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Hi Stephanie,
I feel so bad for you...but I do know what you're going through...things are pretty tough for our family right now too. I think it's a control issue sometimes - don't know for sure. I have been caring for my husband (my kids help out too) with no outside help - my husband refused for three years now, and it's up and down all the time with his moods, and whether he likes me or not. We've been married almost 25 years, and yesterday he dropped a bomb on me - said I was the worst wife ever, and was only taking care of him for the insurance (certainly not that much - I'll be working till retirement!). He was hospitalized two weeks ago with pneumonia and a heart attack - and is still in there as he now requires 24-7 care and I can't provide it cuz I can't afford to quit my job. He is on morphine now too for pain. Someone mentioned to me that morphine can alter a person's behaviour - is this true? I think too that sometimes the only control PALS have is over their loved ones, and maybe the only way they can deal with what's happening is to take it out on their loved ones - don't know. All I know is how hurtful this is, and how it is difficult to not take it personally. I'm taking the weekend off - maybe a break from all the stress will give me a fresh perspective, and some much needed rest (I hear you about the "tired" part! Never knew I could be this exhausted!) - maybe a break is what you need too. Don't let the games get you down - all you can do is your best and if it's not good enough, or enough then let someone else take over - you don't deserve to be anybody's whipping boy.

Take care,
Beaner
 
Hi Beaner- I would not be surprised if morphine changed his personality.
]We have so many PALS who are grateful for the help they get from their caregivers that anytime I hear of one who is verbally abusive I start looking for other reasons. Of course loss of mobility and independence and a sense of impending doom would make even the most upbeat testy from time to time, I would think. But telling you how bad you are as a wife falls into another category, especially when you are trying so hard! I am sorry you have to deal with all this.
 
Stephanie,

I am sorry also that you are dealing with soooo much. I keep reading posts like this where PALS behaviors remarkably sound so similar to a form of dementia called frontal temporal dementia (FTD) which is nothing like alzheimers or other common dementias. I have mentioned this several times now, on other posts. I'm starting to sound like a broken record. But, it is eerie to me that so many CALS are dealing with issues that seem remarkably similar to FTD symptoms. Apathy, self centeredness, changes in personalities (mean, tantrums, control issues, poor decision abilities) and I have to say your post speaks loudly that it may also be a possibility for your mother. The association of FTD and ALS is still very new to the medical professionals. If you have a chance read a few articles...I will attach a couple to start with: http://www.alsa.org/files/cms/Healthcare/Cognitive_Impairment_Transcript.pdf
and http://search.yahoo.com/search?p=bu...es&ei=utf-8&fr=slv8-msgr&xargs=0&pstart=1&b=1

I truly believe my brother has FTD. He refuses to find out, of course. But, it helped me to know and understand and explain his behaviors. It helped me put it all in perspective. It lets me know that his decisions and behaviors are part of the disease and he can't help himself. Once I found that out, the next thing that helped me was my other family members came in and we got all his POA's in order and everything in writing. If it weren't for that, the last two days would have been hell for me because my brother was making decisions that were nonsense. He threw my life into chaos again but it was brought under control with the POA's. His decisions were beyond his financial means and physical capabilities also, but he didn't see that.

Your mother is holding you prisoner, so to speak, like my brother was doing to me and he still tries. If you can't get the POA's and the situation under control for yourself and your kids, I really believe you might want to move and just offer to help as a fill in caretaker instead of the live in caretaker.

May God give you the strength you need,
Mary Jo
 
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