5 Things to Make Sure Are in Order When Your Spouse Is Diagnosed With A Terminal Illness

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If I’m being honest, you shouldn’t wait until you’re diagnosed with an illness or have a life changing accident to take care of these things.

These five thing are not all inclusive of what needs to be done but, in my opinion, are the five main things you need to take care of immediately following a diagnosis. Having these items checked off of your list can help you enjoy the time you have with your family. Checking them off early can allow you to take the pressure off meetings and appointments with lawyers. Checking them off doesn’t force you to scramble to get things done or in some situations not get them done. Taking care of this will also help the transition for your family – elevating stress pertaining to money and paperwork after the fact.

  1. Life Insurance – Do you have it? Who is the beneficiary? Is it up to date? Is there enough to cover your funeral? Is there enough for your spouse to take some time off and keep the household running? 
  2. Power of Attorney and Medical Power of Attorney – They are two different things. They can be the same person or two different people. You should have backups for both. They are both important – I will explain the difference between these in my next blog post.
  3. Medical Insurance / Medical – Healthcare Directive – Do you have insurance ? What does it cover? Can you see the specialists you need? Get the medications you need? Get the equipment you need? Do you have a directive? Has it been filed with the state? Does your Medical POA (see above) understand your wishes? 
  4. Will/ Estate/ Trust – Do you have one? Do you need one? Is it up to date? Is the beneficiary correct? Do you have a copy in a safe place? Does your lawyer know your current situation?
  5. Or not And – Everything you own needs to be in both of your names. It needs to be OR not AND. Cars, boats, homes, bank accounts … both of your names need to be on everything. 

I just wanted to give a brief overview on these topics, I will go in depth on each of these topics in the coming weeks. 

Please feel free send me any questions you may have. Remember I am not a lawyer or a professional in these fields – all of my advice and opinions are based on my personal experience only. 

– xoxo Victoria

“When you focus on the good, the good gets better.” – Abraham Hicks

 

I whole-heartedly notice a positive difference in my day when I spend a few minutes in the morning writing in my prompted journal. Starting my day with gratitude and good intentions sets them in my mind. Having clear, positive and good thoughts puts me on a path to do great things that day (even if those great things are simply not cussing out a coworker). I truly believe this. Setting your intentions in the morning lasts the entire day. And then at the end of the day when you write down what you are grateful for reinforces that you have a great life. There is always something to be grateful for. ‘

Someone sent me “The Five-Minute Journal” while Duane was sick. I’ve been using them for years now. (It actually takes about two minutes, if that a day. I wake up, get my coffee, sit down and write my gratitudes and intentions for the day.  Doing this during the hardest time of my life completely changed my outlook and as my life has shifted and changed, continuing this practice has kept me focused and grateful. 

I tried an “experiment” wrote in the journal and didn’t and I can say that on the days I didn’t write about gratitude in the morning I became frustrated more easily and was irritated buy little things much more than in the days I took at few minutes for myself in the mornings. 

You have nothing to lose and happiness to gain if you try this! 

– xoxo Victoria

P.S. Here is the link for the journal if you are interested. It says they are backordered until October – but it would make a great Christmas gift for someone (or yourself)!

https://www.intelligentchange.com

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