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 A place to vent 
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Joined: Sat Oct 28, 2006 5:34 pm
Posts: 40
Location: Ontario Canada
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You will always have friends here, RW. We do not judge - we listen and support. If you have any questions we will do our best to answer them or find someone who can.
All of us here have been through the stage where naysayers - family, friend, colleagues think our Loved One is "crazy" or attention-seeking or just plain miserable. Only those of us who are really close to the afflicted person recognize the early signs. Yes, it is frustrating and hurtful, but we get through it.
You sound like a fine man - caring, intelligent and honest. Having LBD doesn't change the past, only the future. Remember who you are and what you have been for as long as you can!!
"When one door closes another opens" - please step in and become part of our little LBD Community. Perhaps your wife would also like to visit here - as caregivers we can certainly help her to begin to understand and accept the changes that will take place in the coming years.
Remember - you are not alone as long as we are here to help you along on your journey.

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"Im pedalling as fast as I can!"


Sun Feb 18, 2007 9:50 am
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Joined: Thu Jan 18, 2007 11:38 pm
Posts: 65
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Hi Fin,
I'm so sorry that you are going through this - my father has LBD, I guess the only thing I know for sure is there are no answers. My only thought is all you can do is while you can, make decisions, make plans. You will be giving yourself and your family a very important gift. Things are going to be rough from now on, there is no telling for how long, and by making those decisions and plans now, at least, maybe in some way you will be there even if you can't. Does that make sense? My father, before he was diagnosed, wondered what was happening to him and why he was supposed to live this way - I never knew what to say to help but I wish that he would have been able to be a part of some of the decisions - and if it doesn't sound to corny I think God is with my dad. He often sees his brother - talks with him a lot (he is deceased) . I don't think he is alone on his journey.

Kani


Wed Feb 21, 2007 8:05 pm
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Joined: Fri Oct 27, 2006 8:07 pm
Posts: 54
Location: New Hampshire
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I agree with you Kani - your dad is not alone. For 2 days before my mother passed away she kept telling me she was having a nervous breakdown, hearing people who were not there and seeing someone sitting in her recliner (she was in hospital bed in living room). Every time we asked her who she saw she smiled or giggled. I truly believe it was my Dad watching over her till it was time for her to go with him. Believe what your Dad is saying.....

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Shelley, Lills daughter, taking care of Mom for 5 years now......


Mon Feb 26, 2007 7:22 pm
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
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I'm wondering if it is possible to delete this post (I am the original author). It embarrasses me to read it now. This wasn't the most appropriate place for me to vent the things I did.

Randy Graves


Thu Mar 01, 2007 1:32 pm
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Joined: Fri Feb 02, 2007 2:48 pm
Posts: 9
Location: Windsor, MA
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I don't think there is any need to delete the post at all. We all need a place to vent free from judgement. I am sorry you are going through this. There are times I am hanging on by a thread and other times coping quite well. There is no right or wrong in my mind. Brenda

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Brenda St. Pierre


Thu Mar 01, 2007 2:58 pm
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Joined: Mon Jun 05, 2006 3:29 pm
Posts: 93
Location: State College, PA
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Randy,

If you'd like to delete your post, all you have to do is click the "X" found on the right hand side of your original post. (If you have a problem and can't delete it, just confirm here you'd like a moderator to delete it for you.)

All the best,
Angela


Thu Mar 01, 2007 3:46 pm
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
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Thank you all for your kind words. I appreciate the support, but I would like to delete this particular post as it contains what I consider to be inappropriate comments about others (which I wrote!). I don't see the "X" to delete, so will a moderator please delete it for me?

Thank you,

Randy


Thu Mar 01, 2007 4:22 pm
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Joined: Mon Jun 05, 2006 3:29 pm
Posts: 93
Location: State College, PA
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I deleted your original post, Randy, but have left everyone's replies so as to not make the writers wonder where their posts went.

All the best,
Angela


Thu Mar 01, 2007 4:48 pm
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Joined: Fri Jul 23, 2010 3:34 pm
Posts: 6
Post Re: A place to vent
My husband has LBD. We keep him here at home with 24/7 help. He is completely unable to do anything for himself except he can still sometimes feed himself and drink some water from a glass. I have no idea what we are facing as we do not see the doctor very often and he doesn't tell me what to expect since my husband is sitting in the room with us. He is very stiff and cannot get up, turn over, walk by himself. He can shuffle a few steps to the bathroom, but mostly we have to get the urinal and help him right where he is standing. He is very unsteady. He sleeps deeply in his chair most of the day, but is awake all night talking, wanting to go to the bathroom, yelling. Can anyone tell me anything that will help us? Bobbie


Fri Jul 23, 2010 3:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: A place to vent
The day/night mixup is very common in LBD. My husband has had the same problem for years--sleeping much of the day, up much of the night. After experimenting with a lot of different medications, he is now sleeping almost seven hours at night and sometimes takes a nap or dozes off for an hour during the day. He does still wake up in the middle of the night [not to pee, as he has an indwelling catheter] but because he thinks it's morning and time to get up. Please ask your husband's doctor to prescribe something to help him sleep. Some can take Seroquel and some cannot. My husband currently takes Trazodone and Temazepam. I'm glad you have around-the-clock care. I wish I could afford it.

_________________
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.


Fri Jul 23, 2010 4:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: A place to vent
Bobbie - have you done any reading about the progression of LBD symptoms? If not, that might be helpful for you. From my observations of my dad, when he was in the state your husband is, he went on to 100% incontinence (both), loss of mobility, loss of a number of ADLs, and now he can perform no ADLs and has been totally immobile for about 7 months, including the inability to even hold his own weight when he is lifted and they try to stand him up. This is scary and heartbreaking stuff, but I find that if I know what's coming, I can deal with it better.
My dad takes sleeping meds and that helps some. Lynn

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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.


Fri Jul 23, 2010 4:41 pm
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Joined: Fri Jul 23, 2010 3:34 pm
Posts: 6
Post Re: A place to vent
Thank you for responding to me. Where would I find a progression of the disease? All l have read is just about the symptoms. We had him in a nursing home for 3 months and that was a disaster...They just didn't have enough time to take care of him so we found a service that provides care 24/7. The caregivers live with us and it costs a little less than the nursing homes. He is 87 and I am 80 and could no longer pick him up. Bobbie


Fri Jul 23, 2010 7:29 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: A place to vent
As far as I know, there are no medically formulated Stages of LBD. On the Spouse Caregiver forum [it's a yahoo group and restricted to spouses of people with LBD] there is a list of stages of LBD that was put together by some of the members, so it's not formal, just based on experience. I am not at liberty to post it here, unfortunately.

Unlike Alzheimer's, LBD symptoms fluctuate widely and can move from one stage to another and then back again for a time. So it's difficult to pin them down. Stage 5 they are bed-bound and usually can't feed themselves, have problems swallowing, often unable to speak, etc. Some don't ever go through stage 5. They don't die from LBD per se but from aspiration pneumonia, urinary tract infections leading to sepsis, seizures, etc. If no feeding tube is placed [or IV inserted] and they are unable to drink fluids they will die from renal failure.

I think we all hope that the end of our loved one is as pain-free as possible. It would seem cruel to me to take extreme measures to keep them alive when they were deteriorating at such a rate with no hope of improvement.

_________________
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.


Fri Jul 23, 2010 8:16 pm
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Joined: Fri Jul 23, 2010 3:34 pm
Posts: 6
Post Re: A place to vent
Lynn, please contact me again. I messed up your email address...Bobbie


Sat Jul 24, 2010 11:10 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: A place to vent
See neuroguy's post here for the stages written by spouses:
viewtopic.php?f=13&t=1357


Sun Jul 25, 2010 11:41 am
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