Caring for a Parent with ALS

As adults, the relationship we have with our parents can be one of the most complex yet important relationship in our lives. For many, parents provide a sense of stability well into adulthood. When a parent is diagnosed with ALS, you face the painful reality of losing your lifelong cheerleader earlier than you expected. On top of this grief lies the decision of how to best care for your parent as their ALS progresses. Attempting to cope with all of this while seeing to existing demands in your life has the power to turn your world upside-down. Here are some tips on how to cope when a parent has ALS.

Managing responsibilities

The prospect of caring for a parent with ALS while also managing your own life can seem overwhelming. There are so many things to consider, like where your parent will live when they are unable to live independently or how much time you can take off of work. To manage, consider sitting down with your parent and other family members early on to create a realistic plan to prepare for what might lie ahead. Check out this Prepare to Care guide from the AARP to help get you started.

  • Check out this Prepare to Care guide from the AARP to help get you started. 
  • This Care Binder from Caregiving.com is a critical organizing tool for caregivers to help them save time and reduce stress. The binder includes how-to instructions, best practices and 20+ customizable templates.
  • Lotsa Helping Hands is an online platform that can help you coordinate with friends and family to provide support, meals and more.

4 tips to begin the process of managing responsibilities

  • Be sure to ask and listen to your mom or dad’s values for their care, and allow them to drive any decision-making. Use this worksheet on identifying your values to help guide the conversation. 
  • Ask your mom or dad how they’d like you to be involved in their care. Losing a sense of independence gradually or suddenly can be one of the hardest mental and emotional challenges. Be sure to give your parent as much control as possible over their choices in how to live their life. 
  • Consider what is realistic for you. Identifying what your limitations may be can help you come up with a plan that is sustainable for the long-term.
  • Think of the people in your life who can pitch in to help when needed, whether it’s a spouse, close friends, neighbors or other relatives. Even if they can’t help provide direct care for your parent, they may be able to help with other tasks like childcare or meal preparation. Learn more about how to rally your community.

A change in dynamics

Witnessing a parent’s decline due to ALS can be heartbreaking. You may not have previously seen your parents so vulnerable. The dynamics of your relationship are bound to change as your mom or dad come to rely more heavily on you for support. This won’t always be easy and it may take time for you both to adjust to these changes. Being mindful of your experiences and encouraging honest communication can help ease this transition and strengthen your relationship. It’s normal to feel scared, sad or a sense of grief. Remember, there will be difficult moments, so try to be patient and extend grace when necessary, whether to your parent or yourself.

Coping as a caregiver

Caring for someone with ALS is not easy and there are many ways you might cope as a caregiver. Some people may feel the desire to engage in new activities such as ALS advocacy, while others may be too busy juggling numerous responsibilities to get through their day. There might be times when it feels too painful to witness your loved one’s decline and other times you can’t bear to be apart from them. You may even find yourself trying to control things in other areas of your life in order to make up for what you can’t control with your loved one’s ALS. Over time, your coping will likely change as you adapt into your role as a caregiver or as your loved one’s needs change. It’s okay if you feel hopeful one week and as though you’re barely making it through the next. Sometimes the best thing to do is take things one day at a time and remind yourself you’re doing your best.

Additional caregiving resources

  • Caregiver Education Course 
    • The ALS Association’s Caregiver Education Course addresses the physical and emotional impacts of ALS; strategies for care and resources to guide care decisions; the importance of safety and self-care for both the person living with ALS and the caregiver; and more.
  • Ask Me Anything ALS – Caring for a Parent Event Recording 
    • Description: The Ask Me Anything ALS – Caring for a Parent panel discussed the nuances of caring for a parent living with ALS including decision making, communication and transparency, finding support and valuable resources, and more.
  • Ways to Offer Help 
    • Description: This Instagram post from I AM ALS outlines ways that your friends and family can help you with care planning, household chores, childcare, emotional support and more. 
  • Home Care for ALS
    • Description: This article provides an overview of the role of professional caregivers, and guidance when looking for one.

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