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 Hoping to learn a lot here 
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Joined: Thu Oct 30, 2014 12:43 pm
Posts: 28
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Post Hoping to learn a lot here
Hello. My wife was just diagnosed with LBD yesterday. I am hoping to learn what to expect over the next few years and how best to plan and prepare. Just 2 years ago my wife was managing a busy medical clinic. She was known for her ability to track multiple issues, remember details and interact with patients in a warm and caring manner. But her coworkers began noticing cognitive changes and her stress level began to soar as she realized something was happening to her.

At the beginning of this year she was encouraged to take a medical leave. After a false start with a neuropsych group and psychologist who insisted it was just stress and anxiety, we final saw a neurologist in September and she was diagnosed with PD and likely hood of LBD. Neuropsych testing 2 weeks ago from a different group and the results yesterday confirmed LBD.

My wife will be 66 yrs old in a few days. I am 8 years younger. She is very functional and after doing a 4 week Big and Loud program and starting Sinnemet for PD she's walking and moving great. She does have cognitive decline but is still enjoying a normal life though she has retired (she's earned that) and her driving is pretty much coming to an end.

We do however realize we are at the beginning of a very difficult road that will not end well. I have some idea what will occur but no idea what the timing will be. How much longer will she enjoy a basically normal life? How long left to socialize? What changes occur first and when? How long before I can no longer leave her alone? Will she become totally incapable of caring for herself? Will she need a nursing home? Can I still purchase LTC insurance? What is her life expectancy?

I hope I can find these answers soon. I look forward to meeting many of you here.


Thu Oct 30, 2014 10:42 pm
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Joined: Wed Jun 25, 2014 11:29 am
Posts: 67
Location: Florida
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Welcome to the group. As you read many of the posts, you will see that timelines are difficult to determine due to the fluctuations that occur with LBD. They say anywhere from 3-7 years from diagnosis but as I read many of the posts, it can be longer. As far as LTC insurance, it's probably too late for her but I encourage you to investigate for yourself. The average policy covers 3 years of inhome care, nursing home and/or a combination and the typical daily amount is around $300 that insurance will cover. I have found that the posts are very helpful and have kept me grounded and connected. Best of luck to you on this difficult journey.

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Adele, wife and caregiver to Bill, diagnosed with LBD in January, 2014.


Fri Oct 31, 2014 11:52 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
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Your wife will be on her own time schedule. Things you can do to help a sudden downward spiral: Help her live a healthy life style; try to keep all infections out of her system. especially urinary tract infections. Avoid unnecessary surgery. NO Haldol. I wish I could say it will be on a certain time scale. It will be her own. You will know when it is time to leave her alone or not. Best of luck. Just love her, even when she shows "Show Time" and you wonder why she can behave in a normal fashion with friends and strangers only to revert to the Lewy Body behavior at home. She will need to be active but also she will need more sleep. You will learn what works for her because hers will not be the same as mine or others. Be her advocate at all times. Dorthea

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"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Fri Oct 31, 2014 12:04 pm
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Joined: Wed Nov 13, 2013 3:30 pm
Posts: 116
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Yup, no time line cuz, unlike Alzheimer's or other diseases, LBD does not follow a linear pattern. It is what it is now and could be different the next hour, day, week, etc. Won't lie...it's very frustrating.

Re: No-No Meds -- Never give her benadryl (diphenhydramine).....you'll think she did LSD.


Fri Oct 31, 2014 2:16 pm
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Joined: Sat May 25, 2013 3:53 pm
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Welcome to the forum fathoms and so sorry you have to be here. Our experience with my mother was up and down for probably seven years and we were out shopping two weeks before she passed - so you may have time for lots of good times yet with definitely some ups and downs. As LBD is so frustrating for the caregiver you'll want to make sure you have time for yourself and help when you feel things are getting to be too much to handle alone. Come here for feedback any time!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Nov 04, 2014 1:55 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
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Welcome - you've been given some good tips and advice by others already. Read as much as you can so you are armed with info. before you need it. That should help you understand where you are headed in this journey and forewarned is often forearmed. Stop back often for info. and support. 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.


Sun Nov 09, 2014 2:13 pm
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 135
Location: Hawaii
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Post Re: Hoping to learn a lot here
Again, welcome to the forum, Fathomas! Glad you found us. Please explore the rest of the website, as there are many articles which address your many questions. Eventually, your wife will be completely dependent on others for care. But as others have pointed out, that could be far down the LBD road. I'd advise gathering information now on additional caregivers. Do you have children, other relatives or friends nearby who may be able to help out? If your wife falls and if you're still working , you may need someone right away. This is a decision you don't want to make in haste! At the very least, look up a few home health care agencies to have at your disposal. Enjoy your time together; it's precious! Anne AAA

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Sun Nov 09, 2014 11:36 pm
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Joined: Thu Oct 30, 2014 12:43 pm
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Thank you all for your replies. It's so unreal because my wife is doing so well right now. She is taking Sinemet and Aricept. And while she does have some diminished executive function she is so healthy in every other way.


Tue Nov 11, 2014 12:07 am
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Joined: Wed Nov 13, 2013 3:30 pm
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Post Re: Hoping to learn a lot here
And enjoy this time!.... truly, it's easy to say and hard to do, but I've walked it.

18 months in and my husband has declined cognitively again. He's back to pacing the house, checking the garbage can 10 times in 30 minutes. Looking out the windows & doors. The sundowning is something awful again too. And the weight loss.... that's the hardest because now, it makes him look sick. In a crazy way, that's good too. For so long, people didn't think he was "that sick;" he looked good. He laughed. He cracks jokes. And yet little by little, he's declined.

You'll get far more encouragement, support & uplifting prayer right here. While many have have lost their spouses already, there are plenty of us that are living it with you & your wife right now. WE GET IT.


Tue Nov 11, 2014 10:47 am
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Joined: Wed Oct 01, 2014 1:49 pm
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Post Re: Hoping to learn a lot here
From all that I've read and heard,It seems like Lewy takes a man down faster than women. If anyone has lost their female LO within 5 yrs. after dx please let me know. My mom has a lot of weight, way to much on her,she looks healthy but her brother put on a lot of weight also. I was told he fell alot, maybe lived at the most 8 yrs. He died with dementia, I'm guessing he also had some lewybody maybe a mix. Welcome to all of the new comers. As for local support groups,try to find more. They don't always have to be lewy groups. I like the ones where educational speakers teach.


Tue Nov 11, 2014 8:26 pm
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Joined: Thu Oct 30, 2014 12:43 pm
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Post Re: Hoping to learn a lot here
Hello. I'm the original poster of this thread. I feel I need to close this loop. Sadly. My lovely wife Cindy was diagnosed with LBD October of 2014 as I state in the original post. June 15, 2016 she passed away from "Complications associated with LBD". Just 20 months after her diagnosis. She was only 67 yrs old.

She was working full time up to January of 2014. Here coworkers did notice changes that were concerning beginning a little over a year prior to here retirement. This was a whirlwind ride with LBD. Not in a million years did I ever think her disease journey would end this quickly.

Make sure every moment counts while you still have them.


Sat Jun 25, 2016 9:34 pm
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Joined: Sun Aug 03, 2014 1:35 pm
Posts: 5
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Post Re: Hoping to learn a lot here
Dang.
I was hoping to use replying to this post as a way to get to somebody who can tell me how to post an original post. Ive spent over an hour struggling to navigate this website. I fear it will be so difficult I won't be able to participate.
My husband is 69 yrs old and started showing symptoms at least 2 years ago. His sister, the doctor, realized there was something wrong but it took a year for her to acknowledge that it is dementia. She finally took him to a cognitive specialist. No results yet.
He is in a very good mood, thanks to modern chemistry. He still drives well trod roads, but I take the wheel when we are together. He sleeps and looks at tv most of the day after he spends 5 hrs upstairs day trading (!!!!) He managed to save money while working as a landscaper for 20 Years. Not enough to pay for daycare or home care, too much to get govt assistance.
I am working fulltime. I should say 1. As a paid landscape gardener ($11,000 income), self employed and 2. As head of a nonProft with $29,000, and as head of a second, newish non profit with $0. I work ALL the time. I feel compelled, hubby is lonely. But it is hard to give up my committments to sit at home and watch reruns over and over. I figure I 'll have to shut down the two nonprofits maybe next year, and up my landscaping work ( hard to do when you're 66yrs old and overweight. Im hugely stressed out. When he gets worse, it is the only thing I can think of to do that won't cause a nervous breakdown, and will allow me to stay at home in the evenings with hubby. (I currently am on 2 boards, umpteen committees, and give lectures at night sometimes. )
But it will be a huge hit to the pocket book and my personal identity. I do get depressed thinking that as this progresses all will be lost... My husband, our savings, all the work i've done for the last 26 yrs, leading a non-profit (which will probably just disband I'm pretty sure), and my place in the world. I am one of only two living relatives. There are no children.The other relative is older, very poor, and can barely walk or see. She will need tending to also and soon. She's extremely hard to deal with, disfuntional and demanding. I do love her and enjoy our conversations. There are some sisters on hubby's side. Still it looks bleak.
Can someone tell me how to post an original post, not a reply like this?

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Prunerwoman


Wed Aug 24, 2016 11:14 am
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