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  • 4 January 2022
  • 2 years

Caring for a Loved One with a Disability

Michelle Belitzky

MSW

Millions of people worldwide are caregivers for a family member or friend with a disability. Typically, the definition of a caregiver is someone providing regular care to a friend or family member with a physical disability, intellectual disability, or mental health difficulty, informally, or without being paid for this role.

While providing care and assistance to a loved one can be fulfilling in many ways, there are also many challenges that caregivers face. When these challenges are not met with the proper solutions, caregivers can easily burn out. Caregivers have frequently reported the following as challenges that come with their caregiver role:

Losing their sense of self, isolation, balancing their personal and/or work life with their caregiving role, feelings of guilt, constant worry, loss of social connections, and financial concerns. These can lead to mental health difficulties, such as anxiety, depression, and excessive stress. Caregivers can also experience physical health difficulties if providing physical care to their loved one, and from lack of healthy lifestyle habits (poor sleep, diet, and little exercise), as they often prioritize the wellbeing of those they are caring for before their own wellbeing.

Focusing so much time and energy on caregiving can cause the caregiver to put their own needs aside, until they burn out and are no longer able to ignore the symptoms. Below are some strategies caregivers can put in place to mitigate the effects of these challenges and avoid burning out:

1. Put Your Mask on First

If you’ve ever traveled by plane, you’ve likely heard this phrase as part of the safety instructions “Put your own mask on first before helping others. “Why do we think that is? If you don’t take care of yourself first in supplying yourself with oxygen, it will be much more difficult to assist others. We can apply this same mentality to caregiving. If you are not taking care of your own wellbeing, it stands to reason that it will be more difficult to take care of others. This is why self-care is an essential piece of the caregiver’s puzzle. Self-care means providing adequate attention to your physical and psychological wellness. Since burnout is caused by depletion, self-care is the antidote through practicing physical and mental activities that fill you up, bring you joy, and boost your energy. Engaging in self-care has been proven to reduce burnout and associated symptoms. Practicing self-care can help ensure caregivers feel well balanced themselves and have a means of disconnecting from their caregiver role, to protect their sense of identity. This enables caregivers to have energy left over to continue caring for their loved ones. It may seem difficult to find the time to implement self-care activities, but even starting with a few minutes can make a big difference. Being mindful and intentional with self-care is more important than the amount of time spent on it, although the more time you can dedicate to your self-care the better. Finding the right self-care routine for you can take some trial and error. It can be helpful to start by checking in with yourself about how you’re currently doing physically and mentally; make a list of what you’re already doing for yourself, and some ideas on what can be added on. Journaling, taking a walk or doing a 20-minute cardio routine, listening to music, or engaging in mindfulness exercises are all things that can be done in a short amount of time but can serve as significant energy boosters. Reconnecting with old hobbies or finding new ones can serve as self-care while helping foster a sense of identity outside the caregiving role. Mindfulness is particularly helpful to combat feelings of worry and guilt by focusing on the here and now instead. Setting boundaries is another way to ensure you are caring for yourself. Think about what your limits are as a caregiver and what boundary feels comfortable for you. Give yourself breaks and seek support as needed to honor that boundary. Seeking support from physical and mental health professionals can also be implemented into a self-care routine to help caregivers process and seek solutions to challenges. Check in with yourself regularly to re-evaluate and ensure you’re not putting your own needs aside. Engaging in regular self-care will help to strike the balance between personal needs, the needs of others, and any other responsibilities caregivers may have.

2. It Takes a Village

Caregivers often feel as though they have to manage everything on their own. Building a support network, for both the caregiver and those they are caring for, is another important piece of the caregiver’s puzzle. While seeking support can sometimes lead to feelings of inadequacy, it’s important to know that humans are not meant to be alone. There is strength in building community around you. The same way caregivers provide support to their loved ones, they deserve to receive support as well. There are multiple ways of building a support network. Keeping social contacts with friends and family, even if to just have someone over for a cup of coffee is important in maintaining your sense of self while being a caregiver. If you have a natural support network of friends and family, consider if there is anyone who can help with some of the caregiving duties to give you a break (during which time you can engage in self-care!). Caregiver support groups are reported to be an essential and effective means of support for many caregivers. Taking part in a support group can provide space for caregivers to vent their challenges and rejoice in positives with people who can understand what they are going through. Support groups can also be a venue to learn about coping tools, caregiving strategies and local resources to assist with the caregiving role. Having a sense of community and belonging is a crucial part of a human’s life satisfaction, and vital to mental and physical health, especially for those facing difficulties. In addition to support groups, joining a local group to practice a hobby or to exercise, or attending spiritual events can reduce isolation and widen your support network, while also being part of your self-care routine. While a caregiver can join support groups or other social groups to gain this sense of community and belonging, it is just as important for the person they are caring for. Many communities have support, social, or skill building groups for people with disabilities or mental health issues, which can help them establish their own sense of belonging and create a support network outside of their caregiver. Many countries also have public or private assistance programs for people with disabilities and their caregivers that offer anything from social groups to caregiving to financial assistance. At times these systems can be difficult to navigate; if this is the case, you can contact a physical or mental health professional, or local community organization to assist you in locating what is available to you. If finances are a concern, consider speaking with local disability resource providers or seeking advice from a financial planner to get information about financial programs you may be entitled to, or assist with creating a plan or budget that works for you. Friends, family, community members, health care professionals—these are all people who can make up your village.

3. Communication Is Key

Now that we know about self-care and building support networks, it’s important to know how to communicate with yourself and others to maintain these systems. How is it best to check in with yourself? Do you prefer self-talk, journaling, setting a reminder, making checklists, speaking to a friend or mental health professional? Do you feel your needs or the needs of the person you’re caring for aren’t being met? Communicate this with any relevant involved professionals, friends, or family members so you can work together towards meeting those needs. If you’re worried about work-life balance, speak with your superior to see what solutions or accommodations are possible. Communicating, if possible, with the person you are caring for can also help you to establish roles, responsibilities, and boundaries in the relationship. If you are not sure how to communicate your needs effectively, there are many strategies available to learn effective communication, such as assertive communication, using I statements, reflections, and active listening. You can seek assistance from a mental health professional to help learn which communication strategies may work best for you.

Being a caregiver can involve many challenges, but remember there is strength in caring for yourself, and there is strength in building your support network. For assistance in implementing any of the strategies mentioned or locating resources for yourself or a loved one, you can contact your Employee Assistance Program.

 

References

American Psychological Association. (2020, June). Common caregiving problems. American Psychological Association. Retrieved October 22, 2021, from https://www.apa.org/pi/about/publications/caregivers/practice-settings/common-problems.

American Senior Communities. (2015, October 14). The challenges facing a family caregiver: ASC blog. ASC. Retrieved October 22, 2021, from https://www.asccare.com/the-challenges-facing-a-family-caregiver/.

Boardman, S. (2020, February 4). The importance of developing a sense of belonging. Life Skills Group. Retrieved October 22, 2021, from https://www.lifeskillsgroup.com.au/blog/belonging#:~:text=A%20sense%20of%20belonging%20is,sense%20of%20purpose%20and%20meaning.&text=Humans%20have%20an%20instinctive%20need,an%20increased%20level%20of%20survival.

Chaney, A. (2018, November 14). Challenges faced by caregivers. Griswold Home Care. Retrieved October 22, 2021, from https://www.griswoldhomecare.com/blog/2018/november/challenges-faced-by-caregivers/.

Doran, J. (2014, April). The unspoken truth about self-care. American Psychological Association. Retrieved October 22, 2021, from https://www.apa.org/gradpsych/2014/04/corner.

eFamilyCare. (2019, September 5). 5 challenges caregivers face: Efamilycare. Advice For Caregivers. Retrieved October 22, 2021, from https://efamilycare.com/articles/caregiver-challenges/5-challenges-caregivers-face/.

Family Caregivers of British Columbia. (2020, June 29). Part 2: How to set boundaries as a caregiver. Family Caregivers BC. Retrieved October 22, 2021, from https://www.familycaregiversbc.ca/community-resources/part-2-boundaries/.

FirstLight Home Care. (2019, November 7). The biggest challenges facing family caregivers. FirstLight Home Care. Retrieved October 22, 2021, from https://www.firstlighthomecare.com/blog/2019/11/07/the-biggest-challenges-facing-family-caregivers/.

Gomez, A. (2020, May 25). Humans ‘not meant to be alone’: Many Americans haven’t seen or touched another person in 3 months because of COVID-19. The Register Guard. Retrieved October 22, 2021, from https://www.registerguard.com/zz/news/20200525/humans-not-meant-to-be-alone-many-americans-havent-seen-or-touched-another-person-in-3-months-because-of-covid-19.

Graves, G. (2019, November 21). 5 common challenges care-givers face, and how to handle them. Health.com. Retrieved October 22, 2021, from https://www.health.com/mind-body/caregiver-self-care.

International Alliance of Carer Organizations. (2021, June). Global State of Caring. https://internationalcarers.org/. Retrieved October 22, 2021, from https://internationalcarers.org/wp-content/uploads/sites/26/2021/07/IACO-Global-State-of-Caring-July-13.pdf.

Monroe, C., Loresto, F., Horton-Deutsch, S., Kleiner, C., Eron, K., Varney, R., & Grimm, S. (2020). The value of intentional self-care practices: The effects of mindfulness on improving job satisfaction, teamwork, and workplace environments. Archives of Psychiatric Nursing35(2), 189–194. https://doi.org/10.1016/j.apnu.2020.10.003

Own Your Health. (2017, October 4). 3 challenges caregivers face – and how to conquer them. Own Your Health. Retrieved October 22, 2021, from https://www.ownyourhealthwa.org/caring-for-others/3-challenges-caregivers-face-and-how-to-conquer-them/.

Therapist Aid LLC. (2016, April 29). Communication techniques (guide). Therapist Aid. Retrieved October 22, 2021, from https://www.therapistaid.com/therapy-guide/communication-techniques.

Wei, H. (2020). The power of self-care: An ENERGY model to combat clinician burnout. American Nurse Journal15(10), 28–31.

Workplace Options helps employees balance their work, family, and personal needs to become healthier, happier, and more productive, both personally and professionally. The company’s world-class employee support, effectiveness, and wellbeing services provide information, resources, referrals, and consultation on a variety of issues ranging from dependent care and stress management to clinical services and wellness programs. To learn more visit www.workplaceoptions.com. 

Disclaimer: This document is intended for general information only. It does not provide the reader with specific direction, advice, or recommendations. You may wish to contact an appropriate professional for questions concerning your particular situation.

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