“For my hobbies and my freelancing, this will mean I have to be more flexible and realistic with my available time.” T.R. Knight
Feels weird quoting myself in my own blog, but this is something on my heart currently that I want to share. This is a significant part of my life and I want to be transparent about it, for it might help others struggling with similar challenges.
Back in March, I made that quote when I wrote about the significant Ch-ch-ch-ch-changes coming in my life, and I plan to respond to other elements of that post in the near future. But at this moment, I want to speak from the heart about being a caregiver and gaming. In March two years ago, I wrote a post about Freelancing AND Caregiving. Back then I was more prophetic than I realized “When my daughters head off to college in a couple years, this will mean even more responsibilities for me.”
With my daughters heading off to college, that has meant Angie and I are now mostly empty-nesters. Because they are attending college nearby, we see them occasionally, but they are not living at home and assisting with the caregiving (my wife has Multiple Sclerosis). Since they left, I have been finding a new rhythm at home with my household duties, my caregiver duties, my family responsibilities, my volunteering, and … finding some personal time for relaxation, personal projects, and hobbies. We were beginning to find that new rhythm when a wrinkle was added that I have not mentioned previously.
In the midst of a new position, daughters off to college, empty nesting, and taking on more caregiver responsibilities, my wife has begun a new medicine for Multiple Sclerosis. I don’t think Angie and I really had time to let the significance of that sink in with all the changes and busyness in our life. Now that it is here and there are complications, things have to be re-evaluated. Angie had to discontinue her previous mediation (Tysabri) for two months before she could begin her new medication (Ocrevus). During the time between no longer taking Tysabri and waiting for this new medication to take effect, Angie’s Multiple Sclerosis symptoms have significantly increased, which deteriorated her mobility, strength, balance, and fine motor control. A steroid treatment slowed this symptoms for a short while, but they have now returned with an overwhelming surge. This past weekend and this week have been very physically and emotionally draining. Some of the most difficult since we began this journey with MS. I have needed to work from home partially this week (which is a blessing I can do that when necessary) and cancel my weekly game night, as well as set aside my work on my upcoming RPG campaign. I am focused on supporting my wife through this, both of us hopeful the new medication will begin to have a positive effect.
Why am I sharing this with you through the blog? Because I have come to realize how much gaming and being with my gaming group have been such a respite for me as a caregiver. My guess is that many of you have similar feelings, but not quite the same. When game night gets canceled because someone is ill or has a conflict, you are disappointed, frustrated, and perhaps a bit emotional. But, when you are a caregiver like I am, having to cancel a game night impacts you viscerally. Until this difficult week, I had not truly noticed or acknowledged that connection. Caregivers are heavily encouraged by doctors and other professionals to have their personal time away from their caregiving duties to rejuvenate themselves to be stronger mentally and emotionally for the person they care for. Work and projects give me good breaks from caregiving, but I have found gaming is my true respite. When I sent the email to my gaming group I was putting our game night on hold until Angie and I can work through these current challenges, I instantly felt a pang in my stomach and deflated emotionally more than I already was. Oh, I know it was the right decision to make as caregiver and husband, but it hurt more than I expected. Gaming is more than just a hobby to me. My game group are more than just friends who hang out. Gaming and my game group are a significant respite for me, that give rejuvenate me to be a stronger and better caregiver for my wife.
I share this for others out there who may not have been able to put this into words themselves and need someone to talk to. Whether you are parent caring for a child with special needs, you are an adult taking care of aging parents, or you are a caregiver for a spouse with a chronic illness, I want you to know I empathize with you and and want to be here for you. If you need to chat about your caregiving, how gaming gives you respite, or just need a listening ear, please reach out. We can talk over email (tr “at” freelanceknight.com), we can set up a time to Skype, or perhaps meet face-to-face if you are nearby.
I also share this for those game groups out there with a caregiver among your members. Know that your patience and willingness to work around the caregiver’s schedule and flexibility to manage last-minute changes and cancellations is appreciated so much more than you realize. That you stick with us even though we require cancelations and frustrate your plans is a blessing and a gift. Thanks to all of you gamers out there who care for more than just the game, but care personally for the members of your gaming group and support those who are caregivers.