CALS Roll Call Continued

V, sorry about your rough night. That sounds terrifying. I'm glad you are going to get to take a pottery class! That sounds so fun!

We had a nice time at my parents' cabin. We stay in the bunk house so we have some privacy. My husband did all his tube feedings out there this time, but I think I have him convinced to come in and eat when we eat next time. My parents adore him and are so supportive and accommodating, so it is just getting him to realize that everybody wants him eat with us rather than hide away in the bunk house. He also totally overdid it trying to help carry things from the boat to the cabin and was exhausted. And then he helped my dad put together a propane fire table, so by the end of the day he was totally spent. Next time I'm hoping he can just relax more. He loves to work and do projects, and is so frustrated he can't do as much as usual. I think partly it is because he is still recovering from the feeding tube procedure, so we are both hopeful that once he is recovered from that he will be able to do more and have more stamina. Not sure how realistic that is, but we can hope!

We have increased the tube feeding calories to 4000 per day. He gained about 10 pounds in the first 3 weeks with the tube, but now he isn't gaining as fast. But as long as we keep heading in the right direction, I guess that is OK.

My husband has some language processing issues that started late last year. He is slower to respond when you ask him a question and he struggles sometimes with finding the right words. He gets his point across eventually, it just takes longer. This was the most time my parents have spent with him and they definitely noticed the change. That was really hard for me. Obviously I noticed the issues, but it was easier to pretend it wasn't too bad when nobody else was seeing it. Other than the language issue, he seems fine mentally. Not sure if this is the beginning of FTD or if it is just going to stay a language issue. Ugh, this disease really sucks.
 
So glad you got away RMT - hopefully he can build on this to relax more next time, but it's hard when being involved in 'doing stuff' is what he enjoys most.
There is a language variant FTD. You can research it a little or just wait and see, but even just being aware now should help you cope. My Chris had behavioural variant, but in his last months he could not really spell simple things (very hard using an alphabet board!), and would mix up yes and no, and became very slow to respond. It took extra care and patience for me, as and frustration for him only exacerbated the problems of course.
 
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I have done some research over the last few months on the language variant FTD and it certainly fits his symptoms. I don't know what I'm going to do if he loses the ability to communicate. It is already so hard with him not being able to speak. If he loses all communication, I don't know how I'll cope. I feel like every day my heart breaks a little bit more and more.
 
Day at a time RMT, don't future worry what will come. Hard I know, but god knows it's all hard enough now, don't add to it.
We don't know how quickly FTD will progress if that is at play, so try to keep on as you are 💚💚💚
 
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That's really good advice. Not easy to do, but remembering to stay focused on today is a great idea. Keeping my stress level low helps keep his stress level low. And he is so much better in every way when he is relaxed.
 
Yes indeed, if Chris got frustrated everything went to pieces fast
 
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Speaking about frustrated...this might be obvious but I have spent about 30 minutes trying to figure out how to PM Jim about the manufacturer of Darcey's air mattress. I give up. How do you do this?
 
Mary,

There is a MAGIC number of posts that you must have to be able to participate in private messaging... called "Conversations". It doesn't appear that you are quite there, yet. Feel free to email me at <email removed; will message Mary with Jim's email> or tell me you'd like to remain "private" and I'll work with our moderators to get you the information you seek. Either is fine with me.

My best...

Jim
 
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Lots of rough nights lately, I suppose I'll have to get used to it...

Jim, do you think the alternating air mattress would work for someone who sleeps in a sitting position? My PALS can't lie flat. I bought an overlay but it is problematic because it doesn't fit over the mattress firmly and he slips down at night. Just wondering, thx

V
 
V,

Yes... the mattress could be used sitting up... but you might need to use something under him to provide some "sticktion". Okay... that is a made up word, but here's what I mean...

Depending upon the angle that he needs to sit, the alternating air action of the mattress could potentially cause him to slide down the bed. I'd hate to see you trade one problem (the mattress sliding down the bed) with another (your husband sliding down the bed). Fortunately, the mattress we used has corner and side straps that firmly affix it to the hospital bed so it won't slide. And I'm sure we could creatively find the means to keep him in place if him sliding was actually an issue.

Alternatively, this might work:

The 8" mattress has about 3" of regular mattress and 5" of air mattress. Each of the bladders has an "air connection". Once he was in the sitting position that he'd like to be in for the night, you could note/mark where the mattress bends. Later, when he is off the bed, you could unzip the cover, and find the air bladder that would align with the lower part of his back... and then disconnect that bladder. My thought is that his butt would still be on a firm, filled air bladder... but just above that, would be one with no air that might cause enough sinking to hold him in place but still not be uncomfortable. Understand, I've not tried this. I'm only imagining what I might try in that situation.

You've probably mentioned this elsewhere, so forgive me... but why does he need to be sitting up at night to sleep? I ask because early on, Darcey could only sleep sitting up at night. But that was before she got her BiPAP and got it set up correctly. Once that was done, she was able to lay flat (though she sometimes liked to sleep at a slight incline).

I hope that helps!

My best...

Jim
 
Mary,

I got your email and replied. Let me know if you have any questions.

And to the moderator who tried to keep me safe by removing my email... know that I truly do appreciate your concern and care. But it is an account that I don't use for anything other than these types of communications and I'm quite aware of the consequences of its public posting. But I'm also aware of YOUR need to keep things safe for everyone. In the future... if someone would like to communicate with me via email, voice or text... I'll initiate that (when necessary) directly via our awesome Moderator staff rather than posting it, here. That way you don't have to remember who said it is okay and who just doesn't know. And as I've said many times before, "THANK YOU, MODERATORS, FOR ALL YOU DO ON OUR BEHALF AND FOR OUR BENEFIT. YOU ARE ALL MOST EXCELLENT! IN MY OPINION."

My best...

Jim
 
Thanks Jim. He is on bipap 24/7. We've had face to face meetings with the pulmonologist and RT and they haven't made any changes to his settings. I will ask them though. He tells me he is only comfortable sitting up.
 
V, let me know if you need help with settings. They may need adjustment overall, or only when he goes to bed. I agree BiPAP shouldn't keep him from sleeping lying down.

Best,
Laurie
 
Thx Laurie, I will send a note to his pulmonologist, if I don't hear back will be in touch. Could be he prefers sitting up.
 
Darcey had two Trilogy machines. This allowed her to have "day" and "night" settings that were on the respective devices. So when I moved her to bed, it was the "night" Trilogy that was connected (with its appropriate night settings) and ready for her sleep time.
 
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