Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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Emotionally supporting a multiple myeloma (MM) survivor is perhaps the most challenging part of being a caregiver. My dad has quirks that I’ve come to recognize as long-term side effects of his battle with MM. Some are telltale signs of a long-term side effect called Post Traumatic Stress Disorder (PTSD). My dad lives with extreme fear of danger. Actually, he fears risk. My dad considers any risk to be dangerous. And therefore he tries go control risk and an attempt to control danger. At least that’s how I see it.
My dad is a long-term survivor of an incurable cancer called multiple myeloma. His life revolves around surviving his cancer and associated side-effects.
There’s no doubt that my dad is emotionally damaged, and I can’t do anything about it. What’s worse is that these little quirks are, well, really annoying. Parents are supposed to piss their kids off, but dad gets angry at things that most people couldn’t care less about.
For instance my dad can’t stand being in a car when someone else is driving. Last winter dad and I took a road trip to Boston. He insisted that he drive on the way there, but he let me drive on the way back. When the speed limit was 75 and I was driving 85 he blew a gasket. He actually got upset several times (which is my fault) because after he freaked I would slow down. But gradually speed up until until we were going 85 again.
Eventually my dad told me to pull over so he could drive. It’s true that I’m not the best driver, but riding in the passager seat drives my dad nuts. When mom is driving, dad will frequently let out gasps when mom does something like take a turn too sharply or break too close to the car in front of us. I think he always wants to be the driver because he likes being in control. Giving control to someone else scares him, and when he’s the driver, he never drives a mile over the speed limit.
When my dad gets scared like this he’ll make some snide remark about being more careful as if mom was driving like a maniac. That right there is the hardest part of caregiving my dad. When dad is obviously acting out of irrational fear I want to call him out and say that he needs to relax. Unfortunately, I really don’t think he’s able to relax anymore. I want to make him realize that he shouldn’t live in fear, but he’s mentally ill.
Another thing that we argue about a lot is when I wear my headphones. These are noise cancellation headphones and I can’t hear anything when I’m using them other than what I’m listening to. If my dad calls my name and I don’t hear him, he gets frustrated (aka angry). If he calls my name repeatedly and I don’t respond, I’m a goner.
I guess this is a reasonable reason to get mad at me… after all, it’s a little rude of me to not be able to answer him when he calls my name. But sometimes he gets absolutely livid.
I suspect there are two reasons why he gets angry-both of which showcase some of his quirks. The first is being overly cautious when it comes to risks. When I’m wearing my headphones and can’t hear him, he tells me that I could die in a fire because I’m not aware of my surroundings (can he sound any more like a nervous parent?!).
When he first told me this I thought he was half joking (he wasn’t). He really believes I’ll die in a fire because I’m wearing my headphones. The other reason why this makes him so mad is because of his difficulty with walking.
My dad suffers from a long-term side effect called Radiation-Induced, Lumbo-Sacral Plexopathy (RILP). He can’t easily walk into my room to get my attention so when I don’t respond when he calls and he has to come look for me and the entire situation causes a great deal of frustration for my dad. His disability is a constant source of anger and I can’t imagine how many times a day he wishes he had his legs back. I remind him of this when I’m wearing my headphones.
When I put myself in his shoes I try to understand why he’s always so tense but it’s hard to not get angry back when he yells at me about something that seems so abnormal. I want to tell him to get a shrink but I don’t think he would. He’s too self-reliant. That just leaves me here, attempting to be supportive and feeling powerless against his PTSD.
Note from Alex’s dad-
I do have PTSD issues. I have to say that the coping strategy linked below looks like it would be relaxing, fun, productive, etc.
“In the metal detecting community, many detectorists have described how they use metal detecting as a tool to combat and overcome mental health issues, including post traumatic stress disorder. The benefits of metal detecting for PTSD symptoms is backed up by scientific studies as well as personal experiences.
A number of psychological treatments have been found to be effective in helping people cope with the symptoms of PTSD. Some of these include:
If you are experiencing symptoms of PTSD, it’s important that you get the help you need. Many people have recovered from PTSD through treatment. However, unaddressed symptoms of PTSD can get worse over time and may contribute to the development of other psychological disorders, such as major depression, substance use disorders, eating disorders, or anxiety disorders. Ask your doctor or mental health professional for a recommendation or referral to someone who specializes in treating PTSD.
Research suggests that the brains of people with PTSD differ from brains of those without PTSD in two main ways:
Effective treatments for PTSD seem to address these brain dysfunctions by either decreasing the reactivity of the amygdala or increasing the ability of the PFC to calm it down. Therapists who are trained to recognize and treat the signs of PTSD can be much more effective in reducing the considerable suffering associated with their trauma experience. Educating patients about their symptoms and the neurobiology of PTSD can be de-shaming and increase their self-compassion and sense of control.”