Lewy Body Dementia Association, Inc.

I'm new to the forum
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Author:  daddysbabygirl [ Sat Sep 13, 2014 9:55 pm ]
Post subject:  I'm new to the forum

My name is Wanda. My daddy was diagnosed with LBD about 6 months ago. This is a disease that is so hard to follow and understand. There are times my dad seems so clear and then in the middle of conversation he can say something that is completely off. Then suddenly he is right back on target. Some days he is confused the entire day and others he seems normal. It is an emotional roller coaster. It breaks my heart to see him go through this but also my mother. She is his primary caregiver. I try to help as much as I can but I live about an hour away and am not able to go and help as much as I wish I could. His posture has changed so much over the last couple of months and he seems to have severe balance issues. My daddy is an intelligent man and now he can't seem to rationalize much these days. He cries most of the time and this is probably the hardest thing to deal with. Sometimes he can't even tell us why he is crying. I've been told that I shouldn't cry or get emotional in front of him but it is extremely hard when I want to help him but I just don't know how. Can somebody tell me if this is the LBD or is there something else going on that I need to check into?

Thank you for the opportunity to talk. There are few people that understand the stresses of this disease. I know it seems that I have rambled but I don't even know how to put into words what I feel in my heart.

Author:  LTCVT [ Sat Sep 13, 2014 10:16 pm ]
Post subject:  Re: I'm new to the forum

Welcome Wanda and I'm sorry about your dad. His symptoms certainly sound very much like LBD from what you described. I hope your mom can get some help so she doesn't wear out caring for your dad.

Please read as much as you can so that you have info. you need that can help him, or help her help him. There is a ton of info. on here and you can search on key words for things you most need to know about right now.

There are many of us on the forum who have traveled this whole heartbreaking journey through the end with our LOs. This is a huge community of people who know exactly what you are going through and can give you moral support. It's also important for both you and your mom to have has much moral support as you can where you live. Come back as often as you want or need. Lynn

Author:  MollyK [ Sat Sep 13, 2014 11:53 pm ]
Post subject:  Re: I'm new to the forum

Welcome Wanda! I went through the LBD journey with my Dad, too, and lost him in April of this year. I know just what you mean about seeing your capable, intelligent, beloved dad losing his mental and physical abilities. Initially, it's a lot to absorb and SO hard to adjust and begin to accept the new reality - but when you get your feet under you, I hope you are able to find those moments of joy and connection with your dad and your mom too. They will be there - the small miracles where there's a meaningful connection or some welcome humor. And also, you'll get to know each other in different ways. These are the small blessings we must pay attention to.

Author:  amjam [ Sun Sep 14, 2014 6:27 am ]
Post subject:  Re: I'm new to the forum

Hi Wanda. My husband and I went through a year of misdiagnosis and my children living in another state convinced me to take him to a renowned Medical Center for a second opinion. I suggest a good Neurologist and cognitive testing which should result in a definitive diagnosis. I wish you luck and sympathize with you, your Dad and your Mother. I'm sure you are helping as much as you can.

Author:  gailabbi [ Mon Sep 15, 2014 11:30 am ]
Post subject:  Re: I'm new to the forum

Hi Wanda and welcome to the forum! You've found a great place to ask questions and just talk! So many people here have had similar experiences so ramble away and you'll get lots of great feedback! You might want to tell your Mother about the site too as she may have her own questions too! My Dad and I went through it with my Mom. It's not an easy journey but I sure miss her now!

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