calls just so his mom could vent a bit. He could help think through the latest concerns and issues just by talking and thinking them through with Tina.
3. Visit the Canadian Cancer Society’s Caregiver website 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?
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
Caring for someone with a terminal illness: caring for the caregiver
http://eolfn.lakeheadu.ca/wp-content/uploads/2013/01/Caring-for-Someone-with-a-Terminal-Illness-Care-for-the-Caregiver-Revised-Nov-FINALjknov10.pdf