No Spaceships Required: Technologies That Really Help a Caregiver

While searching the web for a unified definition of technology to include in this article, pretending to know a lot about the topic, I discovered that technologies is not the plural of technology. Or rather, the latter is not the singular of the former.

Technology is everything we know, the methods we use to design and build useful solutions in everyday life; when these solutions materialize and become tools, machines, or applications, we're talking about technologies.

Now that I know, I feel like I've always known this (and some of you may be thinking, "What a discovery!"), but as soon as I read it, I had a kind of epiphany, and I thought it was right to make it clear that the person who wrote this article isn't a jack-of-all-trades, but rather does his homework before discussing anything. And anyway, in these dark times, "throw it away."

But then, how can all these technologies, made possible thanks to technology, be useful to a family caregiver?

To answer this question, we must first start with another: what technologies can be useful to a family caregiver?

It took me a while to find the answer, because I got lost in thought, until I realized the answers were all around me. I mean, I knew they were all around me, but I wanted to find something unique, to give you the solution of the century, because I really cared. But then the local health authority called and scheduled an appointment for my son Tommaso. As I marked it on my smartphone's Calendar app, paired with my wife's so we could both note it and see what we'd noted and not forget anything, I realized the best thing to do was talk about the most useful and common things. Because sometimes it's precisely the most readily available solutions that we ignore, searching for others in a distant galaxy. Exactly as I was doing while writing this article.

So, yes, one of the most used tools in our family is the Calendar app on our smartphone. At first, it took some time to set up sharing between the two accounts and decide which colors to use for appointments, but now it's all automatic; I don't have to do anything except mark appointments and remember which color is right for doctor's appointments, which one is right for physical therapy, and so on. And anyway, when I don't remember the colors, I just scroll back through the calendar and look at my past appointments.

No more loose notes, no more giant chalkboards hanging on the fridge, which is already begging for mercy for all the magnets we've stuck to remind us of every single trip... our friends have taken, because we're caregivers and have neither the money nor the time to travel. Not to mention that accessibility is a lottery, and sometimes, to avoid losing our nerve, it's better to stay home. But that's another topic, and perhaps it'll be useful for a future article.

We were saying: technologies.

The second one that comes to mind, just thinking about the fact that I didn't know how to set up calendar sharing between my phone and my wife's and had to search online, is Google. Actually, SAN Google.

Nowadays, when you don't know something, you Google it. From simple technical information to the location of that office you have to fight at to get something you're supposedly entitled to.

The problem is that Google also has its pitfalls, because in addition to a wealth of useful information, you can also find a lot of nonsense and misinformation. It's a very useful tool, but one that requires knowing how to use it effectively. You shouldn't just think, "Here's the information I was looking for," but you need to ask yourself, "Who is providing this information?" And while this step is fairly easy for some, it's not for everyone, so in the end, for certain matters, it might be best to contact the relevant authorities. Their address and phone number, however, can be found on Google.

Another reason I advise against using Google—and I do so knowingly, because it's a trap we've fallen into ourselves—is the frantic search for every single medical term we read on paper or hear spoken to us. This also applies to the names of diseases, syndromes, and any other medical condition. Wikipedia has depressed more people than the economic crisis.

And what about the electronic health record? When I left Lombardy in 2020, I didn't even know what it was, but in Romagna, it already existed.

Having the ability to download medical documents and reports, check vaccination records, and go to the pharmacy without carrying a paper prescription because the pharmacist could view it directly on my computer was a revolution.

No more lines at the GP or pediatrician, or even at the CUP (Centre for Medical Records) to pick up medical reports, even though there were already machines for that in hospital lobbies. And not even having to leave the house is another plus for someone who spends 90% of their time indoors.

Overall, the Internet offers a wealth of opportunities. And not just for caregivers, because you don't have to have a disability at home to take advantage of all this future.

And what about groups on social networks or chats on WhatsApp or Telegram?

They can become a network of practical and emotional support for family caregivers. I read online (here it comes again) that studies have been conducted on online groups made up of caregivers, and they show that these spaces reduce stress, anxiety, and feelings of isolation, and even improve caregiving skills.

Of course, toxic groups or chats should be avoided like the plague, and that's not easy because "toxins" hide well and emerge when you least expect it. Generally speaking, if the people in that small network have even a modicum of awareness of its potential, plenty of people have the opportunity to vent without judgment with people who have "been there," and who know how important a pat on the back or recognition of certain physical and emotional efforts from others is. Not because we need to be told we're good, but simply because sometimes, as we're crushed by the weight of our responsibilities, we lose our composure, and we're convinced that being crushed is the only thing happening. But that's not the case. We're doing a lot of things in the meantime, and someone watching from the outside sees it better than we do and can perhaps point it out to us in one of these groups or chats.

And in the end, somehow, you feel a little less alone. Shared pain is half the joy, I'd say. Actually, a quarter of it. Let's be realistic.

These spaces can become real local networks within which a caregiver can discuss bureaucracy, benefits, services, and, why not, little daily tips.

"The PEG tube gets very hard very quickly. I change one a week, but the local health authority gives me two a month. How do you do it?"

“Do you always rinse it well after meals? It's the nutrition that ruins it. Try it!”

“Ah… Thanks!”

Things like that. I've seen it happen a thousand times.

Better than a psychologist and a dedicated help desk combined, and all within reach thanks to a smartphone.

Anyway, go to the psychologist anyway, it never hurts (a little tip from me). There's no dedicated help desk, though. Sorry.

In this article, I've deliberately avoided discussing all those technological devices like respirators, aspirators, pumps, and the like. While they're probably among the most useful tools we can use to help manage the person we're caring for, it's equally true that if we're in the care of the local health authority, it's hard not to know about them if we need them.

I preferred to focus on those technologies that are right before our eyes but cannot be seen, and which, if used correctly, offer more benefits than the energy required to operate them.

Lots of stuff for those who live a life in which “time” and “energy” are like air, and suffocating.

The best way to end this post is to encourage you to leave a comment, perhaps sharing your experience with certain technologies or leaving a tip that might help someone else.

So that even the comments section below can become, in some small way, a sort of local network. That is, if you have even a modicum of knowledge about its potential. 😉