A Guest Post from our Business Manager…
After months of searching for a diagnosis, my mom was given the news that she has ALS. It is heartbreaking…and feels foreign. We find ourselves in a new world of navigating each day to ensure my mom, Mickey, has the very best care available and that each day is lived to it’s fullest! Countless times I’ve thought to myself, “What in the world would I do without technology”?
Technology is the reason I can text my mom throughout the day and communicate with my family with ease. Most of my learning about this disease is done online. When a doctor’s office is telling us they didn’t receive a fax we can skip the trouble and email the document instead. I spend most nights organizing pictures and playing Words with Friends with my mom – she from bed in Nashville, myself hours away in Charlotte. With 39.8 million people in the United States as caregivers, I couldn’t help but feel a couple friends would find these tools useful for yourself or for a loved one.
- Monitors. Not just for hearing your wee one wake from a nap, baby monitors are an option for caregivers that can’t always be in the same room as the care recipient. There are dozens of apps that can turn a smart phone into a top notch monitor.
- Communication. For folks who have diminished speech capabilities, communication apps are priceless. These iOS and Android apps allow text-to-speech, messaging, even photo-upload.
- Fundraising. Taking part in a charity run or raising funds for a loved one’s care from relatives is easier than ever with technology like GoFundMe and YouCaring. These online options provide safe (and easy) fundraising pages to maximize your efforts.
- Social. Well known apps like Facebook and Instagram may take on new meaning to a caregiver and recipient alike. These social sites provide an outlet and way to communicate with family, friends, medical resources and persons facing similar health challenges. Nearly every non-profit association has a Facebook page or online community with invaluable resources. Many offer private Facebook groups for caregivers and patients. Nerdy Bonus: Social media shy? Set up a private Facebook page and invite just your family and close friends. This is a great way to give updates to your support system with just one click. Add pictures and tell family stories to keep spirits up!
- Keyboard. Several keyboard apps have popped up that allow one-handed typing. Perfect for someone with limited mobility, there are options for both Android and iOS.
- Cloud. File sharing options like DropBox and Google Drive make it easy to keep track of medical paperwork and resources with a number of helping hands.
- PDF Editor. For someone serving as medical proxy, filling out paperwork is simple with Adobe Reader. Capture the patients signature for easy use ahead of time. Sure beats the fax machine.
- Calendars. iCalendar and Google Calendar make it super-simple to share doctor’s appointments with family members sharing responsibilities. Set up reminders in the calendar for care-related tasks, like daily range-of-motion exercises or medication times.
- Health Tracking. Tools like HealthVault and CareZone are changing the way we organize our health.
- Games. You heard it right! One of the many challenges for patients is staying mentally active and engaged. Apps for card games, word games and brain games make a big difference.
A few years back, Beth wrote a necessary post about the dealing with one’s digital afterlife. Important for all of us – young and old, healthy or not – to consider. Pick a trustee and give them access to this online world we spend so much time in.
This May is ALS Awareness Month and I encourage you to read about the efforts happening to find an end to this frightening disease. Thank you!
When my mother drove her mobility scooter down three steps the she didn’t see and ended up in hospital and then rehab, I created a Facebook page for her and let our relatives know about it. I posted up dates as her condition changed. Then when she died, I updated the Facebook page again with this information. (She was almost 93.) Because I was the Facebook page owner, after a reasonable period of time, I took down her Facebook page so that friends didn’t get announcements of her birthday.
It really eased the burden of having to keep everyone updated.
BTW, when Mom died, I also called or wrote everyone in her address book. I didn’t leave the death notice up to Facebook,only.
My heart goes out to you and your family. Dealing with the illness and loss of my parents was the hardest part of my life.
Another great site is Caring Bridge. It allows you to share info with friends and family in one place, so you aren’t sending the same information to multiple well wishers. https://www.caringbridge.org
My thoughts and prayers go out to you and your family. This is great information that I will certainly pass on.
As a mother to two kids, a hubby, and two dogs I frequently have to keep track of multiple medications at overlapping times. I usually do this on pen and paper but recently we had a doggie medical emergency and our dog needs about 4 or 5 medicines to take throughout the day, some every 8 hours, some every 12, 24, etc. and I found a cool app to help keep track of his medications… it’s called Medisafe and I’ve been using it for about a week. You can enter multiple meds, dosages, reminders, and even add other friends that get notified if you miss a dose. It’s been helpful for us to transition from pencil and paper to keep track of med dosage and times and there’s many more features we do not use. Hope this can be helpful for someone else. Take care yall!