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 Introduction: My father has LBD 
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Joined: Mon Oct 15, 2012 8:46 pm
Posts: 21
Post Introduction: My father has LBD
Hi,

I found this wonderful website after spending a lot of time searching the internet about LBD.

My story is as follows.

My father was diagnosed with Parkinson's about 6 years ago at the age of 63. My mother had died from cancer a year previous to this so we think his Parkinson's may have come about from this awful shock to his system. For the first three years after diagnosis he became depressed and had no interest in going anywhere or partaking in any activities. My three siblings and I were quite young at the time of his diagnosis. My brother was 15, I was 22 and my sisters were 23 and 24. At that stage we had prepared ourselves for what his life would be like with Parkinson's and embarked on a journey of consultants, doctors, alternative medicine etc. However about 2/3 years ago his tremors started to lesson more and more. We were delighted and believed that the medication was working.

Alas what replaced the tremors was much worse. The first signs of LBD were not very evident as it wasn't something we were on the look out for. A crucial element which blocked our path to suspecting dementia was his memory; it was perfect and he showed no signs of being unable to retrieve stored information. What happened to him was that his reasoning and judgement skills seemed to become impaired. When we tried to explain simple things to him, like for example the different between the general waste bin and the recycling bin, he was unable to understand. At the time we dismissed these as insignificant incidents. Over the next 18 months it seemed to slowly get worse. Because of this long period of decline we never sat down to try to understand what was happening to him. Dementia like behaviour became "normalised" and we just adapted to it as the situations changed. We were also too preoccupied by his hallucinations and trying to find a way to stop them. Every conversation with him revolved about the strangers in the house. He always demanded we remove them. He once even called the Gardai and asked them to arrest all the "strangers" in the sittingroom!

But then suddenly in the last few months his dementia moved into 5th gear. He now is no longer able to communicate effectively. He starts a sentence but then quickly becomes confused. His questions are usually bizarre so we just play along and pretend we know what he's talking about to ensure he doesn't become agitated. He stills recognises us which is something we truly cherish.

And ironically the LBD seems to have lifted him out of his depression. He seems very happy now, always laughing and smiling. Another positive side is that he still physically able to look after himself and go to the toilet unaided. He can walk, albiet in a shuffling manner, but all the same it's so important he can move about independently. I am currently in the middle of converting a bottom sitting room into a bedroom so that we are prepared for the day he stops being able to climb the stairs. He has a slight problem getting up so we have installed levers beside his bed and on the toilets We also make sure one of the family stays with him overnight as we're afraid he'll go wandering. I recently caught him doing it late one night so we had to ensure this didn't happen again, especially as we live out in the middle of nowhere.

I fear terribly for his future though. From reading these websites its too hard to predict what exact path he will go down. I really worry about what will happen to him when he loses the ability to walk and becomes bedridden. We as a family though are working close with his medical team and we ensure he wants for nothing. One of the family is there every night and we're all home every weekend from Friday afternoon to Monday morning. During the day mid week he has carers who come and go and keep an eye on him.

I know this was long winded but writing it down has been very therapeutic. I hope to get advise and share stories with many of ye over the this long and winding journey of ours.

Thanks for reading
Conor


Tue Oct 16, 2012 3:20 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Introduction: My father has LBD
Welcome to the forum, Conor! Sorry you have to be here but it's where you need to be for information and support. My husband also started the Lewy path with problems in executive function rather than memory defecit.

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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.


Tue Oct 16, 2012 3:30 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Introduction: My father has LBD
Welcome to the forums Conor. This is definitely the right place to come for answers and support.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Tue Oct 16, 2012 4:59 pm
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Joined: Mon Oct 15, 2012 8:46 pm
Posts: 21
Post Re: Introduction: My father has LBD
thanks guys, I hope I can find some help with some issues we are having.


Tue Oct 16, 2012 5:36 pm
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Joined: Mon Oct 15, 2012 8:46 pm
Posts: 21
Post Re: Introduction: My father has LBD
In my first post I mentioned that up to recently my Dad's executive functioning (I only learned this phrase today) was declining slowly but then suddenly in the last few months he has declined to a state where he can no longer communicate effectively. After reading some posts I see that "sudden" declines are common (some suggest often as a reaction to new meds or an illness). Dad can still walk, go to the toilet, wash himself etc but I'm worried that he could have another sudden decline that could leave him bedridden, incontinent and non responsive. How likely is this to happen or will he have a good quality of life for long more?


Tue Oct 16, 2012 5:59 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Introduction: My father has LBD
Most of the time my mom is able to feed herself, dress herself (sometimes with help) and walk back and forth to the bathroom by herself with a walker. She has had a number of very rapid declines, usually as the result of illness or meds changes, but once the cause is cleared up she returns to baseline. Her one major symptom that she displays now is that she sleeps constantly, and gets worn out very easily. I don't know how much of this is Lewy's and how much is from her increasing CHF. Every Lewy's patient's journey is different though, as I'm sure you'll learn from reading the posts on this forum. I look back at my posts from Sep 11 and Dec 11, and can't believe how much better she's doing now than she was then, even while knowing that she is in a slow decline, and try to take each day that she's still with us as the gift that it is.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Wed Oct 17, 2012 10:37 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Introduction: My father has LBD
Dear Conor,

Welcome to the LBDA forums and I too am glad you found us and here you will learn a great deal. Many people with LBD often are DX'ed with Parkinsons first so that is not anything new, I didn't read where your Dad was actually DX'ed with LBD? You are such a young family of siblings dealing with this and I am so very sorry for that. Please make use of the forums and each question can be posted in the are that most fits the question of comment, that way more eyes see it and better the chances of helpful information for you!

Good Luck !

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Irene Selak


Thu Oct 18, 2012 11:06 am
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Joined: Mon Oct 15, 2012 8:46 pm
Posts: 21
Post Re: Introduction: My father has LBD
Thanks Ellen, we can only take it one day at a time I suppose and hope that he stays as close to the baseline as possible.

Irene, he has not yet been dx'ed with LBD. His consultant for Parkinson's has been seeing him for the last 6 years. But it was only a yearly appointment as the Parkinson's wasn't changing much from year to year.

However at his last appointment in April 2012 I was keen that his consultant would chat to Dad and judge for himself that his executive functioning had declined rapidly since his last appointment. Unfortunately my sister came with us and she answered most of the questions for Dad. I tired to intercept and I told the consultant that he probably wished to speak to Dad on his own. He didn't seem to concerned with that and carried on talking to my sister. I suggested then that perhaps he could do a short memory test with Dad. He asked Dad did he want to do one to which Dad said no. I then asked the consultant if he believed it was important that we had him assessed at some stage and perhaps we should schedule one for another time. He said he didn't believe it was neceassary. The proverbial brick wall was right in front of me.

After leaving the appointment I was very annoyed. My sister who was and still is in denial about Dad's condition had cleverly manipulated the consultant. His report of the appointment painted Dad to be improving and doing very well. I was annoyed that I hadn't put my foot down and demanded that myself and my sister leave the room so as to ensure Dad got a fair assessment. And because of that glowing report every medical person from his local doctor to public health nurses kept referring back to the report when I raised concerns about Dad's health. Finally the public health nurse came out to visit him and was in utter shock that a consultant could write such a glowing report on Dad and this was only a few weeks after the apointment. Since then I have challanged every medical person to assess Dad objectively just like the nurse did and tell me what they thought. They all agreed the man described in the report was not the same man they were looking at. Sure how would it be correct when the consultant never bothered to talk to him??

Thankfully I managed to get another appointment for this Oct 31st without my sister knowing about it. Dad was assessed a few weeks for capacity for the Enduring Power of Attorney. The doctor who assessed him failed Dad (another headache for us as we have no control over Dad's finances and yet he can't manage them himself) and said his cognitive decline was alarming. I had requested she send those reports to our consultant in time for the appointment on Oct 31st. Hopefully then I will be told exactly what they think he has or doesn't have. All I want is a fair assessment done and then once I have that we can work from there.

However all of his systoms seem to correspond exactly to what people go through with LBD. He has dementia 100% so it's only a matter of distinguising which one it is. I won't make any more mistakes the next time we meet with his consultant.

That was a bit of a rant but I suppose it;s good to get it out.

We are a young family but at the end of the day we have to get on with it and do what's best for our father. He raised us very well and spent so much of his money and time on our education and other activities so that we would have the best chance starting out in life. It's the child-parent moral contract. They look after you when you are born into this world and so we must look after them when they need us. I wouldn't have it any other way.


Fri Oct 19, 2012 9:31 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Introduction: My father has LBD
Who, if anyone, has medical power of attorney for your father? I suspect this issue will loom large in the days and years to come.

_________________
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 Oct 19, 2012 10:49 am
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Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Introduction: My father has LBD
conorw wrote:



We are a young family but at the end of the day we have to get on with it and do what's best for our father. He raised us very well and spent so much of his money and time on our education and other activities so that we would have the best chance starting out in life. It's the child-parent moral contract. They look after you when you are born into this world and so we must look after them when they need us. I wouldn't have it any other way.


I so agree with this statement. I have people say to me all the time that they couldn't do what I am doing. As far as I'm concerned I couldn't not do it. Like yourself my parents raised us very well and always put us kids first now it's my turn to give it back.
I had the opposite problem than you with Dad's neurologist. She wouldn't let me talk at all but would just listen to Dad. Dad convinced her that he was fine for so long that she never even suspected LBD for years. She used to virtually tell me to be quiet when I tried to talk. Now we have a great relationship and she always listens to what I have to say but it took a long while to get to this stage.
I'm glad that you are managing to get things sorted out to your satisfaction now. It is so frustrating when you know that things aren't going the way you know they should be.


Fri Oct 19, 2012 11:25 am
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Joined: Mon Oct 15, 2012 8:46 pm
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Post Re: Introduction: My father has LBD
Thanks Eycsman. I hear the same thing from others but I think it's a dark cloud that has a silver lining. Most of my friends don't spend a lot of time with their parents and when they die suddenly they have regrets that they didn't spend more time with their parents. For my family though we spend so much of our time with Dad and that is something we will always cherish. I feel closer to Dad in the last year than the whole 27 years before that. I do feel sorry for my brother though, he lost his mother at the age of 14 and now at 21 he has to witness the slow decline of his father.


Fri Oct 19, 2012 5:17 pm
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Joined: Mon Oct 15, 2012 8:46 pm
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Post Re: Introduction: My father has LBD
Hi Pat, no one has medical power of attorney. In Ireland we don't having living wills. I don't know who gets to decide on those issues. I'm not lookin forward to when that day comes.


Fri Oct 19, 2012 6:29 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Introduction: My father has LBD
Hi Conor,
Pat's advice has been critical for us - we were fortunate that my parents decided to give us legal authorization before my mother's dementia became so apparent. We are also fortunate that my sister and I are able to work very effectively together, even though she is on the east coast and my parents are 10 min from me in California. It sounds as if perhaps doctors and financial institutions in Ireland may be more relaxed, then, about consulting with family in health crises. Here, without legal authorization, you can do virtually nothing.

Your comments on the blessings of caregiving ring very true to me. Even with the frustrations of LBD and all that it entails, this time has enriched my life, and my relationship with my family, and given me a chance to reciprocate all the care they have given me over the years. Even my grandchildren, who are just 8 and 3, take part and are growing in gentleness and patience from this, and in compassion.
Laurel
PS, what part of Ireland are you in? We just got back from visiting my husband's family in Co Galway.

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat Oct 20, 2012 9:51 pm
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Joined: Mon Oct 15, 2012 8:46 pm
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Post Re: Introduction: My father has LBD
Hi Laurel, we live right beside Galway. It's a beautiful part of the country.

As of now we as a family have no legal control over Dad's finances. We get by with an innovative system that works for us. The banks can not discuss his accounts with us which is legally very good for protecting people. I don't know what happens in the medical area. I presume patients must be kept alive as long as possible. When it comes to deciding that he may need to go into care or a nursing home I don't know who can decide that.


Sun Oct 21, 2012 6:16 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Introduction: My father has LBD
I am glad you found us too and wish you and all of us had no need to be here. That being said, this website has been such a port in the storm of Lewy Body for me. My husband is 79 and is currently doing much better on medications including Seroquel, Exelon Patch and Sinemet. If I hadn't seen my husband during the worse times and even in the mid times, I wouldn't have beleived he could be doing so much better now. I don't know how long this will last but we are both so grateful we have this time for as long as it lasts. Our neurologist started all the drugs with very minimal doses and did not add new ones too quickly. When I hear of how many are diagnosed incorrectly for years I am so grateful his diagnosis was not a long and arduous journey. I hope you and your family can find a neurologist like ours and your father improve on the medications that are so important for Lewy Body patients. It so incredibly sad that your father, you and your siblings are going through this at such a young age. I pray for all of us when I go to bed and you and yours will be a part of that prayer.

Susieg


Sun Oct 21, 2012 6:25 pm
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