WOW! I tried to put my self back in the moment when Duane was officially diagnosed with ALS. We knew something was wrong and I still remember almost not believing the doctor. Thinking it had to be something else. How does a very physically fit, young fireman get diagnosed with a terminal illness and be given 2-5 years to live? It wasn’t possible… But it was.
Duane was originally diagnosed by a fire department doctor who very nonchalantly suggested it. I wasn’t at the appointment, he was told this information alone with no support – I am still horrified that a doctor thought giving a terminal diagnosis to a patient alone was okay. This is the doctor that pulled him off line, put him back to work – where he tore up his shoulder – and then forced him to have surgery. (Yes I’m still a little bitter).
A few weeks later we received the official diagnosis from a very well respected ALS doctor in San Francisco, and even though we already knew, the feeling of shock and utter helplessness was intense. We had done so much research and knew what ALS was and yet we were still unprepared and had no clue what to do or where to go. We actually just went and had clam chowder and fish and chips on the wharf. We sat, ate and watched the pigeons. I mean what do you do?
Looking back and how we handled the diagnosis I realized there are 5 things you need to do when your spouse is diagnosed with a terminal illness. We did some of these things and I think it made a huge difference the next day.
- Breathe – I believe this so much, it’s tattooed on my arm. Take a moment to breathe. Don’t talk, don’t ask questions, just breathe.
- Take Notes – You will not remember anything that was said after you hear …. “I’m sorry you have…” Write down everything, even something that you perceive as routine or easy to remember write it down. (From this moment forward take paper and pen to every appointment you attend. – More to come on this).
- Ask questions – nothing is too small, or insignificant to ask. There are no dumb questions. You have never been here before. Make sure when you leave you have a contact email or phone number to use when you have more questions.
- Process this together. Don’t rush to tell everyone. Tell them in your own time. You need to process and understand the diagnosis together and what it means for you together. Once you have accepted and have some perspective (could be 3 hours, a day, a week or a month down the road). Once you tell people you open yourself up to opinions and suggestions that you may not be ready to handle yet.
- Have an action plan. When you leave that initial appointment make sure your next appointment is set. Have a “treatment” plan, specialist appointments, social workers, and home health (if needed) in the works. All these things take time and the quicker you can get the ball rolling the better.
This is the basic diagnosis/ first appointment list. I will be sharing more tips and hacks on the blog soon. If you have any questions, suggestions or ideas shoot me an email. email@example.com
– xoxo Victoria
– The photo is from June of 2014 when Duane had surgery on his rotator cuff, labrum and bicep tendon. He never fully used his right hand again. Anesthesia and ALS don’t mix. I will right a blog on that one day.