Lessons in patience and resilience: A guide for MS caregivers

My husband, Mike, did not ask to be an MS caregiver. Our vulnerable reality is a far cry from the blissful naiveté of our wedding day. But after 26 years, we continue to navigate life with multiple sclerosis (MS).

Photo by Vicki Shequin

Jenn Powell, her husband, Mike, and their dog, Abby in Dana Point, California, in January 2022.

Multiple sclerosis (MS) is unpredictable and progressive, which can make caring for someone with MS feel like a rollercoaster. I do not have one caregiver; I have a husband, family, and friends who care deeply. Each of them is a caregiver because they care for someone with MS. They care for me.

Daily needs

Mobility

My husband notices when I need help despite my effort to hide it. I rarely ask for it, but I appreciate his guidance when my gait and balance are off. I will never stop fighting for my independence, but I do my best to receive his offers with love and appreciation. And he, in turn, when tempted to react with frustration — an emotion I rarely respond to — has learned to quietly offer help.

When I insist on moving about the house unassisted, he provides an outstretched hand or my cane for balance. I am working on internalized ableism over feeling embarrassed by my gait. His quiet presence reinforces my self-worth.

Many people with chronic disease are reluctant to reach out. It is helpful to offer to help with specific needs such as walking a dog, meals, or dropping off books. I am more inclined to accept if I am approached this way. My dog, Skye, is a good example. A friend offered to walk her while I focused on my health after a recent exacerbation. Her offer alleviated my need to ask.

Grooming

I may need help with bathing, dressing, or more intimate tasks. Coming up with a plan beforehand helps lessen my insecurity. My body has changed so much since my diagnosis. The added weight, tired eyes, and weariness are exposed. The vulnerability is so raw. My trust in him is sacred. We talk about future vacations and silly movies. He strives to support me in maintaining my identity as a woman.

It can become so easy to lose ourselves in the identity of multiple sclerosis. When he looks at me and touches my hair or tells me I look pretty, it helps reaffirm I am still Jenn.

Talk to the person in your care, remembering they are a person, not their disease. They trust you with their own vulnerability. If you see them feeling anxious or inhibited, try to lighten the atmosphere with laughter.

Eating

Utensils can become flying objects due to numb fingers and hands. My husband offers to cut meat if I am showing signs of trouble. It is better than insisting on cutting it without asking. He humanizes those moments when I feel like I am losing myself in this disease.

We learn through trial and error, anger, and tears. We talk, we try, we don’t give up. By no means is this without hiccups. Be patient and kind and try again.

Emotional needs

Maintaining emotional health and well-being is a continuum with multiple sclerosis. Depression and anxiety are frequently associated with this disease. While each can be a result of coping with the challenges of living with MS, they are also physiological symptoms of MS.

When my pain or anxiety are heightened, my sister quietly witnesses my grief. She does not try to fix me or say she understands, as neither is possible. And that is okay. Just the act of being heard is so important to someone with MS.

The mental toll of increasing disability and loss — frustration over falls,  dropped dishes, watching myself change before my very eyes — can leave me emotionally bankrupt. But my sister has made space for me to be sad. She listens without judgment and helps move me through that space with love and suggestions.

Caring for someone with MS is often a lesson in listening. We have so much to say but aren’t quite sure what we should reveal, especially when feeling down. Look for subtle clues: Is your loved one quieter than usual or more withdrawn? Are they having difficulty focusing on things that usually bring them joy?

Life with MS can elicit feelings of hopelessness and fear. Depression can often be a result of these overwhelming feelings. I have sought out a therapist when I could not get out of the suck hole. My husband and I tried couples therapy to learn better ways of coping with our feelings. Therapy can be helpful if you are at an impasse — either alone or with another.

Emotional challenges are not unique to the person with MS. It can affect caregivers, too. Mike and I both experience them and the need for space. When either one of us feels overwhelmed, we light an electric candle and place it on the bar. This is our signal to chill out and be kind, and save more in-depth conversations for a later time.

Self-care

Being an MS caregiver requires self-care. I have witnessed my husband’s frustration toward me and others when overextended and tired. He never signed up to be an MS caregiver and sometimes resents being thrust in that role. It is normal to be angry at this disease. I am angry, too. We have both learned to communicate that anger and fear instead of bottling it up.

It is important to find someone other than the person in your care to talk openly with about these feelings. If you do not have friends or family to speak with, try one of the many caregiver support groups offered both online and in person. You are only able to provide care if you care for yourself first.

If you are a friend providing care, you must set boundaries. Boundaries are healthy parameters to protect them from over-reliance and you from resentment and burnout. It is easy to become enmeshed. Try to be aware of any unhealthy habits like multiple phone calls at odd hours.

Navigating the unforeseen

I live in California, the land of earthquakes, fires, and floods. If you are caring for someone with MS, have an emergency bag packed and ready for them. Include necessary medications, water, a warm blanket, shoes, and clothing. Keep an alternate cane or walker with these items. Have phone numbers of the local hospital, neurologist, and pharmacy.  Preparing for an emergency is crucial, regardless of where you live.

Remember, caregivers also need caregiving. You give so much of yourselves to help someone like me navigate this disease. And while you might not see yourself the way I do, may I remind you that not all heroes wear capes — which is why my tribe is sacred. I could not thrive without each of their offers to do for me what I cannot do for myself.

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.