Current Events > My wife is applying for MAID (Medical assistance in death).

(+) Yeah! (+)

I told my family about the situation today during our Thanksgiving (Canadian). My parents were not here as they are out of country, but my siblings and their partners and kids and whatnot.

They were wonderful as I anticipated. They are supportive of the decision we have made as a couple and just want to help us however possible.

I am truly blessed with this support system. It is always a hard conversation to have. I start talking about it and explaining it and I break down into tears about it... which is human.

Youre family sound amazing, glad they have your back.

spikethedevil posted...

Youre family sound amazing, glad they have your back.

They are amazing, absolutely.

Told a friend of ours about things yesterday at a group outing. Went to Dim Sum and it was with like a group of 13 people. He asked how my wife was doing and I let him know what was going on. I didn't break down into tears over it so maybe it's getting easier for me to talk about?

Jeff_AKA_Snoopy posted...

He asked how my wife was doing and I let him know what was going on. I didn't break down into tears over it so maybe it's getting easier for me to talk about?

I guess only you would really know and it might be hard to figure out now, while everything is still happening. In my situation, it was easier to talk about the medical details of my loved ones condition because it was objective and felt like I was reading out of a book. But when Id talk about what that person meant to us, friends and family, then Id be overwhelmed and in tears.

Im really sorry for what your wife is going through and Im glad you have each other to lean on.

So added heartbreak to all this right now.

My wife was told that the doctors who do these investigations are not knowledgeable enough to make an accurate call. My wife assumed they were asking to get permission for them to talk to our out of province specialist about it. Instead they said they will not continue with the process until she is seen by an in-provincr professional. Which doesn't actually exist. So they are gonna send her to someone kinda related. Who we couldn't see awhile ago because they normally have a two year wait list.

My wife is devastated since she's basically having it held against her that our province doesn't have resources. It is ridiculous. I am utterly heartbroken for her and kinda incensed about it. They do mark it as urgent but ultimately that doctor decides when to see her so.... *shrug*

Jeff_AKA_Snoopy posted...

So added heartbreak to all this right now.

My wife was told that the doctors who do these investigations are not knowledgeable enough to make an accurate call. My wife assumed they were asking to get permission for them to talk to our out of province specialist about it. Instead they said they will not continue with the process until she is seen by an in-provincr professional. Which doesn't actually exist. So they are gonna send her to someone kinda related. Who we couldn't see awhile ago because they normally have a two year wait list.

My wife is devastated since she's basically having it held against her that our province doesn't have resources. It is ridiculous. I am utterly heartbroken for her and kinda incensed about it. They do mark it as urgent but ultimately that doctor decides when to see her so.... *shrug*

Those motherfuckers. Damn them to hell.

Brutal, dude. What Province are you in? I hope it's not Quebec cause I'd want that option if my wife was dealing with the same issues.

That's fucking infuriating and completely unacceptable.

Have you considered reaching out to advocacy groups?

They're special interest organizations (usually nonprofits) that support people in their population.

They might have programs to help, or just to connect you with social workers who know the issue and who to talk to.

I don't know Canada's system well, the only one I can find is Dying with Dignity Canada.

You can try giving them a call and ask them about their advocacy programs to support clients who were wrongfully rejected.

4164863998 is the only number I can find.

All the best.

The hell of it is that it isn't even that she was rejected. If she is rejected cause the law/program is not written in a way she qualifies now, I mean fine. We would disagree and appeal but that we would understand.

Stalling the process because Saskatchewan didn't have the resources to provide medical support? Like, the whole reason we had to go to Alberta is because we did not have a geneticist that could handle what my wife needed to test.

So we speak to her former family doctor who is in Saskatchewan who AGREED TO SEND HER TO ALBERTA! How can you in one fucking breath Send her to Alberta to get help but in another that help doesn't qualify?

To get a little deeper into my psyche, this whole experience has really shown me that I do support my wife in this. There was a little voice in my head that wondered how I would feel if she was rejected. Would part of me be happy that I get to spend more time with her?

No. I felt abject heartbreak and righteous Fury about it. That's how I know what we decided together was right and that while agonizing in certain moments I am behind 100%.

Jeff_AKA_Snoopy posted...

The hell of it is that it isn't even that she was rejected. If she is rejected cause the law/program is not written in a way she qualifies now, I mean fine. We would disagree and appeal but that we would understand.

Stalling the process because Saskatchewan didn't have the resources to provide medical support? Like, the whole reason we had to go to Alberta is because we did not have a geneticist that could handle what my wife needed to test.

So we speak to her former family doctor who is in Saskatchewan who AGREED TO SEND HER TO ALBERTA! How can you in one fucking breath Send her to Alberta to get help but in another that help doesn't qualify?

To get a little deeper into my psyche, this whole experience has really shown me that I do support my wife in this. There was a little voice in my head that wondered how I would feel if she was rejected. Would part of me be happy that I get to spend more time with her?

No. I felt abject heartbreak and righteous Fury about it. That's how I know what we decided together was right and that while agonizing in certain moments I am behind 100%.

The health care system in SK are run by clowns.

I have no idea what my wait time is for my thyroidectomy.

My wife went to Calgary today for a follow up with a hemotologist. Again they identify my wife has problems but that those problems have no treatment options.

But that doesn't matter in regards to MAID because they are in Alberta. O_o

Nobody need permission to die.
Even in Alberta.

Its entirely illegal over here which is BS.

spikethedevil posted...

Its entirely illegal over here which is BS.

That is bullshit.

Yep my family were in a shitty position with a loved one who was basically a vegetable who we just wanted to let go because of it.

It is really awful that a lot of places won't just allow people to pass away if they are going through pain and suffering without any opportunity for improvement. Sorry you had to go through that Spike.

My wife may have Myasthenia Gravis? That may be one of the things going on. We will see what comes of blood tests and whatnot.

https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036

My wife and I were talking about if she should design a tattoo for me to get before she passes away or after in memoriam. She is a very good artist and has strong opinions of tattoos. I've never had one before so... yeah.

That's a pretty cool idea.

;(

That sounds like a really cool idea.

Sorry if this isnt the appropriate place, I was wondering if you knew which subtype of EDS she has/if that was confirmed via genetic testing?
EDS on its own is so hard because for almost everything is simply treat each symptom as you can which is infuriating for a systemic disorder. Add in all the comorbidities that often come with it (it sounds like your wife has multiple of those) I absolutely understand how hard it is in these situations to admit you are just too overcome with pain and hopelessness, because realistically there is nothing that can fix you. So Im glad you find your wifes assessment of her situation as valid- many would hold it against their spouse.
You're a really good dude. You have a long future ahead of you so dont feel guilty about thinking about it now, its possibly the only advantage of her potentially being able to plan when she goes. You have her to ask if you need advise/opinions/reassurance. Its insane how much people with these kinds of disorders have to advocate for themselves to the healthcare world- and I guess even farther into the situation, now the government. I hope things can be resolved in a reasonable amount of time. And that you both enjoy your time together.

She has confirmed hypermobile, with crossover with vascular. She doesn't genetically test positive for vascular but clinically she exhibits the signs.

Jeff_AKA_Snoopy posted...

My wife and I were talking about if she should design a tattoo for me to get before she passes away or after in memoriam. She is a very good artist and has strong opinions of tattoos. I've never had one before so... yeah.

This is both heartwarming and heartbreaking. You're way stronger than I would be. This is making me want to cry and I'm not even involved.

Best wishes to both of you amazing people.

Don't really have much different to what I said earlier in this topic, just wanted to let ya know I still feel for y'all

Jeff_AKA_Snoopy posted...

She has confirmed hypermobile, with crossover with vascular. She doesn't genetically test positive for vascular but clinically she exhibits the signs.

Thank you, I was only curious for my own situation. Still debating about paying out of pocket for genetics when its probably most likely I (may) have the singular subtype that does not come up genetically. I have had an echo and heart looks good at least.
Vascular is so terrifying, it is truly understandable that she has made the decision she has considering all of the issues.
i also think the tattoo idea is beautiful, it would be an amazing thing to remember her by as long as its something you want too

Daffadilio posted...

Thank you, I was only curious for my own situation. Still debating about paying out of pocket for genetics when its probably most likely I (may) have the singular subtype that does not come up genetically. I have had an echo and heart looks good at least.
Vascular is so terrifying, it is truly understandable that she has made the decision she has considering all of the issues.
i also think the tattoo idea is beautiful, it would be an amazing thing to remember her by as long as its something you want too

We have found at least here in Saskatchewan even having the label doesn't really MEAN much? Doesn't seem to get anything for health coverage or disability.

So a slight update.

The physiatrist basically said she doesn't have the expertise to comment on my wife's condition. She specializes in MS so... yeah. Instead she suggested a rheumatologist, who thankfully we do have a local one on our support team who actually works directly with our Ehlors specialist IN Alberta. My wife is scheduled to see her in November here so instead of someone entirely ignorant of her health journey we have someone who is fairly familiar who is working directly with the specialist.

So ultimately a significant step in the proper direction.

It is odd to be celebrating my wife being closer to her ultimate goal of death. It is such a range of different emotions. I am still devastated that she will be leaving this world sooner than I would want but we are now planning for what her last day will look like. With her food allergies she has not been able to eat her favorites in a long time without pain and distress. With a couple hours to go before death though, maybe a meal with some parodies, twizzlers, and caramels bars is just the way to go.

Had our second joint therapy session today. I like our psychologist and I will continue to see him. Talked about the family element and how my wife is not engaging with her family at all for this process. She will send her brother a letter explaining everything so they will know, but otherwise she wants nothing to do with them.

Chatted a lot with my older sister yesterday about everything going on. My siblings know what is going on but she just wants to check in with me and see how I'm doing. She was worried about practical things like debt and money and paying for services, etc.

We have most of that all figured out but yeah.

My parents are coming back from Europe today and I will tell them what is going on tomorrow.

I get to relay all this info to my parents later today. I know they will be lovely and amazing about it, it's just kinda the last big hurdle before everyone who needs to know in my life knows.

It's strange to be telling people since technically my wife has not even been accepted into the program, but I suppose whether now or 6 months from now or a year, this is always going to be what we are working towards... so might as well be all hands on deck.

My parents were shocked that my wife's health was to this degree but supportive. I am very lucky to have a great support system.

Glad your parents are so awesome, not sure what Id do without mine.

spikethedevil posted...

Glad your parents are so awesome, not sure what Id do without mine.

Yeah. My entire family unit is amazing. My older sister said the weeks after my wife chooses to end her life I'm gonna be so annoyed by all the times I'm invited over and whatnot that I will need to tell her to leave me alone. XD

So her rheumatologist here in the city said she could not accurately detail my wife's foreseeable decline and refused to do the MAID assessment... so they are now sending it TO HER SPECIALIST IN CALGARY ANYWAYS!

We've been on this weird rollercoaster for like a fucking month for them to just be like, "Welp, we coulda done that the whole time but we had to dick around for "local" information first"

=/

JAKAS buddy...you may think you're prepared and you'll be fine but...when that lady that you've been with for so long and had in your life for so long and gone through so much with. It sucks. You can't be prepared for that sudden emptiness in your life. I'm still not fully adjusted to life without my wife. I'm behind you all the way bud. If/when the time comes don't be afraid to shoot me a message.

DarthDemented posted...

JAKAS buddy...you may think you're prepared and you'll be fine but...when that lady that you've been with for so long and had in your life for so long and gone through so much with. It sucks. You can't be prepared for that sudden emptiness in your life. I'm still not fully adjusted to life without my wife. I'm behind you all the way bud. If/when the time comes don't be afraid to shoot me a message.

Oh I know. It hasn't even happened yet and I cry randomly at times. It is going to be the hardest thing I ever do. Thank you so much for being willing to share your experience with me.

Jeff_AKA_Snoopy posted...

Oh I know. It hasn't even happened yet and I cry randomly at times. It is going to be the hardest thing I ever do. Thank you so much for being willing to share your experience with me.

No one should be widowed young, you know? It's like we're suppose to grow old with them til we're too senile and riddled with dementia to even realize what's happening. Definitely brave the tattoo needle, especially if it's something she's designing. I got a melt tattoo for my wife earlier this year with no regrets. Best decision ever.

https://gamefaqs.gamespot.com/a/user_image/8/7/5/AAAxZJAADx6b.jpg

DarthDemented posted...

I got a melt tattoo for my wife earlier this year with no regrets. Best decision ever.

https://gamefaqs.gamespot.com/a/user_image/8/7/5/AAAxZJAADx6b.jpg

Dang, dude, you got me tearing up over here. I vaguely recall you mentioning your wife a while back, so I had that as your tag since then. My condolences again, she was gone too soon.

Lorenzo_2003 posted...

Dang, dude, you got me tearing up over here. I vaguely recall you mentioning your wife a while back, so I had that as your tag since then. My condolences again, she was gone too soon.

Definitely. And seeing my post now it seems autocorrect accidentally'd a word there. Wtf is a melt tattoo autocorrect!?

Tattoo idea is very much a good one.

Thank you so much for sharing your journey with us. Thoughts are with you.

spikethedevil posted...

Tattoo idea is very much a good one.

I'm thinking so too.

Do you have any other tattoos?

spikethedevil posted...

Do you have any other tattoos?

Nope.

Jeff_AKA_Snoopy posted...

Nope.

I didn't either. It really wasn't that big of a deal honestly. Just felt like I was being scratched hard enough to feel it but not hard enough to be unbearable. Of course we all have our own pain tolerance and it can depend on where you get it.

DarthDemented posted...

I didn't either. It really wasn't that big of a deal honestly. Just felt like I was being scratched hard enough to feel it but not hard enough to be unbearable. Of course we all have our own pain tolerance and it can depend on where you get it.

My wife has a couple tattoos. It has a lot to do with where you get it.

No updates, just keeping the topic going.