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 Hi all - new here 
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Joined: Tue Nov 19, 2013 6:40 pm
Posts: 9
Location: Kentucky
Post Hi all - new here
Hi all - I'm currently caring for my Mom with LBD??? Parkinson's?? Something else entirely?? and my Dad with stage 3 to 4 Alzheimer's. (I'm considering sneaking some of their donepezil since my genetic material clearly isn't very promising.)

Mom became increasingly unsteady and showed many of the typical signs of Parkinson's over the past couple of years, although I've never been convinced completely. Now things are getting more complicated.

I have 2 specific questions about my Mom's condition, and whether they are consistent with Lewy Body. I'm having ongoing struggles with her doctors that are frustrating.

1) Her response to Levadopa is unclear. There's no clear improvement when she takes it, and sometimes (unrelated?) decline. I'm inclined to say she doesn't respond at all. We're getting ready to put her on Neupro, in hopes a more consistent delivery will tell us more. Do any of your loved ones fail to respond to Levadopa?

2) I've seen descriptions of rapidly fluctuating mental status, but she has incredibly rapid fluctuations in physical status as well. She will literally sit down to dinner (on her own steam with her walker) and be unable to get up 30 minutes later and we will be carrying her to the toilet, etc. These declines generally last a day or three, at which point she will start improving. The worst episodes are followed by hallucinations and confusion, especially spatial confusion (believing her bedroom is "downstairs" when the house is all one level, or the floor is slanting, etc) Is a very quick physical decline (rigidity, unable to tell what her feet are doing or to maintain her balance, etc) typical? In an hour or so?

These changes seem to be unrelated to any medication change - her meds have been consistent now for a few months.

Luckily Dad has been stable for a while, and is able to help with her care. Mom and Dad still live alone together (although that may have to change very soon) , but when these episodes happen I have to drop everything and move in with them for a week or so, until she's back on her feet, more or less.

Are these things common or typical? Or do we need to keep looking for an answer?

Thanks for any help -
G

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Caring for Mom, 84, with probable LBD, and Dad, with Alzheimer's.


Sun Dec 15, 2013 10:40 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: Hi all - new here
Welcome to the forums! My mom has very rapid declines, also. They are almost always caused by
Her having a UTI and as soon as we get her antibiotics started she improves. One time she was able to feed herself lunch and by dinner time was unable to figure out how to use a spoon and didn't recognize family members. A quick trip to the emergency room showed that she was in renal failure. She was admitted to the hospital and by the next morning showed much improved cognition. Now we try to stay on top of UTI's, as soon as she starts having a change in her mental status I try to get a urine specimen .

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Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Sun Dec 15, 2013 11:00 am
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Joined: Tue Nov 19, 2013 6:40 pm
Posts: 9
Location: Kentucky
Post Re: Hi all - new here
Hi Ellen,

Thanks for your response! Does your Mom have rapid physical declines without any increased confusion?

Your comment about the UTI is a good possibility. She has had a couple of very mild UTIs that seem to correspond with her worst episodes (the ones that progress into confusion). I will take your advice and watch that. But sometimes it is just physical.

We're getting ready to get her a wheelchair for "those times".

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Caring for Mom, 84, with probable LBD, and Dad, with Alzheimer's.


Sun Dec 15, 2013 11:24 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: Hi all - new here
My mom had a leg injury five years ago that didn't heal correctly so she uses a walker at home and
a wheelchair when we go to the doctor or travel anywhere , so I don't notice the physical changes
as much as I see the increased confusion, hallucinations, etc. Mom has been doing very well for about a year
now. The only time we have had real problems with her mental status is when she has a UTI or a cold, and of course
when she takes any new medication, which we monitor very closely and slowly. Of course with her stability over the
past year we haven't had any meds changes. She does sleep a lot and keeps rather odd hours at times but we have
installed locks on our exterior doors that she can't unlock so if she wants to read at 2 am, not a problem. If she
needs me for any reason she has a bell next to her chair in the living room, on her nightstand, and in her bathroom. This gives her a little bit of independence which makes her happy.

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Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Sun Dec 15, 2013 11:53 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Hi all - new here
Hi Gretchen - welcome, and sorry you need to be here. Your descriptions/questions sound like typical types of LBD symptoms to me, from my experience and a lot of reading and knowing others with LBD. My dad had a huge overnight decline mentally, physically, emotionally, and did not come back anywhere near to his previous baseline. His deterioration would be like falling off a cliff, then being on a plateau, then falling off another cliff. He rarely regained much, and if he did, it was only temporary. Not everyone has such a profound set of declines, but it does seem to happen to some, and for others it's more like a roller coaster.

I don't know have any personal experience with that particular med, but I'm sure there are others who will be able to comment with their experience. Good luck, and come back as often as you want with questions or even just for 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 Dec 15, 2013 9:52 pm
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Joined: Sun Dec 15, 2013 9:48 pm
Posts: 2
Post Re: Hi all - new here
Hi Gretchen

My husband has LBD and Parkinsons and was on levadopa for over year. At first it seemed to help his movement disorder a bit. Over time it actually contributed to psychotic episodes/paranoid delusions. He no longer takes it and is much better without.

Best regards


Mon Dec 16, 2013 5:28 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 305
Post Re: Hi all - new here
Hi Gretchen and welcome to the forum! Your description of the rapid onset rigidity in your mom sounds like what my mother-in-law is suffering with. She has been diagnosed with Parkinsons/Super Nuclear Palsy. She takes Levodopa, but as the drug wears off, within the course of a half an hour you can see her left side stiffen up - mouth, hand, arm and leg - and she won't be able to walk. When the drug takes affect you can see the muscles relax within about an hour.

My Mom had LBD and she had the hallucinations. She also had very noticeable mental changes - confusion, etc. whenever she had a UTI which were fairly frequent. Often a hospital stay and antibiotics were required but as soon as the infection was cured she'd regain her previous state.

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


Mon Dec 16, 2013 12:01 pm
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Joined: Tue Nov 19, 2013 6:40 pm
Posts: 9
Location: Kentucky
Post Re: Hi all - new here
It's been some time, but I wanted to thank everybody and report back. Mom's Neupro patches did seem to stabilize her, and she enjoyed several weeks of reliable movement and cognition. Until she put on 2 patches by mistake. Since then she has been "visited" by a parade of people who seem to spend a lot of time talking to each other and ignoring her, much to her frustration. There were also lots of imaginary crises, and utter fascination that "this house has the exact same furniture as ours. Isn't that amazing?"

We had a particularly entertaining (?) and sweet episode where she was pleading with my Dad (who has AD) to go look for himself, she was afraid he was lost. Poor sweet Dad did his best to figure out how to do it.

The hallucinations have eased (36 hours later) but her weakness has continued to decline rapidly. Hopefully that will turn around again.

We have finally been referred to a Lewy Body specialist (her neurologist is ready to shut me up) and I'm hoping to attend my first Lewy Body Support Group meeting this Tuesday - if we don't have another blizzard. I'm hoping for some good information - or at least a glimmer of recognition when I mention Lewy Body.

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Caring for Mom, 84, with probable LBD, and Dad, with Alzheimer's.


Sun Feb 02, 2014 6:42 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Hi all - new here
Hi Gretchen - they aren't still living alone without help coming in, are they? The ability for them to be able to manage their meds alone (you already mentioned 1 case of overdosing) would be dangerous. Do they cook their own foods? That would be another dangerous situation, and if they haven't already had a problem they've been very lucky.

If someone hasn't already done this, I'd have a health care professional come in and assess their situation to see what they need at this point - in home care a few hours a day, etc. Has anyone looked into facilities and gotten their names on a wait list so when they become more debilitated there will be a plan in place? It is a nightmare when our LO need full time care either at home or in a facility and no one has looked into these arrangements. Especially someone with LBD - they can have huge declines overnight and need full time care. Hospitals will often only keep them for a day or two and then you have to move them to "somewhere".

If they don't need to be moved right away, at least you have their names on a list and they can always decline but stay on the wait list. Finding in home care can be difficult too, so researching that, interviewing people, etc. is best done before the crisis happens.

Good luck managing all of this - it's difficult enough to have 1 person you are looking after, and you are CGing both of your parents. I'm sure they are very thankful they have you to help them at the time they need it the most. Take care, 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.


Sun Feb 02, 2014 11:11 am
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Joined: Tue Nov 19, 2013 6:40 pm
Posts: 9
Location: Kentucky
Post Re: Hi all - new here
Hi Lynn,

Yes, we've come to that place and I am staying with them 24/7, with hired respite a couple of afternoons a week. We're researching ways to add on to my house to create a safe space for them there. (Throwing them in the guest room is hardly workable long-term.). We hope to have an apartment for them in a month or two.

I confess, with the ups and downs, it has been easy to enjoy the "ups" and think the "downs" are just brief parts of it. But every "down" drives home the point that the downs will keep coming - and they are completely unpredictable. Luckily I had arranged for an "on call" care service and home health - at the time even they thought she didn't need it - home health almost refused to intake her - and we're talking just 3 weeks ago.

I realize I might have sounded flip about my parents' state - it IS dangerous, and although perhaps I should have had them under 24 hour care before now, it was a hard sell, Mom was enjoying such a nice honeymoon. At that point I was with them 6-12 hours a day, doing meals and meds...and even those who saw her didn't see a problem. She scored a 28 out of 30 on her mini mental exam just a few days ago. So the neurologist hasn't been convinced either. (One reason I'm glad we're going to a different one soon.)

But we have things in place to mobilize, now with the complete support and buy-in of my siblings. And the home health nurse who confirmed it's time. (She finally witnessed a "down"). Your comments add to my confidence that we need to set it all in motion and do it right, and I can't continue dropping everything and moving in for a week here and a week there. So I appreciate that. We've been lucky.

Such a strange disease, and the "ups" are such deceivers. They make all of us believe they can be on their own a little longer.

Meanwhile I try to see the humor in it when I can. Watching Mom's concern about Dad being lost, begging Dad to find himself.... It was so sweet, and yes, kind of hilarious. They're still the same people who love each other dearly, but their poor brains just express it all differently. I'm very lucky they still have that - and I can see it. Even in its addled form.

Thanks for your thoughts. And if anyone has any suggestions about how to design their living space (I'm searching the forums and online) please let me know or send me links. It will be a relief to not be fighting an unfriendly space - there will be studs wherever we need a pull bar! I will see to that!

Gretchen

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Caring for Mom, 84, with probable LBD, and Dad, with Alzheimer's.


Sun Feb 02, 2014 12:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Hi all - new here
Sounds like you have a great plan, Gretchen, that will be good for both your parents and you and your family.

Your mom has obviously been able to pull off "show time" so she appears to have it all together when she most needs to - at dr. offices, etc. Her ability to do show time will begin to wear her out until she can no longer do that. I used to watch my poor dad pull it together in front of dr. and friends and I could see how it wore him out, even after 15. min. of someone visiting him. Eventually he was no longer able to do that. Show time is why so many friends, relatives, and drs. don't believe us when we tell them about the "other times".

I saw a show on tv a few months ago about homes designed for the kind of living situation you are talking about. The older generation had their own small house attached to the children/grandchildren's house. I think there is a name for that sort of house but I don't know the name of it. It's kind of like a duplex but not exactly, as everyone can stay inside to get to each other's part of the house yet still have a feeling of their own living space.

Someone on this forum a few years ago wrote about a bathroom that she had totally redone because of her LBD husband and all of the accompanying "bathroom issues". It sounded like she made the bathroom like a big shower - tile walls, tile floor with drain in the floor near the toilet. I think there was also a moveable shower head that was nearer the floor to use to clean up messes and wash everything off the walls, outside of toilet, floor and down the floor drain. Making a shower floor that is flush so that you can push a wheelchair into the shower, and a shower seat to transfer to with bars will help also. You may want to search on the forum to see how others have remodeled to accommodate people who have serious mobility situations.

Let us know how your plans are coming. There's bound to be someone else on here now or in the future you may be able to help by sharing your addition ideas. Good luck - now you'll have a building project to manage too, but it sure sounds like you are going in a positive direction. Let's hope it gets built SOON! 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.


Sun Feb 02, 2014 12:28 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 47
Location: Pennsylvania
Post Re: Hi all - new here
Gretchen....you are a wonderful daughter to your parents. I am glad you have your siblings support too, as you will need some respite time for you.

The bathroom planning, Lynn referred to, is essential in any remodel plans.

God Bless.

_________________
Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Sun Feb 02, 2014 3:23 pm
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Joined: Tue Nov 19, 2013 6:40 pm
Posts: 9
Location: Kentucky
Post Re: Hi all - new here
Hi all,

I've been up much of the night (dumb, because Mom was not) looking for ideas. I saw the bathroom description on the forum and that was hugely helpful. (Why don't we install bidets in all senior facilities? Seems cheaper than and better than the alternative!) The other things you were talking about are, I think, called "Granny Pods" or "MedPods." The ones I saw seemed less than fabulous, but with lots of ideas - like surveillance cameras at 18" off the floor - good enough to tell all is ok, but still give some privacy. Not sure that's adequate in my situation, but....

I'm going to put together a list of links I'll share on the forum (I'll want access to them to share with my siblings, etc.) so I'll start another topic with more accurate information. I'm just on my first cup of coffee so don't bank on what I'm calling anything here. :-)

The 4-10" of snow forecast last night ended up being just an inch or two - more freezing rain - but they're talking an ice storm tomorrow. Tomorrow is the LBD Support Group meeting. It was canceled last month because of the polar vortex.... I REALLY hope it's not canceled again.

Thanks all for input!

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Caring for Mom, 84, with probable LBD, and Dad, with Alzheimer's.


Mon Feb 03, 2014 10:04 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 305
Post Re: Hi all - new here
Hi Gretchen,

You sound very well prepared for what's ahead. You may want to include a full time nanny in the plans if you can as the caregiving, especially for two, will wear you out over time! I just read your first note again and I saw my Mom walking from her home to the mall and back, with a walker, happy as a lark, about 3 miles away. Then, the next day, or week. not being able to get from her bed to the living room - big big physical changes within a week with no med changes. I also remember being at a restaurant and Mom absolutely would not step over the change in floor covering which made a line. She was absolutely convinced it was a deep hole, even though I was standing in it?! Good luck with the LBD meeting and the new neurologist. When we finally found one who knew about Lewy, it made a big difference for all of us - we could understand what was happening - sort of! :)

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


Thu Feb 06, 2014 11:54 am
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Joined: Tue Nov 19, 2013 6:40 pm
Posts: 9
Location: Kentucky
Post Re: Hi all - new here
Thanks Gail, it is always reassuring to hear about the rapid changes from others. How is it possible that this is virtually unheard of to everyone (including doctors!) that I know? Although my siblings believe me, down deep I suspect they think I'm exaggerating just a little. Hah.

Not knowing about the incredible fluctuations has kept me feeling some false security. Ive been thinking, "she'll do better soon," when instead I should have been thinking, "get ready NOW." I don't like surprises and I WAS planning, but I thought I was selling Mom short, rushing her into it. Little did I know I was still way behind the curve.

But what do you bet that the next time one of my siblings visits she'll jump up and cook a 3-course meal? :-). (I do hope so. I am learning to really enjoy her good times.)

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Caring for Mom, 84, with probable LBD, and Dad, with Alzheimer's.


Thu Feb 06, 2014 12:20 pm
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