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mytwoboys

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OH
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Canal Winchester
Hi all. I don't post much, but I lurk and read quite a bit. Diagnosed in May 2007, my husband's condition has deteriorated to the point where "we" (aides during the day and me at night and on weekends) just could not manage it anymore. He has been "locked in" for 14 months, his breathing is poor, he has lost most of the control of his bodily functions, his muscles are so tight that any movement to change clothes, clean him, etc. is very very very difficult. I, for the most part, was having a nervous breakdown. He requires so much more attention than I could give him at home - there was only one of me off-hours and the aides were worthy of their pay only about 70% of the times they did show up. Anyway, hospice has moved him to their in-patient facility. It is almost as expensive as a decent nursing home, but probably nicer. I guess we are lucky they had a bed. I am self-paying. Thankfully he's got a 401k I can cash in.

Anyway... I still feel like a failure - I somehow couldn't manage it all. Guess I'm fishing for words of encouragement. I have "friended" and been "friended" by a number of you here and wanted to give you an update. I am not used to failure. It hurts more because I failed him. Thanks for listening.
 
I don't "know" you, but I can imagine from your description how very difficult this has been. My heart aches for both you and your husband. It's the disease that we hate, not those suffering from it, whether patients or caregivers. I hope you hear from those whom you've befriended and feel supported. Of course, I hope your husband is given very good care and that you can still see him.

Peace is my prayer for you,
Ann
 
I am sorry to hear this, thanks for the update, so sorry it is so stressful, like Anne stated, hate this disease, but sure feel for those touched by it.. Your Avatar always make's me smile, wish you the best, gosh I am sorry.
 
i hate als and our country for not having a humane health care system. u have done the best u could do under horrible circumstances. you are NOT a failure. you r also not superhuman. i am sorry u r going thru this.
 
dont beat yourself up. it is far too much for one person to take on. you did what you could for as long as you could, and probably a little longer. i am sure your husband knows how much he means to you and knows that you did your best.
like the others have said, its not you, its the ALS. The beast. Take care of yourself now, and once you are feeling better, then maybe you can go to where he is and help out if you want. Please dont feel so bad. youve done alot more than alot of people are willing to do.
good luck to you.
 
I lost my wife on Aug 30th,hospice brought her home per her request,she had suffered so so much,I held her hand as she took her last breath,our 45th would have been Oct 16th,I know what your going through,I had my famley here and we were on a 24 hour watch.She was my bride and best friend.Its not easy,Hospice kept her pain free.

Hugs Ken
 
I'm sooo sorry that it got so hard for you. You were doing more than humanly possible--something had to give. You did not fail anybody. Your boys need a healthy, sane mother. I know you took everything--including them--into consideration. Hopefully, you will now be able to manage everything a little easier. You are a strong, and caring person. I want to thank, you for putting a smile back on my face more than once. Now, make some plans to do some fun things with your kids--which you have not been able to do for quite some time. Again, believe me--trying to do what you were doing, practically all by yourself was just not possible. I wish all good things for you.

Laura

It is a good thing that hospice had a bed for him, or you may have been looking for a bed for yourself very shortly--in the mental hospital. You simply did not have enough help and support to continue.
 
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Please do not be too hard on yourself, this disease is just so awful. I am so glad that you were able to look after him for as long as you did and that you were able to find a good place for him.
 
You did the best you could for as long as you could. There is no shame in that.

AL.
 
Oh sweetie.. you are SO not a failure. I know how easy it is to feel that way. Believe me I still go over Glen's last few weeks and days and question every decision, every action, every inaction. You have done a wonderful job and you have done what is best for both of you! Be kind to yourself, you have earned it.
 
Thank you all for all your kind words and support. I went to visit him yesterday afternoon. He looks better. He has people there 24/7 to help him with whatever he needs. There is at least one other PALS there with him.

The kids seemed ok with the news he wasn't coming home - I am taking them to visit this weekend. The facility is near my office - that helps - but 25 miles from my house so kids visits will be limited to the weekends. He has his eyegaze set up with wireless so he can email and text and a nice flat panel tv on the wall. Apparently, pets are allowed to visit - so I may be dragging 150 lbs of dogs in there soon. They seem to have taken this harder than anyone since they don't understand what happened and where he went - they just knew he was gone. They have been by his side 24/7 for more than 2 years (since he stopped working).

I still feel weird. There is an uneasy "quiet" in the house.

Again, thank you all for your support.
 
I am happy to hear that the transfer worked out well for you all.
Now take good care of yourself. You deserve a little TLC.
Pat
 
It sounds like you have made a difficult but solid decision to make sure he is receiving the care that he needs. The facility sounds nice and I am glad that they are working with his assistive technology. I smiled at the thought of you dragging 150 lbs of dogs in but that really sounds a loving visit for all. Kudos to the facility for allowing pets to visit.

I hope things continue to go well and you guys get adjusted.
Take care.
Dana
 
Your husband is where he needs to be, and you are by no means a failure. We can only do our best for as long as possible, and then we have to figure out what step to take next. You have just taken the next step.
 
you have no reason to feel quilty. I am so sorry this mean old ALS,has made so hard for you and your husband. I have told my children that when i get to that point I want them to put me in full time care facilty. I would feel better than them struggling to try to care for me ,then I would feel guilty and have ALS. There is no getting around it,it just does not feel fair to have ALS.
 
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