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 Our road with Lewy 
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Joined: Sat Nov 02, 2013 8:44 pm
Posts: 6
Post Our road with Lewy
Hello everyone,
My name is Athalia and my mother and I have been dealing with this terrible disease in my father since Feb. 2012. This forum has brought me much comfort in knowing there are others who are going through the same thing we are and when we are having very rough days I can always come here and read all of your comments and somehow it calms me. Momma and I are both at the point that we will be so grateful when his suffering is over. I thought the worst day I would ever have with my Daddy was the day I buried him but I am finding that not really true anymore. I also used to so look forward to the "good days" with him but now they are so few and far between (and such a painful reminder) that I don't even look forward to them anymore. He has a violent tendency with his disease and his medication has just had to be increased. He has also become wheelchair bound more or less and I often wonder how much more he will have to endure before he can be a peace. My mother does not handle his disease well at all and it can become very stressful trying to deal with her and him at the same time. We did have to put him in a local nursing home and I am so very thankful for how good they are to him. We live in a small county so nearly everyone who works there knows us all very well. I really wish we there were more indicators or "stages" for this disease as I am sure all of you do. The roller coaster ride definitely takes a toll......

Tue Nov 05, 2013 6:28 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Our road with Lewy
Althea, it sure is heartbreaking to see our LOs suffering so much with this terrible disease. My dad's last 1 1/2 yr. were he(( on earth, and every day I wished it would be over for him. I could not stand to see the suffering and mental anguish because he knew how bad off he was, and there was nothing I could do to make it any better for him. Hang in there, it is a tough, tough road to navigate. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Tue Nov 05, 2013 9:51 pm

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: Our road with Lewy
Welcome to the forum Athalia. It's definitely not an easy road, this disease. Sounds like you've got things set up so you can cope. A nursing home where you know everyone, you can't ask for better than that! And you can't deal with this disease yourself; especially with a LO. If someone else can do the main caregiving and you can visit as much as you like, and escape whenever you need to, you can get through it. Good luck to you and your Mom!

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Sun Nov 10, 2013 4:12 am
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