question from my cals husband

[azgirl]

I'm writing this for my husband who refuses to join forum. I will forward your responses to him!

I'd like to help my wife be able to stay asleep at night longer than two or three hours at one time. Her chin strap needs adjusting then As well as a pillow or two. She says this is normal for a late stage ALS sufferer but I'd like to avoid this if possible. I love her very much and just want to help.

 

[KarenNWendyn]

I don’t have an answer for you, but I love his last sentence.

 

[Atsugi]

Not sure I understand. He'd like to avoid what?

 

[lgelb]

He wants to avoid the 2-3 hours interval between adjustments at night, Mike. azgirl, I'm not going to talk through you, that's too weird for me, but your husband's a prince and you may tell him so.

I know you take CBD(?) at night, could try doing without the chin strap as the need for that often decreases, or try a minimalist full face mask, cpap dot com usually has return insurance available for some models.

You know some of my other mantras -- low-voltage heated mattress pad under or on top of the mattress, adequate humidity in the room and mask, cushioning the arms and shoulders at night with extra foam blocks if/as needed, using pressure boots, connected with a sash if needed, check the pillow and consider a shoulder-support version, etc.

The angles of the bed (slope of top and bottom sections probably not the same) and where your butt ends up after the transfer can make a big difference, too, if you're one of those people who can't stand being "off center."

IMHO you should be able to at least double that interval.

 

[azgirl]

look I'm not trying to be cute with this I am extremely concerned about him and was hoping yo you all could help. Mike probably understands the best. He is a fixer and this can't be fixed. As the end approaches he is more and more filled with frustration and anxiety which comes out as anger. He doesn't even remember the angry harsh words that make me cry. He yells, just tell me what to do which of course I cant. I am well cared by wonderful hired caregivers during the daty. My best friend lives next door and helps with morning and bedtime transfers. I'm spiritually strong and am at peace with death in all aspects except for the broken man I leave behind. He refuses to seek help even though recommended by our pcp, refuses medicine for anxiety and depression which I know would help. I am heartbroken about the monster this has turned into the man I married and was my best friend and partner for thirty seven years. He told me to go ahead and ask and I was hoping you guys could give him helpful hints. I love this man with all my heart and feel so bad for what my illness has done to him the past four and half years.
and Laurie we have followed all the comfort guidelines, they work! But they can't fix this.

 

[wishmobbing]

I'm so sorry this disease puts so much strain on your relationship. If you're okay with waking up every couple hours and only worry about your husband's mental health and your attitude towards you then a nighttime aide is the only (and possibly not feasible) solution I see.

Sleep deprivation is not a fun condition. I've seen young parents who looked like zombies and they volunteered to bring their alarm clock into the world and have hope that it will move out at 27.
Being sleep deprived AND remembered that your loved one will die every time you go into deep sleep will knock the life out of you in no time.
I can deal with my PALS fine as long as I get to sleep at night. Take that away from me and I'll turn into a savage pretty quickly.

I'm glad you're well taken care of during the day and that your friend is also there for you.
He needs help. He won't be able to seriously think about it until he gets a couple nights rest.

 

[lgelb]

azgirl, I never thought you were trying to be cute. Just trying to understand what you are asking. If sleep deprivation is feeding the anger, that's the first point of attack. That is/was a huge impact for many of us, and I guarantee there's not a CALS here who hasn't regretted words spoken in fatigue. If he's not going to seek help otherwise, should we not start with sleep?

So what is he waking up to do, specifically? That's why I mentioned the chin strap, pressure boots, and foam blocks.

If you are not falling into deep sleep, such that tiny irritants are waking you up, you could try layering on a light dose (e.g. starting at 12.5mg) of a sedating antidepressant such as trazodone, frequently used as a sleep aid when pain is adequately controlled.

 

[azgirl]

most of the time put a blanket on or give biotene for dry mouth. Takes one minute.
it's when chin strap needs adjusting he looses it if it takes more than simple adjusting adjustments.
I wake up with severe dry mouth if chin strap fails. He yells out of frustration especially since I cannot help with verbal que. This he never remembers.

in the last week I've had my son, friend and caregiver spend three notes nights so he could sleep alone. During the half of the month my sister here they alternate so I don't think severe exhaustion can be blamed. .

I think he's so angry inside that he's not thinking straight. Very worried

 

[wishmobbing]

Good you got him some relief. Sever exhaustion, especially mental, is still in the table is it's "only" more than one night in a row.
I only had to turn my PALS every couple hours for two weeks at night, the second week while working in the daytime. During that week I decided to take special leave from work. I knew this would break me otherwise.
I'm not disputing what needs adjusting at night, you have every right to be comfortable. ALS produces these no-win situations all the time. Keep strong!

 

[NinjaLady]

Sorry you are going through this. I regret losing my patience (due to sleep deprivation/frustration) and feel terrible. Hope you feel a bit of solace knowing that he likely isn't angry with you but angry and bitter because of what this terrible disease is/has taken from you both. The plans and hopes of you being together for decades more and the thoughts of how things should be instead of what they are...he is likely incredibly devastated (as I am) and is reacting with anger. Not sure this helps and you probably already know this. Just a titbit from the other side as it sucks so bad not being able to help/fix/deal with what is happening and not in anyone's control at all.

 

[Narrowminded]

Azgirl i have to again bring up the sleep issue. While every other night does help, if he’s severely sleep deprived that doesn’t fix it. He needs at least a good solid week. I was there for a while and it got so bad I could not even go to the store, I’d get panicky

While what he needs to do for you may only take a quick minute and it is something you definitely need, that doesn’t mean he’s easily able to go right back to sleep. There are nights I toss and turn for a long time. Esp if it’s. Closer toward morning.

Believe me, he doesn’t want to be a grump. I too have regretted harsh words. It’s very hard trying to “guess” what your loved one needs all while your heart is breaking seeing them and what this horrible disease has done to them.

One thing that has helped me is sleeping in the room next door. I can still hear, but it’s definitely muted the noise from all the machines. Not sure of your sleeping arrangement or if something like that is possible. It was hard at first to move out of our bedroom, but now my space is a bit of a sancturary for me. That happen about 5-6 years after venting.

As Wish has said, hiring someone at night would be the best solution. However I know that isn’t always possible.

I did take Celexa for a few years and it definitely helped but it was also a very hard step to take.

I’ll be praying for you Both

Hugs