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jayswife

Active member
Joined
Feb 11, 2016
Messages
71
Reason
CALS
Diagnosis
04/2014
Country
US
State
ct
City
stratford
He hasn't talked to me in three days. He's mad over something so he won't even look at me. Told me he can't turn his head to the right to look at me. But when I walked away his head was turned to the right just fine. I looked at him and he knew it and started to smirk. That is what he does when he wants to be nasty to me.

My dad came over to watch tv with him two days ago and later told my mom that he noticed his attitude towards me when I came home from work. He's going to say something to him. My dad has been biting his tongue for a while now about the way Jay treats me when he's in his mood and after witnessing it two days ago, he's had enough. Normally I say don't say anything but not anymore. I need someone to step in. The meds he takes at night make him even meaner. The other night he made an upsetting comment to me and then said he was kidding. He wasn't. He yells at me from the other room while I'm trying to go to sleep that he wants to Facetime his cousin. After not talking to me all day now he wants me to get up and hold the phone so he and translate for him because she won't be able to understand him. Nope, I'm not doing it.

Yesterday he was in the bed all day and didn't speak other than what he needed me to do. Then after his meds he decides he wants to go to the living room to sleep because he's not comfortable. I refused but he kept pushing. I was afraid I would drop him getting him from the bed to the chair and then to the couch. I was crying and he wouldn't even look at me and the looked annoyed. So after getting him settled at 10:30 on the couch he had me up at 11, 11:30, 12:00 at that time I laid on the couch with him but he wouldn't stop asking me to fix his legs, his arms, itch him, rub his eyes, etc. I went back to the bed at 1. He had me up at 1:30, 3, 3:30, 4 and 4:30. At 4:30 he wanted more pain meds. I sit him up and go to give him the meds and I poured too much water in the syringe and soaked him and then had to change him. I then sat on the kitchen floor and cried hysterically.

Now I'm at work and I feel like I cannot take anymore. I don't know what to do.
 
Oh sweetheart, I wish that I could wrap my arms around you and hug you tight. I think what you are describing has to be far worse than any of the physical battles we fight.

I'm sorry that I'm a bit out of the loop. Has he been diagnosed with FTD? This cruel manipulation sounds a lot like it.

Are you not using a lift to move him? If you are afraid of dropping him, it's past time for that.

I so wish that I had a solution for you. I'm grieving with you right now.

Beckly
 
Hi, thank you so much for your response. He has not been diagnosed. I tried to talk to the nurse, social worker and the representative from the ALS Association and no one has addressed my concerns.

I do not have a lift but I need one. I'm guessing I have to tell the clinic that I need one? I have so many things to do and I do nothing. I feel like I'm stuck. I'm so tired and my head hurts so bad that I just want to cry.
 
Ohhhh, my first instinct would be to ring your neurologist or clinic & get your pals some antidepressants. Maybe that will change things a bit. I hate ALS and how it changes our Pals. Feeling for you.
 
I just spoke with his home care nurse and she called the clinic for stronger pain meds and anti-depressants. The clinic has been trying to get hospice in the house for a while now but Jay refuses. Since his uncle and I are on the paperwork for health directives - I think that's what it's called - we are going to try to override Jay and get hospice in the house.
 
I'm so sorry it's so awful.

Is this an extension of what he was like pre-ALS, or a real change in character? I'm sorry I glanced back through some past posts but didn't have time to read back a lot.

I feel it would benefit both of you greatly if you can discuss his behaviour with his doctor, and you need to do it without him present. Obviously he will be furious if you were to talk about his in front of him. If this is FTD then he has zero empathy for you and feels all his behaviours are justified. This means he will just be certain you are against him and want his doctors to gang up with you.
 
I am so sorry that you are going through this. However, I am glad you were able to get the home care nurse to help. I think calling in hospice is a good choice. Anything to give yourself a break. Can his uncle take care of him for a few hours, a day or two? I think you need some time away if only for a few hours.

Don't feel guilty. You have to take care of yourself and maybe he will also see what he is doing to you. Maybe just a few minutes... alone with a hot bubble bath, walk or drive and no interruptions from him.

BIG HUGS AND THOUGHTS!
 
I am so very sorry this is happening to you. I can totally relate. Brian has done this to me and to others. He can no longer move to the couch or talk, but he can still give the silent treatment. We went through this up all night buisness last spring. It's awful.

Please know I am hugging you tight. I wish I had some good advice, other than already stated, but I have nothing.

Hugs,

Sue
 
Oh, I’m so sorry. I can relate to the difficulty of caring for someone who is frequently surly and impossible. I remember when my husband was first diagnosed that I spoke to a friend-of-a-friend whose very young husband had recently passed away from ALS. When I asked how she coped with his anger, she responded, “Oh, he was never like that. I had to remind him that it was OK to feel upset and angry about the disease. He was just very worried about putting things in place so the kids and I would be taken care of after he was gone.” Right away, it was clear that my experience was going to be very different from hers! I won’t go on about the details here, but suffice it to say there’s a lot of anger, most directed at me. I try sometimes to imagine how things would feel if I felt more love and appreciation, but in the end, that’s useless because it’s not what I am facing.

Anyway, please remember to seek help and support for yourself. My husband adamantly refuses antidepressants, but I am more than happy to use whatever helps! I use everything that is available: found Zoloft useful during a particularly bad stretch when I was finding it difficult to get out of bed each morning, talk therapy weekly, meditation, exercise, the social worker at the ALS Association, friends and family who let me rant, writing, whatever I can manage to fit in. And all the help I can get! I know caregiving can be expensive, so there are often limits to the hours you can manage, but don’t fall into the trap of believing that it’s only valid to hire someone or ask others to pitch in if you are working or doing some other “necessary” task. I hereby give you permission to call in caregiving favors to go to the movies or take a nap! I even give you permission, if you feel it’s necessary, to LIE and say you are going to a “required” work meeting when you are really meeting a friend for coffee! :) But seriously, everyone needs time to unplug and breathe, especially in this situation, and sometimes you have to give yourself that permission even if the person you are caring for is not in support.

Finally, I’ve found it sort of freeing to work on accepting that my husband is probably not going to change -- I am not always successful at this, but think it’s a helpful approach. My therapist pointed this out to me one time as II ranted about my husband being annoyed at me over some little thing, like maybe putting the wrong brand of hot sauce on his dinner or something. He pointed out that it seemed like I had been expecting my husband to say, ‘Thanks, honey! I can see you’ve had an exhausting day and I want you to know how much I appreciate that you tried to make a dinner I’d like!” Which was not very realistic, since he’s never responded to me that way in our 30 year relationship, not to mention since his diagnosis! This was sort of a wake up call for me -- allowed me to focus on “how am I going to deal with this behavior,” which is something I can control, instead of “how am I going to get him to be nicer,” which I obviously can’t control. Not to mention that any efforts to change his behavior only lead to an argument!

Hospice is a great idea, but unless he is judged to be mentally incompetent, you cannot legally override him. A health care advance directive is only valid when the person can no longer make their own decisions -- I have been a hospice nurse, and it’s always tough when the family needs the help but the patient refuses. It is certainly worth talking to the hospice people -- they may even be able to persuade him that the services will be useful (like if his pain is spiking at midnight, a nurse could visit and the hospice doc could adjust the dosage, or whatever…) Or maybe he will just sign the consent forms because he feels less comfortable saying “no” to them than he does to you! Whatever works…

Won’t go on further -- but know that others feel your pain! Wishing you all the best as you muddle through.
 
I am so sorry for what you are going through. I have had many days when I truly feel I can't take it anymore. Over the past three years I have gone from being the caretaker and trying to meet all the needs of my PALS first, our two dogs second, my two horses third, and I wasn't even on the list. Over time I mentally and verbally moved myself up the list, hopscotching the horses, then the dogs, and a few months ago my husband when I feel my survival to function is in jeopardy.

About 6 months ago my husband started waking me up multiple times a night after 2 1/2 years of rarely doing so. I barely can do all that needs to be done each day with a good nights sleep and there is no way I can do it without it. I also need down time each day to relax. So I basically set a limit with my husband that as of 9 pm on he cannot ring me for anything except if is having trouble breathing( he has been on a ventilator all three years and it's 24/7).

I explained to him that I could not physically or emotionally continue caring for him if I did not sleep or have time to shut down and relax. I reiterated that I wanted him home with me but needed this to survive and to have any chance of taking care of him. He did test it a few times but I reiterated all the above.

I can't even imagine what hell my husband is going through, it is even almost unbearable to watch but I believe we need to be caretakers of ourselves also or it just won't work. I know each of us have our own critical needs but these were mine.
 
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I am so far from an authority on anything like this, but I would think it's one thing if it truly FTD, and another if your husband has been this was to you before ALS, or if this is just his reaction to dealing with ALS, taking it out on you.

At some point, I would think either the behavior changes or you start exploring other options, OR you adjust to the situation in front of you. I have said before and will say again that this group is full of people far more patient and tolerant than I. I always say I would do anything for Brian, but I guess I have to modify that by saying expect put up with a pile of abuse or harassment. I could not work if I could not sleep and if I could not sleep not because of his legit needs, but because he was determined to keep waking me I would move heaven and earth to make that a very short lived situation.
 
I often think that, even the people we are closest to, have no idea of the challenges we face. I'm sorry to hear what you are going through. Hugs. :)
 
ALS Sucks and so do mean people! I'm so sorry you are going through this with him. Having cared for a really nasty father when he was ill (though not with ALS), he was always on best behavior for "outsiders" (including hospice) and would never cross them face-to-face. Hope your PALS puts on a new face for hospice, too, and agrees to the help YOU need! Not that he'll ever be kinder to you (jfaidley spoke well to that), but getting help and time for self-care and sleep makes it easier to put up with the nastiness. So sorry. :(
 
Some of you may remember the up all night stuff I dealt with last spring. I was in constant contact with his physician and we tried multiple thing. What finally helped was his eyegaze computer. He could 'talk' again and work his mind. That helped. However, things have been up and down again. So, first things first, I went back an retried the Ativan (he is not regularly on it). bingo that helped. However, he doesn't need it daily and don't want him used to it. So I also tried Benedryl, that is also working. So for now I'm rotating. When that doesn't work, anymore, I'll be back with the Dr figuring out what will.

Don't let them keep you up. Find something that works.

hugs,

Sue
 
So you glad you have a dr that will work with you to find what works. I hope the rotation works for a while... Also thanks for sharing. We may all need those tips at some point.
 
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