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Joined: Sun Jan 06, 2013 7:35 pm
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Hello new friends :| My name is Wendy and I am struggling with my Daddy's diagnosis of Lewy Body Disease (LBD), just as I am sure you all are. My sympathy and empathy goes to each of you with your love one suffering the horrific disease. My family includes, my Mother whom has been married to my Father for 50 years and I have 3 siblings. We're a close family and this disease has robbed us of our Daddy, husband, and grandfather. When he was first diagnosis by the neurologist, we had never heard of LBD. My Father had suffered mini-strokes for several years and had white matter disease noted on a MRI but inclusive to the disease we feared most, Alzheimer. He has some similarities, but not enough to say it looks like the disease. His sister and Mother both were Alzheimer patient's. My Father is a entrepreneur and has always been a wiz with his figures. He and my Mother are both 74 yrs old and have worked together most of the years. My Mom is old fashion bride, very submissive lady and my Daddy has always been the leader of the family. They own many properties, commercial and rental and with the economy and LBD, they're really struggling. More my Mother in the business aspect because he can't do business, as he once could. Thank God, she's always been the bookkeeper and knows the business, but with the disease she's consumed with so many other challenges. We're in the stages of vivid hallucinations, (most recent someone broke in and only my Daddy saw them), his words and speech are difficult but he's still very coherent and knows what he wants to say but can't get the words out. The other challenges are trying to keep him from driving, a big battle for us. He recently had a birthday and had to renew his license and we just knew he wouldn't pass the test but somehow the older lady let him get by. The most frustrating of all, is his paranoid behavior "thinking" or in his mind knowing, my Mother has boyfriends. That's the very last thing my Mother would ever do, but I've read enough to know that's very common. For me, it's very scary!
I live on a farm where my parents live, 40 plus acres and a horse farm. Thank God, I built here just 3 years ago after a divorce. If my Mother was out here in the country all by herself with my Daddy's condition, it would be far worse on her and me for worrying. I've went up the hill, walking distance, to intervene on his behavior. He hasn't crossed the line, as far as physical, but the emotional is horrible for my Mother and me. He gets in his head that she's on the phone with her boyfriend when we call her. When I call her in particularly, he thinks it's a man's voice. When she's on the phone he puts his face, cheek to cheek, listening to the conversation. He want let her out of his site. He watches every move she makes and more. For most of their married years, he was traveling on business or gambling (that was working to him) he plays cards and rolls dice. He was a high roller most of my life chasing the big money, it never came but he was a great provider. That's another huge factor now that he can't hustle, he feels like because of that my Mother wants another man. All LBD, I know but some days I worry so over her state of mind. On Christmas night all our family, immediate including grandchildren adult mostly but i have a 10 year old, anyway he thought the grown granddaughters and grandson were here to make a drug deal, and the guys were getting ready to make the move on the girls. He was so SERIOUS about this and he swore my Mother was involved as well. Again, we're not of that caliber and I feel I should say my Mother raised all of us kids in church and she and I, my son, brother etc. are in church every Sunday. Very active, but only a short period in my life my Father was active and that's been many years ago. He's a christian man but not a church goer like the rest of us until the past year. But he goes and is suspicious of every man there and it's very uncomfortable. The last thing I'll share and i am not sure if this is how I was suppose to introduce myself or not, but he and Mother went on a road trip about a month ago, against hers and our will but none the less my Daddy insisted she go with him to Mississippi to a Casino. They got in horrible traffic in Birmingham, AL and it scared her and him but the weird thing is after they got through the traffic he started talking to a person that was in the truck with them. He said she looked like my Mother and was wearing her clothes and that she was mean. Long, long story about that and we thought we were going to have to go after them, threatened to but my Mother promised she would drive back and said she would NEVER go again. We were all here waiting when they did get home and were AMAZED at how much he didn't even look like our Daddy, coloring, eyes, walk/gait, voice, and most of all the story he shared. He was so sure (and still believes it) that another person was with them that day and that my Mother did something to her. Anyway, this disease as you all know better than me, is devastating, heart wrenching, makes you full of anger and emotions. I haven't been reacting appropriately and neither has my Mother or one of my brothers, we want to correct him, defend his accusations about our Mother but learned from lots of research that we were only making it worse. My sister handles him better than any of us but she's around the least too. I think I have been in denial, not about his disease directly but indirectly. What I mean is, my Daddy to me is my rock and was so strong in his business work ethics and very smart, that to see and hear him do the things this disease does was something I didn't want to allow and condone so, I pleaded with him to realize that my Mother would never do the things he's accusing her of and I would NOT agree with the inaccurate information he might be saying, etc. I've had my pity party's the last 10 days (being off from work) cried a lot, shouted out to the air and sky which released some of the anger and emotions. I am anxious to learn more by joining the forum here and have support from you all and to educate me and my family about LBD. I have ordered a few books but they haven't arrived yet. With my walk through this dark valley, maybe one day I will be strong and educated enough to support someone like myself, that is not familiar with LBD. God Bless you all in your paths and look forward to hearing from you. :|
Sincerely, Wendy Allison


Mon Jan 07, 2013 1:43 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New member to forum
Wendy, let me be the first to welcome you to the forum no one wants to have to join. Your father's delusions are so very typical of Lewy and my husband has had similar delusions for many years. It is most distressing! I hope you can take the time to read existing threads on relevant topics here so you can get a feel for what others have experienced, too. You will not feel so alone. God bless you for your care and concern.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jan 07, 2013 2:17 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: New member to forum
I want to welcome you too Wendy. Your mom will certainly continue to need yours and others' help. Please make sure your dad does NOT drive anymore. With delusions and hallucinations, he could be a real danger to himself and others on the road.
Has his dr. tried any drugs that might help his symptoms? Have you checked into facilities when he is too much for your mom to handle at home? It is best to do this before it is absolutely necessary - you don't want to be in the position of having to find a place within a 1 or 2 day period, like many people on here have had to do.
Good luck, and do lots of reading on here. Information can help you, and of course there are lots of people here to give you moral support too. 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.


Mon Jan 07, 2013 7:40 pm
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Joined: Sun Jan 06, 2013 7:35 pm
Posts: 4
Post Re: New member to forum
Thank you kindly for the warm welcome! The suggestions are certainly appreciated in regards to my Daddy. This is all so new for us, and we're struggling with day to day to lifestyle changes for all of us. For someone so independent, to become dependent is such a drastic change for him and my Mother. Thanks again and may God provide us all the strength, patience, wisdom, knowledge and everything that we need to care for our love ones.

Wendy


Tue Jan 08, 2013 12:50 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: New member to forum
Wendy, I daresay all or most of our LOs struggling with this horrible disease were very independent. It is one of the saddest parts of the whole thing for we family members and friends to see. That's why this forum is such a great community - we are either "there" or have "been there, done that". Along with that comes the change where the adult child becomes the parent of their parent(s). That was a big one for me - my dad was always taking care of everyone in the family in so many ways. When I had to take away his driving privileges and figure out his whole life, it was a huge and traumatic change for both of us. My thoughts are with you in this journey. Sending a big hug, 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 Jan 08, 2013 12:53 pm
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Joined: Sun Jan 06, 2013 7:35 pm
Posts: 4
Post Re: New member to forum
:| Awe Lynn, your words of comfort are felt. When the LO's are the leaders and caretakers of their family, especially with men, this disease has a wicked way about making them feel like they've let the wife and family down. With my Dad, he's so paranoid my Mother has "men" in her life to fill the void he thinks she has. With that being said, we as women know how sensitive some men can be when talking about this topic. It's very challenging for my Mom with ugly comments and/or accusations he makes to her in private. I've overheard and he doesn't necessarily hold back around anyone in the family. Thanks again for kind chosen words!
Wendy


Tue Jan 08, 2013 11:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
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That whole accusation thing (which mainly I hear men accusing their wives) must be just awful to deal with. So many other "conversations" you can redirect, play along with, etc. But when a person is accusing their spouse or other LO of having affairs and such, what DO you do? I feel so badly for people going through this, and I know there are LOTS of people on this forum who are or have gone through this. Take care, 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.


Wed Jan 09, 2013 7:11 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New member to forum
Dear Wendy,
Welcome to the LBDA forums, I do hope you can find this a place of comfort and information, I know as you read other stories and comments it will give you some peace knowing you and your family are not alone in this illness. The emotional toll that LBD can be horrible for a family dealing with it but as a family you just have to remember ever tho your Dad was the leader of the family he is no longer in control of what he says and his actions. Good Luck and please visit us often !

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Irene Selak


Fri Jan 11, 2013 12:31 pm
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