Reading others’ stories reminds me that I’m not alone
Caregiving can be hard across the rare disease spectrum
Sometimes I find perspective when I listen to other rare disease communities. ALS News Today is just one publication of its parent company, Bionews, which hosts more than 50 online websites devoted to rare and chronic diseases.
Last week, I got on Cystic Fibrosis News Today to catch up on Brad Dell’s column, “Victorious,” which I’ve followed for a few years. While I was there, a column by Jennifer Chamberlain caught my eye: “Caregiver burnout is taking a serious toll on my mental health.”
I’ve been feeling burnt out, too.
The first years after my husband, Todd, was diagnosed with ALS were marked with stress and fear for the future. Then life became harder 10 years ago, after Todd lost his ability to sleep independently. And over the past four years since he became homebound, the isolation and tedium of caregiving have taken an additional toll on my mental health.
Chamberlain, who takes care of her daughter with cystic fibrosis (CF), recounted her experience attending a CF mother’s retreat, where she bonded with other women over their shared mental health challenges. She reflected on the relaxation she felt at the retreat when someone else was in charge of everything.
I imagined a retreat where the other ALS caregiver spouses I’ve gotten to know online would meet for a weekend to relax at a nice hotel. It’s not feasible with our caregiving demands, but it’s a nice thought.
I’m fortunate to have help for six hours most nights so I can sleep, but even then I’m still on call in case of emergency. During my waking hours I’m usually providing care or am on call, ready to assist Todd in the bathroom or with a cough.
But this fall, I’ve had more breaks than in the past few years. My daughter is attending a university a couple hours from our home, and on a few occasions I’ve hired a retired nurse to care for Todd while I’ve made the trip to drive her home or back to school. It’s been good for my mental health to get away and be off-duty, and I’ve found myself eager to text Todd pictures while I was away and talk to him when I returned home. I like it when I can relate to him as his wife, friend, and co-parent rather than his caregiver.
Chamberlain observed, “Unfortunately, I can’t go on weekly retreats.”
Me neither.
The challenges increase
Caring for Todd wouldn’t be that difficult if it were for only 40 or even 60 hours a week. It wouldn’t be a bad gig if I could get some time for mental separation from his needs. But it’s hard for me to be on duty for 18 hours a day, seven days a week. And I say that while recognizing that I have it better than many other caregiver spouses who are on duty 24/7.
I scanned the titles of Chamberlain’s other columns and clicked on “I hate raising funds, but I do it anyway for cystic fibrosis.”
After Todd was diagnosed, his co-workers threw a benefit for him to raise funds to help us to build our accessible home, and then we participated in a walk to raise funds for an ALS organization. Since then our fundraising efforts have focused on our own needs: to help pay for nighttime caregivers and to build an office addition so those caregivers would have a place to sit near Todd’s bedroom at night.
Chamberlain writes, “Sometimes friends or family decide not to participate or even acknowledge our tireless fundraising efforts. And sometimes that can feel demoralizing. Others get to move on, but we can’t because we’re still in this fight.”
That line brought tears to my eyes.
With ALS, life only gets more difficult, but as time has gone on, I’m feeling that we have less and less support. Several family members who’d provided emotional and practical help have died. Paid and volunteer caregivers have dropped out. Agencies are short-staffed and don’t have shower aides or night staff to send us anymore. I’m disheartened when people move on. Fortunately a few people are still in the thick of it with us, and I’m thankful for them.
And I’m thankful for other Bionews columnists, too, because reading the stories of others reminds me that I’m not alone in the hardness of living with rare disease.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
About the Author
Brian Stanfield
Thank you Kristin for sharing your experiences in this column. My wife has been my sole, soul caregiver for 21 years, and I see what it's done to her and what it's done to us. Your family is always in our prayers.
Suzanne Lynskey
Brian Stanfield,
I hope your wife has read Kristen’s story and will get the help she so deserves and needs. What a blessing she is to you !
Natalie Sirota
I get it and feel your frustration and concerns. Our daughter has been chronically ill for almost 10 years now. At first people were concerned and supportive, but it dropped off. When she was totally bedridden, we couldn't leave her alone. People would ask if and when she would be better - not happening. While she has improved in some areas, other areas are still a daily struggle. All of us need support, both the patients and caregivers alike. I wish there were more online caregiver support groups. We sure need them!