5 Things To Do When Your Spouse is Diagnosed With a Terminal Illness

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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.

  1. 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. 
  2. 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). 
  3. 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. 
  4. 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. 
  5. 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. sunnysolitudevictoria@gmail.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.

“Choose to focus your time, energy and conversation around people who inspire you, support you and help you to grow you into your happiest, strongest, wisest self. ” – Karen Salmansohn

Today I finished Reiki Level 1. I received my first 4 attunements and am able to practice on myself, other people and animals. Next month I will hopefully take level 2, and will be able to practice in the hospital. 

Reiki is channeling energy. You have 7 chakras and reiki works to move energy through them. (That’s the basic basic).

We spent the class getting our attunements and practicing. I was paired with our instructor – I feel incredibly fortunate about that. She performed reiki on me and was able to enlighten me on so much. After multiple sessions and clearings she told me that my throat and heart chakras were blocked. Along with my solar plexus chakra a little. This translates to I have a lot of information to share and stuff to say but I am holding back. I just giggled.

She (the energy) was right, I have been holding back. I have so much I want to share and talk about (on both blogs) but I have been holding back. Afraid of what people will say or think about me. But you know what – that’s none of my business. What other think about me is none of my business. I believe and feel the way I do.  I and the information will find the right path and people.

I am so excited to started really sharing with you all. 

– xoxo Victoria

P.S. If you want a reiki experience let me know! 

“In doctor’s-office-lighting, I didn’t tell you I was scared That was the first time we were there … I just pretend it isn’t real I’ll paint the kitchen neon, I’ll brighten up the sky I know I’ll never get it, there’s not a day that I won’t try And I’ll say to you Ooh-ah, soon you’ll get better” – Jack Antonoff / Taylor Swift

ALS is terminal, there is no cure, no chance of survival. We were given 2-5 years. 

When Duane was diagnosed at the end of 2013 there were no treatments. There was 1 pill that could possibly extend his life by 3 months. The combination of the side effects and it being $1200 a month, he decided that the possibility of 3 more months was not worth it. There was scattered information about people living longer, but not much. We knew there was no cure on the horizon and nothing could save him. That was a scary reality.

But we were lucky.

We didn’t spend years in treatment, we didn’t have to “live” in a hospital. There weren’t endless surgeries, or medical trials.

We didn’t have glimmers of hope. When he had a good day we didn’t allow our minds to go to “he’s getting better”, “he’s going into remission” because it wasn’t possible. 

But we were lucky.

We were given the opportunity to live, live the life we wanted while we could, not dwell in the disease. We couldn’t be surprised by a bad test result, negative trial outcome or unexpected progression. 

We had such an amazing life. We lived on our boat, deep sea fished almost everyday, moved to Lake Havasu, Arizona (the place where we always said we would one day be snowbirds), attended 6 weeks of spring break, saw waterless boat races, moved back to San Diego… We had peace knowing we were living our best life possible. 

The last two years of Duane’s life were not easy. They were very hard, but we were able to focus on fun. As long as we kept his pain controlled with could do what we wanted. We fished, laughed and loved.

We were lucky. 

– xoxo Victoria 

 

“you have to find that place that brings out the human in you.the soul in you. the love in you.” – r.m. drake

unnamed-1Hi Everyone!

I hope you have all have survived back to school and are looking forward to the long Labor Day weekend. I thought it was finally time to share with you what Sunny Solitude actually is.

Sunny Solitude was started with the hope of sharing all the caregiving, clean living and self care tips and tricks I have learned over the years … mostly through trial and error. I want to save people time, money and the heartache of having to figure out many of the things that we had to figure out the hard way. I want to share what kept us safe and me sane with all the caregivers that are still struggling. 

I really want to Sunny Solitude to a place where anyone can come and search and find information on anything from clean beauty and organic food to Ozone therapy and Hyperbaric chambers and everything in between. 

I know I have a different belief system and view on staying healthy than many other people and I am excited to share those “odd, weird” things with you. (ex – I don’t own or use a microwave).

I have 3 exciting classes coming up and can’t wait to pass along what I have learn. The first will be Reiki Level 1, then Essential Oils to use in the hospital and finally in November End-Of-Life death doula class. I feel so lucky that these classes are available to me and I am getting the opportunity to participate in them. 

This blog is a labor of love. My passion is clean living and all that that encompasses. Whether it is when we are healthy and thriving, sick and trying to heal or at the end of our lives. I believe there is wealth in knowledge and am so happy to share what I have learned and will continue to learn with you all. 

Again – thank you all for your continued support and love. If there are any topics you would like me to cover or anything specific you have questions about, let me know!  

– xoxo Victoria

“I’ll rise up Rise like the day I’ll rise up In spite of the ache I will rise a thousands times again And we’ll rise up” – Cassandra Monique Batie / Jennifer Decilveo

52696073_617330125394757_2408889075760103424_oBefore Duane passed he said to me “ALS is NOT your cause, BUT you have to help people. There is no cure, don’t fight for that, but when people come to you, you help them”.

I have struggled with this for so long. What did he mean? Why did he say that? Why did he put that pressure on me? I have tried to help people, mostly people associated with ALS (as life would have it), people that have been placed in my path, younger people fighting ALS, younger people caring for those with ALS, younger widows after ALS. I sometimes feel I’m surrounded by ALS. 

I work in a hospital. I help people daily. 12 hours a day I help people and come home exhausted both mentally and physically. People that I sometimes feel don’t deserve help or sympathy, people that caused their own and other’s injuries because of their choices (now I understand what Duane was feeling those days he came home from the Fire Department feeling defeated). But I get up and help, not because Duane told me too, but because it is now ingrained in my being. 

This year I have seen friends pass away and have had other friends be diagnosed with terminal illnesses (ALS is a beast – its amazing to me the people it attacks). Watching this happen has “forced my hand”. Sunny Solitude will now be a wellness, self care,  caregiving, death coaching, vigil sitting place. Ask me your questions. Tell me how I can help. What do you  want to know. What questions do you have? Life? Death? Ask me anything. 

I am lucky. I have had time to process and learn. So many people are not afforded this luxury. I have a few interesting classes coming up and cam’t wait to share this with you. 

– xoxo Victoria