Life post-trach: mental health?

Weltschmerz

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Hi everyone,

After an absence for an air ambulance and a return to our home country, my wife/PALS has had another few months firstly in hospital and now in a care home. Medically speaking, all is stable with the trach in situ and experienced care staff in the home. Despite this, my PALS greatest wish (since being hospitalised suddenly in January this year) has been to return home. We are working on that together with home aides and medical staff. In the meantime, I have started to notice a real change in mental health. I can’t work out whether this might be social isolation - after 8 months of being allowed no visitors except me (covid...) - we had our first time apart when I had to quarantine and wasn’t allowed into the home. On the other hand, it could be medication and/or sleepiness. To me there’s an element of sensory deprivation along with social isolation: curtains usually drawn to enable eye gaze to work (which it barely does); and light fairly constant except for sleeping. My fear, though, is that this is yet another element of the disease. I’m not sure there are many invasively ventilated patients in general, and so the pool of expertise might be limited for this type of musing. But any hints as to what I should look out for; what I might best report to doctors etc, would be very helpful indeed.
 

lgelb

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I'm not sure I've completely understood your situation; you were heading home last I recall? Why is she still in a care home?

But I would certainly not keep curtains closed on account of eye gaze. I agree, it can only be harmful not to see outdoors. And is there no courtyard or area for her to be outdoors?

If the eye gaze setup's not working, I would try another version or even go low tech with a word board. What hardware/software are you using?
 

Weltschmerz

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Sorry, we headed home as in to our home country. After a short spell in the ICU here, the step is to work on getting to our actual home (property). Staff are hard to find here as they were in Belgium, it seems. Because there were/are no extant medical needs, my wife was transferred to a care home as an interim step. Unfortunately there is no direct access to outside from the room. I would have thought it possible to take the hospital bed down the hall and outside but I’m not sure why that hasn’t been tried. When the staff tried to plan for a shower, my wife became so anxious that her heart rate rocketed.

The eye gaze works for now but not consistently. The software was on the computer already but it’s a Tobii eye tracker camera along the bottom and I think Microsoft Dynavox. We did have an Assisted a Communications Technology (ACT) specialist in a month or so ago to tweak the settings and dwell speed etc.
 

nona

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Is she taking anything for depression or anxiety? I take a low dose of both before bed because they make me sleepy and help me sleep. I'm pretty much housebound and it's depressing, and I imagine that it must be harder to be trached and not at home.
 

affected

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So sorry you are both going through all of this.
There are many reports of huge mental health issues for people bed bound and trached. I think that having a trach and vent and being to be out and about in a PWC is a very different thing.
Being bed bound and in a hospital this long surely will take a toll on her mental health.
 

lgelb

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Agreed, I would try to be perhaps a bit more aggressive in getting her outside and in different parts of the center. No one's mind is at its best in the same room 24/7.

And the longer she stays in bed, the more her body will rebel against transfers, such as to the shower, so for me, that would be a priority as well. Her body's ability to regulate pulse, equilibrium, and blood pressure, rests on a certain amount of movement, even passive transfers. It might be worth even a small dose of a sedative if needed for safety, to accelerate that process, a learned adaptation, sort of like when you first step into a cold pool and then warm up.
 

Weltschmerz

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Thanks for these suggestions. Apparently the bed in the care home is likely too wide to go down the corridor - or at least to pass through the doors to the garden area. (It’s the only facility in our area that can accommodate someone trached and vented, apparently.) I did take on board the comments about staying in bed. After the fuss caused by the rocketing heart rate which resulted from anxiety about a shower, I think the better place to start is maybe trying the hoist, with a view to sitting in the PWC.

I have also had a good discussion with one of our favourite nurses just about the medication levels. With anti-depressants now having been taken so long, there may be a bit of tolerance. The doctor will revisit the medicine levels with a view to making some adjustments. Also this week a UTI seems to have contributed to the element of confusion the other day. It’s a lot to keep track of but I do appreciate the feedback here. I’ve never met anyone else either who has ALS or is looking after someone with it, so this forum is extremely helpful!
 

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I feel if you can work towards her being able to get up into a PWC it will make a difference in the long term. It may be worth starting with just trying lifting her in the hoist to a sitting type position for a little while then lowering her to the bed, and increasing to how she tolerates things.
Antidepressant review - again this is a good thing to do. Her situation is complex and so working on multiple fronts may well be needed as there could be more than one issue at play.

And finally a UTI really does mess with the head. I remember having one a very long time ago, but I still remember the slightly delirious state I was in, in a weird 'watching from the outside' way.

Sometimes just laying the issues out here can bring clarity to what might be tried, let alone the breadth of suggestions you might get in return. So glad you have some things to work on. Please do let us know how it goes.
 

Weltschmerz

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Just a quick interim update to say that with the help of a specialist ALS nurse (a valuable resource here) I’ve managed to line up some new things. Firstly just moving my wife’s bed to face different things, and possibly taking her in it down the hall and to the residents’ lounge for a change of scenery. Then we can move to hoist and possibly PWC. The meds review is underway and will hopefully slightly reduce laxatives - doctors have been overly keen on pumping those in, in my opinion and that of some of the nurses - and revisit depression meds too. I am no longer worried about the mental health issue to quite the same extent; confusion really does seem to have been the UTI. On the other hand, despite seeming quite lucid there seems to be continued difficulty actually typing properly. It’s days since I’ve understood properly, so I hope we are not approaching my biggest fear ie loss of eye movement. Baby steps for now anyway, so thanks again.
 

nona

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I have trouble typing when my eyes are dry, especially when I spend more time in front of the eyegaze.
 

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Thank you for updating I was thinking of you both.
It sounds like you are unravelling some things, it is really hard when there are multiple things going on - like that UTI can have really impacted on everything else. Dry eyes is also a great thing to be aware of. Probably tiredness too.
I hope each baby step brings something better for you both each day.
 

Weltschmerz

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Today was a great news day for us both; I was able to take in our cat who my wife hadn’t seen since being hospitalised in January. Bittersweet because of course that’s the first time post-trach ie without talking, but it was a lovely afternoon. I think tiredness is a huge factor. It’s astonishing how sleepy my wife is now. Dry eyes I think are less a factor in this case, but good to watch out for. And I’m now taking a book or magazine to pass the time while I sit and visit, just with the amount of sleeping going on...but yes the cat reunion was pretty great - that cat is like a baby to us! 😻
 

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what a great thing to be able to do - I hope you can bring the cat regularly it will be such a highlight for her (and the cat too I'm sure).

Having something like a book for yourself is absolutely a must.

So glad to hear some good news, every step forward is wonderful.
 

lisa g

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That's great that you were able to bring your cat in for a reunion creating a sense of normalcy. Our cat is like our baby also. She knows if I'm not feeling up to par that all she has to do is curl up by me to make me feel better. Animals are great healers for us.
 

jonico

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Hi W,

I'm concerned about you and your wife for a few reasons based on your posts in this thread. It's encouraging to hear that things are moving along in a way that may allow you to get her home...assuming you can work out the caregiving support piece.

Still, could you fill me in a little more on the Eye-Gaze situation? Before my wife was able to get a single unit Tobii Dynavox I-12 loaner from our ALS Center and then get an actual one of her own, I set up the tobii eye tracker bar thing you seem to be using on a dedicated laptop I bought her. No matter what I did, I couldn't get that thing to work anywhere near adequately. It was just a constant frustration. I haven't been following other posts of yours of late, so I am wondering if you have any kind of ALS Center/or disability Center there in Edinburgh that could provide an Tobii I-series loaner with stand? Or could you get one through insurance, or find one used somewhere? I really think that until you get your hands on a Tobii or a similar self-contained eye-gaze unit your wife will continue to have trouble communicating.

Also, could you explain to me how she communicates her needs to you without an eye-gaze? Just yes-no questions with blinks? Other?

Best...Jon
 
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