Lurker > Jeff_AKA_Snoopy

500!

499 posts in eh?

Thanks for all the support everyone. It has been a trip. Maybe one of the longest topics to get to 500 I've ever made. Hopefully I don't make it to another 500 before my wife is allowed to use MAID.

I think for the next topic (Yes I will continue it) I might try every couple days to write a little story of our time together. How we met, some wonderful memories we've made together. Rather than it being pretty much devoted to this exhausting process, also a bit of a personal memorial of my wife for me as well? I dunno, remind myself every day about those little things I love about my wife.

My wife beat Tears of the Kingdom today. Something I love about her is that she wants to race to get to the end at times. (Funny, someone who wants to race to the end getting MAID? LOL!). By her own admission I think she maybe got to like... 65% completion? She just hit a point where she was like, "Yeah I get it, let's beat this fucking game" and just went. Her first attempt she didn't even have the Master Sword fully back in her power, which again is just shocking to me.

She's the kind of person who will read the ending to see if the journey will be worth it, ya know? She also LOVES when she knows the ending and watching others try to piece it all together first. She adores when I theory craft for something she has completed already. She struggles not just blurting out if I'm right or wrong, but has gotten a lot better over the years at just smiling at my commentary and shrugging her shoulders.

=D

From my wife's perspective the second assessor was not very good. Seemed more concerned about her personal life what I think of what's Happening and how she even heard about the program in comparison to her physical ailments. He is gone next week so we won't hear until the 26th what his determination is. My wife is not feeling very positive on it. Feels very much like what the other doctors were like who declined her a few months ago.

She meets with the first assessor over Zoom on Monday so maybe she will have some ideas.

Second assessor will be chatting with my wife in the morning. She is a big ball of anxiety and very nervous. Having already heard a no from others she is assuming it will also be a no once more.

It is weird to say that I am hoping for a yes, but that is the reality of the situation. I will update the topic in the morning when we know more.

TaylorHeinicke posted...

I'm a little confused. It sounds like you already have a set date, but it's still contingent on a second assessor?

It's a complex situation. The first assessor is having us plan for June 25th as being the date she passes away. Originally we had a second assessor set in her office on the 23rd, but he had to step aside.

She can't SAY it's going to happen because the second assessor COULD disagree, but she seems pretty confident.

With the second assessor changing, it is another wrinkle. But we haven't been told to change our plans yet.

Might be hearing from the second assessor this week. The one who was gonna do it had to step aside due to some personal stuff going on, so maybe this new one will do it over video call and we don't have to do a trip up beyond the actual use of MAID

SHRlKE posted...

Just found out my grans going to be gone in a few weeks today so while the scale is different Ill be joining you on this fucked yo journey. Sigh.

That is so unfortunate to hear. Sorry that you're going through that.

2 weeks away or so. So many different emotions

bsp77 posted...

Yeah, I get it. There are some lines we are not willing to cross. And I am definitely anti-suicide in 99% of cases, but I get the nuance with her situation.

Is your own health journey still going well? I know you have cut down a lot of weight.

Not too bad all things considered. I've been snacking a lot lately as that is my ultimate coping mechanism. But I'm not in terrible shape and trying my best to do things within reason.

Well the meds are not available through legal channels. My wife also does not want to commit suicide? Like, this IS sort of a form of suicide but it isn't. It is a legal thing and justified by medical professionals.

https://youtu.be/u6wOyMUs74I

I know my wife is still with me now but this song hits me already. Fuckin Ed Sheeran. XD

Edit - Well, now that we are doing sad songs, this one too.

https://youtu.be/KtlgYxa6BMU

DarthDemented posted...

You will be buddy. An absolute wreck. Take your time before driving home. Don't let anyone rush you through the grieving process or try to set you up with someone if you're not ready yet.

I'm traveling out of town so I'm gonna be flying back rather than driving. I'm sure my older sister will pick me up from the airport when I return.

DarthDemented posted...

you are correct. My wife and I had the conversation about moving on several years before we even knew I'd be in this situation and she always insisted that I move on and find happiness with someone else and I have. As far as making things easier I don't know for sure. For me it was hard. Really hard. The terror of that night comes rushing back every time I have to recount that night.

I think the slow process of all this happening and my wife being able to choose how she leaves this life will make a difference. I know this is what she wants, how she wants it, and is in the frame of mind to make those decisions. From the sounds of it you literally get the same meds you get if you are going under for surgery, and then when you are under the gas you get meds to stop your heart. Literally you just go to sleep and that is it.

I say all those before it happens. I could very easily see myself just being a wreck.

I'm trying my best to embrace the fact that things will move on. I will move on. We don't have kids so I won't have that element to like, both enrich my life but also remind me what I had you know? I can't imagine having to become like a single parent (though I believe you are in another relationship or were a few months ago) beyond all this. Like I imagine it would be both terrifying and yet the one thing that really pushes you to try to be your best every day, whatever best is at the time.

I've got a week off planned for after my wife passes away to set things in order. I'm already planning on maybe getting a new mattress. My parents have a fairly new leather couch so I will be able to replace our old one. A lot of her older clothes have been donated already, etc.

I am thinking of creating an email to send to my employees to just get everything out there. My immediate colleagues and my bosses know what is going on and have known for months my journey. I think being able to be open and talk about it with my employees and just take the time to do all the awkward conversations and reactions of others right away might help me move on quicker?

DarthDemented posted...

My situation was different. It was thrust on me. I didn't have the prep time you've had. Yes my wife was in a shitty situation where privately I thought death was better for her than laying in that bed 24/7. When I was presented with it so suddenly it crushed me. You know how you see in Hollywood where the characters drop to the floor crying or wailing and you think "now that's a bit much isn't it?" Well it happened after she left with the funeral home director. I understand your desire to be out of the caretaker role and back to your old life but once it's gone you don't know what to do with yourself. I should've really started plowing through my video game back log but I just watched TV and ready to get up to help her knowing it was never coming. Getting out of that head space is harder than you think. You'll probably stop sleeping in your bedroom. I let my son have my wife's bedroom, the master bedroom btw, because that's where it all happened and I just couldn't be in there. I hope I answered your questions. I did kinda wall of text here. I hope you two make your remaining time the best ever and she goes out happy and feeling completely and truly loved. Btw how did that tattoo design come out? I kinda lost track of that one.

I have been working with my psychologist about the whole like... who am I outside of being a caregiver to my wife. Like, realistically, I have lived and worked pretty much exclusively to take care of her for the past 6-7 years. Beyond being a widow after my wife passes... like, who am I? I know I am good at my job, I know I am a good friend, a good member of my family. But who am I outside of that? I'm not co-dependent or anything like that, but I've definitely become the caregiver to my wife more than anything else.

It scares me that people who know me as a pair will only really know me moving forward as a widow, as half of a whole.

DarthDemented posted...

Hey buddy I've been down the widow road. If you need someone to talk to I can DM my number, my kik, my snap, or discord. It's gonna be rough buddy. I've considered you a friend since our days on LUE and it helps to sometimes have a friendly stranger to be sounding board. Especially someone who's been through it.

My friend, I definitely appreciate it. I might take you up on that offer.

Did you feel... ready for it? Like, I feel like I'm ready for it. I'm at peace with it and in many ways looking forward to being able to enter the next phase of my life. I'm not "happy", but more like I am ready to no longer be a care giver to a horribly sick wife.

Thanks for the well wishes!

We are into our last month together should everything work out how we want it to go.

SHRlKE posted...

It sounds crazy youd have to take this time off from your PTO. Surely your work should give you it as compassionate leave?

Oh yeah, I will get Bereavment leave.

I did want to thank everyone for letting me use this space to just work out my thoughts and feelings on everything. It is nice to have a cheering section as well as I work my way through this all.

I've taken June 21-30 off from work to take my wife to Vancouver and give myself a week off to just kinda get myself adjusted to my new life? My family all lives in the city. I have a brother, two sisters, both my parents, 2 nieces and 4 nephews. I have an amazing network of support.

I am as prepared as I feel I can be in order to get through it, you know?

Met over Zoom with the first doctor. She pretty much said it will happen without saying outright that it is a guarantee because she legally can't say that. She was asking if there was a spot in Vancouver she wanted to die, etc.etc.

One more month to the day basically.

I'm oddly at peace with all this. It is horrible what has happened to my wife and I. Having an end date for my wife's suffering provides a lot of comfort.

I have been thinking recently that I'm not only losing my partner but also my best friend. I'm far more scared to lose my best friend over my partner, you know?

SHRlKE posted...

Youre an inspiration. Youre going to feel whatever youre going to feel. There is no rule book. The fact youve kept it together this long is a tribute to your character. When you need help dont be afraid to reach out. There is no shame in that. Yes youre wife is going through hell but so are you. I can only speak of personal experience but when I had a relative who was in hospital on end of life care for a few months its mentally exhausting and those feelings you mention are completely normal. Its weird. When you see someone you love going through this I felt the grieving process started before they were even gone. For me every time I saw my family member it was like going through that pain every time. There will be a sadness if youre wife does go but there will also be a certain weight lifted as well. Speaking to friends and family this is also natural and not something to beat yourself up over if the time comes.

Absolutely. I've been in grief since I created this topic... so like 8 months now?

I've been working all weekend but despite that it has been a fairly nice weekend too. Can't ask for much more than that.

Making some travel plans to get to Vancouver. Maybe go a day earlier to check out some stuff?

Retirement party was good. We are doing Lobster Night now, fundraiser for a local charity.

Got 4 new tires since I have an AWD. My dad paid for it since, in his words, he was the reason I braved the terrible roads. Lol!

My dad is pretty decently well off so it's fine. XD

Sheesh, went to my hometown for my dad's retirement party and blew two tires on the highway. Ugh

Had a good session with my psychologist today. Got to say some things out loud that filled me with some guilt to feel.

It is nice to just say those things, put them out in the ether, and have a professional let you know how common those feelings are and how valid they are.

Lorenzo_2003 posted...

Man, that is rough.
Do you also have to contact their next of kin, or otherwise put their affairs in order?

Nah our higher management dealt with that.

We are doing a ceremony as an organization tomorrow. We will have a traditional feast afterwards

I went through some fairly significant trauma this week. I was one of the first responders to one of my youth (I'm a supervisor for group homes designed for at-risk teenagers) who was successful in a suicide attempt.

It's been a rough week. Oddly I've been the most put together of my colleagues and they've been leaning on me for strength and support. I think the process my wife and I have gone through has led me to be far more understanding and like, capable of dealing with suicide.

Telling my story here helps me to process things.

Guilt is one of those things that is hard to process and work through, especially when it is guilt about being a person. Having professional help from my psychologist has been great. He reminds me to take the personal out of it and give myself the same advice I would give another in my same situation.

It's still hard to do though. To not feel guilty for human thoughts and feelings when you feel like you have to be more than human for someone you love.

But that isn't fair to me and my wife is never asking for me to be more than myself.

It can be so hard to live in the moment sometimes when you know what is going to transpire later.

All weekend has been watching hockey and baseball and anime, playing some video games... nothing different than any other weekend. We potentially only have like 8 of these left.

Thanks for all the positive vibes guys.

Saskatchewan is a no go, our appeal was denied. So it means we will pursue out of province to BC. Some decent news on that front is that we will plan to go down to Vancouver on a Friday in June to do the second assessment, and assuming they give it a yes, they can do the procedure on the Sunday. The creamation service said they could complete their process and basically all they need is my payment and then urn and ashes would be mailed to me.

So near the end of June this process will likely be completed. Fills me with so many emotions when I think about it. I am both fearful and nervous but also like, ready for my wife to finally get what she wants and be able to move on with the next part of my life.

I still struggle with feelings of self loathing about even admitting to those feelings. Like I'm a bad person for being ready to move on and not be a care giver to a slowly dying wife. I am just one person and as strong as I know I am, even I will eventually hit a point where I just cannot be the care giver that my wife deserves. I am more fearful of that then the passing of my wife.

Like, if they decide my wife doesn't get MAID in June, I don't know how much longer I can keep up with being the amazing care giver I have been. How long can I do this effectively?

Absolutely.

It's been a long grief process and I almost think that when my wife is finally allowed to do what she wants to do, I won't have some big grief breakdown or anything? Like... this process has been ongoing for months and I've made my peace with it? I want my wife to get what she wants and allowed to stop living in pain.

There is something to celebrate in that too, you know? We all die, some of us don't make it to 25. Some make it to 95 without a thing wrong. Some live in pain a bunch of their lives.

I've always been a huge proponent of bodily autonomy, and while you don't ever expect to have to show your conviction to your thoughts on something that is so nebulous for a lot of people, I am actually proud of how my principles held up to what I truly believe.

And no, I take no issue with adding to this topic at all. Everyone has been so thoughtful and genuine and it warms my heart.

I feel like I'm doing OK all things considered.

I'm heading into work daily, I'm still putting in good work and everything like that. Emotionally, spiritually, logically, I feel I am prepared to be a widow, all things considered. I haven't seen my psychologist in a little bit now (I only get 500 dollars a year covered and each session is 200) but he really helped me to work through some shame and whatnot I had with some of my feelings.

It is true that I will lose the love of my life and that it will be devastating. It is true that will fundamentally change my life in negative and positive ways. It is OK to be ready to give up that care giver role that I have had to take on for the last five years or so. It is appropriate for me to prepare myself for what life is going to look like when my wife passes away (not if, when).

It is also true that I have been mourning the loss of who my wife was for some time. Not to say I do not love the woman she is, but her health conditions have changed the trajectory of who she would have become had that not been the case. I've been a primary care giver for a disabled wife for many years now and I've only in the past few months allowed myself to be comfortable discussing how difficult it has been on myself.

When I was seeing my psychologist last year I felt a lot of self hatred and shame for having any sort of negative feelings about the situation. I would always downplay how difficult it is to be in MY position by defaulting to how terrible it is for my wife to live it. I'm far more comfortable now in expressing how difficult it is to be a primary care giver for a disabled partner. This is not how I envisioned my mid to late 30's, and it can be true that it is both a burden, and a burden I choose to take on to help my partner complete her journey towards laying down her own burdens.

Both of those things can and ARE true, and it took a good amount of therapy for me to give myself the opportunity to express that and feel it.

I mourn daily the loss of an idealized future that we foresaw together. I mourn the loss of the person my wife and I wanted her to become as we aged together. I am a very strong person and for lack of a better, healthier word... I can take it. And I will until my wife gets MAID and is allowed to die with dignity.

What that will look like once we have approval on both sides? I have no idea. Focus on helping my wife cross the finish line. Celebrate an amazing dozen plus years together, mourn the loss of my wife and best friend, and then start the journey anew.

Still no word from our appeal here in Saskatchewan. My wife would prefer not to travel to BC if the appeal works here.

Lorenzo_2003 posted...

Is there anything like this in the States?

I believe a lot of families would appreciate this service during such trying times, but of course without the extra stresses of bureaucracy and such.

There is a few states that do. I think like... Connecticut maybe? Philip DiFranco did a news story on it recently.

SHRlKE posted...

What a head fuck.

Yeah. It's been a trip for sure.

So the doctor in BC has said she believes my wife can utilize MAID. Now we need to have a second assessor in BC agree with it too.

My wife is chatting with MAID doctor from BC this morning. Dying with dignity told her to try a doctor there and they are doing a zoom meeting this morning.

I had a crazy conspiracy theory once, what if blood donations were actually a cover for a peace Treaty government officials made with vampires centuries ago? Like we said we would give them blood "voluntarily" to feed their ranks.

Thus why we did blood letting for so many years.

My wife is getting some blood work done this morning. 10 vials. Wow.

We went to see her Ehler's specialist out of province and got a stunning sort of change in his stance moving forward. He was asked for his medical opinion back in December when we were doing all this stuff and he wrote that for my wife's particular Ehler's diagnosis he did not feel she was suitable for MAID.

After seeing her yesterday and getting more information, he said that if his latest ideas don't pan out he would help her get MAID. Which is... stunning, quite frankly. We thought that with how he wrote his medical opinion he was just against it on principle... seems he has changed his mind?

Lorenzo_2003 posted...

Damn, thats rough.

Maybe Im misunderstanding who is engaging in these daily interactions, and of course we dont really know your marriage, but it might be time to take the reigns and handle them for your wife.

The problem is I work 40 hours a week so sometimes if we need shit done, I'm just at work at that time. If we need more from our landlady I will step in for sure next time because this is ridiculous.

Oiy.

So my wife contacted our landlady about how our kitchen faucet was leaking and whatnot. Normally she has been a bit annoyed with my wife's allergies but overall good.

Comes over and has a new faucet installed that has like, almost a shower head like end with rubber, which my wife is allergic to. My wife let's her know that wouldn't work for us and our landlady just blasts her about how she doesn't have to accommodate allergies, and how can she live with these allergies, and then went into how she isn't making any money and just unloading all sorts of shit about it all.

She then just reinstalls the old one and tells us to buy what we want and take it with us if we choose to leave our place. When my wife said that she would be happy with a simple one like was on it now, she's like, "I fucking hate it and I want the $300 one I purchased. Now I might not be able to return it and I'm out all that money"

These sorts of interactions are just another thing that makes my wife not want to live... it's just so dehumanizing for her and makes her feel like she is nothing but a failure.

The hell of it is that like... all the shit she was complaining about is shit she has control of. You don't want us there, don't have us sign the lease. Oh right, beyond these accommodations you've never heard a peep from us and we've never been late with rent. We've never questioned the lease and what you are comfortable with. We are excellent tenants. She never even comes over unless something breaks down. Hell, when her shitty washing Machine broke down we saved her thousands of dollars by spending hours with a wet dry vac and fans to ensure there was no water damage.

Like I get times are tough. Don't take out your financial frustrations on my wife.

Lorenzo_2003 posted...

What would be the best case scenario?

He decides my wife should be given the opportunity to use MAID.

I have an update.

My wife had decided to appeal the decision since she felt she wasn't given a fair second assessment. Without really any warning the dude who runs it all called my wife at 2pm yesterday, said he was gonna come over to chat with her, and then did just that.

I was at work so I wasn't there with her. From my wife's perspective she feels like he cared more than the second assessor and seemed a lot more thoughtful.

We shall see what comes of it.

It's alright guys, not like it isn't on my mind. We still await word from BC doctor to see if they will try to take on the case.

Likely gonna be some time before another update. Not sure if I'm gonna keep the topic updated continually or make a new one later? Lol

My wife will try out BC. Someone from Dying with Dignity said that was likely her best opportunity.

FortuneCookie posted...

That's terrible. Would you have to relocate to another province?

Every province is different. Some say they will only do it for residents, others say as long as the medical professionals agree with it, you just have to BE in the province to have it done.

Just to give a bit of an update I guess.

My wife is going to look into other provinces potentially... as each province has their own rules and whatnot about it. Kinda seems like the door is shut on it here until either her condition deteriorates or mental health factors get added to MAID next year.

I'm obviously very conflicted about it all. I love my wife dearly and I love the time we spend together so the prospect of having more time together does make me happy. That being said, I know she continues to suffer and feel like a weight on me (financially it is very difficult) and she doesn't have options for pain management or even for depression really.