View unanswered posts | View active topics It is currently Sat Apr 19, 2014 10:51 am



Reply to topic  [ 11 posts ] 
 Another Newcomer 
Author Message

Joined: Mon Dec 29, 2008 10:38 pm
Posts: 3
Location: Delaware
Post Another Newcomer
Hi All,

My name is Dottie and my Mom, who has been suffering for almost 5 years has just been diagnosed with Lewey Body. Up until a few days ago, I had never heard of it. She had been at home with Dad but things just got to the point where he could no longer care for her so on the Friday after Christmas, my brother took her to the hospital where she was admitted for observation, then moved to a nursing home/rehab facility and then I guess will become a full time patient of the nursing home. I have not seen her since before Thanksgiving as I live 3 hours away and the ride is really hard on me because I have fibromylgia. We are going tomorrow to see her and to meet with an elder care attorney. My poor brother has been dealing with both of them and he is about at the breaking point and I am worried sick about him. Now, Dad, who up to know was fairly with it, is going downhill, refusing to eat, having bowel accidents all over the house and won't even dress himself. This is just horrible. I am so thankful that I found this site and am hoping to give all of you as much support as I expect to get from all of you.

Does anyone know if this is inherited or not? My brother is worried that we are looking at our future when we look at Mom who I understand is now just sitting in a wheelchair with the mask like expression and staring. I have been doing a lot of crying and just feel so sad and I know I have to snap myself out of this, just too much to take care of now. I cannot feel sorry for myself, just have to accept that the wonderful parents I knew are gone and in their place are two totally dependent people who have to be cared for and fed and bathed, just really sad.

Well, that is enough for now, I will be looking forward to hearing from some of you and to hear what you have been going through with your loved ones. Thanks for taking the time to read my story.

Dottie

_________________
Hurting in Delaware


Mon Jan 05, 2009 2:09 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Sorry you have to join us.

What's the problem with your dad? Should he be placed in a care facility with your mom?

Yes, you already know that you need to move on with your grieving as the past is gone and your brother probably really needs your help and support. Figure out what you can do at a distance to help your family. Examples: educate yourself on LBD; call daily to speak with each parent; plan a long stay at their house to pack up stuff.

Good luck,
Robin


Mon Jan 05, 2009 2:54 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Dottie,
Welcome to the LBDA forums, Glad you found us and you will find many answers to the many questions I am sure you have with being new to LBD. I am sure it is hard on your brother but you are also trying to be supportive of him. You caould always contact the Office of aging in their area and have them do an assessment of your parents situtation.
Also try not to think about your parents as being gone, they are very much still here, just their needs are different.
Good Luck and when you post agin try to post in the areas that might fit that question or comment, that way more people will see it and be able to add their comments!

_________________
Irene Selak


Mon Jan 05, 2009 3:34 pm
Profile WWW

Joined: Mon Dec 29, 2008 10:38 pm
Posts: 3
Location: Delaware
Post 
Hi Robin and Irene,

Thank you for welcome and I too am sorry I have joined this group. I really don't know what's wrong with Dad, he was OK, functioning while Mom was still in the house but now that she is out, I think he is just giving up. He will be 88 on the 29th of this month. He has an appointment with his doctor tomorrow so we shall see but am guessing he will be put into the hospital because he's not eating and with the runs, he's very weak.

Anyway, I have to get up early as we are going to NJ tomorrow. Irene, do you by any chance have a list of doctors in NJ who treat this form of dementia? I really don't think my Mom's doctor is doing the best for her in regards to her medications. Thanks

Dottie

_________________
Hurting in Delaware


Mon Jan 05, 2009 10:46 pm
Profile

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post 
Dottie,

So sorry to meet you this way. Wishing you, your brother and your parents the best of luck.

This site is wonderful. You will find support and information which will be invaluable to you and your family.

Big hug for helping your parents.

_________________
Dianne C.


Tue Jan 06, 2009 2:24 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Dottie,
I sent the list privately, just too long for here, Good Luck with finding a new doctor!

_________________
Irene Selak


Tue Jan 06, 2009 4:17 pm
Profile WWW

Joined: Mon Dec 29, 2008 10:38 pm
Posts: 3
Location: Delaware
Post An Update
Hi All,

Well, the last month has been just awful. My Dad went into the hospital and after surgery to remove his spleen, he went downhill fast and after two weeks he passed away on January 25, just days before his 88th birthday. We took Mom, the one with Lewy Body, to the afternoon wake and she kissed him and touched him but then asked to leave, so my brother took her back to the nursing home and we decided not to take her to the burial. She seems to be slipping further away, she scoots constantly all over the nursing home, she won't sit still and seems to be starting to have trouble swallowing. She didn't know my brother the other day but then when he left she told somebody that he was her son. She tried to get out of the place so now in addition to the seat belt on her wheelchair, she has an alarm on her ankle. We ask her if she knows Dad is gone and she says yes and that she thinks about him, but not really sure it has sunk in. It's just been an awful month and now we are going to be forced to sell their house before we wanted to as neither of us can face going through their things just yet. If this is a nightmare I wish I would wake up. I miss my Dad so much, can't stop crying.

Dottie


Mon Feb 09, 2009 12:34 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Dittie,
Please except my deepest condolences for the passing of your Dad's sudden passing, as if things aren't hard enough with yopur Mom's LBD.I hope things can settle down for you so you can grieve well.

_________________
Irene Selak


Mon Feb 09, 2009 1:22 pm
Profile WWW

Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
Post 
((((((Dottie)))))) I hear all that you are saying - my mom passed last year, no dementia but I put it down to loneliness, my dad passed away in late 2006, his was a broken hip, dementia and he was in a nursing home. You will make it through all of this and I have found that the tears haven't stopped completely but they do ease up somewhat. I think that most of us look at our parents as being the strong ones, the caregivers of our whole life and then the tables turn and that is the hardest part to take. I will be praying for peace for you.

Liz


Mon Feb 09, 2009 2:22 pm
Profile WWW

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Dottie,

My condolences on the passing of your beloved father. I'm glad his suffering has ended.

It's OK if your father's passing doesn't sink in with your mother. I wouldn't discuss your dad any further with your mother, unless she brings him up. I'm sure this is very upsetting for all of you.

Best wishes,
Robin


Mon Feb 09, 2009 2:40 pm
Profile

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post 
Dear Dottie, we can feel your grief through your posting. I am so sorry for the loss of your dad and, in many ways, your mom as well. You can do this, especially if you and your brother support each other.

_________________
Renata (and Jerome-in-Heaven)


Mon Feb 09, 2009 5:22 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 11 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr