AKALAKA was created to provide the best support and resources to those who need and give the greatest care. We focus on serving adults with intellectual and developmental disabilities and their siblings. Sibling care partners may spend lifetimes giving and needing help with activities of daily living (ADLs) and/or instrumental activities of daily living (IADLs). The long-term physical and emotional stress from these daily activities may strain the sibling relationship and other joys of living if one’s mental health is not defended with care.

Before we get into this article, we want you to know that there are hotlines created to respond to you if you are in crisis. Please reach out to these frontline crisis responders if you need urgent or emergent help:

United States

  • Emergency Services – 911
  • Text HOME to 741741 to reach a volunteer Crisis Counselor
  • National Suicide Prevention Lifeline – 1-800-273-8255

Canada

  • Canada Suicide Prevention Service (24/7) – 1-833-456-4566
  • Hope for Wellness Help Line – 1-855-242-3310
  • ConnexOntario (resources) – 1-866-531-2600

A primary line of defense for mental health can be self-care. ADLs include care tasks necessary for basic survival: walking (or ambulating), feeding, dressing and grooming, toileting, bathing, transferring (moving from one body position to another). IADLs are care tasks that require organizational and complex thinking skills: managing finances (paying bills and managing financial assets), managing transportation (driving), shopping and meal preparation, housecleaning, managing communication (email, phone), managing medications.

Physical stress from needing to give or receive assistance on ADLs or IADLs can result in disturbed sleep, fatigue despite adequate rest, headaches, and a weakened immune system. Emotional stress from daily activities can result in depression, anxiety, irritability, poor concentration, loss of interest in personal needs or desires, increased resentment toward care partners and other family and friends, loss of satisfaction of being a care partner, helplessness, hopelessness, and isolation.

Self-care can be defined as “the ability to care for oneself through awareness, self-control, and self-reliance in order to achieve, maintain, or promote optimal health and well-being.” (Martínez et al. 2021)

  • Awareness is seen as knowledge or perception of our needs.
  • Self-control involves regulating ourselves and emotions. Self-discipline is a part of this category.
  • Self-reliance is the ability to make our own decisions, to depend on ourselves. An example is, choosing to start a healthy habit and adhering to the plan.

How can we practice self-care?

Exercise. According to Dr. Mike Evans MD, exercise is the “single best thing we can do our health.” Evans summarizes foundational research in this video to highlight what 30 minutes of walking or aerobic exercise can do for you, all through white board animations.

The recommended minimum amount of physical activity is 150 minutes/week of moderate intensity exercise. Moderate intensity means that while you are active, you have enough breath to say a short sentence, but not enough to sing.

Nutrition. Today’s food guide uses a healthy plate method - a visual representation of food proportions. One half of the plate is fruits and vegetables of many colours (think of the rainbow). One quarter is protein foods. The remaining quarter is whole grain foods.

Sleep. Sleep hygiene can aid in a good night’s rest. The key is to build a routine before bedtime. Activities should include removing electronic devices from the bedroom or keeping them away from arm’s length, avoiding large meals / caffeine / alcohol, and making sure the bedroom is dark / quiet / relaxing. Going to bed at the same time every night and getting up at the same time every morning helps with consistency, which programs into the bedtime routine.

Therapy. Yoga, mindfulness, meditation and journaling can be used to alleviate care partner stress. Professional counselling and therapy can help build adequate skills.

Cognitive behaviour therapy provides the skills for clients to challenge their negative thoughts and maladaptive behaviours. The goal is to develop a balanced perspective on the events that occur around us.

Interpersonal therapy enables clients to self-evaluate the challenges that prevent them from communicating their needs with others. The goal is to improve communication skills, so that their intentions are understood and their needs are met.

Psychodynamic therapy gives clients the space to uncover unconscious feelings that negatively influence their mood and attitude. The goal is to recognize, understand and manage unconscious feelings. This therapy has been found to be less effective than CBT and interpersonal therapy in managing care partner stress.

No one, with or without disabilities and caregiving responsibilities, should do care completely alone. Mental health can be more sustainably defended when self-care is supplemented early and often with the second and third lines of defense– home & community care and professional specialist care.

At AKALAKA, we’re working to enable greater access to home & community care, starting by assisting members who have a Medicaid Home & Community-Based Services (HCBS) waiver – for example, the “Innovations Waiver” in North Carolina – with navigating and receiving local and virtual long-term support to increase the independence and reduce the workload of individuals and families. Join us to get the resources and support you need today: AKALAKA.org/join

AKALAKA is also working to connect members to professional specialists, starting in regions where members make requests. Join us for assistance with discovering and paying for these specialists.

AKALAKA welcomes all siblings to join us on Saturday, May 21, 2022 at 6:00pm ET / 3:00pm PT for our Seminar with Adam Snir, AMFT, MS, MA, a sibling and therapist:

Mind Over Matter: Professional Mental Health Support for Adult Siblings

This is an informative conversation about Mental Health Support for Adult Siblings, why it’s important for us to have professionals like Adam, but also why it’s important that we also maintain personal relationships like we’re building in AKALAKA for the lifelong journey. PLUS: Eligible siblings get special discounts on 1:1 and peer support group sessions facilitated by Adam!

Click here to join, get your ticket to the event and all our other member benefits.

Unable to join but want to stay in touch and receive on-demand episodes of this and our other seminars for your own self-paced replays?

Connect with the network of support and resources for you to confidently handle life together at AKALAKA.org

Martínez, N., Connelly, C. D., Pérez, A., & Calero, P. (2021). Self-care: A concept analysis. International journal of nursing sciences, 8(4), 418–425. https://doi.org/10.1016/j.ijnss.2021.08.007

https://food-guide.canada.ca/en/tips-for-healthy-eating/make-healthy-meals-with-the-eat-well-plate/

https://www.cdc.gov/sleep/about_sleep/sleep_hygiene.html

https://cpa.ca/psychology-works-fact-sheet-caregiver-stress/