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I want to thank everyone for these wonderful posts. I have been feeling terrible lately because I have been impatient and short with my husband. I try so hard to be patient and upbeat, but my frustration is getting the better of me. My husband was diagnosed 3 years ago and can not use his arms or legs and has limited speech and swallowing. He was a healthy 39 year old when he was diagnosed, so it has been extremely hard for him to give up the things he loved to do. I work full-time,we have two children, and we do not yet have home care. It is physically very hard for me to take care of him by myself, but the hardest part is the constant little things- trying to understand everything he says when he won't use the dynavox, wiping his eyes, wiping his nose, adjusting his chair, getting him things, etc. I know that he deserves to have someone do all of these things for him without getting upset, but I just can't seem to accomplish that anymore. It makes me feel so much better to know that there are other people out there who have the same feelings of frustration and guilt as they struggle to do the best for their PALS!
 
My wife can relate to what you are feeling as I am in about the same condition as what you say your husband is. I can no longer do a thing for myself and feel like a burden to my loved ones. Please try not to make your husband feel like this! I know it is hard and I praise God for all the devoted caregivers as I feel this disease is harder for CALS then PALS. Stay strong!
 
My father was diognosed in Nov 2007 with Bulbar Als he is 71. I spent 6 months in 2009 down helping mom with him coming home 2 days after Christmas. He is bed and chair bound and can do nothing on his own so I feel what this lady is going through. Dad has his own decked out room in the house and mom and I put a bed in there for someone to be close with him. I dont know if just mentally this helped dad or what but he began sleeping better. Before he did this he would run a person ragged if you were not in the room constantly. Befroe there was no rest or sleep though the night. All of you who are facing this with a loved one are in my thoughts. I will return to help soon, but I took a break after 6 months. Its the toughest thing I have ever had to do.
 
God i needed to read this tonight. i just left my mom's house and mom brother is with her tonight. she is 2 years in and can't move or speak. I feel soooo guilty when i ignore the moaning but it can make you go crazy. my mom's entire personality has changed. its all about her now and when she wants or needs something she doesn't care what your doing. i also have an 19 month old son who demands my attention as well. i'm thinking of bringing in more help because i don't think i can do this much longer. we are exhausted. thanks for sharing and my thoughts and prayers are with us all. This was one of the first chats that i can really relate to. thank you all.
 
Well I'm still catching up but oh my goodness did you hit a nerve here! Like Kay Marie, I'm in a situation where Glen is actually still fairly independent physically, the FTD (dementia) has caused him to be very demanding, totally lacking in empathy and generally often unpleasant to be around. We have separate rooms, and frequently I am awakened in the morning (EARLY) by him standing next to the bed with orange juice that needs to be opened, or asking me if I want to go to Starbucks. [Yes, the kitchen is equipped with plenty of things he can fix for himself] My son refers to him as stealth Dad, as he'll appear behind us without warning, and just stand there staring. We have to hide certain foods because he'll make the same bad choices over and over... if chips make him choke today, he'll keep eating them, and go looking for them again tomorrow. Or one of us will come out of the bathroom and he'll be just standing there staring... kinda like my golden retriever! And yes... it gets old! And exhausting, especially as we try to allow him ome independence and dignity while trying to keep him safe! Especially hard is his lack of empathy about me also losing my mom and brother in the past 3 months.

I frequently go back to the first thing I ever read about ALS: "ALS is a family disease." Yes... it is hard on our PALS. But it is also hard on us and we need to allow ourselves to feel those frustrations, and try not to feel guilty about them.
 
Thanks to everyone for he insight. We are not yet at this stage but some signs are showing already. I work 40+ hours a week plus do some traveling for work. I have a short trip next week and I am nervous about leaving my husband....as he is much worse since the last time I had to travel. My stepdaughter will check on him and my neighbor too. I only leave the house for work and to run errands. I don't like to leave him for too long.

I am glad I read this post as I just started a pottery class at our local college last week as I realized that I needed to do something for myself. Its just for 7 weeks but hopefully this first step will lead to others. It really felt good to concentrate on nothing else for 2 hrs except the clay and the wheel.

About every 4 weeks or so I seem to have a core meltdown (usually alone) and I do feel better afterwards. Its such a frustrating thing to deal with. My husband has PLS our lives and love was wonderful before all this. I feel so cheated but am still always thankful to God for everything.
 
Just J... the last couple of times I was able to travel without Glen, I actually hired a dog walker to make sure the dogs got out during the day. I clued her in to what was going on, so she made sure when she came in that cabinets were closed, oven was off, etc. It provided me with a lot of peace of mind!
 
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