Re: Re: Cassie

[Guest guest]

Jan Said:  I thought Jim also was about 10 or 12 years younger than I when we

first met,

 

Oops! I meant, I thought Jim was 10 or 12 years younger than he was. Not 10 or

12 years younger than me. LOL

________________________________

To: " LBDcaregivers " <LBDcaregivers >

Sent: Monday, December 5, 2011 3:46 PM

Subject: Re: Re: ? For Judy/ and Others

Hi Cassie,

You and I are the same age. I will be 64 in January. My husband and I Just made

it to our 20 year anniversary a month before he died.

He was 84.

You said: We have been married almost 25 years.  When I first met him, I

thought he was at least 10 years younger than he actually was at that time. 

Jan said: OMG! I thought Jim also was about 10 or 12 years younger than I when

we first met, he could run circles around me since he was so athletically

fit and appeared younger and had a boyish way about him. Unfortunately, I only

had 5 good years with him before all these health issues appeared. First the

Parkinsonism and then the dementia. He did have Sciatic Nerve problems and went

in for Back Surgery. The Back was cured, but in my opinion the anesthesia

progressed the LBD to happen, because one year after Back Surgery the problems

began. It could be coincidental, but I have read where anesthesia in some can

cause issues.

Thankfully, I am in good shape too and could deal with the disease. I did have

to put Jim in a nursing home in 2006, he bacame combative and attempted to hurt

me a few times and possibly kill me while in his delusions. I could no longer

handle him. I also had to work and I had no family support, so I had a caregiver

at the house while I was at work. In a five year period, my husband either

chased away caregivers that feared him hurting them, or I fired them for one

reason or another. I went through 5 caregivers in a 5 year period. It wasn't

working that I had to take time out from work everytime to find a new caregiver.

I could not afford a 24/7 caregiver. I finally took " Family Leave of Absence " to

find the last caregiver, who was also a pain in the neck, but bonded with my

husband, so I kept him for 5 years. I had to hire a man, he was the only one

that could handle my husband. I also tried 3 agencies and hired 2 by word of

mouth, before either

Jim chased them away or I fired them. Jim became a kinder, gentler man in the

nursing home, maybe because he saw there were more there to confront him if he

tried anything. LOL  It made it easier for me to visit him and we had better

times together without him attempting to harm me in his delusions that I was a

spy in a conspiracy out to get him. Poor guy, in his healthy days, he wouldn't

have harmed a flea. I must say, I enjoyed getting a full nights sleep before

going to work once he was in the nursing home. I never wanted to put him in  a

" Home, " but when he attempted to kill me from being delusional that was the last

straw. I couldn't risk me being knocked out cold and him alone in who knows what

kind of trouble.

Keep up the good work Cassie, it's a bumpy journey.

Jan Colello

Jan: 

Your comment about your husband being older struck a chord with me.  I am 63

and my husband is 87.  We have been married almost 25 years.  When I first met

him, I thought he was at least 10 years younger than he actually was at that

time.  He never looked his age (or acted it) until he was in his mid-80's.  He

was also very fit and healthy throughout his life, had no chronic diseases and

took no medications, so even though we saw very subtle signs of dementia

beginning in 2000, it has only been in the last 3 years that we have known what

we are dealing with.  He has become very frail and spends most of his time in

bed.

I agree about the difficulty of spouses who are elderly taking care of their

elderly mates 24/7.  I am physically fit, exercise regularly and eat very

healthy.  I can cope and, so far, have been able to deal with his health

challenges here at home and take care of myself at the same time. I don't know

how an elderly spouse could do that successfully on their own.  It is certainly

demanding both emotionally and physically.

Cassie

To: LBDcaregivers

From: janetcolello@...

Date: Sun, 4 Dec 2011 19:35:30 -0800

Subject: Re: Re: ? For Judy/ and Others

 

   

     

     

      Hello ,

said: I get the impression that the age of the LBD patient comes into play

as far as outlook and life expectancy.  It would be helpful if you could put

the ages of your loved ones in the posts that talk about their progression.

My husband, Jim, was aged 69 when he was diagnosed with Parkinsonism by his

neurologist, and age 74 when dementia appeared and

age 84 when he died, January 22, 2011.

I attribute Jim's 15 years of hanging on to his physical fitness in his healthy

years. He was very athletic and fit. He had no other complications other than

PDD/LBD and was only on medications for Parkinsons: Sinemet and Memory: Exelon

Patch,  plus some vitamins. No one in Jim's family knows of any relatives with

LBD, but any of his grandparents could have had it, but it was only known as

senility in those days and people didn't live as long as they do now to get a

good idea of what it was all about.

He was a teacher and read many books and enjoyed crossword puzzles, jigsaw

puzzles with hundreds of pieces, and mind games. He was also an avid golfer, on

a men's softball team, and jogged 6 miles daily.

He was older than I. I am in awe of spouses that are of the same age as their

elderly spouse and care for them round the clock. It is a very hard task to care

for a loved one 24/7 with LBD.

I will need prayers and support these next few months. Jim and I were married 20

years last December just before he died. Our anniversary was between Christmas

and the New Year. Jim died one day after my birthday in January 2011. This will

be the first year anniversary since his death. I am doing well, and I know I

will make it through this also, but it may be a bumpy road to get through it and

from experience I know that prayers really help to get through the hard times.

Thanks.

Jan Colello, East Bay, San Francisco Bay Area, CA

Husband, Jim, dx w/PDD/LBD Oct. 2003, but PDD/LBD appeared in 2000

Deceased, January 22, 2011

________________________________

Hello,

I get the impression that the age of the LBD patient comes into play as far as

outlook and life expectancy.  It would be helpful if you could put the ages of

your loved ones in the posts that talk about their progression.  My mom is 86

and at approximately stage III.  Except for lightheadedness, fainting, and

acting out in her sleep (which have been happening for a long time) her symptoms

have all come on in the last 2--3 years with most of them manifesting this last

summer.  That seems like quick progression to me based on most of your

experiences.  It seems natural (from it getting so much activity at this group)

to try to figure out what's ahead for us.

(daughter and caregiver of Lois-86)

> >

> > >

> > >

> > > Hi Tania,

> > > My husband also had PDD, as most have explained, it is in the same

spectrum as LBD. Instead of Lewy Body Dementia, LBD is also an acronym for Lewy

Body Disease, because both Lewy Body Dementia and PDD have Lewy Bodies. The

Protein Cell Bodies on the brain exist in both diseases and are named after a

Dr. Lewy. I attended the first conference on PDD vs. DLB in Washington DC, and

it was determined by the research doctors that both were within the spectrum of

LBD. PDD typically starts out with a Parkinsonism for several years and develops

dementia later. DLB or Dementia with Lewy Bodies (LBD) starts out with dementia

and sometimes is found in earlier ages with early onset dementia, they may or

may not get parkinsonism, but if they do it follows within a year or a short

time after the dementia.

> > > My husband died nearly a year ago in January. He started out with a

Parkinsonism, not a true Parkinson's, but had mostly the Parkinson's gait and

falling a lot. He had it 5 to 6 years before the dementia appeared full blown in

2000. He did have mild hallucinations, mostly of bugs and people in the room,

and also delusions; plus he had Capgras pronounched: (Cap Grah) like the ending

of  Mardigras is pronounced. Not everyone follows the same order of symptoms,

but they all are very similar.

> > > Jan Colello, East Bay, San Francisco Bay Area

> > > Husband, Jim Colello, dx w/ PDD/LBD Oct. 2003

> > > Deceased, January, 2011

> > > 

> > >

> > > ________________________________

> > >

> > > To: LBDcaregivers

> > > Sent: Thursday, December 1, 2011 3:37 AM

> > > Subject: Different day, different diagnosis

> > >

> > > We took Dad (dx Parkinson's in 2010, then LBD early 2011) to Sydney

> > > today to see a new neurologist today. This is her:

> > > http://www.mq.edu.au/about_us/faculties_and_departments/faculty_of_human\

> > > _sciences/asam/our_staff/dr_carolyn_f_orr/. For the record, she seems to

> > > be an incredible mind and was so thoughtful regarding Dad's condition

> > > and feelings. I had forewarned her that his last neuro made some

> > > negative comments that had impacted greatly on Dad's depression.

> > >

> > > We hadn't been happy that since refusing to give Dad any more Seroquel

> > > after two days of hell, a couple of months ago, his previous neuro now

> > > had him on no meds for LBD at all aside from a tiny dose of Sinemet. We

> > > were hoping Dr Orr (the new neuro) may be able to offer some clarity and

> > > possibly a better quality of life as Dad's mood had taken a serious turn

> > > for the worse.

> > >

> > > To cut a long story (and 1.5 hour consultation) short, Dr Orr said that

> > > Dad does not have LBD. She has instead diagnosed him with PDD

> > > (Parkinson's Disease Dementia). She said the tell-tale sign was the fact

> > > that Dad had an onset of Parkinson's-related symptoms years before any

> > > cognitive decline - something she said just doesn't happen with LBD as

> > > it's usually the other way around (ie. cognitive decline, with later

> > > Parkinsonian symptoms). I was always suspicious of Dad's diagnosis of

> > > LBD as everyone always mentioned hallucinations which Dad didn't really

> > > have.

> > >

> > > I recall someone on here recently saying that a diagnosis of PDD was

> > > almost always later confirmed as LBD. But from what I have now

> > > researched, as well as what we were told today, it seems highly unlikely

> > > that Dad does have LBD.

> > >

> > > I'm wondering if anyone has had any similar experiences? This is the

> > > third diagnosis in less than 2 years. We absolutely trust the woman we

> > > saw today and everything she's told us makes sense but the comments of

> > > someone on here recently keep replaying in my mind.

> > >

> > > Thanks, Tania.

> > >

> > > ------------------------------------

> > >

> > > Welcome to LBDcaregivers. 

> > >

> > >