All four of our children (now adults) have Myotonic Dystrophy (DM). It is a Rare Disease and some of its characteristics are equally rare. DM has Anticipation. That is where it gets worse in each generation. We found out that our 3rd child, Michael had it when he was 14. Because we didn’t know which parent it came from they did bloodwork on both my husband, Kent, and I. We found out that Kent has DM. But he has very few symptoms compared to the amount of symptoms that Michael has. We also, later, found out that our other 3 children have DM and they have many symptoms also.
Less than a year ago we were able to get most of our family seen by a Palliative Care team. Palliative Care is NOT end-of-life, though it can be. For us, Palliative Care is ongoing medical care that comes into our home. My family members are seen by a doctor that comes into our home on a monthly basis. They also provide any other services that are needed, in the home, such as speech therapy, a home nurse, etc.
When Dr. Jill visited Kent this last month she was talking to Kent about some mild water retention that he deals with. She suggested that he take the hydrochlorothiazide 25 mg. pills daily or 3X a week. She explained that this medication is milder than the Lasix that he used to take. I explained to Dr. Jill that I have noticed some water retention in Kent lately but that he doesn’t seem interested in treating it. Dr. Jill said that if Kent doesn’t want to treat his water retention, then that is up to him.
Dr. Jill’s comments got me to pondering. I get where she is coming from. Adults have the right to choose whether to take care of themselves or neglect themselves. What she was saying is that it is Kent’s choice whether or not he follows the doctor’s orders. And, she is correct. But then I have also learned a lot after living with 5 family members with DM. DM affects the fronto-temporal lobe of the brain. This is the executive function part of the brain. In other words, the decision making part of the brain.
If I didn’t advocate for and support most of my family members they would sleep the day away. They would also miss most meals and most medication. They also wouldn’t make it to doctor appointments where they are taught how to care for themselves and the issues that this disease creates.
So, what about Dr. Jill’s comments? Should I let my husband neglect himself? Well, of course, if he won’t let me coach him about his self-care then I don’t have any other option. But, what if he will let me coach him? Then, don’t I want to coach and support him so that we can have a more productive and engaging life?
I have had to learn to push past the “No” of my family members. Pushing past their “No” doesn’t mean that I bully them. It also doesn’t mean that I pressure them and act like a bitch. Each individual person has traits that respond to different techniques than others. That is why my background in Family and Child Relationships has been a big help for me with our unique family. I am very skilled at learning and trying different techniques until I figure out what works best for each family member.
My two oldest, who live with long-time partners have used me in different ways over the years and have eventually become successful at managing their lives along with the support of their partner. In essence, they have tactfully and not-so-tactfully told me that they can handle the details in their lives that make them successful. It took a lot of work when they were more dependent on me to help them feel successful, even though their lives don’t look like the typical successful life. It is necessary to look beyond the details of the things that they can’t accomplish and to honestly look at what they are capable of and not capable of, and then build on their strengths, not their weaknesses.
My two youngest children (now 39 and 32 – not so young anymore) have me more involved in their life than the older two. Due to the effects of DM, without support, they could be very lethargic and unmotivated. Because I have worked very hard to earn their trust over the years, they let me play a large role in their lives. It doesn’t mean that I do everything for them. I don’t have the time or energy to nor would it be good for them to have “mom” always managing them. But, they do trust me enough to let me arrange for services that help them live independent of me and my husband.
So, yes, I have had to learn to push past the “No”. My loved ones will automatically say no in most situations. But I have had to learn that “No” means maybe. And I can work with maybe. Even when we push someone or something away most of us still want to live a quality and meaningful life.
If you are interested in coaching from me so that I can share with you the techniques that I have learned and refined, I would love to connect with you. Please go to my website at myotonicdystrophycoach.com and select “contact” to set up an appointment with me. You can also e-mail me at email@example.com