Asking for Help Takes You to New Highs, Not Lows

Sometimes people exclaim, “I never thought I would be doing this a year ago,” to negatively describe an experience. For example, asking for extra help to survive may cause some to think they are stooping to a new and shameful low.

Even with all the help I’ve needed my whole life, I’m still learning this lesson over and over. Whether you have SMA or not, recognizing when you need more support is one of the hardest lessons to learn. Once you learn it, though, you understand something new: You are not stooping to a new low — you are reaching for a new high so you can keep climbing!

Last summer marked 34 years that I’d been receiving home health nursing. I was 38, and I’d been using this service since I was 4. During all these years, I had only used one nursing agency at a time. In fact, by 2020, I had been with the same agency for 20 years. The idea of bringing on an additional agency seemed as strange to me as bringing an alien into my house to keep as a pet.

My mom felt the same way. It was her job to match nursing agencies with patients being discharged from the hospital. She knew how difficult it would be for someone to have more than one.

Who wants the headache of dealing with all the rules and regulations that come with having multiple agencies? Wouldn’t it be confusing trying to coordinate which nurse, from which office, would come at what time? It just wasn’t practical. Or was it?

When the pandemic hit, many people had to do things that weren’t practical. Home care recipients were no exception. As I wrote previously, we began to see the flow of new nurses coming into our home slow to a trickle several years ago.

If it was a trickle in 2018, COVID-19 practically turned the home healthcare industry into a desert landscape. Things got so bad that one night nurse was working six nights a week on my case for a year! I was extremely blessed because so many other patients could barely get any of their days or nights covered, and still can’t. Sadly, their care is suffering.

While my mom and I were trekking through this desert, we still couldn’t convince ourselves to take on a second agency. We had become attached to the one-agency state of mind. We felt that if the agency couldn’t find any new nurses, it was our fault as well. We just needed to encourage them more and call the office once or twice a week.

Eventually, extreme circumstances have a way of turning a no into a yes. After the horror of going down to just two day nurses and one night nurse, when I used to have eight, my mom and I finally caved in. Having two agencies certainly couldn’t make things worse.

I won’t say all my problems were solved. Yet, by having the courage to ask for more help from another source, my night nurse was able to cut back from six nights a week. When we saw that we were slowly reaching for a higher level of care instead of stooping to a lower level, the decision to add a third agency was easier. This time, the day shift on every other Sunday was covered. This may not sound like much, but it was a huge relief for my mom.

If you’ve read my other columns, you know that I’m still struggling to find nurses, especially for night shifts. Many others are still struggling to find nurses, even with multiple agencies as well. But I’m faring much better than I would be had I not stepped out of my comfort zone to ask for help in new ways.

Although the strategy I just described may not fix all your problems, my point is to keep challenging yourself to try strategies you never thought possible.

Approach situations from multiple angles as well. Hiring more agencies isn’t the only way I’m trying to solve the nursing drought for myself and others. Recently, I’ve been on Fox 46 Charlotte and Spectrum News North Carolina to advocate for state legislators to raise pay in home healthcare. It’s another way I’m stepping outside my comfort zone.

Between you, me, and the world, though, I like being on TV.

You might enjoy stepping outside your comfort zone as well. Try it and find out!

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Note: SMA 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 SMA News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.