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 My Dad and LBD 
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Joined: Fri Jan 28, 2011 12:32 am
Posts: 2
Post My Dad and LBD
First let me say I am no stranger to caregiving. Mom died 30yrs ago from Multiple Myeloma. I was her caregiver then. Now Dad is the one in bad health. I live in NY while he lives in FL. I feel so stupid not seeing the signs of his decline. He's lost a great deal of weight, suffers from tremors of the right hand/arm, and has had episodes of hallucinations. He was hospitalized 2 weeks ago with a UTI and LBD. He is now in a nursing home unable to speak - he only mutters to himself incoherently. I flew down a few times last year. Once in March at his request so that he could update his will, Health care proxy and DNR. Apparently he never executed these documents - I only found out recently. I saw him father's day weekend and he was combatative very unusual for Dad. Usually we'd call each other at least twice a week. The phone calls from him stopped by the end of June. He didn't send me a birthday card in November as he always did in the past. Thanksgiving he didn't recognize who my husband was on the phone. He claimed that he spoke to my brother (who has no contact with the family in over 25yrs. Brother is a drug addict and alcoholic.) The day after Christmas 2010 I get a call from the local police saying dad claims there were people in his house putting tags on his stuff. The police investigated and found nothing. On Jan 11, 2011 I get a call from the hospital telling me dad is there. A few days later I am told there is another person with a POA - non relative and the hospital won't speak to me. She put dad in a terrible nursing home which happens to be near her offfice. He's on over 9 different medications 2 for dementia alone. I now have to fight for Guardianship. Dad has other problems as well. He has a pacemaker and poor eyesight. The POA finally allowed me to speak to the Nursing home on Monday. Dad mumbles incoherently. They put him in a wheelchair as he can't stand.

When Mom got sick there was no such thing as hospice care. When is it time to put someone into hospice? I keep on saying shoulda woulda coulda and feel that I let dad down. Any insight is greatly appreciated.

Sharon


Fri Jan 28, 2011 10:10 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My Dad and LBD
Welcome Sharon,
I am so sorry for your need to seek out the LBDA forums, this is so sad for you and it is a good reminder to all that when we think something is wrong long distance it generally is, for you Sharon no sense in beating yourself up about it as you have a lot of work ahead of yoiu with trying to get things running smoothly, Please visit the LBDA.org website for there is a great deal of infomation there.
Good Luck and keep us posted as to the developments with your Dad!

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Irene Selak


Fri Jan 28, 2011 10:40 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My Dad and LBD
Sharon,

I'm very sorry to hear about this. Can you find an elder law attorney in FL to advise you? (See naela.org for a directory.)

It's hard to say if hospice is appropriate at this time, given all the medications your father is on.

I hope for the best for your father,
Robin


Fri Jan 28, 2011 12:26 pm
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Joined: Fri Jan 28, 2011 12:32 am
Posts: 2
Post Re: My Dad and LBD
Thank you Irene and Robin. I have found an Elder Care Attorney to start the Guardianship Process. What can I expect now with LBD? Will Dad be able to speak again? Will he ever be cognizant again? I am so grateful for the internet. It has lead me here and hopefully some answers.



Sharon

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Sharon


Fri Jan 28, 2011 1:37 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My Dad and LBD
All of that depends on your dad's treatment. If he doesn't receive proper treatment, he may not recover. With the proper treatment, he can stabilize. To learn what the proper treatment regimen is, according to one LBD expert, see lbda.org and search for "Continuum Boeve 2004."

BTW, it's not a good idea to use your email address as your username. Spiders cruising the web looking for such info.


Fri Jan 28, 2011 2:11 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My Dad and LBD
I am in agreement that with proper treatment, things can improve to the point of better quality of life, and yes E-mail addresses as a user name is not a good idea.

Good Luck !

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Irene Selak


Fri Jan 28, 2011 3:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My Dad and LBD
Welcome to the forum. I'm soorry about your father's condition and your plight. LBD is a progressive, degenerative brain disease. While some medications can show a temporary improvement and slow the progression of the illness, actual 'recovery' is not possible. If they are showing debilitation due to an infection or a bad medication, they can recover to their former baseline condition.

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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.


Fri Jan 28, 2011 4:14 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: My Dad and LBD
Ditto the welcome, Sharon. Glad you found this site. Getting an eldercare atty. is your best next step and that person will be able to guide you with all your legal questions. I'd also suggest finding as many topics on this forum that look like they might be helpful to you right now and read as much as you can. There's a ton of info. and a ton of support here. You will see how close this online community of caregivers is and I think you'll find it as valuable as the rest of us have. It can seem like the only safe place to land in an otherwise very stormy sea!
You thought you and your dad had all his legal papers taken care of, and they weren't. Use that as a lesson that from now on everything you do to try to help your father will require follow up. Some people will follow through on their own, some won't, so keeping communications open and checking in often will help keep you sane and get the things done that need to happen. Don't assume that people you are relying on are organized, logical, thoughtful, responsible, know about LBD, etc. Some will be some won't. Just knowing that you need to really take the lead and follow through might keep you from being frustrated and having any more of those surprises. BTDT!!!
I wish you the best. Stop here often! 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 Jan 28, 2011 9:55 pm
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