A different perspective on what being an MS caregiver actually means
With someone else depending on me, I learned the real cost of caregiving
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I’ve been quiet lately. It’s not because I haven’t had anything to write about, but because life decided to throw multiple crises into the mix.
Over the past couple of months, my mom underwent both thyroid and major spinal surgery, my cat decided to eat part of her litter mat and needed abdominal surgery, and my mom’s cat ended up in the vet emergency room with a urinary blockage. Meanwhile, there were other animals to care for, a household to manage, insurance companies to battle, and a full-time job that didn’t magically disappear. I split my days between the vets, the hospital, and my mom’s house, trying to balance everything and keep things running.
Somewhere in the middle of all that, I was still supposed to be taking care of myself — that minor detail of living with multiple sclerosis (MS).
I’ve lived with MS for over 20 years, which means I’ve spent the majority of my life on the receiving end of care. Between relapses, surgeries, treatments, and recoveries, on many occasions I’ve needed someone to step in and help. My mom has been one of those people, showing up through circumstances neither of us could have anticipated when I was diagnosed at 16.
I’ve always appreciated what she’s done for me. But these past couple of months have given me an entirely different perspective on what being a caregiver actually entails.
It’s not necessarily the individual responsibilities that are so overwhelming, although there are plenty of those. It’s the accumulation of everything that needs to be done, remembered, coordinated, anticipated, and occasionally figured out on the fly. There are phone calls, appointments, household responsibilities, unexpected complications, and a seemingly endless mental inventory of what needs your attention.
What surprised me most was how quickly my own priorities shifted. There was no conscious decision to put myself on the back burner. It was more like a series of little adjustments. Something needed to be handled, so I handled it. Something else came up, so I rearranged my day. I’d get back to healthy eating and exercise when there was more time. I’d catch up on sleep another night or take a break once things settled down.
Except things have a funny way of not settling down when you’re waiting for them to.
Before I knew it, weeks had passed, and I’d spent most of them organizing my time around what everyone and everything else needed. Even when I wasn’t physically doing something, I was thinking about the next thing that needed to be done. I didn’t give it much thought at the time; I just dealt with whatever was in front of me. My mom needed help, the animals needed care, and there were things that simply had to get done
Of course, my MS hadn’t exactly agreed to those terms. Fatigue, brain fog, and neurological symptoms were still very much part of the equation, even more so because my schedule was so imbalanced. And despite spending years learning the importance of pacing myself, recognizing my limits and actually respecting them became two very different things when someone else was depending on me.
The help you see, and the parts you don’t
I started thinking about how many times my mom must have navigated similar circumstances over the last two decades. How many times has my health interrupted her plans? How many things has she rearranged or postponed because something was happening with me that needed her attention? How often has she been exhausted herself, yet continued managing whatever the latest MS-related crisis required?
I know about some of those sacrifices. Others, I suspect, happened so quietly that I never even realized they were being made.
When you’re the person receiving care, you see the help that reaches you — the person who shows up at the hospital, drives you to appointments, helps you through recovery, or takes over responsibilities when you’re physically unable to manage them yourself. What you don’t necessarily see is everything that had to be rearranged on the other side to make that help possible.
A few weeks of caregiving certainly doesn’t compare to the decades my mom has spent supporting me. I wonder how many other caregivers have grown so accustomed to making those little adjustments for someone else that they barely notice them anymore.
I’m still trying to catch up from the past couple of months. My own health has been less than cooperative, my to-do list is still a mile long, and when I initially sat down to write this column, I couldn’t string two coherent thoughts together. But somewhere in the middle of this exhausting, rather chaotic experience, I found myself looking back at the last 20 years a little differently.
I’ve always appreciated the care I’ve received. Now I have a much deeper appreciation for the cost of that care.
Note: Multiple Sclerosis 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 Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Lisa Bowser
Thank you for that perspective. I was always appreciative when people helped me through my MS over the past 25 years, and my recent hip replacement surgery. But you put this in to a totally different form for me to appreciate. Thank you so much for your articles. I look forward to them. Have a blessed rest of your day! I will say a prayer for you and your family. God be with you!
Roxanne K McClain
I appreciated reading your article and felt vindicated. I deal with another monster - my husband was diagnosed in 2023 with frontal temporal lobe and vascular dementias. I suspect he had it much earlier as I looked back. Both he and I are retired.
My oldest daughter and her husband as well as her 24 year old daughter and 13 year old grandson live with us. We have at least 4 cats and 4 dogs and a 1.4 acre yard.
The doctors always tell me to make sure I take care of myself, join support groups, ask for help.
My immediate family helps in many ways but it's the intricacies of assisting him with daily activities, grooming, trying to ensure he exercises, altering diet, washing clothes more times than I did before, trying to keep him safe, dealing with his insomnia, doctor appointments (scheduled and unscheduled), appointments, managing medicine, insurance dealings - even getting him ready for the 3 days weekly at an adult care center - these are just part of life for me. Paying bills, taking care of the house, yard work, pet troubles, meals, appliance or car breakdowns, watching my grandson and his friends when they're at our house - it never stops. One of his doctors recommended I read "The 36 Hour Day." I'd love to...
My OCD self feels guilty that I don't do things the way I'd like them to be done. I feel guilty that I don't spend more relaxed, comfortable time with my families. Friends who understand accept the pittance of my hospitality via texts and phone calls but I'dlike to be physically and mentally with them.. My house isn't as clean, cooking is less elaborate, my yard isn't as manicured, time isn't as available, and money doesn’t stretch nearly enough. Even my cats remind me of how little time I spend with them.
My own mental and medical issues receive the minimum attention. These total shoulder and hip replacements just don't fit in. My mental health is on the line but my going to those extra doctors just seems even more exhausting.
Taking care of myself would look like having lunch with friends, pursuing the many creative activities I dream about, sitting down without guilt because my to-do list is manageable, cooking and baking at leisure and not out of necessity, having the energy to exercise more, pamper myself with the lotions and serums and oils they say my aging body would appreciate, sitting and drinking coffee with my cat, by myself in the quiet of the early morning. But those things just don't fit into the puzzle of all the other things.
I think more creative ways of assisting caregivers need to be found. Most of us finally do ask for help but everyone has chaotic lives and feeling like an imposition doesn't help. Many of us can't afford the companies who can do deep house cleaning, real landscaping, cooked meals - I'd have to clean, mow and weed , and organize the kitchen even if I could afford to. Navigating local, state and federal organizations that might be of assistance is an endless maze not easily navigable.
Finding these creative life management options for caregivers for many kinds of patients should include forums of caregivers should be really heard by the doctors and insurance companies who make the recommendations for caregivers to take care of themselves. It takes a whole village to raise a child and to take care of loved ones. The village seems chaotic to many of us.
Jeanne Gagnon
What a wonderful tribute to your mother and to caregivers! I hope that my grandson, who has lived with me since his diagnosis at age 13, will be able to articulate his appreciation as eloquently. Thank you.
Paula mieczkowski
I make 34$ too much for Medicaid and there is a shortage of aids in the country so filled out the tons of paperwork for a waiver but turned down again. All these places like visiting angels and the others want 48$ an hour and a minimum of 4 hrs. Sure I can afford that lol right now I’m a double amputee thanks to ms. Started getting sores on my legs and had a nurse come every other day to change the dressings but I went septic so they took off one leg n 2 months later they had to take other one off. I now can’t get in n out of bed to change me so now I’m giving my neighbor to lift me so that’s 20$ cash every time I need changed and now I’m behind on my rent and bills and will be homeless on the streets. Still won’t vote blue cause that free healthcare is not free ask anyone from Canada. My social security payment is not due till second Wednesday of November which means I sit in urine and feces till then and you can’t eat n barely drink because you don’t want more dirt in te depends. Further more I spend 2300$ a yr on dependents and pads to put under me so poop doesn’t get on my bed. I pay a girl to come once a week to do my laundry and cleaning and that’s 60$ rent is 850 month plus electric and internet and other bills. I’m drowning and no help no family and this ain’t living. If I was younger I’d have insurance that would cover this. So all you youngins better get busy contacting your local council and mayors and congress and senators to get this dealt with and what better time than the midterm elections. It’s 580$ a month to get changed that i don’t have meals on wheels keeps me from starving cause no grocery money but there are charities but they don’t deliver. Never in life did I expect this happening from ms. A millionaire couldn’t afford ms. All wheelchairs n all dme’s are hard to get and have to have everything has to go to drs and I don’t have anyone to go to post office to mail these papers much less the 3-5$ to mail them. So now I sit until the second Wednesday of November to get changed. Most aids aren’t allowed to lift anyway and you can’t get cleaned while sitting on the mess. I’m 74 now and it’s getting worse by the day. Dr said I was in final stages n get my affairs in order. Didn’t realize there stages of ms I read somewhere that people with ms usually choke to death too