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Living in the Moment-Life with ALS

Living in the Moment and Making the Most of Life with ALS

By Michelle Hammond-Susten, LCSW, LLC

How do people live in the moment and make the most of life when diagnosed with a terminal illness? As the Emory ALS Clinic Social Worker these are issues that I often assist with exploring. Upon initial diagnosis of ALS, families are often overwhelmed by the immediate emotions one might expect; shock, sadness, anxiety and confusion. There is a whirlwind period that follows, trying to grasp the diagnosis and how it will impact their day to day lives and future. Once some time has passed, and the dust settles a bit, there is an opportunity to develop a new normal and embrace the present. Some strategies that may be helpful include:

-          Take time to reevaluate your life.  Acknowledge your accomplishments and things that you would still like to do. Take stock of the things that mean the most in your life and focus on them. Illness has a way of forcing us to shift our perspective. Rarely do I ever hear “I should have spent more time doing housework or more hours at the office.”  People most often identify quality of life and meaning with time spent with loved ones, participating in things that they enjoy or things that have brought them a sense of purpose.

-          Think outside of the box.  Continue doing what you enjoy for as long as possible. This can take some creativity. For example, if you love to cook and find yourself losing hand mobility, enlist someone to teach and/or create a family cookbook. If you love to travel, do so with adjustments/accessible resources. If you are no longer able to travel, bring the places to you through pictures, youtube videos, etc.  Explore new interests.

-          Be flexible and expect change. Your new normal will shift throughout the disease process. Being able to adjust to these changes and continue to be creative. 

-          Tackle areas of regret. If you have relationships that you would like to mend or things that you would like to address with people, don’t wait. Find ways to make peace with yourself and others when needed.

-          Honor and acknowledge your feelings- but don’t get stuck. It is to be expected to experience feelings, such as anger and sadness at different times, but if you start to notice having more bad days than good, it is worth considering discussing with your doctor or finding avenues to express your feelings. Taking a daily inventory of how you are feeling emotionally can be helpful.

-          Knowledge is power. Know your resources and where to find them. Attend ALS Clinic as recommended by your physician. Connect with ALSA and MDA.  These organizations offer strategies, skills and services to help you maintain your independence as much as possible throughout the disease process.

-          Don’t be afraid to accept help from those who care about you.  That goes for caregivers as well. It is okay to ask for help. Not only does it allow time for you to focus your energy on what is important, it also allows others in your life to be an active participant throughout your journey.

-          Let go of the “why?” and instead focus on “what now?”  While it is a perfectly normal response to ask this question, rarely are we afforded the answers and it can keep you from moving forward. When we begin to reframe the question to what we can do in the present to live a fuller life, it allows for a sense of hope and opportunity.

-          Surround yourself with things you love. Make your space representative of the things that mean the most to you. Use your senses as your guide, some ideas include: visual (pictures, art, memorabilia, etc.), olfactory (candles, oils, etc.),and auditory (music, books on tape, sounds of nature, etc.) senses.

-          Connect with a deeper sense of something greater than self. If religion or spirituality is important to you or if you find yourself questioning your faith, reach out to a spiritual leader in your religious community or someone who can help you explore or reconnect with your beliefs. Feeling a part of something bigger than yourself, or leaving a legacy can feel like an important way to find meaning/purpose. Get involved in the ALS community, volunteer to mentor another ALS family, use your families story as a way to inspire or provide hope for others.

-          Find relaxation and coping strategies that help you stay in the present. There are many relaxation tools that you can put into place that can assist with staying focused on the present. Breathing exercises, guided imagery, meditation and mindfulness exercises are a few tools that can be easy to incorporate and can be found on apps for smart phones and assistive technology devices. Practice, practice, practice and find what works for you.

It is possible with a terminal illness to continue to live a life full of purpose and meaning. This has certainly been the case with our ALS families, who have been some of the most resilient, creative and hopeful group of people I have had the pleasure to work with. Continue to consider ways that you can live in the moment in your own lives and keep sharing your experiences and successes with each other.