I LOVE How We Don’t Have To Say I’m Your Favorite Daughter!

 

 

Happy Father’s Day! I am so lucky to have the best dad in the world. I could share hundreds of stories about how much fun I had growing up and all he did for us and the support he constantly showed. I could talk about when I dropped out of college and he came to pick me up and told me “as long as you’re happy, that’s all that matters”.  The love, the childhood we had, the long days spent at swim meets, the road trips (hahahahaha), the family vacations, I appreciate it all … but in the last three years I have learned so much more about what an amazing dad I have. I am also really lucky to have a wonderful father-in-law. 

When Duane was diagnosed with ALS none of us REALLY knew what that meant. We didn’t know what the future held or what we would need to do or how we would need to modify the house. My dad was always there to build something or listen to me cry or talk me through how to fix something over the phone. Lee (my father-in-law) was always there to talk to Duane and tell him to ease up on me and be nice! hahahaha

They are the handiest two people I know – they can do anything! They built ramps so Duane could get in and out of the house, adjusted banisters to allow him to get upstairs for a bit longer, adjusted railings, put together equipment, adjusted equipment and made our life easier. They worked on cars and boats. Their trips to visit us were never a vacation, they were work trips. As much as they did to help us, they also took care of me. When we were living in Arizona I wanted a garden. My dad flew from North Carolina to build it (well to visit and while he was there he built me one). A month later, it was incredibly hot there and my garden was not doing well, Lee came out from Florida and built me a cover for it. 

They came to visit in alternating months. They were never with us at the same time. It was great because they were the only two Duane actually listened to. They were the only ones who could tell Duane that the way he wanted to do something was maybe not the best way to do it and offer a different solution. They were the two he listened to and trusted to build things for us. They would sit with him and discuss plans and then build whatever it was according to what they had discussed, constantly checking in with him to make sure they were “doing it right”. They have the patience of saints. They catered to Duane’s need to still be in control and have a role in what was being done. They listened to me lose my shit when he was being hard me and expecting me to do things that were practically impossible. They taught me new ways to do things so they would still get done but in a way I could actually do it. They were the only two that actually told Duane when he was wrong and didn’t always take his side. They were the only ones that weren’t “afraid” to hurt his feelings and they were the only ones that he couldn’t “manipulate”. Having them there was heaven. 

I am so lucky. I can still call both of them for building, boat and gardening advice. They both text me pictures of their gardens and make me feel totally inadequate with my potted plants pretending to be a garden. They are the best men I know! I hope they both had a wonderful Father’s Day!!!

– xoxo Victoria

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“Don’t you go dying on me!” – Dumb and Dumber

Buddy threw up tonight, more than once. I am terrified he’s going to die. He can’t die. He’s my best friend. What would I do without him? He’s sitting in his bed staring at me like I’m crazy and I’m sitting here googling every possible way a dog can die and seeing if throwing up is a “sign”! 

HAHAHAHAHAHA! I’m nuts. He’s not going to die. He probably just ate a mushroom from the yard or a bug or he’s hot or he simply just had a stomachache. 

I wonder if being this paranoid about death has to do with being a widow… I’m sure it does. I literally don’t know how I would handle another person dying. The fact of the matter is that people and animals die, we’re all going to.

We all need to remember life is short, have fun, love fiercely and be happy. 

– xoxo Victoria

“Being on a boat that’s moving through the water, it’s so clear. Everything falls into place in terms of what’s important and what’s not.” – James Taylor

I had planned to post this yesterday, but for once I fell asleep at a decent time…

June 13, 2017 was the last time we were able to get Duane on his boat. We spent three days getting the boat “ready for a trip through the canal”, a trip I knew we would never take. Caring for Duane was now full time. I was no longer able to work on the boat alone and care for him. Thankfully his brother was in town and was able to help out and take “orders” from him. Between the three of us we were able to get a lot of small jobs done. We even took him for a bay cruise at the end of the day. The turbos worked at the engines synced. he couldn’t have been happier. 

– xoxo Victoria

 

“Trust is defined as choosing to risk making something you value vulnerable to another person’s actions.” – Charles Feltman

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(^ Me after realizing what trust really is!)

I have an amazing counselor here in North Carolina. I wasn’t necessarily looking for one, but I was referred to this woman by hospice. After a few “lose my shit days” I decided that maybe I needed to go see someone, actually my Dad suggested I go see someone. I mean seriously, I spent two years caring for someone as they died a horrible death, I lost my best friend/ husband, I lost the majority of my friends, my job, my home and life. I sold almost everything and moved across the country to live with and be close to my family who I haven’t lived close to in years. I absolutely needed someone to talk to. HAHAHAHA!!!

Sometimes I see her every week and sometimes every three weeks. I had an appointment on Monday and was crying before I even sat down. I had diarrhea of the mouth. I couldn’t stop. Then she said (not word for word…), “You come in here and seem like you have everything together, you have a plan and you are upbeat and act fine, but inside you aren’t, you haven’t set boundaries with people and now you are scared to. You have an issue with trust.” (Me – Duh) Then she went on to explain trust to me and all the components of it… and suddenly everything made sense. It’s about self-trust and trusting others.

She introduced me to the acronym BRAVING. (I did more research when I got home and posted a 9 minute link below the covers the subject in more depth – it is very interesting.) BRAVING stands for:

B – Boundaries – The limits we personally set in all of our relationships that allow and help us to protect ourselves.

R – Reliability – Doing what you say you are going to do, over and over again. 

A – Accountability – Taking ownership for your actions and words. Saying sorry and meaning it.

V – Vault – Keeping people’s secrets, be a vault, share only your own stories. No drama. Expect the same from others.

I – Integrity – Practice what you preach, do as you say you’re are going to do. “Choosing courage over comfort” – Brene Brown

N – Non-Judgement – Being able to tell others what you need without fear of being judged, and extending this to others.  

G – Generosity – Interpreting other peoples words and actions in the most generous way possible. 

WOW!!! When you break down the topic of trust it is way more complicated then it seems. It isn’t a surface level topic or feeling. I now understand why it is so hard to trust someone once they have broken your trust and when someone disappoints you why it is so hard not to forgive, but to move forward in the same manner. 

Knowing this definition of trust would have saved me so much heartache over the last few years. Sitting there in that freshly painted room, crying my eyes out, I realized I made some decisions over the last three years that were not completely made out of love or trust but were almost expected because I never set boundaries and didn’t hold people accountable for their actions or words. I forgive easily, and then never establish my boundaries, opening myself up for the cycle to repeat itself. I cannot go back and change the past but moving forward I can start establishing MY boundaries. I can start expecting people to do as they say they will and start holding people accountable for their actions. I can start making the decisions about who I allow in. Wish me luck!

– xoxo Victoria

“I’ll remember you And all the times we used to Sit right here on the edge of this pier Watch the sunset disappear And drink a beer,” – Jim Beavers / Chris Stapleton

I don’t usually sit here stressing out about an upcoming date. Last month the 8th came and went. This month is different. For the last few days I’ve been dreading tomorrow. I had a rough Monday and some sleepless nights. I have had a headache and woke up with a fever blister. I’ve felt out of sorts and been super emotional.

Tomorrow is 11 months, so close to a year.

Starting tomorrow we start what I am fearing will be my hardest month. There are so many triggers and dates. It’s the 11 month mark, Duane’s 46th birthday is the 29th, July 1 is the day we said goodbye to Gracie’s, the 2nd is when my Dad found out he had cancer (he’s fine now), 4th of July – our favorite holiday and then the 8th of July marks 1 year. 1 year without my best friend. 

I can’t believe it’s been 11 months. The time has dragged on and sped by. The days have been full of crying and laughter. I’ve made new friends and reconnected with old ones. I’ve dug deep to remember the skills he taught me, I’ve relied on people I didn’t know to teach me new ones. I’ve found a place I love. I have learned that most people truly do want to help, as long as I ask for it. Buddy has started acting like a dog again, protective but happy and playing again. I have so many people cheering me on and loving me. Life is good. 

I don’t know what I was or am expecting to feel or what I am “supposed” to feel. There is no guide book for grief or widowhood. There are no rules and there is no normal. I am taking a deep breath and realizing it’s ok to cry, it’s ok to be mad. I wish it hadn’t taken me 11 months to realize I can’t fake strong forever. 

I have so many amazing opportunities on the horizon and know great things are happening around me. 

– xoxo Victoria

“The next time you see a widow or widower try to pick themselves off, dust themselves off and ‘get back out there’. You have 2 choices. You can either sit down and shut up. Or, You can give them a standing ovation. For their heart. For their courage. For their bravery. Those are your two options.” – John Polo

HAHAHAHAHAHAHA!!!  I have not stopped laughing since this song popped up on my iTunes yesterday, like usual, it was perfect timing. I was talking to a newly widowed friend about dating and how you know when the time is right or not right … blah, blah, blah. I don’t know how I became the person to ask (probably because I respond with songs like this, funny quotes and GIFs)! I am super funny! 

I told them it’s a personal choice. Who knows. I certainly don’t. It’s different for everyone and sometimes one week it is right and the next week it isn’t. Grief and young widowhood is a really weird thing. There is no guide book. People DO NOT LIKE it when young people become widowed. They don’t know how to act, respond or even be normal around us. They act as if they are offended and personally affected by it. Like it ruined their world. Divorce, single parenting and plain old hooking are more accepted and acknowledged than young widowhood.

It’s weird. But what are you gonna do?…

I’m gonna wait for my iTunes to play perfectly timed songs and laugh for two days about them.

I am going to make people feel super awkward for asking really personal questions about my life. 

I am going to laugh at women when they complain that their husband didn’t – mow the lawn, take the trash out, drink too much beer or spends too much time tinkering with things. 

I am going to play the widow card whenever I feel like it will help. (ex…getting pulled over, renting a house, buying tools, burning stuff in your back yard, having to do things I don’t want to do, car stuff, boat stuff…)

I am going to laugh at men when they complain their wife didn’t – do the laundry, cook dinner, went shopping again or nags him too much. 

I am going to … eat what I want when I want, clean when I want, do yard work when I want, shop when I want, do housework when I want, get as many dogs as I want, shower when I want, drink as much as I want, stay out as late as I want, sleep as long as I want, watch what I want and laugh at all the people who feel awkward around me and try to make them feel more awkward and uncomfortable because honestly it’s kinda funny!

– xoxo Victoria 

P.S. The best part of this song is the word “BONE” – Duane’s FAVORITE word! hahahahaha

 

“I wasn’t just broken, I was shattered”…”Life’s about joy, life’s about pain It’s all about forgiving and the will to walk away I’m ready to be loved, and love the way I should Life’s about, life’s about to get good,” – Shania Twain

 

I turned 39 last week. I wasn’t happy about it. So close to 40 and not much to show for it, other than a super cool dog and a pink polka dot, bedazzled boat (what more is there really though? hahahaha)! After a week of self reflection and working out again, I can say, wholeheartedly that I am happy … mostly. I do have down days, where I cry and throw things, and I am sure that they will continue to happen, but less often. In the last few weeks everything has started falling into place and I am moving forward. 

I have met some amazing people and made great friends. I have started a new business that incorporates everything I love and am passionate about and am so excited to see where it takes me. I have started to sleep again. I have started to work out again. And most importantly I have learned to accept an apology I will never receive, forgive and move on. I have forgiven people that don’t deserve any more space in my life. I can no longer waste my time on people that don’t bring me joy or contribute, in a positive way, to my life. 

I am confident in myself and what I can accomplish. My main goal in life is to be happy and at peace. Second is to be on the lake as much as possible. 

Thank you all for your constant, unwavering love and support, I am in this position because of all of you. I will continue to share with you; stories from my past and present, good days and bad days. 

– xoxo Victoria

“Every night I go to bed alone With no regrets A piece of mind Lived so much time in so little time,” – Gary Allan / Jamie Hanna / Jon Randall

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Man, everything I write sounds so wrong right now. I’m trying to craft the perfect post, but it’s not going to happen. So here it is….

It sucks to be alone. It sucks to have to make MAJOR life decisions on your own. It sucks to plan your future alone. It sucks to always be the “third (fifth, seventh, eleventh…) wheel”. It sucks to have to deal with everything alone. It sucks to have to do daily life alone. 

Everyone tells me they can help and they are here for me, they are, I know that. But I am still making decisions for the rest of my life, alone, and only I can do that. I can listen to their advice, but ultimately I need to make these choices. The other day I was driving around looking at lots and land and houses, yelling at Duane for dying. Crying because now I have to decide what to do. Make the decisions I will have to live with forever. (I do think a lot of my uncertainty about all this comes from him telling me, for years, that I was always making the wrong decisions and that my ideas were stupid – but that’s it’s own post).

What am I going to do? I have to start being an adult. I’ll be 39 next week. OLD. It’s time to get my shit together. Alone. 

– xoxo Victoria

“Those Who Have The Strength and the Love to sit with a Dying Patient in the silence that goes beyond words will know that this moment is neither frightening nor painful, but a peaceful cessation of the functioning of the body.” – Elisabeth Kubler-Ross

 

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May is ALS Awareness month. ALS TDI (the people that actually use donations for research) is challenging everyone with ALS or caring for people with ALS to write and share the truth and their experience about ALS. My friend Cory is asking people to write their truth and he is sharing that through his page this month and he asked me to write a little about my experience. I didn’t write this for my blog, but I thought I would share it here…

(Also mostly for my Dad – I know there are a lot of typos below… I just wrote and emailed it to Cory, I didn’t proof read, didn’t think I could, with out changing it and that’s not what this one is about!)

– xoxo Victoria

I met Victoria after Duane had passed. Shes a firecracker and has helped us so much venture this voyage. Duane was a lucky man. Read her story.

DAY 4: Victoria Dunstone
The last night I had a full nights sleep was in August of 2015. I know that because it was the day before we officially moved from Northern California to San Diego. That was the last night I didn’t have to wake up to roll Duane or give him meds. The last night I didn’t have to wake up to check that he was breathing, adjust is pillows or help him to the bathroom.

My husband and best friend, Duane, was “officially” diagnosed with ALS in October 2013. We already knew… but I will never forget that day. I will never forget the words his doctor said, the look on Duane’s face, the feeling of defeat. He was 6’2”, 185 pounds, a fire captain, we water skied and fished everyday. We were healthy and active. How could this be happening?

At first we were lucky, his progression was slow but after tearing up his shoulder on a fire, and being forced to have surgery in June of 2014 the progression became rapid. He never used his right hand again. His speech had already started to go and very quickly it became indistinguishable to most. His balance was affected but he still refused a walker. Within 8 months he had had stitches in he head three times, broken his jaw, broken a toe and was completely unable to use his fingers and or hands.

In January of 2016 he finally agreed to a scooter and a manual wheelchair. He could barely talk and could no longer do anything alone. After a few major falls trying to get on our boat, where we lived, he agreed to move into a house where we could have a real shower, kitchen and could actually live easily. We still had an amazing life. I figured out how to get him into our ski boat alone, and onto our pontoon. I learned how to maneuver him from the toilet to the shower, dress him, feed him, and within in a few months manage his meds.

We started hospice in June 2016. Hospice is a the most amazing thing in the world. We had amazing nurses and care teams. They taught me how to manage meds, dose meds and care for Duane on this high level.

We fought a lot. I never did enough. I didn’t do it fast enough. I didn’t do it efficiently. I didn’t do it his way.

We had a lot of toys over the years and Duane took care of all of them. We kept our toys as he progressed, but they needed to be maintained so it fell to me. I am proud to say I can work on diesel engines, out board motors, inboard motors, wire anything that needs to be wired (that’s my specialty). change pumps in all kinds of boats, change a garbage disposal, a dishwasher, fix a dryer, change a carburetor, and pretty much do all the basic car, boat and household fix it jobs. I am very handy. You definitely want me on your team.

We still had an amazing life. I was still able to maneuver his wheelchair on the edge of the dock and close enough to the boat and time the flow of the tide to get him on the boat alone. We would go out fishing. I would drive the boat (it was 47’ long) and run up and down the stairs all day to make sure he was not too hot, not too cold, feed him, help him pee. I would cast out fishing lines, take us to the fishing “grounds”, reel the fish in, fillet the fish and cod the fish. But he was so happy. We were happy.

Duane very, very adamant that he wanted NO aides. No aide to help with the shower, the toilet or anything. I carried him and leveraged his weight against me to take care of everything he needed. I cared for him, our dog, our home and our “toys”. At the end of the day I would fall into bed exhausted. My alarm was set for every hour to get up and give him his meds, if he didn’t need to be rolled sooner. I never slept.

As he got worse I would sit next to him all night making are he was breathing. During the day it would take over a hour for me to feed him a small meal. He would choke and I would have to reach in and pull the food out, pound on his back, tip him over to allow gravity to help dislodge the stuck food. It would take over a hour to shower him and sometimes two days to help him go to the bathroom.

He refused all medical assistance. No feeding tube, teach, suction or oxygen. No eye gaze speech machine, I read his lips but I already knew what he wanted, no power chair no hoyer lift. It was me and him… and our dog. We fell. We laid on the floor crying together coming up with a plan to get hime up. We fell again and now had a plan. We fell again and again and again.

Hospice visited every week and couldn’t believe we were still doing it alone. That’s what he wanted.

We went on crisis care July 5, 2017. I was taught to change his morphine pumps, give him injections into his ports, swab his mouth, give bed baths and keep him comfortable. On July 7 I finally agreed to a catheter, he was in pain, we think he had an infection and he was completely out of it.

He passed away at exactly 12 noon on July 8, 2017. We were alone, the nurse had run out to get family and with my holding his hands and Buddy laying beneath him he took his last breath. It was honestly the most amazingly peaceful thing I have ever experienced.

ALS sucks. But it taught me so much.

Lessons I never would have learned with out it. It taught me patience and kindness and how to love on a level I didn’t think was possible. It taught me that money doesn’t matter, toys don’t matter and false relationships don’t matter. That when life gets tough and hard and you want to quit there is someone always there to hold your hand. ALS taught me that life is short and precious and you need to live everyday full of love and intention. It taught me that death shows you who your real friends are who your family is and who has your back. It taught me that no matter how great of a person you were you aren’t guaranteed a long, healthy life.

ALS taught me that love always wins.

Now I am almost 10 months out and I am still tired. I still can’t sleep. I am worn out and heart broken. I miss my best friend. But I am so so grateful for the time we had together, the encyclopedia full of things he taught me , even though in the moment I didn’t want to learn them. I am thankful I was able to sit with him and love him through the worst imaginable situation. I am grateful I gave him a life he loved.

ALS taught me what love really is.

 

https://www.classy.org/campaign/the-real-als-als-awareness-month/c181258

“They say time is the only healer God, I hope that isn’t right ‘Cause right now I’d die to not remember Every little thing I remember every little thing The high, the hurt, the shine, the sting Every little thing”, – Carly Pearce / Emily Marie Shackelton / Michael James Ryan Busbee

 

Chucks, Diapers, Toothettes, Morphine, Methadone, Wipes, Iv’s, Choking, Gait Belts, Lip Reading, Tears, Frustration, Nurses, Constipation, Disempactments, Enemas, Wheel Chairs, Rolling Sheets, Straws, Syringes, Sleepless Nights, Panic Attacks, 21 Meds A Day, Sleepless Nights,  Plastic Sheets, Carpet Cleaning Machines, Ice Cream, Jello, Applesauce, Infections, Anger, Sadness, LOVE. 

10 months ago that was my daily life. 10 months ago I was taking care of Duane while he was DYING.  Dying a slow, painful death from one of the most under funded diseases there is. 

Duane refused all medical intervention.  No feeding tube, trach, suction, oxygen… Nothing. He was doing this his way. (Like always.) We stayed positive and laughed and joked around, but it wasn’t positive or fun. It was hell. Everyday was hell. In honor of May being ALS awareness month I am going to share with  you the other side of our life. The side we rarely shared. 

– xoxo Victoria