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Absent Caregiver

When I got up and looked at my text messages I saw one from Rily (today's caregiver), that he had sent at midnight. It said "I'm so sorry to text you so late. I got a little hurt so I won't be there tomorrow. I'm so sorry." Rily is the best caregiver for Michael and Chad and they love him. Rily usually arrives at 9 a.m. I erroneously assumed that he had told his company and that they would send over a replacement. When no one had contacted me by 9:40 a.m. to say that they had arrived I called the company, A Caring Hand. They were unaware of Rily's injury but stated that they would do their best to get someone over to "The Brother's" house (they call Michael and Chad "The Brothers" - which is more appropriate than "the boys"). They did inform me that it would take awhile.

Therefore, it fell on me to wake both Michael and Chad or let them sleep for who knows how long. It is a long process to wake them but I have learned how to do it without having to run over to their place. I call Michael's cell phone first, then Chad's. But who knows if their cell phones are in their rooms with them. So, then I call the house phone which has an extension in Michael's room. I just keep rotating between calling each phone until someone answers. I started calling them at 9:50 a.m. It only took until 10:15 (tongue in cheek) for them to answer.

Should I pull my hair out now?

Stimulants are so important in their life. Chad takes ritalin and provigil upon waking, after I talk him through getting out of bed and getting it out of the safe (previous caregivers have stolen these street value drugs so they have purchased a safe). Michael takes extended release ritalin and provigil, again I walk him through waking up and getting it out of the safe.

After they get these medications into their bodies and I walk them through the process of getting into the front room they use their airway clearance vest. This is a device made by Hill-Rom that shakes the bedoogle out of them for 20 minutes. It's really incredible because they can cough better and breathe better if they use it 2 times a day. But one of the percs of it is that it shakes them so much that they can't fall back asleep (well, truth be told, Michael has fallen asleep with it on once).

Once they have taken their stimulants and been shaken for 20 minutes they can usually stay up to get breakfast and get on with their day. I have taught them to look out for each other because invariably they will fall asleep even after taking their stimulants. So, I keep in touch with them for the first half hour to make sure that they stay up. But after that half hour I am able to get on with my day.

Normally, when the cargivers show up at 9 a.m. and get them going then I don't have to do all of this. You can see why I worship their caregivers :)

The above comments I wrote 5 years ago. The process of waking up my sons hasn’t changed much since then except that now I drop in on them with an Alexa device. Michael and Chad also take Focalin now instead of Ritalin to wake them up. Weekends are the biggest problem for waking them because their company doesn’t always provide weekend caregivers. It’s very frustrating because “A Caring Hand,” the company that we work with is the only one that is contracted with Medicaid. So we can’t shop around for companies that are better staffed. Medicaid pays their caregivers such a small amount that most companies won’t work with them.

When “A Caring Hand” doesn’t have staff available to wake up Michael and Chad I have to figure things out on my own. I’ve tried complaining and I was told that there wasn’t anything that they could do to fix the problem.

Myotonic Dystrophy (DM) is poorly understood and accommodations and services for those with DM are inadequate. Most of the needs of those with DM fall on the family. Because DM usually affects multiple family members the loved one caring for them usually ends up with a lot of demands on their time.

The Myotonic Dystrophy Foundation (MDF – available at is working on “Care and a Cure”. MDF is funding research and also education about DM. They are the largest organization that is working on these causes. Each new research study and education document helps further the understanding of this multi-systemic vastly complicated disease.

As there is more understanding, those of us living with DM have available to us more services but it is a slow process. In the meantime we have to keep advocating for our loved ones and also take care of ourselves. Self-care is so important. Even if it gets in the way of some of the things that we want to do for our loved ones, caring for ourselves will make it so that we are around and functioning.

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