Old 06-08-2009, 01:34 AM #1 (permalink)
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Hi my name is Jenny and I am going through the hardest time of my life which is also supposed to be the happiest time of my life...I just got married and recently bought our first home...but there are two major problems in mine and my husbands life...my mother was diagnosed with ALS right before we got married, and his mother is battling with lung cancer..they have both gotten worse... my mother in law has 3 months ,if that, left to live because of the fact that the tumors are all throughout her body so they cannot do radiation they could do more rounds of chemo but she is so weak she would not have much of a quality of life. So she is living her last days at home...my mother was diagnosed right before my wedding and they said she had had it for about 2 years before she was diagnosed. She is depressed all the time but who can blame her, she cannot use her legs , her right arm is gone, and her right neck muscles are giving out. my sister and my father and I are at our wits end because she is so negative all the time, she also has OCD , bipolarism , depression, and talks about suicide all the time... My father in law is an alcoholic and is not in the picture. So things are pretty tough all around... this is my first time writing out what is actually going on in my life...i cannot believe it is real. I know we always say take it one day at a time but I just don't know how much more I can take. She has a motorized wheelchair our bathroom were made handicapped and we have a chair lift that goes up the stairs but we are having a problem lifting my mom now...my father and sister and I all have back problems how can we break it to my mom that we need her to get a catheter so my dad can have a full nites sleep. And is anyone having problems with stubborness and negativity like we are?
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Old 06-08-2009, 02:00 AM #2 (permalink)
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we also have a caregiver that comes during the week but she is going to cut back on her hours...does anyone have any referrals for a caregiver service they trust in the Willowbrook,IL area... Thank you so much for listening
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Old 06-08-2009, 10:46 AM #3 (permalink)
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Jenny,

Welcome to the forum, I'm so sorry that you've been hit with all of this at once! I don't have any specific advise for you, but I'm sure that others, once they see this will come up with ideas to help you a little.

good luck to you! (hugs)
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Old 06-14-2009, 09:11 AM #4 (permalink)
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Hi Jenny, I'm so sorry to hear about your situation. I know a little about the stubbornness from both my dad who passed away from lung cancer, and my aunt who is battling als now. My father was not used to anyone having to do anything for him and was a little hesitant at first, but shortly realized he needed help. Don't get me wrong he still let us know when we were doing something wrong, but it was only because he would have rather have done it himself, than sit and watch us do it. He was a very hard worker, and hated that he couldn't do it himself. The same thing is happening now with my aunt and hopefully soon she'll let us help her. Hang in there and good luck with everything. Congrats on the new marriage!
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Old 06-16-2009, 09:24 PM #5 (permalink)
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Hi Jenny, our stories are so similar I couldn't believe it when I first read it. And yes having the same problem but it only has surfaced recently within the last month. My mother was diagnosed with bulbur-onset ALS the same year we were married, and it was predicted that she would only live for a maximum of 2 years (it took a year to properly diagnose her). Her condition expedited our decision to have a child so she could hold her grandchild. My mother is still with us 1 year later... which is a blessing... but, my heart breaks for her because she is unable to hold her head up/not able to talk or eat, or move. She is so upset all the time now, and, I don't blame her at all...but its so hard because my Dad is trying to help her so much and there is nothing he can do.
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Old 06-16-2009, 09:32 PM #6 (permalink)
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Hi Jenny, I have just joined this site and not even sure if my previous post worked...but anyhow just letting you know...if it helps, I'm going through the same thing. You and I have very similar stories.... I am very sorry about your situation. My mom was diagnosed the same year I was married. It took a year to diagnose her..and they said she had 2 years. She is still here with us, which, is a blessing... because she has been here to see her grandchild and our new home. However, in the last month it seems a lot has changed very quickly. She is unable to hold her head up, and, is very depressed. She only became this way recently, not that I blame her, but I really don't know what to do either. She can't move, talk, or eat. It breaks my heart to see all this, and I can understand why she would be upset about everything all the time...but... I also see how hard it is on my Dad because she is upset with him all the time as well.
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Old 07-12-2009, 02:10 PM #7 (permalink)
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Waterdreamer ... you say that your mom is upset all the time, and especially with your dad. This may be part of the disease. ALS affects three things: nerves, muscles, emotions. It's a condition called "emotional lability." Having ALS is certainly reason enough to be depressed and angry, but many of us express emotions we are not really feeling ... sometimes it is out-of-control laughing or crying, but it also presents as anger out of proportion to what is going on. This is especially hard on caregivers, who get the brunt of it.

Talk to your mother's neuro about this. It is the one aspect of ALS that can be controlled with meds, and it helps the patient feel like herself again and much better able to cope with what is happening.

Good luck.
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