Why I Decided To Go Down The Doula Path?

If you’ve been following me or talking to me lately you may know that I recently finished my training to become a Death Doula or more gently called an End-Of-Life Doula. Most of you are probably wondering what it is, why I’m doing it and if I’m crazy! hahahaha

First, yes I probably am a bit crazy. But this is what I know how to do. This is the only work I truly know how to do. This is the service I can provide to people because I know it. I’ve done it. I’ve lived it and I’ve come out on the other side. I believe that having a Doula would have been so beneficial to Duane and I, and our families. Hospice was amazing, but Hospice is overloaded, they have so many patients they can’t spend an extended amount of time with any of them. They are running from patient to patient, often times putting off certain patients to run to the more critical ones. 

I have been trying to figure out how to help in a way that makes sense to me. I have always said I never wanted anyone to feel the way I did. So I started working with caregivers. I started the Young Spouse Caregivers Alliance. I answered calls and emails, I talked to crying caregivers, dealing with their spouses impending death, talked them through family problems, caregiving problems and really just listened to them cry and vent and offered anything I could. I LOVE doing that. I love being the person I wish I had. 

One main thing was missing from all those conversations, the elephant in the room. Death. No one asked me about death. We all knew it was coming, and coming soon. But we didn’t discuss it. It was avoided, always. I was willing to share and talk about it, I really am an open book. I think when you are so deep in the caregiving process all you can do is focus on the now. The now takes all your energy, plus some. The now is so intense you can’t let your mind wander to what will happen next. For survival purposes. 

I have always been willing to share about my experiences, caregiving and death. I was Widow of the Week last year over at the Hot Young Widow Club. I shared our story and pictures of the good, bad and ugly. I still get at least one message a week from someone who randomly found me on there and wants to talk about death, ALS or caregiving. They message for guidance and mostly for me to confirm what their doctors already have … that they don’t have ALS. 

People are obsessed with death – obsessed with avoiding it at all costs! We eat healthy, exercise and try to get enough sleep. Unfortunately those things are not always enough. People die, healthy people get terminal disease and die. 

I struggled with how to help people at the final juncture of their caregiving journey. How do I help them and their person transition in mindset? How do I help people accept that death is going to happen, sooner than they originally planned, but that you can still have a good life? How do I help at this level?

I googled and googled and saw so many people suffering at the end of life. Caregivers and families and the patients themselves. They struggled with giving up, conceding to death and still living the best life possible. There are no guide books, no one wants to talk about it. I remember sitting on the couch late at night trying to figure out how to keep Duane loving his life, living the best life he could, managing his pain, trying to ignore the disease progression all while knowing he was dying. I remember being scared and feeling so alone. I hate that there are other people feeling like that. I have to help them.

So for right now this is part of my journey. I don’t know how long it will last, or what direction I will ultimately to go in, but for now I’m here to help in caregiving and death. Reach out if you have questions. 

– xoxo Victoria 

P.S. Tomorrow I will go into detail about what a Death Doula does and how I plan to tailor my business to fill a need.

“When you’re weak, I’ll be strong When you let go, I’ll hold on When you need to cry, I swear That I’ll be there to dry your eyes When you feel lost and scared to death, Like you can’t take one more step Just take my hand, together we can do it I’m gonna love you through it.” – Jimmy Yeary / Sonya Isaacs / Ben Hayslip

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This is hot topic right now. I am seeing and hearing about it in multiple groups and forums. It is never talked about and no support is given to the spouses who make the unimaginably hard decision that they don’t want to/ or can’t care for their spouse.

This is the link to the above article (https://thecaregiverspace.org/i-dont-want-to-be-my-husbands-caregiver/)  and I will all so cut and past it in its entirety below … just in case Facebook finds away to disable the link. I hope they don’t. I can only guess the people that reported this article as abuse have never been in this horrific situation. 

Caregiving for your spouse is hard. When your partner is diagnosed with a terminal illness or suffers a life altering accident your entire world changes. It is almost always assumed that the spouse is going to take on the primary caregiving role. Many people, more than you can imagine, do not want to do this. Some didn’t have great relationships before the incident, some have their own health problems that make the physical job of caring impossible, some have dreams and desires they don’t want to give up to become their spouse’s caregiver. We are not in their situation and we do not get to judge them.

Total care for your spouse. This is not the life either partner every dreamed of. Neither of them went into the relationship thinking they would end up caring full time for their spouse. In our wedding vows we say “to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part”. But how many of us let our minds wander to the worst case scenario? How many of us think about a life full of doctor’s appointments, hospice care, hospital beds, pee, poop, meds, insurance claims, medicare, wills, POA …. when we say those vows? We never think the unimaginable will happen … and sometimes it does. 

It doesn’t make a person horrible when they are not capable or not willing to be a caregiver. It doesn’t make them selfish or mean. We can’t judge someone else’s choice. An accident or diagnosis doesn’t just affect the person, it affect ALL of those around them. 

Some people start caring and the decided they can’t do it anymore. They want to life their life, they have dreams and desires. They have immense pressure from the outside. People telling them they are doing everything wrong, not doing enough … There are money struggles, intimacy struggles, family issues that are more intense than anyone can imagine. 

There are so many reasons that people decide to take a step back. And it’s ok. I support you. If you ever want to talk reach out. I’m here and had my own very complicated caring situation. 

– xoxo Victoria

 

I don’t want to be my husband’s caregiver

Yes, we both said our vows. But how many of us break them? Most of us, at one point or another.

Would he do this if our roles were reversed? Absolutely not. He’d be out of here in a minute.

He was cheating on me when his spine was crushed in a car accident. I have no idea where he was going that afternoon. He was supposed to be at work. It could have been a work meeting, a lunch time errand, whatever. But obviously I’m going to believe it was to meet her.

I had just found out, but hadn’t let him know I knew yet. I was deciding what to do; deciding if I should leave him or not.

And then I got the phone call.

It’s just assumed that I’ll take care of him. No one asked. I’m not sure how I would do it, though. I’m told it’ll take months for his disability to through. It’ll be years before we see any money from the lawsuit, if we ever get anything. I’m out on FMLA for now, but we can’t survive without an income. We were just barely getting by before.

I try not to think about the medical bills that are accumulating at this moment.

They keep talking about how they’ll be sending him home with me once he’s stable. As if I should be excited. I wasn’t sure if I wanted my husband home with me, but this isn’t really my husband. He’s like an ornery child. The personality changes could be temporary or permanent. He could regain the ability to do certain tasks on his own, depending on the severity of his TBI and how much his body heals.

This is not what I want for my life.

Before the accident my friends were telling me he didn’t deserve me. That I should pack up my bags and go. Or kick him out and fight him for the house in the divorce. Now those same friends are acting as if I should end my career and spend the rest of my days wiping his ass and fetching things for him. As if that was God’s plan for me.

Is it even an option to say no? How will I support us if I have to be here with him around the clock? Where will we live once we declare bankruptcy? What will happen to him if I leave.

It’s funny how once someone gets themselves smashed up they are made a saint. No one can say a bad thing about him now. But I will. He was a terrible husband.

And I don’t want to give up my life for his.

Anonymous

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.