Sharing Advice for My Fellow ALS Caregivers

Russo

By Loretta Russo

My husband’s ALS journey is not unique. It started with weakness in his left leg, and a few other puzzling issues which he began to note around 2010. We didn’t do anything about it until October 2012, when things got more puzzling. John was diagnosed in May 2013, at 57 years old, a week after our 30th wedding anniversary. It was the single most devastating sentence I have ever heard. For days I couldn’t even verbalize the diagnosis, and John was the one who told our family and friends.

At first, we prepared for him to be dead in 2-5 years, which we were told is the usual life expectancy for an ALS patient. However, as his progression is slow, we realized that figuring out how to live with ALS was our goal. I would think - “Today is not his day to die.”

So, for the first 2-3 years of his journey, our life didn’t change too dramatically. I could work and John could drive, walk, eat, shower and was overall pretty independent, and our life was “normal.” Unfortunately, since ALS is a relentless, degenerative, cruel and unforgiving disease, this has all changed for the worst the longer he has lived with the disease.

As his caregiver, my journey is also not unique. I quit my job in 2015 and definitely had to change my day-to-day life. Currently, John requires help for most everything. I provide all his care. He is dependent on his motorized wheelchair, but he can walk a few feet with my help, so I can transfer him without the help of a Hoyer lift. Daily, I do all personal hygiene for John - showering, nail clipping, dressing, shaving, teeth brushing, nose blowing - as well as feeding and fetching for him. We are fortunate that he can still speak, breathe and swallow, and has some use of his hands in order to work his phone, computer and wheelchair controls.

Where once we were a team and had a division of labor, I now do all the bill paying, cooking, maintenance, make appointments, etc. We have made modifications to our home, bought a handicap accessible van and radically changed the way we had viewed our future together. The only hobbies left for John are gardening and plants, for which I try to be his arms and legs. This is a far cry from his past interests: fishing, guitar, bicycling, camping, kayaking, golf, birdwatching and more. It is sad to remember and picture all of the things John used to do; it adds another dimension to caregiving - helping him let go of the things he enjoyed in his life. Despite all of his loss, John still is positive, still finding joy in the day to day.

We have wonderful family and friends. We do not have children, and none of our family live in New Jersey, so we don’t rely on them for regular help. But they all visit and help when they are able. Our friends are helpful with projects, visits, phoning, feeding assistance, but the bulk of what needs to be done is done by me.

I know that I will have to seek outside assistance at some point, but it is another milestone in ALS which only means that the disease is winning. It makes me crazy. I certainly didn’t pursue looking for an aide during Covid to be safe, and I also don’t relish having strangers in my home taking care of my husband.  As difficult and at times frustrating it is to take care of John, I feel it is my responsibility as his wife and partner. I’m sure, though, that I am not always good at the job. It takes patience, perseverance, compassion, kindness and strength - qualities I can’t always hold on to. As you can imagine, there are some good days and some bad days.

We rely on the ALS support group that we’ve belonged to since 2014. The information and support we receive is invaluable. John is also very involved with various ALS organizations, and we participate in ALS Advocacy at the New Jersey state and the national levels, hoping to move the needle on funding for patient support, research and drug development. This advocacy and interest has helped John to continue to meet new people, find meaning in his life and push for change in drug trial format, drug access and direct research.

Caregiving is a huge undertaking. Currently any family members who perform any tasks are likely unpaid (except in the case of veterans). I feel as caregivers we keep our healthcare system afloat by performing a multitude of supportive tasks and functions. In our case, we are fortunate that we both worked at jobs that paid us well, since the cost of home health aides will be paid by us. It is not covered by health insurance. The modifications to our home and our handicapped van were also paid by us. In general, health insurance is not equipped to help support the ALS community, or people with any other long-term, debilitating disease. If I had more time, I would lobby relentlessly to change this paradigm.

So, my advice to anyone who is living with ALS, whether a patient or a family member who is also caregiving, is to know every day will bring certain and unique challenges, so connect as soon as possible with your local ALS Chapter. Utilize their knowledge and expertise, as well as that of your clinic neurologist and staff to understand what is available to you - drugs, grants, support, equipment. Join a support group through the chapter - the relationships and information you gain is invaluable. Most importantly, let your friends and family help! People are always asking me what they can do, and I am still learning that I cannot do it all. 

Do as much together for as long as you can. Travel, see friends, go out to dinner and make plans.  Although the world is not as disabled friendly as we think, you can usually make it happen with the help of family and friends. It also helps to have a wickedly dark sense of humor. To be able to still laugh at the craziness is important.

Special thanks to Loretta Russo for sharing her personal journey as caregiver for her husband, John. To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog at als.org/blog.

November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being. Download this infographic about caregiving and share on your social platforms to support a caregiver you know.

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