What do you do if your older parent chooses different medical treatment than you want for them? If they want to stop taking their medicine or if the refuse treatment? If they are tired of living and just don’t want to try anymore. This is a dilemma I have seen time and again in families. Adult children have their own ideas about how their parent should treat an illness and this can result in an argument.
If an adult is in their “right mind,” meaning they have not been assessed and determined to be incapable of making rational decisions, then they get to choose. And this can be very difficult for their families. I have seen adults stop taking medicine because they didn’t believe in medicine or they didn’t like how it made them feel. Or because they couldn’t afford it. Their children say, but you need it to live! The adult knows this, but is making a choice. I have seen adults have very harrowing experiences in the hospital, painful surgeries or debilitating side effects, long term recovery. They know they never want to experience that again, so they might refuse to see the doctor if they know something is wrong or if they fear they might need surgery again. If someone hasn’t been through this, they may not realize how traumatic it is and how fear can stop someone from acting. It is similar to having a car accident and being afraid to drive again. I have even seen people decide they want to stop living. They are tired; tired of hurting or tired of being alone or tired of being a burden. They aren’t suicidal, they are just passive about working to live and if death comes they are willing to embrace it. This scares their children because they don’t want to lose the parent. But whose best interest are the children acting in?
I’m not suggesting stand back and let the parent die. I’m suggesting try to understand why the parent is feeling how they feel and be respectful. It may be difficult, but try to imagine how you will feel at that age. Try to assist that adult in maintaining their choices and their dignity, but it is also ok to have a conversation about how you feel. Enlist the help of a social worker, a pastor or a therapist to mediate the conversation and help each person see the other’s perspective. Ultimately, however, you as the adult child might have to get help for yourself in dealing with not liking your parent’s choices. This is not an easy scenario, when you and your parent disagree on how the parent should treat an illness or choose to live, but if you try to force the parent to comply it will often result in anger and resentment, loss of dignity and depression for the older parent. Not necessarily a better solution.
I have always known life isn’t easy. From my own tough experiences but more importantly, from hearing every day the difficult things people experience when they share them with me in counseling, I have heard some doozies. And yet, through it all, I am repeatedly awed by the strength of the human spirit to persevere. I tell people all the time that they can handle so much more than they realize. They don’t think they can, but then when it happens, they do, they survive, they make it through.
I don’t think we worried we wouldn’t survive parenting a child with Down Syndrome. We knew we would be okay. But there was so much we didn’t know, it was scary. Parenting itself is already an adventure into the Great Unknown. It’s the most rewarding and the most powerless feeling anyone could have. Add to that parenting a child with special needs and many of us could easily shut down. Health concerns, learning disability, physical disability, mental illness… Down Syndrome, Autism, Sensory Processing Disorder… it feels like there are more questions than answers sometimes.
Our experiences with Sensory Processing Disorder and then Down Syndrome turned out to make us stronger. And while we assumed that we’d have to work harder to guide our children who had “special needs”, what actually happened is that they teach us. They do better than we ever thought they would, and teach us new things every day. They exceed our expectations and those of the world around them. When I wrote my book (Living With a Rock Star and a Super Hero) my premise was that Ben thinks he is a rock star and he thinks Lucas is a super hero. But the real truth is that to me, Ben IS and rock star and I am his biggest fan, and Lucas is all of our hero, he saves us every day with his wisdom and his energy. If I had to do it all over again I wouldn’t change a thing. I am better because of it. Most days I try to remind others of their potential, and I can do this because I see it in action every day of my life.
Throughout November many people have been posting daily what they are thankful for and I think it is an excellent habit to remind ourselves what we need not take for granted. To tell those around us how much we care, to express appreciation for the little things. These are so important when the world around us can feel quite negative much of the time. One thing I would add for this time of year, and all year, is a sense of empathy. Please try to recognize what others are going through because while some of us are celebrating with loves ones, others are alone and hurting.
The holidays can be a season of caring and giving. But it can also be a constant reminder of the voids. If someone has lost a loved one to death, the holidays can be especially difficult because the traditions have to change. Who’s going to cook the turkey if Mom’s gone? How am I going to deal with all of these toy commercials and Santa if my child has died?
Divorce can also make the holidays different and difficult. If your ex has the kids for the holiday it can be a very lonely day without them. It can bring up resentments and hurt feelings and trigger depression and drinking, sleeping or other unhealthy behaviors to cope.
Being single when someone wishes they weren’t can also be saddening this time of year. Not having that special someone to share a moment with makes some people feel gloom.
I bring these things up as a reminder. For those of us not dealing with these issues, a reminder to be conscientious of those who do. Don’t assume they have someone to spend the holidays with. Don’t gloat about what you are doing. And invite people into your circle during this season who might not have a place to go. For those who are struggling, try to plan ahead for the difficult days. Don’t be afraid to ask a friend for support and make plans for tough days instead of dreading them. Know yourself. If you know the holiday will be hard, make plans to do something different or special, honoring the one you lost or helping others who are also in need.
The holidays are not happy for everyone. But maybe we can help make them less miserable for those who are dreading them.