Impending sense of doom

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Weltschmerz

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Hi all,

With thanks to all of those who have helped throughout the last while, an update to say that my wife's condition has continued to deteriorate all year. We are now approaching an end state, partly because oxygen saturation is beginning to drop substantially on each turn for hygiene. We've experienced heart "episodes" and a general lack of stability. As I had feared, my wife's eyes are now not consistently functionally. To be honest, that's been the case for some time. But now she's not using the eye gaze for any real purpose and seems to be anxious a lot more of the time. The end of communication was to be the end of a line and while we are not yet all the way there, that time is approaching. With covid restrictions in place, it's been almost a year since others besides me were allowed in. (The difficulty of being an expat/immigrant at this time in world history.)

I don't have much to offer but would love to invite any thoughts or reflections on how to make the most of this last time. I have read novels, gone through old yearbooks, and highlighted favourite photos. We both watched videos and listened to playlists from friends and family abroad. It's an ersatz living memorial. But if there are other suggestions I would gladly take them. Thanks again, all.

- W
 

jonico

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Hey W,

Based on your previous posts and this one, there is so much about your situation I don't understand, and yet so much I totally understand. I'll just say this, whether doom is impending, or actually still on the horizon, just focus on 'being there'. Hold her hand, gaze into her eyes (memorize what they look like), whisper in her ear, give her butterfly kisses, massage her limbs, do stretches, smell her, memorize her. Talk to her...regardless of how little she can say back. It sounds like you are doing it, but 'be there' my friend.

I really hope you figure things out to make your wife more comfortable and you can both press on (I'm quite sure there are options), improve QOL and enjoy more time together. Best...Jon
 

lgelb

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I am very sorry, but completely understand that communication using her eyes defines the line (which likely forestalls further options, Jon). Music, scents, favorite movies...

We solicited send-off posts "remembrances, funny stories..." from Facebook friends so Larry could close loops before he left us. Or wherever you guys hang out. You could literally ask for letters as well. Or recordings/videos of songs, people saying nice things, raising a glass, etc. I presume if/as bandwidth is available that you are doing video calls where people can just talk to her and show her what they're up to, how big the kids are, etc.

Some CALS are hesitant to show the PALS what they will miss on their way out, but I believe it provides a sense of peace to know where people are and what they're doing. Of course, you know best in your wife's case.

We want to be useful on the way out as well. If there are any big choices that you will be facing, by all means choose one or two and ask for blinks. Certainly I would clarify any end of lfe/memorial/celebration considerations that are outstanding, perhaps both pre and post-COVID, that would imperil your future peace. It is less arduous if you explain something to the best of your understanding and ask if there are any corrections, as I am sure you do.

Thinking of you both. --Laurie
 

Weltschmerz

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Thanks, Laurie and Jon. I definitely gave these lots of thought earlier today and will continue to do so. Nothing is imminent (as far as any of us can tell) but the end is unfortunately definitely in sight. We never did manage to get my wife out of a care home. Lots of factors, and I’m not sure it’s all bad. After the tracheotomy she was stable but in the wrong country; and then in the right country but unstable and in decline. I think the idea of showing what others are up in the sense of closing a loop is really insightful and helpful. We’ve done a little of that and I think it brings comfort.

I was curious about scents. Is it possible to smell anything with the trach? I didn’t think so, and I haven’t had a response so far from trying but I could take stronger items or try particular smells. I think I’m going to make a screensaver-type slideshow of lots of favourite photos. A really old iPod with long playlists of favourite songs has been a real hit in the background.

Finally for now, thanks also for the suggestion of seeking views on life choices. I’ve managed to clarify one or two end of life considerations to the extent that covid allows any of us much choice. But I haven’t thought of checking much about myself other than to clarify how I’ll gift certain items to friends and family (and to whom). Maybe I should work on finding out views on decisions that pertain to me. That’s a helpful thought.

Thanks again to you both. I can’t imagine it’s easy taking your mind back to these sorts of times. I do appreciate it.
-W
 

lgelb

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When I wrote about smell, I wasn't sure if she had a Passy-Muir valve, that promotes nasal airflow. It has other benefits besides smelling things, so perhaps worth asking about.
 

ReginaS

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--
The initial post in this conversation kept coming back to me since you posted it W. Maybe it is the relaxing into 'there is not much more that can be done' that happened for me at that time and just spending time at each other's side - the last times before that's not possible any longer. And knowing that this is enough. Not necessarily easy but good enough. Really precious too. The end of a long stretch - for both.
It's 'Weltschmerz' lived out, togetherness Schmerz (=pain) and Schmerz for each on his or her own. A painful good bye that got sweeter when it was over and when I had recovered from the exhaustion. Wishing you that there is also peace in it. My heart goes out to you.
 
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