In case you missed it, we recently launched a new social media campaign, Humans of Caregiving—inspired by the incredible stories collected and shared by @humansofny.
To that end, we’ve been (and are currently) collecting stories and photos from YOU, our followers—caregivers who have been generous enough to share a peek into the human side of their caregiving journey.
Today’s post features three tremendously resilient and committed spouses who are living out their vows of “in sickness and in health, for better or for worse” in enormously difficult ways.
Meet Brian, who cares for his wife
Follow him: @bsmith_nd
Brian is currently the primary caregiver for his wife who has primary progressive multiple sclerosis (MS) and requires 24/7 care. Diagnosed with MS about 14 years ago, she has developed serious physical disabilities requiring max assist with all ADLs about 10 years ago, and developed cognitive impairment about 3 years ago.
Caregiving has changed me for the better, as I am more appreciative of what I have, I tend to make the most of my daily life, and I’ve learned how important it is to express what other people mean to me. I need someone to be with my wife to leave the home, so I’m totally dependent upon aides or family to come and go.
I have to be incredibly efficient with my time outside the house, so it feels like I’m always living by a clock. My biggest worry is how long I can keep going as a caregiver, especially since my wife’s needs can feel endless and occur around the clock. However, caregiving has made me very resourceful and I have confidence that I will always be able to make a plan to handle the next challenge.
I decided to join a CrossFit gym to get into better physical shape a few years ago and it not only provides an outlet for my stress, emotions, and competitive nature, but it also provides a supportive community of people.
I normally don’t get more than a few nights off a year, but if I had an extended break, I would love to travel.
Meet Allison, who cares for her husband
Follow her: @negspacelife
Allison is a caregiver for her 41-year-old husband who was diagnosed with Fanconi Anemia nine years ago. He has since undergone a bone marrow transplant, as well as radiation, chemo, and dozens of surgeries to remove and treat cancer of the tongue, throat, gums, bladder, and skin.
The hardest part of being a caregiver is the unknown. He can wake up feeling fine in the morning and be admitted to the hospital by the end of the day. Cancers continue to pop up almost every time he is checked.
He has passed the median age of death for his disease and we have no idea how long that will continue. Both the immediate and long-term future are completely unknown and unpredictable. I worry that there are things I could or should be doing to research more, connect with more specialists, keep him from germs, etc., etc., etc.,
The photo says it best: it’s terrible AND we keep going. I want people to know that even when I’m smiling and seemingly all put together, it’s still really hard and that when they wonder how I do it, that there is really no other option but to just keep going.
I try to write honestly and openly about the reality of my caregiving life at my blog, The Negative Space Life. Writing is both therapeutic for me and a way to connect with and support other caregivers by modeling that it’s okay to admit that caregiving is HARD. If I got the chance to do something just for me, I’d go to a cabin or spa or retreat space, where I could relax, write, read, and nap.
Meet Justin, who cares for his wife
Follow him: @bajema
Justin is a caregiver of seven years for his wife Sarah who has fibromyalgia, POTS, and chronic migraine.
It’s really hard that my life outside of our home can rarely include Sarah, because it’s not often she has the energy to leave the house. I often feel like we’re just steps away from our lives falling into chaos, and I worry about staying on top of everything (Sarah’s health, housework, medical appointments, errands, my job, finances, my health, etc. ) and keeping our heads above water.
Caregiving doesn’t have to be a thing that no one talks about; while it’s not always easy, I’m more than willing to talk about it with anyone who is genuinely interested.
The things I do for myself have shifted over the years, (fly fishing, fly tying, woodworking, spoon carving,) but I’ve always tried to maintain a hobby that I can escape into and give my mind something different to focus on.
If I got some unexpected time off, I think I would head for a cabin somewhere along the water where I could rest, recharge, and spend hours admiring the view through the windows.
Eliza’s Caregiving Hacks: food edition
