While talking to a fellow Myotonic Dystrophy (DM) community member, we were discussing what appears to be laziness in her son. He has a couple of tasks around the house, such as getting the mail, that he is more than happy to do but he just doesn’t do it, unless he is reminded. She patiently reminds him but she was concerned that she was enabling him.
There is a difference between enabling and empowering. Remember that enabling is doing something for someone that they can do for themselves. Empowering is about doing something for someone that might be hard for them to do but when we help they will then be empowered to be more functional and independent.
Most of my family members are like this fellow community member’s son. Even things that are important for their self-care like a new medication or doing their exercises that Physical Therapy has given them do not get done unless I or their caregiver reminds them.
When I have to remind my loved one, if I make it mean something like they don’t care or they are lazy then I get frustrated with them and either chastise them or even give up on them. But if I can remember why I need to remind them, then I am more patient with them.
I was told once that we as humans are “meaning making machines.” What that means is that we like to make sense of our world so we assign meanings. If we remember that the meaning that we assign to something is nothing but an imaginary meaning that our brain made up, then we can change the meaning that we assigned to it.
If, instead of saying that our loved one is lazy (which is a meaning that our brain has assigned to their behavior) we could say that they are good, gentle people with a cognitive deficit (still a meaning to help us make sense). By telling ourselves this new meaning we can be good gentle people ourselves when we respond to our loved one. Most of the time all it takes is a gentle reminder and sometimes an explanation as to why the behavior is needed. Granted I do have to continue to remind them until it becomes a habit for them. Once it becomes a habit it’s difficult to get them to stop the behavior.
There is not enough awareness of DM and its cognitive effects. I am available for individual or group coaching. I am also available for giving speeches in professional settings to educate about this very misunderstood disorder. You can sign up for a 15 minute call to discuss my availability by going to myotonicdystrophycoach.com. I look forward to hearing from you.
It took me a long time to learn to be the person that reminds my family members. I come from a military home where women don’t tell men what to do. I was afraid of stepping on toes. In the family that Kent and I created I brought that belief with me into the relationship. After a lot of years I learned that Kent functions a lot better if I gently remind him of details that are important for his self-care, such as staying hydrated. Once I became confident in my role with him and don’t get angry at him for things that he forgets, we started working as a team. We like how our relationship supports each other. Sometimes I’m even teasingly called “The Woodbury Frontal-Lobe”.
I know that some of our loved ones don’t respond positively to our reminders. Those are very complicated relationships. It was very hard for my oldest to have me remind him of things. He would take it as criticism. We tried many different options, like chore charts, and sometimes he responded better. But it was still very difficult raising him. When he became an adult he started getting therapy and he started taking psychotropic medication. These are medications such as anti-depressants. After he started in therapy and on these medications he became much easier to work with. It’s also possible that he became easier because he moved out on his own and didn’t have us in his personal details.
This last week we had cardiology and echo scans for 4 family members. It was an all-day event. Michael and Chad had to get up and ready earlier than they usually do. I asked them to try to hustle. When I spoke to them and told them that I was on my way to pick them up, they sighed and said that they had just finished vibrating with their airway-clearance vest which takes 20 minutes. I sighed with frustration because they needed to hurry, but I told them to just keep trying to get ready. The reason that I tell you about this incident is because their airway-clearance device is important but when they are healthy, as they are right now, it can be skipped when they are short on time. Because of the way that DM affects their brain they don’t have the ability to decide when something can be left out of their schedule. Their routine becomes fixed. It’s may be hard to get them to add something to their routine but once it’s added it’s hard to get them to leave something out of their routine.
Knowing that my loved ones aren’t being neglectful or forgetful on purpose helps our relationships. I used to struggle with this and I have watched other families struggle with the apathy and lack of initiation that their family members show. Once we learn that it is a part of their brain function and they can’t help it the relationships flow easier.
I can remember being a very productive energetic teenager. I loved being busy and I loved school and grades came easy for me. I used to observe others that weren’t as successful as me and think that they just hadn’t learned how to initiate their motivation. If they could learn what I knew then they could be as productive as I was. Of course, that was very naïve and immature of me. Once I learned about my family and that motivation and initiation are brain functions I was humbled about what I had previously thought and the judgements that I had made. DM affects the brain and the extreme fatigue, lack of initiation, poor judgement, apathy, etc. are all symptoms of DM.