Living with family members with Myotonic Dystrophy (DM) can be confusing and scary. With the effects on the frontal lobe our loved ones can be apathetic and not very self-aware. At least this is my experience. Kent has had so many health issues not only due to his DM, but also due to his Multiple Myeloma (cancer) and to the fact that he has 8 collapsed vertebra in his back from his cancer.
Last fall Kent kept getting pneumonia and eventually Covid. It took a while for it to register with me that he was getting sick so often because of his inactivity. Not just physically not moving but also not moving his lungs. We had to learn how to move his body and lungs and how to keep his throat/nasal passages sanitized. It’s a daily concern because he forgets some of the important things that he needs to do. When I remind him, most of the time he will do the requested activities but it takes a lot of monitoring on my behalf.
This has been a very stressful time period. I have often wondered if Kent wasn’t going to survive. I have a wonderful doctor that used to be a hospice worker. She isn’t afraid to talk to me about life and death. She explained that death is the other side of life. We are born and start breathing, we stop breathing and die. She isn’t afraid of death but sees it as a natural part of the life cycle.
Recently I was having a lot of anxiety so I made an appointment with her. She taught me some meditative things to do that have been helpful. The things that she taught me are helping me keep my role in perspective. I am an important part of my family’s health, but I am also not all-knowing nor can I always control the outcome. But, if I didn’t try, then it seems like they wouldn’t be able to carry through. In some research, they’ve surveyed DM individuals to determine their health IQ (I’m not sure if I’m using the right phrases here). Those with DM can have a hard time interpreting what the doctors want them to do and then applying it to themselves. That makes the caregiver role especially important with our DM family members.
Doctors are very helpful and caring, but they are not with our loved ones 24/7. We are. Therefore, we are the ones that have the most insight into the situation and sometimes the only ones that can help them apply the information into their daily lives.
What my doctor taught me to do is to realize that I see myself in the middle of my world and to visualize myself in the middle of a sphere trying to manage everything. This is very overwhelming and anxiety producing. Next she had me take some deep breaths and then visualize myself on the outside of the sphere where I can see the entire picture and just a little nudge can shift the entire situation. This visualization gives me more power with less stress and anxiety. It is helping. She also told me to allow myself to feel the anxiety. I try to sit in it. Eventually, even though it is still there, I can go back to my activities and handle my situation.
She also told me that when it’s Kent’s time to go, that I’ll have to let him go. In other words, I think that she is assuming that I am not willing to let him go. I thought about this a lot after I saw her.
I have lost loved ones in the past and I am aware that losing a loved one is confusing and hard. I am not saying that won’t be the case when it is Kent’s time to go. Losing someone is always difficult and life altering. But surrendering to let go of someone is quite different when dealing with DM than when dealing with a person with normal cognition.
We, as caregivers and case managers of those with DM don’t have the luxury of letting go. We need to be diligent, careful managers of our loved ones. So her comments about letting go perplexed me. Of course, when the end comes, I’ll have to let go, but in the meantime, we need to be resourceful on our loved ones behalf. Not only are they lacking self-awareness and motivation, but their disease is also very complex and very misunderstood.
I am always trying to find new resources. For instance, Kent’s issues with working his lungs feels like an uphill battle. I remind him, and he is co-operative, but without my coaxing he doesn’t seem to be able to breath deep on his own. His oxygen levels run just under 90 when he isn’t deep breathing, which is most of the time. 90 isn’t quite adequate. The doctor said that he can go as low as 88 but sometimes his oxygen sats go lower, which is concerning. At home, you check your oxygen with a pulse/ox on your finger. DM affects the circulation in the distal (distant) parts of the body. That means that his pulse/ox might not be accurate. It’s such a dilemma trying to figure out if he is in danger or if his pulse/ox is being inaccurate.
Back in 2004, when I first discovered the California DM group, they had a conference and its theme was “I am not a DNR.” What they were saying with this theme is that even though a DM individual might seem apathetic, they really aren’t apathetic. Molly White with Dyne Therapeutics said to me “We are fighting for those who can’t fight for themselves.”
That is how I see us as caregivers, fighting for our loved ones even when it seems that they aren’t fighting for themselves. That is why my doctor’s comments about “letting go” of Kent perplexes me. We as caregivers of loved ones with DM have learned not to “let go.” If we did, our loved ones might not still be around.