So I don’t think I complain a lot.. maybe I do, but I try not to. I try to make the best of every situation. But tonight I’m sitting on my couch crying. It’s no one’s fault. I think I am stressed about starting work next week (Yes! I got job!) and school and the dogs being alone while I’m at both, a dog sitter I really don’t know (but seems amazing and comes VERY highly recommended) and figuring out how to do my taxes for the first time and a broken car, a falling down carport, a cracking ceiling and well … just life. And it’s been raining and crappy weather for about 3 weeks straight – that really bums me out more than anything else. 

Ever since Duane passed I have this inability to do more than 2 or 3 things in a day. If I try to, I get so overwhelmed I can’t handle it. I have a major break down. It’s getting better and I have learned to work with it, but it sucks. I really have to PLAN – not something I’m used to. I have also become way more sensitive – maybe I’ll do a separate post on that later … 

So tonight I rented “A Star is Born” from Redbox. I was super excited to watch it. But the DVD is BROKEN. This is not the first time this has happened at Redbox. I was fine with it until … I called in and they hung up on me. They said they would not refund my money (seriously it’s $1.75 it’s not about the money – it’s about customer service – but when you ship your jobs overseas….), I need to call back in tomorrow and talk to someone else. I asked why and she got quiet so I asked again and she hung up on me. 

Why cant people just be nice. This was the last time I rent from Redbox. And I know it doesn’t matter. I am just one person. But I remember Duane saying, I’ll never buy anything made in China again, I laughed, but, he didn’t (to the best of his knowledge). 

This is such a stupid thing to be upset about, I know. But sometimes this is my reality. Honestly this is my nonexistent life now! HAHAHAHAHA! I obviously need to get out more. I guess this is just leading into a post about PTSD, Caregiver burnout and life changing events. Maybe this is what needed to happen – a broken DVD – to help me get deeper about caregiving and death and widowhood and the toll that they take on a person. 

– xoxo Victoria

Title quote from this this – I love The Carpenters!!

I heard this song on the radio while I was driving the other day and immediately burst out laughing. It’s actually a pretty sad song but when I first heard it I could only think about the poor person who has Duane’s old number! hahahahahahah They must be constantly bombarded with calls.

People would randomly call or text Duane months, even years after they met him just to touch base with him – I know, I was one of these people. hahahaha He was great person, always there to lend a hand if you needed it or up to go out and have fun. He very rarely said no.

After I was done laughing I listened to the song again and stopped laughing. I really miss being able to pick up the phone and ask him a question, get advice or tell him a funny story. I still talk to him, but he doesn’t talk back. I’m lucky though, I had so many years of him explaining how things work and teaching me how to do things, that I can usually talk myself through a project.

I’m not sure if anyone one knows this (why would they) but I have a few saved voicemails on my phone from him – I didn’t plan on saving them, they are just there. You can hear the progression of the ALS in his voice, all the voicemails sound like different people. But I can still hear him say I love you in them!

– xoxo Victoria

I devote a good amount of my time speaking with caregivers, most of them are young and many of them are in the ALS community. So many of them have the same questions and frustrations. The questions that no one can or will give them the answers to and the frustrations of a broken medical system.

I can’t do much for them but I can talk to them, I can tell them how Duane and I coped. I can reassure them, tell them they are making the right choices, listening to their hearts and that they are doing an amazing job. I can give them everything I know. I can share my story and what worked for us and more importantly what didn’t work for us and what it didn’t. 

In an effort to reach and support as many people as I can I am going to start sharing experiences here. Giving our reasoning behind what we did. How I saw the situation, how Duane saw the situation and what we did to meet in the middle. Most people don’t realize the decisions and planning that go into daily life when you are caring for someone and trying to give them the best life possible. Even a simply trip to Costco takes planning. 

Hopefully the right people will see these posts and get what they need out of them. If you have topics you would like covered or any specific questions please email me at victoriasunnysolitude@gmail.com I would be happy to discuss them in a post!

– xoxo Victoria

Life is good right now. I have pink hair!, and it will be back to blonde for me to start my new job on March 4. I have a side business doing well and a book that’s almost finished. I have a cozy house, two crazy dogs and summer is right around the corner.

I’m sure there will still be hard days, but right now – everything is good. 

– xoxo Victoria

Decisions, decisions, decisions…

I never made any decisions. We needed a new fence – Duane built it, we needed a new roof – I provided popsicles while Duane reroofed the house, a new couch, new kitchen table, new motorhome – Duane picked them out. I didn’t decide anything. I would come home from a week of work and my bathroom would be remodeled or the kitchen would be remodeled. I didn’t have to think about anything. 

It’s kinda sad but really kinda nice. I didn’t have a lot of choice in the way we lived or what we had, but in all honesty I didn’t really care. We had nice things and were really happy.

Once he got sick a lot of decisions fell on me. Major decisions, life and death decisions. I had all my decision making ability sucked out of me in those few years. 

Well now I have decisions to make again. I usually call my dad (he and Duane are both super, super handy and have the same eye for what looks good and what will look janky). So for example when I needed something to store the station wagon and Mastercraft under I went back and forth between a garage and a carport. I sat at the “store” and seriously called my dad no less then 5 times … “What color should the outside be?”, “What color should the trim be?” “How many walls?” … He was answering the phone and I was just saying “Me Again, I have another question”.  HAHAHA 

Well I am getting a job, a real job, and I have two dogs that cannot be trusted to be free range in the house … what was I to do? My parents are not available to come over to help OR make the decision for me. (Before we go any further YES I am an adult and I am totally capable, or should be, of making these decisions by myself, but I don’t. I second guess everything, because Duane was literally an expert on everything, and so is my dad so why would I make a decision?) I was trying to Message my dad (he’s out of the country and ask him questions about a fence vs a dog run … wood or chain link? … black or silver? … include the shed or not? … get a garage? … maybe a fence and a dog door? … maybe just leave them inside in their crates? cameras? maybe just trust them? NO!!!!!

Well I dug deep and made a decision. HAHAHAHA I emptied my “yard equipment” shed, filled it with dog beds and blankets and hired someone to build me a 10 x 20 foot dog run attached to it. It looks pretty good. I haven’t tested how they like being in it yet. But so far they really like peeing on the outside. 

Hopefully between that space and the amazing dog sitter I found, to let them out, Buddy and Lucy will be happy. 

Decision making is hard. My mind can easily decide what meds you need, what dose you need, what to do if you’re choking, not breathing or overdosing. What alternative treatment may work for you, what sauna, oil or constipation remedy may help, but ask me to decide between a fence and a dog run  – give me a week! I’m working on it. I have a flowered comforter, some amazing antique pieces and a pink polka dotted boat.  So yes, I can make decisions. But I am still in the process of second guessing all of the household, daily happening decisions.  

– xoxo Victoria

P.S. My sister told me the other day that she feel like she’s in the “Three’s Company” tv show when she comes over … I said, “Perfect – That’s the look I’m going for”!

Funny story – years ago Duane and I moved to Discovery Bay, he was remodeling our rental in Reno so I started living in California before him so I could keep working there. It was January when we moved in and we had a wood burning fireplace that I used every night. Everyday he asked me if I had bought a fire extinguisher, 2 actually,  everyday I told him no, but I would go out and get them that day… a week or so went by and I still hadn’t gotten around to it. I figured I was careful so there was no way the fire would shoot out of the fireplace and burn the joint down. (Plus he’s the fire expert he should buy them.)

Well one day I was blow drying my hair and guess what happened – the hairdryer started shooting flames out of it. No joke. Flames shooting out of it. Sparkler things were landing on the bath mat and burning holes in it … it was not a good situation. I went out and bought 4 fire extinguishers that day.  I told him that if he just would have told me that that could happen I would have gone out and got them the first day. 

Fast forward 8 years and I have 5 extinguishers in my house, both bathrooms, kitchen, next to the sauna and next to the fireplace. I never leave the clothes dryer on when I leave and always unplug the toaster, hair straightener and coffee pot when I go out. I warn everyone about Christmas tree lights and space heaters. I am house burning down, fire scared. 

Well a few weeks ago my heater broke. It was 55 degrees in my house when I woke up, and in the 20s and 30s outside… blah blah blah…The warranty people had a new one in 48 hours so it wasn’t so bad, but in the mean time … I was using my gas fireplace until I ran out of propane and then I switched to space heaters. 

There were plugged-in in my bedroom. While I was getting ready for bed or in the shower they worked perfectly. As soon as I got in bed they shut off and blew the breaker. I would get up, flick the breaker back on, switch outlets, move them around the room and no matter what as soon as I laid down in bed .. the breaker blew. 

Duane is still keeping me safe and teaching me lessons. 

– xoxo Victoria

P.S. When they were replacing my heater they found a pretty good leak under my house. My dad fixed it, but there was one day with no heat and no water … it was like m=being back in the motorhome in winter! hahahahaha

In late December I self published my personal journals on amazon. This was something I had told myself I would do before the year was up … I barely made it. I wanted to do this, felt like I needed to do this. I needed to try and reach one person, help at least one person who is in the same heart wrenching position I was in. 

These were journal entries I wrote on and off during Duane and my’s battle with ALS. I was so scared to put it all out there. Scared to show everyone who had supported us and loved us through the last few years what it was really like. What I was feeling. What we went through and how bad some days were. 

This collection of journal entries are the opposite of what this blog was. Here I was able to show everyone all the fun we were having. Share the fishing trips, laughs and all the moves we made in such a short time. #thisisals was uplifting and positive and showed people you can do anything. The blog was originally started to keep all our friends and family updated on Duane’s progression and our adventures. 

This is where the favor comes in … If you have read my journals can you please hop over to amazon and give them an honest review please? I am finishing up a real book and would love to be able to use this to help that. I have had so many people (so many strangers too) email, instagram and message me about the journals. The positive messages and the genuine thanks I have received from people I have never met blows my mind. So I guess what I am asking is – if you have messaged me or emailed me a review would you mind also doing it on amazon? It can be anonymous. (It can also be negative! I mean if that’s what you think).

Thank you all for your continued support and love! I wouldn’t have made it though the last few years without you!

– xoxo Victoria

Live life to the fullest and laugh as much as possible. Life is so short and you need to enjoy every minute, tell people you love them and have no regrets. 

When I look at these pictures of me as little girl you can see my loves are deeply rooted…. driving boats, bikinis, jumping off things and the sun, not much has changed. This little girl knew she could be whatever she wanted. She was taught that you are capable of anything you put your mind to and as long as you’re happy that’s all that matters. 

Fast forward 34 (shhhhh) years and what has she accomplished? An almost year round tan? Yes. Drawers and drawers full of bikinis? Yes. A master captain’s license? Yes. But that is about as far as it goes… 

I had so many goals over the last 13 years that I never completed or gave up on. Goals that I was told I wasn’t dedicated enough to make happen and things I wanted to do but was told I wouldn’t be good at. So I guess in a way this is my New Years’s Resolution Blog Post. 

In 2019 I plan to start checking things off my list. Compete in ways I have never competed, finish races I never got to start and participate in activities I might not be good at but have always wanted to try. In 2019 I hope to live the way I always dreamed of living; laughing, loving and truly enjoying myself and those around me. I know life is about compromise and it can’t always be “your way”, but some of the time it’s ok to ask for what you want and put forth every effort to make sure that your desires and dreams are fulfilled. 

Here’s the start of my list…

1. participate in a triathlon 
2. compete in a paddle board race 
3. finish school
4. finish my book 
5. take a boat down the ICW and through the caribbean (that one may have to wait! hahaha)

These are all more than doable. I’ll add to this list as I have time over the next few weeks and add them to my final list as 2018 ends. Obviously I’ll keep everyone updated on my wins and losses (hopefully there won’t be many!) and share my laughs and tears. 

I hope everyone has a wonderful holiday season and appreciates all those around them. 

– xoxo Victoria

I woke up this morning with a huge pain in my chest. My heart hurt. (Let’s be real it was 5am. Getting up at a time I am normally staring at the clock was difficult say the least.) But it needed to be done. I have spent the last 5 months in an intense CNA – Certified Nursing Assistant – program, with the goal of going into hospice care. The funny thing is every clinical skill I was taught was something that I had been doing for years, skills I had mastered in my years of taking care of Duane.

Many people have asked why I decided to go into this line of work after everything I had already gone through taking care of Duane. The only thing I can say is I was drawn to it. I went to college for forensics and had done autopsies and I have my mortuary license. I always said “I can work on dead people, but I would never work on the living because I don’t want to mess up”. But I have always been drawn to it. I remember one day while Duane was sick, we had friends over (one who was a nurse) and she said you would be a good nurse and immediately Duane said “No she wouldn’t”.  That deterred me for a while, but I kept thinking maybe I can. I brought it up many times and family and friends would say, not yet, it’s too soon, you’re not ready. I will say I have many supporters, people that have encouraged me to pursue this from the start, unwavering support. So this year on “Duane’s Day”, July 8, the 1 year anniversary of his passing I decided I needed to get my shit together. On July 9th I walked in to the local college and asked about classes, they started the 10th – I signed up. The next day I started class and knew I had found my passion.

I finished classes a few weeks ago and registered for the state boards. The only day open was December 7th. Our wedding anniversary. Our third anniversary. He has officially been dead for more anniversaries than he was alive.

At first I said it was a “sign”. But this morning, with an aching heart and tired body I saw it as a mistake. What was I thinking?? How could I put this much pressure on myself, today, of all days. I got through the written test and then moved on to the skills. Got through the skills and then lost it. I looked at the evaluator as she said, “you’re done, thank you”, and I lost it. I took a deep breath and the tears started flowing I told her that my husband had passed away last year and that today was our anniversary. She asked me for a hug and told me everything was going to be ok and that I should definitely consider getting my RN. We need mature nurses she said. You would be great at it, you know this and your heart is in the right place.

I left the test happy. Proud of what I had accomplished and ready to start looking for a job. But what she and so many of my other mentors have told me, the idea of becoming an RN is weighing on my mind. Two more years of school versus 5 more months and then a summer of fun. I need to make a decision in the next few weeks.

For tonight and then next few days I am going to sit, relaxed and pleased with my accomplishments. My heart is no longer heavy and I know that Duane was with me today. He told me I wouldn’t be good at anything nursing related and I am, so I guess I am also laughing at the fact I can say “I told you so – you were wrong”! hahahahaha

– xoxo Victoria

I haven’t bought pajamas/ thermals in years. We used to “camp” in the motorhome for weeks at time, sometimes in the snow and freezing temperatures so Duane could pre-fish lakes for upcoming tournaments. I was always cold during the winter – because lets face it – no matter how well a RV heater works, when you’re at Lake Shasta in December and January there is no staying warm.

Every year he would take it upon himself to go shopping and buy me crazy thermals and flannel pajamas. People made so much fun of him! They would ask why he bought me “those” to sleep in. He would just laugh and ignore them. In the spring and summer he went out and bought me bikinis and always made sure I had pink and glitter baits to fish with. 

People kept teasing him … “that’s what you want her to sleep in?” He would just laugh and joke about the bikinis being the trade off! … Then one day during a fishing seminar he told everyone the key to getting your girlfriend/ wife to fish with you, camp with you and stay with you in a tiny motorhome for weeks at a time…

“Keep her happy. Buy her the warm clothes, the cute bikinis, books, magazines, and whatever baits she wanted. If you want her with you, she needs to enjoy it. Spend some money to keep her happy and she will always come with you”. Everyone just looked at us. I was a staple at every tournament and every event. No one could understand why I always went, why I got up at 4am and made lunch for everyone, why I stood for hours in the rain waiting for him to weigh-in. Because I liked it (mostly). Because he made sure I was comfortable and dressed for the weather so I would enjoy it and keep coming. He made sure that at least one night while we were gone we went on a real date, smelly and tired , but we still went. At that same seminar he had the chance to “fish” in the HUGE tank at Bass Pro, but instead of him taking the cast, he called me up and had me do it. The fishermen couldn’t believe that he didn’t take this opportunity. He went on to explain, that even though he wanted to, he knew it was a one time thing and he wanted me to enjoy the HOURS we had spend at Bass Pro and knew this would do it. People laughed and chuckled and then realized he was right. 

It’s getting colder here and I realized I need pajamas, I have never really thought about it, they were always just there. So I went in my drawers to check my size, I didn’t know –  and ordered my own. 

I think he would have approved of my choices. 

– xoxo Victoria