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 Caring for my Dad in Virginia 
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Caring for my Dad in Virginia
Hi, I'm just not even sure where to start. I'm so overwhelmed. My Dad is 69 years old. He was just diagnosed with LBD last week. Over the years there have been a lot of psychiatric issues with Dad. He has had prescription drug addictions. Eventually, he started having physical symptoms that resembled overmedicating of pain killers. I contributed his behavior to that. Well, in January, I moved him in with me and my family because he got to the point that he was unable to remember what day it was, when or whether he had taken his blood pressure meds, he was losing his balance, falling, blacking out. He was also having GI problems. He wore a heart monitor for 30 days. It was ok. Nuerologist sent him for a nueropsychiatric evaluation, blood tests, CT scans, physical exam. Finally, after visits to ER every week and doctor after doctor, a diagnosis. Now what? My Dad's symptoms have progressed so quickly. He has tremors. His memory is awful. Horrible hallucinations. Trouble walking, especially up and down steps. Now I'm noticing him pocketing food once in a while. Occasionally having trouble swallowing. Doesn't want to go anywhere. Dr started him on Serequel and Arecept (sp). He has a PT evaluation on the 15th. I've been trying to figure out what stage he is in but I'm not having much luck. Don't see dr for 2 weeks. My Dad is a big man. I'm really worried about how we will take care of him. I'm just so worried for him and it's so hard to see these changes happen. I work from home so I'm able to be with him. Also have a 13 year old son and 18 year old step daughter at home. Loving husband also here with us. I also feel a tremendous amount of guilt for thinking his symptoms were due to drug abuse. My older son who lives with his father is in remission from testicular cancer. Just feeling overloaded and need to take a breath. Sorry this was so long. Believe me it could have been much longer!

Thanks for listening, Michelle


Wed Jul 06, 2011 11:19 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Caring for my Dad in Virginia
Welcome, Michelle! I am so glad you found us. This is not a club any one particularly wants to join, but if you have a loved one with a Lewy Body diagnosis it is a great place to hang out.

I don't think that you are going to have much luck figuring out what "stage" your dad is in. Lewy Body doesn't progress in stages the way Alzheimer's does. It is more like a roller coaster than a giant slide, if that makes sense. Good days and bad days. Decline and a little recovery and decline again. And the duration of the progression varies considerably from one person to another. Some people progress to the end in less than 2 years and some go more than 20 years, with a fairly decent quality of life for much of it.

Various drugs can help some people a lot. Other people don't respond to the same drugs favorably at all. Coming up with a drug program involves trial and error, but the outcome can be worth the tedious wait.

We have been living with Lewy for 8 years -- 7 in early stage, 1 with advanced symptoms. The advanced stage came first! It is very hard to predict what will happen with your dad, but you can be hopeful that many of the symptoms he is experiencing can be addressed and reduced. Not all at once though. There is no cure, but symptoms can be treated.

Again, welcome. Come often. Browse the posts. And feel free to chime in with questions, comments, and answers!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Jul 06, 2011 11:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Caring for my Dad in Virginia
Welcome, Michelle. So sorry you have to be here but glad you found this forum. Yes, I can see why you would feel overwhelmed. Please, don't delay looking for care facilities and in-home care agencies, even if you have no current plans to place him. Find out what's available, analyze his resources [as well as yours, financial, physical and emotional]. Make sure you have at least medical power of attorney for your father.

Jeanne is correct that Lewy is a roller coaster ride. However, it is progressive and most will decline in a fairly linear fashion, with small recoveries and remissions. So it is certain than your father will get worse and almost certain that you will need outside help at some point. God bless you for caring for your father and I wish you well.

_________________
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.


Thu Jul 07, 2011 12:08 am
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Caring for my Dad in Virginia
Thank you so much for your responses. You are so right about it being a roller coaster ride. Even before the diagnosis there were some days, the "good" days, that if I didn't know better I would think he was getting better. Then, the next day or even that evening, symptoms would all of a sudden be right back again. It's all just so frustrating. I'm sad and angry at the same time. So many feelings at once. And can't even imagine how my father is feeling. He says his hallucinations make him feel like he's fighting the devil at night time. God bless everyone dealing with this illness.


Thu Jul 07, 2011 12:00 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Caring for my Dad in Virginia
Dear Michelle,
Welcome to the LBDA forums, glad you found us but sad for the need. There is a great amounnt of information and support here for all ! Visit often !

_________________
Irene Selak


Thu Jul 07, 2011 2:36 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Caring for my Dad in Virginia
Michelle,

I hope you will not burden yourself with guilt over initially thinking that your dad's symptoms stemmed from drug abuse. Just read the forum for a while and you will see how much difficulty many people have getting a correct diagnosis (or probable diagnosis) of LBD, even people who have seen specialists like neurologists. How could you have been expected to diagnose this by yourself?

I'd like to second the comments about "stages." We all want predictability in our lives. I spent the first six to nine months after diagnosis of my mother's LBD trying to figure out what stage she was in, and what I was actually looking for was a prognosis. LBD is just not that predictable, except for the overall downward trajectory. No one can tell you how fast, how long, etc. That is just one thing that makes LBD such a bear.

It's good that you found the forum. There is a lot of information and many caring people who can help you get through this.

Good luck!

Julianne


Thu Jul 07, 2011 3:37 pm
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Joined: Sat Jun 18, 2011 9:53 pm
Posts: 17
Location: Costa Mesa, CA
Post Re: Caring for my Dad in Virginia
I just wanted to say welcome and that I am somewhat in your same boat. Best thing I can suggest at this time is to read-read-read: get some books (I just ordered 2; in addition to this incredible forum resource) and join support groups. Even after reading here for a month+, I was fairly overwhelmed at my first support group meeting I went to this week!! We can and have to figure all of this out as we go along. Today is my birthday but ended up being a bad day for my Dad - he was naked and stuck on the floor for several hours and I think he got dehydrated so I had to disinvite him (and he agreed) to going out for dinner with us tonite......I'm about to cry but this is just another day in the life...
Sincere hugs from California!

_________________
Jenna - daughter of Dad diagnosed in 2010 with PD and in 2011 with probable LBD. Symptoms were present for a few years prior. Dad is 74.


Thu Jul 07, 2011 9:02 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Caring for my Dad in Virginia
Welcome Michelle - you've already been given some sound advice here as well as a lot of moral support. This forum was a life saver for me. I was just thinking today how much my life has changed in the last 2 years. It was July 18 when my dad went from independent living, with some caregivers coming in a few hours a day to him being hospitalized, then to rehab, and then to an ALF. He went downhill overnight, and barely recouped any ADLs after the hospital stay.
It really is unpredictable, and he lasted only about 18 months following his big decline. It seemed like an eternity - it was so awful seeing his lack of being able to do anything for himself.
The one thing I did right was investigate living situations as I'd started to notice things about his living alone that really bothered me (and him). It's never too soon to look into alternatives for your LOs care, whether it's in-home helpers, friends and neighbors, ALFs or SNFs. When someone declines so fast, it takes a big burden off you if you have done the work to find out suitable alternatives for caring for your LO.
I wish you all the best, and visit here often.
Lynn
PS - Happy Birthday Jenna!

_________________
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.


Thu Jul 07, 2011 9:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Caring for my Dad in Virginia
Happy Birthday, Jenna!

_________________
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.


Thu Jul 07, 2011 11:05 pm
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Caring for my Dad in Virginia
I just want to say I am overwhelmed by the support I've been offered and the relief I'm feeling knowing that I have a place to go where someone understands. Thank you all so much.

Belated Happy Birthday to Jenna!!

I'm just wondering what types of symptoms have caused LOs to enter the hospital.

Took my dad to dr today, pharmacy, post office to close his po box, DMV to turn in his tags, get handicap tag , change address on license. That was way more than he is used to doing. Normally he just wants to watch tv at home. He got very agitated at times and may be it was to much. But in a way I think it was good stimulation and maybe he will actually sleep well tonight. I am thoroughly mentally and physically exhausted from the entire experience. But these were necessary things that needed to be done. Maybe not all at once though. Still alot to do.


Fri Jul 08, 2011 11:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Caring for my Dad in Virginia
Here's why my dad landed in the hospital for several days -
He had had many falls over about a year or so, and they were getting more frequent. He had not been diagnosed really with anything other than "possible Parkinsons" a few weeks prior to this episode.
July 2 years ago I received a call from one of my dad's neighbors at 7 AM on a Sat. My dad had fallen out of bed, was on the floor unable to get up, move, do anything other than reach for his cell phone (which I'd been insisting he have with him when he went to bed). Instead of calling 911 he called the neighbors at 5 AM!!!
He could not get up, could not walk and the man had to carry him to the bathroom, clean him up and carry him back to bed. He was also confused and pretty incoherent.
Since my dad was living alone and these were mostly new and very debilitating issues - inability to know that he shouldn't be calling a neighbor at 5 AM, frequent falls, confusion, unable to use his legs or arms, etc. I insisted he be taken to the hospital to be evaluated. While there he had hallucinations, continued to be almost totally paralyzed in all 4 limbs, his speech was incoherent much of the time and he became 100% incontinent.
I was in hopes that getting him to the hospital would result in a diagnosis and prognosis. Unfortunately I was mistaken...... He went to rehab for 3 weeks then to the ALF which he'd decided on his own to move into just weeks prior to the hospital stay. My poor dad never had a chance to say goodbye to his house of 58 years or move his things himself. It was not the way I'd wanted him to move to the ALF, but this last traumatic event at home was too much and he could never have lived in his house after that. Since he regained almost no physical abilities, he could perform almost no ADLs other than feeding himself by the time he left the rehab center.
But he could still squeeze people's hands really hard most of the time!!!

_________________
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.


Sat Jul 09, 2011 10:02 pm
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Caring for my Dad in Virginia
Lynn, I'm so sorry for everything you've been through. I've only just joined this forum, but I hope that you've gotten alot of support here. This is such a traumatic disease for the patient and the family. I'm only just beginning this journey with my Dad. God bless you!


Wed Jul 13, 2011 4:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Caring for my Dad in Virginia
My dad did have a pretty awful life his last year and a half. We did what we could to get him as comfortable as possible under the circumstances, but there was no way to "fix" what he was going through which was painful and frustrating. We are all glad he is no longer suffering and miss the dad/grandfather he was before he became so ill. 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.


Thu Jul 14, 2011 4:24 pm
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