View unanswered posts | View active topics It is currently Sat Aug 30, 2014 6:36 am



Reply to topic  [ 12 posts ] 
 Old but new 
Author Message

Joined: Sun May 27, 2007 10:01 am
Posts: 9
Post Old but new
Well, I haven't been here in a long while. My dad was diagnosed with LBD in January 2007. In the early days, this forum was so helpful and I would like to thank everyone for being so honest in their posts so that the rest of us could prepare for what was/is to come. I remember one lady, and her DH was named Jerome, and I believe he was near the end. At the time, I just could not imagine my dad in that state. I was 35 at the time with a 12 year old and 5 year old. It just didn't seem possible. But, here we are. We've been through all the stages, taking the car away, moving out of our house to an assisted living facility, a night of wandering and a strange hallucinatory breakdown leading to a dementia unit, and now the phone call that he is being taken off of solid foods. I just wanted to say, it is so comforting to be able to come on here and search through topics and educational materials for support. It has gotten me through the evening. Tomorrow my daughter will take the SAT for college and my 66 year old father will begin the inevitable decline that we all know is coming. I tell myself it is the circle of life, but it's horrible none the less. Anyway, just sending it out into oblivion. Thanks for listening.
Jennifer


Fri Mar 09, 2012 11:24 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Old but new
It is comforting to know that others have traveled the same road, though the road be rocky and winding. God bless you, for I know this has been a trial for you.

_________________
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.


Sat Mar 10, 2012 12:33 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Old but new
Jennifer,
We here in "oblivion" are listening! You are referring to Renata, whose husband Jerome died several years ago. His lovely photo is in Neurology Now, and I see it often in local support group meetings. Hard to believe so much time has passed. I hope some of it has been good for you and your father.
Robin


Sat Mar 10, 2012 1:35 am
Profile

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Old but new
Both you and your father are in my prayers,
God Bless,
Ger xxx

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Sat Mar 10, 2012 9:59 am
Profile

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Old but new
jennifer,
thinking of you and your family and also wishing your daughter well on her SAT..sorry that you are traveling down this path.. like you, i have taken such comfort and knowledge from this forum... i still have so much to learn .. but i feel i'm a much better caregiver and advocate for my husband, by being here..

wishing you well, thru the rest of your journey
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat Mar 10, 2012 6:28 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Old but new
Jennifer,
When one looks back, its almost hard to believe what you go through and for you are still going through, I pray in the days to come that you and your family finds peace in all of this and that your Dad travels well on his journey in this stage of LBD.

_________________
Irene Selak


Sun Mar 18, 2012 6:30 pm
Profile WWW

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Re: Old but new
Jennifer, when you joined this forum, Lewy Body was so little known but now it is better recognized and treatment is becoming more refined. I do hope it has helped with the care of your dad. Come back anytime you need a boost. I see you have come to learn that the new members are just as comforting as the former group. Best wishes to you and your family.

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Mon Mar 19, 2012 2:14 am
Profile

Joined: Sun May 27, 2007 10:01 am
Posts: 9
Post Re: Old but new
Thanks so much for all of your kind words. They said my dad failed his swallow study last week and wanted to put a feeding tube in him. I elected to sign the waiver and am allowing him to have mechanically soft food. He still recognizes me and can speak so I just felt it wasn't time for hospice. They said he is aspirating his food and his reflexive cough is gone, so I guess we will most likely end up down the aspiration pneumonia path. Does anyone have any information on that?


Mon Mar 19, 2012 8:13 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Old but new
You can do a search of past posts on the topic of pneumonia.

It is called the "nursing home friend" or the "old man's friend" because it is supposed to be a peaceful way to die...if enough pain medication is administered, I suppose.

Many in our local support group don't treat the first bout of pneumonia. If the first bout of pneumonia is treated, many don't treat the second bout, if it follows quickly on the heels of the first.

Putting someone on hospice doesn't mean they are going to die the next week. It means that the chances are high that they will die in 6 months. In Lewy Body Dementia, not being able to safely swallow would likely qualify your father for hospice. There are lots of benefits to both the individual and family for having someone on hospice. It can feel like a momentous, life-changing (life-ending) decision. But most everyone says after their loved one died that they wished they had put their family member on hospice much earlier.


Mon Mar 19, 2012 12:53 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: Old but new
I'd also encourage you to get a hospice eval. for your LO. Hospice is not a death sentence, it is extra help and support in a person's final months, and is usually a very valuable support to the family.
Personally, I am not a fan of feeding tubes and other extraordinary medical interventions when a person has so many medical issues and is probably nearing the end of life. There are many postings in this forum where people have discussed their situations and opinions, and you may find those to be of some help to you. All the best, 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 Mar 19, 2012 9:05 pm
Profile

Joined: Sun Jan 11, 2009 8:17 pm
Posts: 104
Location: Arkansas
Post Re: Old but new
Hi Jenifer and all,
I'm am also old but new and check in from time to time. It great to hear from many still on the forum. My mom is doing well concidering the many years with lbd and 91 yrs old. She can no longer walks but has some remarkable times to interact and can feed herself most days. She still lives with me and we have a calm simple life, which I know she benefits from. She is only taking liquid nemenda and a 25mg trazodone and I'm concidering stopping both as we don't think they are helping???? She has been taking cipro for an UTI for 5 days now and I have been very worried about it because of all the side affect. How we know given thier limits to communicate? I'll be glad when the 10 days are up. Take care all. Laurie


Sat Apr 07, 2012 10:25 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Old but new
Hi Laurie,
Thanks for the update on your Mom and I am glad you are still able to keep her home with you and I am sure it is what helps her, sorry about the UTI, if it were me I would be more concerned about the UTI than the cipro I think that seems to be fairly harmless for them.
I am glad you are still checking in here at the forums.

_________________
Irene Selak


Sat Apr 07, 2012 4:44 pm
Profile WWW
Display posts from previous:  Sort by  
Reply to topic   [ 12 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 MaĆ«l Soucaze © 2010 phpBB.fr