November is National Family Caregiver Month
Being a caregiver for my husband Bryan, who was diagnosed with ALS in December 2020, is a journey filled with both challenges and beautiful moments. We live in Buckingham, PA, with our three children, where I navigate the daily complexities of providing care for Bryan. Bryan recently underwent tracheostomy surgery and is completely reliant on a ventilator. Although this condition makes him completely dependent on me for all his physical needs and all aspects of daily life, he is still an integral part of our family for decision making, guidance, and making memories. Over the last four years, we have learned a lot, through struggles, and trial and error, but as a caregiver, there are definitely areas that I found important to help me keep up my strength.
One of the most significant aspects of caregiving is recognizing the importance of a strong support system, not just for Bryan, but for myself as well. Having the hands-on support of family and friends helps me to balance my role as a caregiver with my responsibilities as a mother. Having their emotional support, as well, reminds me that I am not alone in this journey. Sometimes my gut reaction is to say that I don’t need help, but by accepting support from others, I am better equipped to be there physically and emotionally for Bryan and our kids.
The team at ALS United Mid-Atlantic has helped along the way. In addition to providing us with important resources for Bryan, their social workers and nurses give me advice and support so that I can be the kind of caregiver he needs.
I have also learned that taking care of myself is an essential part of being a caregiver. Simple activities like going for a walk, sharing a coffee with a friend, or even a few minutes to myself, help give me the energy I need to continue supporting Bryan and our children.
Doing things together, even if it’s just watching a Phillies game or playing an online card game, is also important for maintaining a strong connection, even when traditional forms of communication are no longer possible. One thing that is important to both of us is trying to venture out of the house together as much as possible. Although it takes a lot of planning and effort, getting out to movies, restaurants, events, or even to just sit in the sun on our patio, lifts our spirits and makes us feel like we are doing something normal. Bryan actually has plans to go back to the school where he was a teacher and read a book to a second-grade class. With his eye gaze communication device, he can pre-record the story, and I will sit next to him and turn the pages. He is looking forward to being back in the classroom and I know the kids will be delighted to hear from him.
Even under the best of circumstances, being a caregiver can be difficult and challenging. For me, it has helped me to find the little things to look forward to, either together or on my own to recharge. This allows me to be a more present and engaged partner for Bryan, enabling us to better face the challenges of this journey together.
Nobody knows what to expect when they hear that their loved one has been diagnosed with ALS. Even after four years, we still don’t know what will happen next. What we do know is ALS impacts the whole family and nobody has to face these challenges alone.