TLDR at bottom.
My wife is chronically ill and has had chronic pain since she was an early teen. She's survived cancer twice but the type of cancer she has is a mutated gene and it comes back 100% of the time. She had to have most of her intestines and colon removed because of it when she was young, but the way they did the surgery messed her up ever since. On top of that she has a condition where her body will create excess amounts of scar tissue. So what she had left of her intestines have been turned in to a J pouch. That J pouch has fused to her uterus and now because of that, among many auto immune diseases, she has intense chronic pain daily. She also has autism but was not diagnosed with it until she was about 29 or 30. Because of this she's also gotten herself in to horrible situations, been abused a ton, and has a ton of trauma. We started dating 5 years ago. She told me in the beginning that she was sick, and that she had trauma but not to the extent of how intense it actually was. Ever since then I've made it my goal to keep her in a safe environment and aid her in having a better life. Honestly it's been the hardest thing I've ever done. She's kind of a large threat to herself at times. That, among the countless things she can't do that I have to make up for over the years has really beat me in to the ground. This unfortunately has caused turmoil in our relationship at many times but that's to be expected when you put that much stress on yourself. I'm not complaining, I chose this lifestyle but that's just the truth of it.
Well, despite my efforts of trying my hardest to improve her life and make her want to stay on this earth she has recently this year decided to do M.A.I.D. For those of you who don't know what that is it's Medical Assistance In Death. She got approved and before that I just didn't think it was gonna be a real thing. She has chosen the date though, and as of right now it's a go in 7 months. I mean... I dunno what to say other than I'm numb but devastated at the same time. I drive truck for a living so I'm alone alot with my ear buds in. Sometimes I'll hear something in a podcast, or a song and just start really thinking about the reality of the situation I'm in. I'll have a total breakdown and start fighting off tears while I'm driving down the highway. Other times I'm so numb to it that we joke about it. But most of the time it feels like it's not real. Like I literally have to convince myself it's real sometimes. I don't know if that's my brain's way of helping me get through it or if I'm depressed and just don't know it. I'm not sad most the time, I'm just very neutral. If I have any emotion more often than not it's a feeling of total defeat. I feel like I didn't do good enough and that I should do better but I'm honestly soooo exhausted.
Maid has been obviously hard to deal with but at the same time has been a blessing. It's the first time the medical system has shown interest in actually helping her and I. Since she has chosen maid, we now have help. The doctors and nurses treat her better, and they're actually prioritizing her. Now how fucked up is that?! I mean some nurses and doctors were good prior to maid, but the majority threw her to the way side and treated her like a nuisance. Why does it take someone to set a plan in place to end their life before these professionals actually show compassion and empathy? It seems like it should be part of the job. Like how is a customer service position held to a higher standard than someone taking care of other humans??? I don't know. That's just a sad part of it all. I apologize for the life story but this is the reason I really came here. I work week days between 10hrs and 12hrs. I also am pretty busy most of the time either having to fix our vehicle or trying to make time for my passions. She knows this and is completely fine with it. In fact she has been the least "needy" girl I've ever been with. To the point that I sometimes wonder if she cares that I was there at all (she does). Anyways, I've made it clear that I want us to take full advantage of the little down time that I do get and spend undivided, quality time together. The problem is, she's obviously on disability and because of the medication she takes she doesn't wake up untill between 1pm and 5pm most days. She also has a love for crafting with clay, a love for drawing, a love for art in general (which I strongly encourage her to keep doing because she loves it so much and is insanely talented) so she ends up wanting to spend a lot of her day doing that. If she is too sick to do clay or draw she'll be on her iPad watching YouTube, Netflix, reddit, ect.. Well I'm home between 2pm and 7pm after work and have to be in bed at the latest by 11 because my morning starts at 5am. I ask her all time to come spend quality time with me before I go to sleep since it's such a small window of time and she says things like "okay I'm just gonna finish this". Since she has a habit of getting very fixated on things (her autism), she won't be done that task for at least a half hr. Usually much much longer, as in hrs. By the time she's done that, has taken her medication, gotten in to her pjs, brushed her teeth, grabbed water, got distracted fixating on something random, and gotten all her side table stuff together for bed, I'm either on the verge of falling asleep or she had woken me up getting in to bed. Even when she DOES make it in to bed on time she will shove her iPad in front of her face while sitting next to me and call that "quality time". Trust me, there's no prying her iPad out from her face. This is almost every night. I've tried multiple things like coming and checking on her to remind her, trying to set a designated time, trying to catch her attention with a show she might like, giving her space and just letting her do her thing, calling her out on it, leaving the house to go for a drive to see if it'll make her miss me (she literally doesn't even notice I'm gone and thinks I'm downstairs), and it's actually even started fights from my end. Which I hate, because all I want to do is spend quality time with my wife and not regret that I didn't once she's gone. I feel so alone tbh. I feel like it's such a race against time and I'm losing precious moments. I constantly feel it slipping away from me. I'm trying my hardest to come up with new ways to approach it but I'm out of ideas. It's honestly one of the very few problems we have other than the obvious things that go along with poor health. What would you guys do? I'd be interested to know how you would approach this problem. Should I just be happy she's doing what she loves, not try to force the quality time, and make the best of the little we do get? I do realize she's addicted to her iPad because it's an easy distraction from her reality and she knows that too but trying to get her to work on that would be like dragging a 500lb boulder up a cliff. I've tried trust me. TLDR: Wife is chronically ill and has chosen medical assistance in death in 7 months. Im trying to spend as much quality time with her as possible but work long hrs and have a busy schedule. She has autism and gets distracted/fixated on things during the little time we both have free so we end up rarely spending quality time together. Despite my efforts in approaching the situation in many different ways I have failed to find an effective way to get that quality time with her often and so I fear I will deeply regret it once she's gone.
Submitted September 15, 2022 at 08:57PM by LehJay https://ift.tt/CqtnmvP
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