Caregivers are the unsung hero in families affected by ALS. It is not typically a job you signed up for!
However the love and care that you show means everything to your pALS. Tending to their needs, with care and compassion, listening to their needs and the touch of a hand mean everything. This is not a 9-5 job. The love and support Caregivers show is amazing.
There are several ways you can support your pALS during this time.
Everyday can be a challenge so we encourage you to take a step back and remember to smile. A rough day can change on a dime when you smile and share a funny moment or sweet memory with them.
Invite a family member over or schedule a zoom night with friends. I was told once that when you walk into a room while taking care of a loved one that you may be the ray of sunshine they have seen all day. Be the sunshine-give them a smile-let them know you are there!
Remember to take care of you. It is vitally important that Caregivers take time for themselves to recharge those batteries. Talk a walk, read a book, call a friend, soak in a tub. You will not be an effective Caregiver if you are not caring for yourself!
We at Susan Mast applaud all of our wonderful Caregivers!
What I love most about working for the Susan Mast ALS Foundation is the privilege of witnessing the various expressions of love within the ALS community.
The love from those living with ALS. The person with ALS (pALS) who shares her experiences with voice and message banking to encourage peers in support group to take action. The pALS who learns how to use an eye gaze speech device to say “I love you” to his family. The pALS who learns about her communication options proactively take care of her future self. The pALS who records readings of children’s books for his grandchildren.
The love of family and friends of pALS. The family members who reach out to learn about ways they can improve their own communication skills to ease the burden of communicating with speech impairment for their loved one with ALS. The spouses who overcome their unfamiliarity with technology to learn how to program a speech generating device with custom messages for their partners with ALS. The best friends who take charge of the voice recording and uploading of message banking phrases.
The love of the community coming together for our pALS. The ALS clinic speech language pathologists (SLPs) who reach out to us after witnessing a patient’s need for a speech generating device. The SLPs who connect with us to learn new skills to better support their patients residing in their facilities. The local and national ALS support organizations who share best practices and resources. The outpouring of participation and support from community businesses, organizations, and individuals during fundraising efforts to support what we do.
Finally, I love working with a team whose members each love what they do and commit themselves to do better for our patients, families, and community.
When asked about my job, I’m eager to share why I love this good, hard work. To keep my answer simple, I think it comes down to the sighing.
Sigh. This is a familiar sound for me. While it’s true that I have three teenagers at home, it’s not their sighs I’m talking about. In my role as support psychologist at the Susan Mast ALS Foundation, I am privileged to work with individuals living with ALS: patients, family members, and caregivers. All are grappling with the complexities of navigating this disease and its progression.
Back to the sighing. Sometimes I hear sighs of weariness. This may be a patient who is physically and mentally fatigued. During our interactions, patients share the difficulties of living with ALS and their accompanying exhaustion. Other times the weariness comes from a spouse of a patient who is tirelessly caring for their loved one. ALS can demand near constant attention from caregivers, leaving these vital loved ones drained. Caregivers have opportunities to share their struggles, frustration, and fatigue during our interactions. Providing a caring and supportive outlet for these thoughts and emotions is fulfilling.
I also hear sighing for another reason: feeling understood. In May, the Susan Mast ALS Foundation began offering Gather, our grief support group. Gather brings together individuals who’ve experienced loss of a loved one due to ALS. Members have opportunities to discuss various aspects of grief, receive support, and connect with others who understand ALS. After a time of sharing and discussion that month’s topic, these meetings typically wrap up with an informal discussion of various questions raised by group members. It often starts with “Have you guys ever...?” or “What about...?”. When the discussion winds down, I often hear a deep sigh and a comment like “I thought it was just me”. Being understood is powerful and healing.
Finally, I hear sighs of validation. While supporting our families, I listen to people struggle at times to verbalize what they are experiencing: “ALS is just so...well...so...” The list of possible descriptors here is lengthy but often includes: relentless, progressive, or demanding. In these moments, I have the opportunity to help them process their experiences and describe what they are going through. As we do this, I often hear that sigh of validation followed by a whispered “yes” or an exclamation of “that’s it!”. They’ve been seen and heard; their thoughts and feelings have been affirmed.