How can I not be a monster during the night?

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jayswife

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I need to figure out how I can be less crabby during the night when my husband needs me to turn him or suction him. I realize there's no answer for this but this is something I need to work on. I sleep soundly so when I'm awoken by him calling for me I feel aggravated and I know that's not right.

I think I would feel more guilty about this if he was nicer. He's become so crabby that I never know what I'm going to get from him. I feel like I'm dealing with Jekyll and Hyde. Yesterday he was actually making me a bit nervous because he was nice and mentioning our upcoming anniversary and asking about work and then an hour later he was telling me all these things he needs done. And it's the way he tells me what needs to be done. Then he went on and on about the aid needing to have things ready when he wakes up. Such as his water already poured and ready for him, his tooth brush and wash cloth out on the counter ready. He said it takes her too long to get it together. She's amazing and I wonder how she deals with him. My stress level is so high right now - I realize I'm not the only one. I just need to vent to the people that know where I'm coming from.
 

Jhill

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This disease takes so very much out of you, both emotionally & physically. You have no reason to feel guilty.
I was so utterly exhausted at the end of the day and really needed a good night's sleep. Like you, being woken out of a sound sleep made me cranky also. I believe I did a good job of hiding what I was feeling, but I did feel it.
I just always tried to remember what my husband was dealing with.

Hugs
Joan
 

SKlocinski

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I think it is normal to feel that irritation. I did not have it so much with Tom but then the time I had to deal with being woken in the night was very short...only about a week before he passed away. I do, however, remember going to visit with my mother when she had Alzheimer's and feeling very irritated when she asked the same question 10 times in as many minutes. Then, of course, I would feel guilty for feeling that way when I know she can't help it. I can't imagine how my sister who actually lived with her felt. It is like when a baby continually cries...you feel that irritation even though you know that the baby is not at fault. Try not to feel guilty about having the feeling. You really can't control that. All you can control is your actions and words....
 

Narrowminded

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You are so not alone. I feel that way too. I'm exhausted when I finally get to bed, and when he wakes my, body is just not up to moving at that point. It makes it very difficult.

I try my best to hide, it but i'm not always successful.

Hugs,

Sue
 

GilWest

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I have honestly gotten up and done things and not rememebered it until I saw it the next morning. I can now wake, suction, turn, medicate and go right back to sleep. I was not always able to do that. I have also sort of woke up in the midst of doing some service...lol.
 

texastc

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I battled this as well....its hard when you are not getting the sleep you need. It finally got to where I felt so bad about how I acted sometimes...I cried...apologized...promised to try harder...and then I did...try harder. They are not being needy on purpose, keep telling yourself that...they hate it as bad or more than you do...if that helps. I know you have to constantly remind yourself of this...its not their choice to have this...condition...for lack of a better word. There are no better words...it stinks for everyone involved. I'm sorry, this probably doesnt help much...but thats how I dealt with it. And I still feel/felt guilty for the way I acted sometimes in the middle of the night....but I, like you I'm sure, was sooo tired, physically as well as mentally. Such an evil disease with such deep reaching consequences. Do your best, all anyone can ask or expect, and try to never lose sight of the fact that it has to be more terrible on their side of the trip.

tc
 

lgelb

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You can't always be at your best. No one can. It all seems worse in the middle of the night, doesn't it? You can't beat or hide how you feel all the time. So when your best efforts don't work, say your apologies and move on, as you did before ALS. TC, I'm sure I have more reason than you to feel guilty but I don't. I did my level best and so did you.

There are some parts of the ALS thing that the P/CALS can't ever be on the same page for, and that feeling is one of them.

Best,
Laurie
 

Lixen

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You have two separate issues going on here. One is a lack of uninterrupted sleep and the other being a change in behavior.

Personality changes in PALS is quite common but I feel it's important to know where that change is coming from. Is it part of the disease itself, part of dealing with the disease, medication induced, a combination of the above or just being a hole of ass in general? Any of the above is possible.

I have not shared the details of my experience because our situation (as it pertains to meds) was pretty atypical and not in a good way, but I can tell you we were both put on antidepressants upon his dx and although the meds did exactly what they were designed to do, they also made us pretty (aka extremely) self absorbed, apathetic people who really couldn't stand each other. When meds are introduced or altered, I like to encourage folks to be on the lookout for personality changes in their PALS, as well as be mindful of their own personality changes. It's much easier to observe changes in others than it is to detect them in ourselves, so it never hurts to ask people if they've noticed a change in you. In my situation (med induced) I was able to reverse course but precious time was lost and I'm still very bitter. We were essentially robbed of the only thing we had any real control over - our behavior. Again, ours was atypical but not isolated.

It's also important to recognize that even without FTD or meds, a large percentage of PALS do experience some degree of change in personality. These changes are as individual as fingerprints, no two are alike. Truthfully, I don't really think it's possible to deal with this nightmare without personalities, perceptions and behavior changing to some degree. ‎

Then there's just being crabby. Both PALS & CALS are equally at risk of acting like douchenozzles from time to time. The stress is enormous and compounded to the extreme due to the unrelenting progression & continual loss that comes with this horrendous disease. Really, it's just so traumatizing I don't know how anyone ever adjusts. But for PALS, there's such an overwhelming sense of loss of control. When faced with the reality there's nothing you can do stop or even slow the loss, it's only human nature to want to seize control of anything around you. My PALS once told me the only thing he had left was planning how he would face each day. That meant being able to control something as small as how many wet wipes (and which hand I used) to clean his rear end. Although not intentional, he lost sight of me as a person and began viewing me as an extension of himself. Dictating exactly when meds will be dispensed and in what fashion, how a shoe is to be tied, how hair is to be combed, barking orders, etc., these things aren't designed to make a CALS miserable, and, honestly it has nothing to do with us at all. It's about desperation and the fundamental need to retain SOME sense of control in a world hell bent on taking it all away.

For as much as a CALS understands this, it doesn't always (if ever) make being ordered to do something any easier. No one likes being told what to do and it's hard to want to do things for others when we feel unappreciated or taken advantage of. It does help to keep those lines of communication open at all times, though. And this applies to both sides. I think Blueandgold's thread really demonstrates the importance of ongoing communication, respectful dialogue and the need for physical affection. These are basic human needs and we should be really mindful of this and take full advantage it. When the goal post is moved, move with it. Don't give up or stop playing the game. Individual counseling was critical for me but it took a long time to find the right counselor. If contemplating this, try to find someone experienced in dealing with trauma/grief pertaining to illness & disease as opposed to folks specializing in divorce or generalized depression. It matters.

I also think 'me' time is essential to survival. You have to make time for you even when you don't want to. I never did and I can tell you I completely lost my sense of self and gained nothing but whole lot of bitterness. You are an individual, not just a CALS. CALS is what you do but don't let it become who you are. Don't confuse 'me' time with being selfish or being a bad spouse. You must take care of you and you need to treat it as seriously as you do taking care of those who depend on you. Caring for you makes caring for others possible. In the abstract, we can only care for others as well as we care for ourselves. *Period.

Lastly, sleep deprivation is serious business. I value my sleep because I know I'm a wretched hag without it. I'm pretty wretched regardless but that's a different story ;-) Even when my kids were infants I had to have my 6-8 and sleep trained them VERY early on. Why? Because I knew I would be a horrid mother during the day if I was up every 2-3 hours through the night. It was non negotiable. Obviously, caring for a PALS isn't the same as caring for babies and requires special consideration but it doesn't lessen the need for solid sleep. With my PALS, I didn't sleep solid every night but I did have a very small circle of family/friends that alternated duty & came one to two nights a week. It wasn't always regular or penciled in, but I made sure someone came when I knew I was at my breaking point (and I have a low threshold for sleep deprivation.) I can't tell you how I looked forward to those nights. They literally kept me going and I was so grateful for this basic luxury. I encourage anyone to exhaust every possible avenue for night relief, even if only once a month. Anything helps.

In short, there's no easy answer for how to navigate the common problems we all face. As much as we share the same disease, individual variables require us to customize solutions that work for US. The basic outline is; Identify the problem, mitigate & treat if possible, exercise self awareness, communication & affection, maintain independence through 'me' time and do not neglect the importance of sleep.

For everything else there's wine, a hidden pack of cigarettes and an online, alter ego when only a good Twitter rage will do ;)
 
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Nuts

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Lixen expressed that extension of the PALS concept very well. I continually remind myself when my guy tells me every move to make that it's how he stays involved. On a good day I thank him and explain calmly when I veer from his plan. On a bad day I snap, and then I feel like a heal.

Empathy is tough. Because of everything I've read here, I try to help my guy think of me when I have a problem. Last night I took a tumble down three concrete steps with a box of laundry that has my back hurting again. I told him about it last night, in some detail, and then this morning I mentioned it again and actually had him kiss my boohoo. Well, kiss the finger and touch my back---he can reach to do that. Later in the car it was clear that he had no awareness of my pain, so I told him it seemed he was unaware of the nasty fall I took last night. He said he thought I was talking about tripping in the hotel room. Now he is concerned and wants me to rest tonight, but then mentioned me taking him hunting tomorrow by myself, which means hauling quite a bit of equipment for him. He's concerned about me, but doesn't see able to factor that concern into his plans for tomorrow.

My common trick is to tell him he's welcome when he forgets to thank me for something. I may not be able to stop what this disease is doing to him, but I'll try conditioning him as long as I can. No white flags on this side of the Hoyer life either!!
 

DreamsEnd

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Jayswife,
It's now 11 months sine my pals died of this awful disease and as much as I work on the guilt from the exhausted nights (and I was an exceptional caretaker, as we all are) the guilt of my grumpiness still haunts me. My pals was sweet until the end and I so regret my spillovers.
Laurie, I wish I could be as pragmatic as you, truly.

Sending huge hugs to all,
Sherry
 

Tracy500

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I feel the same, I thought that I as the only person being treated so poorly.,so the ALS causes these pals to be so mean! I guess there is nobody else to take it out on but me since I'm his only caregiver. I know he needs stuff done, but why can't he be nicer about it?? I hate this disease so much. Why did it have to happen to my family? When will it end? I know I want this to end, but not end my husband. It's a loss situation. I just turned 33 and it's been 2 years of hell!! I need a long break. He has progresses so fast this last year that what else will go next? He has lost all ability to do everything. Last thing he has is breathing. And now he wants a trach some days. I don't know if I can do this any longer if he gets a trach.
 

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My capacity to remain calm starts to plummet at 9:30 pm every night. There's nothing I can do about it. I'm only human and am unable to function well when I'm exhausted. You asked for a solution, and here is what we did: We demanded that our health plan provide home health aides in the evenings and not just in the mornings, and when the plan refused, we went to the government, explained that an ALS patient needs the exact same kind of help at night as in the morning, and got a formal order. ALSA did not advocate for us, but AARP did! Now we have aides seven days a week, three hours every morning, and three hours ever evening. For suctioning at night, our solution was, again, to get a formal government order: for a licensed vocational nurse 8 hours per day, from 11 pm to 7 am. We subsequently got another order and now receive 16 hours of daily nursing plus the aides. In my view, when it comes to getting help at home so you can be more of a spouse than an exhausted, crabby nurse, it can be more important to have a good lawyer than a good doctor.
 

Nuts

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Dave, wow. Good for you! Do you mind if I ask if this is a work health care plan and how it worded the hours provided?
Becky
 

Dave K

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There is not enough space here to provide the details how we did it. Suffice it to say that you may be entitled to much more help from your plan than they are telling you. Since you are from North Carolina, I urge you to contact Neil Cottrell, President of the Joe Martin ALS Foundation, which is based in your state (704-332-1929 ext. 801). He and I have discussed putting together a playbook that would address the multitude of laws that touch on this subject. After you touch base with him, perhaps we could all talk together on the phone.
 

missyg75

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I was often a monster at night despite my best attempts not to be. I was working full time, basically parenting our two teens on my own, and then on duty with my husband after 10 pm when the kids went to bed or the eventual few hours of evening help my parents paid for left. I was exhausted most of the time. I often said things I shouldn't have, especially when he was cruel to me. His behavior changed so much and FTD was mentioned, but he refused to even consider it. I begged for help, to let me get a full nights sleep a few nights a week. But he refused to let me ask his mom to help. As I became more and more sleep deprived and on the brink of a breakdown, by ability to care for him in a positive, calm, loving manner vanished. I snapped and I will forever have guilt over my behavior and words. We got night help after that but he no longer wanted me to care for him anymore. He distanced himself from me more everyday and it crushed my spirit and will to keep going. We basically became estranged and had no contact for several months. He moved into his parents' home for 24 hour care. We almost lost him in May and he then realized he and I weren't done. We are now in the midst of trying to build a new different relationship- which is hard being that I been with him more than half my life and I want what we once had. But I determined to not lose any more time with him.

take deep breaths, walk away for a few minutes, never let him see you angry at him. But also stand up for yourself which is what I wish I had done. If you can't take care of yourself, you can't take care of him. I remember my wise 89 year old grandma telling me to remember I really had all the control. I didn't want to think that way. It seemed as if I was belittling my husband. But she was right. Maybe If I had taken control, got help sooner, and taken time for me things wouldn't have turned out the way they did.

Hearing you and others feel like I did is helping me forgive and move on. I hope my story helps you in some tiny way.

keep breathing and smiling!
 
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