Old 03-25-2016, 10:11 PM #1 (permalink)
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Default CALS Roll Call Continued

Sharon, if you can PM me his settings/data, I can suggest something re the coughing. Also try to get him to note if the cough is during inhale or exhale, if breaths seem too fast/slow/long/short/deep/shallow.

Best,
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Old 03-27-2016, 10:03 AM #2 (permalink)
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Default Re: CALS Roll call

Thanks, Laurie. I will have him try to note whether the cough is during inhale or exhale and the answers to your other questions and get back to you when I have the answers.
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Old 03-28-2016, 06:53 PM #3 (permalink)
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Default Re: CALS Roll call

How do you handle depression? I get so sad. I see him loose a little bit everyday, yet he is so good about finding new ways to do things - for maybe a week then he has to figure out something else. Our first ALS clinic is in early May, which seems so far away. We are both on antidepressants, which definitely help - I would hate to experience not being on anything. Sorry if I'm rambling.
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Old 03-28-2016, 07:52 PM #4 (permalink)
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Default Re: CALS Roll call

Ramble on, kitkat.

I trust the doctors to tweak the medications for depression. I've found that the right counselor also helps a lot.

Sad is different than depressed. I'm no expert, but it seems to me that sad comes and goes in hours, where depression keeps you from doing productive things for weeks and years.
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Old 03-28-2016, 09:24 PM #5 (permalink)
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Default Re: CALS Roll call

KitKat, it always helps to ramble here. I also think we suffer from a great sadness not depression. As CALS we are to busy to be non-productive. We watch in terror, the changes that are happening. It is so hard on the soul to always be looking into the future with sorrow
while we are trying to stay one step ahead of it.

We are seven months post diagonosis and the shock is over. I have learned a great lesson these past few months and it is to live in the day. It has made it easier for Steve. He does not have to worry so much about me and can save some of his mental strength to find new ways to handle this monster. I have also learned that I want him to know that I will be ok. The only time he has cried since diagnosis is while telling me that he hates knowing e will not be there to take care of me.

I still have great moments of sadness, when I see the changes, but I try to hold off thinking to much until I am by myself. I can't say it will get easier but I can say that now I know that every moment we have is precious and that ALS will not take us down. We know what lies ahead but its not taking today. My prayers and thoughts are with you and every one on this journey.
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Old 03-29-2016, 09:45 AM #6 (permalink)
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Default Re: CALS Roll call

Roll call me.
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Old 03-29-2016, 09:33 PM #7 (permalink)
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Default Re: CALS Roll call

Roll call / early check-in! Kitkat, great advice from Mike and scaredwifetx. I think I would have had a nervous breakdown if it weren't for Zoloft! I lost 26# in 5 weeks, and couldn't sleep, etc. I had terrible anxiety, but really not so much depression (at least that's what I think), because I am too busy to dwell on things. I am very sad, like you say. See if you can get some counseling. A good counselor can guide you through the rough spots and give you coping strategies. Great advice to try to live each day to the fullest and don't let ALS take away your good days that you have left. I know this is easier said than done, but it gets a bit easier (with some ups and downs) as you go along. I try to be the planner/doer/worrier so that my husband does not have to, and try to keep my sadness to myself as much as I can.
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Old 03-30-2016, 12:16 AM #8 (permalink)
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Default Re: CALS Roll call

Checking in, with news. We started hospice a few weeks ago. That experience has been a positive one. PALS yesterday started having episodes where he would zone out, looked like he was sleeping with his eyes open. They'd last a minute maybe minute and a half and he'd rouse, unaware that anything had happened.

Called hospice out and they checked his lungs. Said volume was greatly reduced from even a week ago and CO2 buildup was causing problems. Had Respiratory Therapist come out and make some adjustments on bi-pap. Increased tidal volume to 550. Told us to reduce oxygen and keep it under 95.

He seemed to rally once they pumped up the volume. He slept well last night. This morning he was alert and chatty. Around 10:30 it started again. Hospice came back. No breath sounds on back very little top front. They told me to call our family home. also called the RT again and we increased tidal volume to 600. We made one other adjustment which escapes me right now.

The episodes are not as frequent now as they were earlier but they are lasting much, much longer. When he's lucid he doesn't remember zoning out and he doesn't understand what all the fuss is about. I tried to explain that he was having a series of not siezures but something very similar. He wanted to argue with me. I told him the family was coming and he said he was fine. He'd be happy to see them but there's no reason for them to be here. They all arrived at the same time and he was alert and smiling and I could see them wondering if I had overreacted. And then he had an hour of frequent episodes.

Hospice is bringing out a comfort kit tomorrow. They said his spells will get more frequent and last longer and that soon he will fall asleep and not wake up. I am keeping him home for this and asked them to bring us whatever we needed for him to be comfortable and calm. I don't want him to be afraid or scared or in pain. I am here to ask those of you who have been through this for the benefit of your wisdom, and for everyone to keep a good thought for us, or a prayer if you're comfortable with that, for the next couple of days.

Thank you

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Old 03-30-2016, 12:34 AM #9 (permalink)
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Default Re: CALS Roll call

Auto,
I don't know the background of why he's on O2, but as you know, that contributes to CO2 buildup in ALS and is most often used near death.

I doubt that breathing in more O2, which is what's happening when the tidal volume target is increased, is going to help sustain him over the long term. I would be gradually reducing the volume and d/c'ing the oxygen to see if he could stay comfortable that way, if he was not in discomfort and largely interested in life, prior to these episodes' beginning. If he has minimal breath sounds, forcing deeper breaths seems counterintuitive since the lungs have to work harder to accommodate a higher volume.

If he is actively dying in other respects (nutrition, etc.), then of course disregard this. I guess it is not clear to me how things were before these episodes began.

Best,
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Old 03-30-2016, 12:53 AM #10 (permalink)
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Default Re: CALS Roll call

Thanks for the quick response. Oxygen was fairly new addition to his care. It started when he started hospice. It's been at a very low setting of 2. We were happy to get it because his oxygen readings we hovering in very low 90's with frequent trips to the mid 80s. So that was one of the first things they did. And it seemed to help. He was more alert, more engaged with people around him, more energy. It's just been the last 2 days that these episodes started. Weve reduced his oxygen to 1. Increased tidal volume was hoping that pushing more air in at pressure would help clear out CO2. You recommend reducing oxygen to zero or close to it and reducing volume to see if he gets back to normal? The way I see it we don't have much to lose by trying this. I am just wanting to be sure I understood what you were saying.

He is also having trouble urinating. That's new. And he's been constipated for 2 days. I wasn't too concerned the first day because we had to skip a feeding the night before. He gets 4 cans of boost plus at 75mgph, so it runs all night. He gets a single can during the day. Saturday night when I started setting up for the overnight feeding I could see that his daytime boost was still sitting in his stomach. I suctioned it out and gave water but no boost. Next day tried one can midday and it cleared his system fine. So we are back on normal feeding schedule but his bowels haven't gotten the memo. He's getting plenty of fluids so I don't know what the issue with urination is. His lungs are clear. There just no volume.
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Old 03-30-2016, 02:09 AM #11 (permalink)
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Default Re: CALS Roll call

Auto it sounds to me like your hospice are really helping you keep him comfortable and that is the main thing right now.

If you want to adjust the bipap yourself, Laurie is the person to work with you on it that's for sure.

The main thing is to recognise that he may be starting to shut down, but maybe he will level out a bit again and continue on for a while. So hard to tell sometimes with this disease. It is good though that they have forewarned you that he may just not wake up anytime. Sometimes this happens even with PALS who don't seem to be declining much, so it's really worth CALS understanding that this can happen. Personally I would prefer that for myself, just go quietly in my sleep.

I'm glad they are bringing the kit, even if it turns out you don't need it yet, you will have it on hand and even that can be a kind of comfort for you.

Do feel free to start a thread of your own if you want to contain a conversation around this and get lots of support xxx
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Old 03-30-2016, 02:16 AM #12 (permalink)
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Default Re: CALS Roll call

I think I missed checking on for the roll call last week!
It was a hard week for me - the lead up to Easter. It doesn't matter that the dates of Easter are different each year, the fact they are such celebrated days marks them for me.

2 Easters ago, on the Friday morning my Chris entered what was obvious end stage, and I spent the 4 days giving him purely palliative care and an incredibly peaceful passing, early in the morning of the Tuesday.

So this means Easter brings many memories of what was happening in that week leading up as well as the 'holiday' days.

This year was better as I had a big distraction therapy happening as the older step daughter had finally decided she wanted to visit (for the first time since Chris's passing) and take some things that had belonged to her mother and her family. I was very stressed as it isn't always pleasant having any meeting with her.

I put a lot of effort into having a lovely spread of food ready and making her very welcome. My concerns that she would start to pick and demand things or just become nasty were hopefully circumvented by being made welcome.

It also took my mind off a lot of things that replayed many times over last year ....

So I'm here, a second Easter behind me, and a few weeks before the actual anniversary of his passing hitting.

I'm loving seeing how the CALS that joined here in the past few months have moved from initial shock into a level of acceptance and are so focused on their PALS. You are all amazing xxxx
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Old 03-30-2016, 02:20 AM #13 (permalink)
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Default Re: CALS Roll call

Yes, that's what I was suggesting, though he may be past the tipping point for that. It's worth trying if only for comfort. First, I would make sure EPAP/PEEP is at minimum.

Clearly his system is under siege and the GI tract/bladder can shut down. Again, I don't know how near this is to the end, but keeping hydration going may allow things to kick back in. We don't worry about a couple of days of constipation, generally. I don't know if you've tried warmer liquids and/or real food smoothies in the tube. Our tubers will have more insights.
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Old 03-30-2016, 07:17 PM #14 (permalink)
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Default Re: CALS Roll call

It's Wednesday so I'm checking in.

We've had a good couple of weeks. Two of Douglas's high schoool friends came thousands of miles to visit him and he spent more time smiling and laughing than I've seen in a long time. Two days after they left another friend came to stay for a couple of nights, and a former neighbor kid (now in her 30's) dropped by to chat. The visitors were all very helpful and considerate. Life is so much easier during the happy times; just as much work but so much easier to handle.

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Old 03-30-2016, 11:09 PM #15 (permalink)
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Default Re: CALS Roll call

Autotelic, you are in my thoughts as you enter into this (even more) difficult time. Blessings to you and your PALS.

Tillie, sorry that Easter was such a hard time for you! We first found out that Dave has ALS 3 weeks before Christmas, so trying to decorate and put on my "happy face" and be festive was really hard, but we rallied I guess.
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