“And I’ll rise up I’ll rise like the day I’ll rise up I’ll rise unafraid I’ll rise up And I’ll do it a thousand times again…” – Cassandra Monique Batie / Jennifer Decilveo

November is National Family Caregiver month.

I was going to fill this post with facts and figures. I was going to talk numbers and percentages, give you stats that, you would more than likely skim over. I was going to share how COVID has changed the face of caregiving. How caregivers are now more isolated than ever, how they are sacrificing everything in hopes of keeping their loved ones lives alive.

And then I realized before I did that I need to share from the heart.

Caregiving is hard. It’s heart breaking and soul crushing, but it’s also fulfilling and full of love and the most honest form of loving someone. It is the most rewarding thing I have ever done. And granted, it didn’t feel like that for the years I was doing it, I can now look back and realize helping someone live a good life is what our lives are truly about.

My needs no longer mattered. Everything I did was for someone else. I spent years devoted to someone else that I knew would not live, someone I knew I would not grow old with. I gave up my life to make sure that someone else lived theirs to the fullest, knowing it would be a short life, but hoping it would be full of love and adventure. I was someone else’s hands, legs and voice. Someone counted on me to be fed, bathed and toileted.

I cried and cried and cried. I fought and fought and fought. I lost sleep, friends, family, myself … I gained wrinkles, stress, patience but most importantly the true meaning of life and love.

I plan on sharing more about the struggles of caregivers over the next few weeks in hopes of bringing to light what these amazing individuals are doing everyday in plain sight.

I spent the day in primary care, dealing with angry and impatient people, coordinating COVID tests and yearly physicals. Being coughed on and talked down to. I’m tired and my vision is skewed right now, so I’m going to call it a night and fondly remember the love that caregivers have and show everyday.

– xoxo Victoria

“We find out what we’re made of When we are called to help our friends in need You can count on me Like 1, 2, 3 I’ll be there … ‘Cause that’s what friends are supposed to do” – Philip Lawrence, Bruno Mars, Ari Levine

This is a blog I wrote last year, but I felt compelled to share again …

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May is ALS awareness month. May is Mental Health Awareness month. May is also Cystic Fibrosis, Lupus, Arthritis, Hepatitis Awareness month … and many more.

Earlier today I posted on Facebook and Instagram about ALS TDI’s campaign “Ask me about ALS”. It’s amazing idea, but most people who are on my “friends” list have seen me posting about ALS for years. They know I am available at any point to talk about and give information about the brutal disease. I assume people in my circle are inundated with information about ALS. The facts and stats are things most of these people have heard, seen and know, they supported me through Duane’s battle, they learned as we learned. So if I post on my platform where does the information go? I am not educating anyone new. 

So instead of just talking and sharing about ALS I opened it up. Ask me about caregiving, death and grief. Ask me about what caring for you dying husband does to your mental state. Ask me what caregiving does to your body, your energy, your health. Ask me what death does to family dynamics. Ask me what telling people you are a young widow is like. Ask me about people’s judgment. Ask me about hospice. Ask me what death looks like, what it feels like to observe it. Ask me what grief is like. Ask me anything. I am an open book. I want to help educate you on anything I can.

Yes, May is ALS awareness month, but there is so much more to ALS than the disease. Ask me about the love. Ask me about the beauty in holding someone’s hand to help calm them. Ask me about the sitting in silence and being at peace. 

For the last few years I have had people contact me weekly asking about ALS, about caregiving, about death. After my post tonight new people contacted me, with questions and their stories. I love hearing them, I love talking to you. I love helping.

I am always here to answer your questions – not just in May.

– xoxo Victoria

“Close you eyes, now and rest, may these hours be blessed … Sleepyhead, close your eyes, for I’m right beside you Guardian angels are near, so sleep without fear Lullaby, and good night…” – Brahms / Karpman

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Did you know that people don’t always die in their sleep? I’m talking about terminally ill people here … people that are 100% going to die. 

I was talking to another doula tonight who is speaking at an ALS event. She wanted to know what it was like, if there are things I wish I knew before Duane’s death or questions I would have liked answered regarding death. Things I wish hospice or doctors had told me. All pertaining directly to ALS. 

I spoke with her for over a hour. We spoke about death and caregiving and ALS. And then I stopped and I said, “As dumb as this sounds, I honestly thought my husband would die in his sleep. I would have bet money on it … that one morning I would just roll over and he’d be dead.” I truly just believed that. I have spoken with other ALS widows and they thought the same thing. Maybe it’s because of our age, or we weren’t in the medical field before. Who knows. BUT we truly, even after caregiving for a dying person, believed they would die in their sleep. 

No. That is not what normally happens. It may happen sometimes. But it’s not the norm. People suffer. People need help. There is pain. Intense pain. There are decisions to be made. The spouse, caregiver needs to make them. We need to end the suffering. 

Let’s talk about death and dying. Let’s open the conversation. I’m here for it…. 

Reach out with questions or things you would like me to discuss deeper. 

– xoxo Victoria

“What is Christmas? It is tenderness for the past, courage for the present, hope for the future.” – Agnes M. Pahro

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I wrote this blog a year and a half ago and its seems fitting to post it again during the holiday season. We need to set boundaries with family friends and work. Sometimes that’s even harder this time of year … Happy Holidays! 

– xoxo Victoria

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!

SuperSoul Sessions: The Anatomy of Trust

– xoxo Victoria

5 Ways The Holidays (Christmas) Has Changed for Me

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  1. I do what I want, when I want. I’m working on Christmas, so I am able spend time with you on Christmas Eve (before 9pm) or on Thursday before I start a three in a row at the hospital – those were my stipulations this year. Duane always worked the holidays at the fire station.  ALWAYS. He thought it was important for the people with kids to be home with them. And I was okay with that. Dinner at the Fire Station is always good!
  2. No pressure to see anyone or contact anyone. I fell absolutely no pressure to see anyone over the holidays. There are people from my past I no longer speak to and I feel no pressure to reach out or to respond to them if they reach out. My priority now is my peace and my happiness. I will not put myself in a position to be uncomfortable or unhappy.
  3. It is not at my house. I currently do not host holidays in my home. I used to LOVE hosting, having my home full of family and friends and laughs and loves. But not right now. My home is a quiet, peaceful, easy place and I will not invite chaos into it. Maybe in the future I will again host, but for now – Buddy and I will enjoy our peace.
  4. No perfect gifts. There are no perfect gifts. Give out of love.
  5. My pink tree. hahahahahaha I have a pink tree covered in mermaids and fish and glitter and sparkles. I couldn’t be happier with it!

– xoxo Victoria