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 My Introduction and Journey 
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Joined: Wed Jan 08, 2014 11:32 am
Posts: 20
Location: Canada
Post My Introduction and Journey
Hi everyone. My name is Alan, I am 52 and am a caregiver to my 59 year old wife who has not yet been given a clinical diagnosis of LBD, but has all of the signs and symptoms.

12 months ago she was diagnosed with Parkinson's due to head and hand tremors, fatigue, muscle stiffness, poor short term memory recall and an inability to concentrate at work - currently she is on LTD and will never return to work as an oncology nurse.

Over the course of the last 12 months she has experienced olfactory, visual and auditory hallucinations, frequently gets lost in places that she has been numerous times, has had an unexplained cardiac episode despite having no heart issues, extreme fatigue, constipation, blurred vision etc. Her neurologist tells her that she should not be having these symptoms and I agree that what she is experiencing is not simply Parkinson's. Her psychiatrist does not feel she is clinically depressed and all other possible causes (vascular issues, thyroid etc.) have been ruled out.

At this point I am tired as well from being the sole caregiver while working full time. I have decided to bring our three children up to speed soon regarding her condition and to ask for their help. This discussion has not happened yet, they know their mother is sick but do not visit often enough to see all of the symptoms or to participate in her care. Any advice that you could share about telling our children (ages 35, 33 and 25) would be most appreciated.

Thanks very much in advance and best of luck with your individual journeys as well,

Be well,

Alan


Wed Jan 08, 2014 3:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: My Introduction and Journey
Hi Alan - you and your wife are so young to have to be going through this. Many times, there is at least 1 family member who doesn't believe the primary CG (denial can be very strong in some people), so be prepared that one of the children may not want to hear the reality of the situation.

If you haven't already done so, you may want to document specific symptoms, with dates and times. When you have data in black and white, most people will pay more attention and give more credence to what you are saying. You may want to get brochures from the LBDA to distribute to family members and also to your wife's drs. Many drs. and nurses know NOTHING about LBD and it is up to the rest of us to have to educate them. This will help both you and your wife in the short term as well as later on.

People with LBD often have terrible reactions to the very drugs that help people with Alz., so it's really important to get as best a dx as you can (although LBD can't REALLY be dxd until an autopsy is done). But, based on what you tell the drs. they should be able to make a pretty good dx, and it may be that you have to seek out more than her current drs.

Come back often - there is lots of support and info. here. Read the topics first on here that are most important to you right now, then keep on reading. "Forewarned is forearmed!" Good luck to you, and find a way to get some respite so you don't get totally worn out from being a CG. It is a very tiring and frustrating job and you need to get your sleep and keep yourself healthy. Best, 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.


Wed Jan 08, 2014 5:38 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My Introduction and Journey
Welcome, Alan! It's sad that you have to be here but I'm glad you found us. Get as much help from family, friends, neighbors and agencies as you can as early as you can. It will not get easier. God bless you!

_________________
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.


Wed Jan 08, 2014 7:19 pm
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Joined: Wed Nov 13, 2013 3:30 pm
Posts: 70
Post Re: My Introduction and Journey
Glad you found us.

I'm in the same Young LBD Patient bucket with you, only it's my husband at 53.

Everything you mention smacks of LBD. Find a Cognitive Neurologist ASAP and get her in there.

Educate yourself and read whatever you can get your hands on. Information is power and you need it to advocate for your wife.

Aricept, in low dosage, has helped my husband a little bit. It allows him to sleep better, which means I sleep better. Alas, all the rest of the symptoms remain, but I can handle it for now.

Getting copious amounts of fiber down her everyday is critical to avoid the constipation. David takes 2 Fiber Con pills once a day, plus eats 3 pieces of fruit and whatever I can add in veggies for dinner (especially sweet potato). This has kept him regular now for a few months.

Also have her Vit B 12 levels checked and supplement if needed. LBD patients can be chronically low and that makes the confusion worse.


Thu Jan 09, 2014 8:09 am
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Joined: Wed Jan 08, 2014 11:32 am
Posts: 20
Location: Canada
Post Re: My Introduction and Journey
LTCVT, mockturtle and Chocomare, thank you for your replies and suggestions!

I have symptoms documented for the discussion with the boys so as to keep things factual and objective - that part will be the easiest. The prognosis component will be difficult for them to accept and I am not sure I need to go into detail just yet. I think I will let them do a little research on their own (guided of course, there is so much information available and not all sources are reputable).

Similarly, my wife struggles with the notion of dementia although she is aware of what is happening to her and (I believe) has not hesitated to report symptoms to me. She has been an active sleeper for more than 25 years, yelling, punching and kicking several times each week. Thankfully my Army days allow me to sleep through most of these episodes. :-) and yes, I can still smile from time to time, more now that I have found this forum and all of you - thank you!

Am off to view the rest of the topic areas - thanks again for your insight and your help. Be well,

Alan


Thu Jan 09, 2014 11:01 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 741
Location: LA
Post Re: My Introduction and Journey
A couple of things: When dealing with the "kids", I expect your wife will go into "Show Time". Try not to be upset with her when that happens. It is part of Lewy Body and we have all been accused of making a big deal out of nothing. One care giver demanded her doctor come spend a week at their house. Especially nights. I have long thought the kids should have 'slumber parties' at home just to see what your night life is like. When darkness comes, the caregiver's day starts. Another caregiver suggested we should all wear Tshirts proclaiming us to be: "Ladies of the Night". You speak of smiling sometime. One advantage of Lewy Body over other dementias could be, notice I say "could be", a few moments of lucid thoughts and speech. It happened with Mr Bobby [my husband] the first thing in the morning when he was well rested. I lived for those moments.

You can do this. But let the kids know you need them. They will be glad you did.

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Thu Jan 09, 2014 7:30 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 741
Location: LA
Post Re: My Introduction and Journey
I find when searching for "Show Time" on this forum, the little genie insists on searching for "time" which leads one far astray. I tried "Showtime" as one word and found the correct posts.


Thu Jan 09, 2014 10:32 pm
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Joined: Wed Jan 08, 2014 11:32 am
Posts: 20
Location: Canada
Post Re: My Introduction and Journey
Called a family meeting and invited the three boys over to chat about their Mom's health, prepared information for them to keep things as factual as possible. Unfortunately before I could meet with the boys she took a tumble missing the bottom stair and was unable to break the fall with her arms/hands. The poor thing ended up hitting her head and shoulder on the door frame - wasn't unconscious but ended up with two black eyes, a bruised nose, arm, shoulder and pulled a few ligaments in her thumb.

When the day came, only one boy showed up - when I questioned the other two as to why they didn't come they stated that they didn't feel a meeting was necessary, that anything I had to say I could say any time. While true, my goal was to have them all receive the same information at the same time and let them know that we were all in this together. Apparently we are NOT all in this together... <sigh> I was prepared for resistance but not this much.


Mon Jan 27, 2014 10:52 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My Introduction and Journey
I totally understand and sympathize. It's wonderful when you can get family support but you may as well face the fact that it's a one-man [or woman] show when it comes to caregiving responsibilities. There are a few families where everyone pitches in but, alas, they are the exception.

_________________
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.


Mon Jan 27, 2014 10:58 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 268
Post Re: My Introduction and Journey
Hi Alan,
I think it's always hard for children to accept that their parents won't always be the parent they've always been and I think its especially hard for boys in my experience! So having at least one son to explain it to is a good first step. Maybe a sibling explaining it to another sibling will be easier for the other boys to digest. It sounds like you've got a handle on things and asking for help before you wear yourself out is a very smart first step. hang in there!

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


Thu Jan 30, 2014 2:32 am
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Joined: Wed Jan 08, 2014 11:32 am
Posts: 20
Location: Canada
Post Re: My Introduction and Journey
Gail, thank you for your kind words and support. While it appears that I have a handle on things, the truth is that most days I don't feel like I do. The shift from husband to caregiver means that our relationship has changed significantly, if not completely - I'm sure most know of what I speak. The boys will come around and I agree that for some, hearing the words from multiple sources (not just from me) is important to bring the message home.

I just want them to realize that the time to make memories is now because there may come a time very soon where no more can and will be made. Perhaps that sounds a bit morbid or drastic, but I've always thought of myself as a realist and from everything I read, research and learn from others, this is the new reality in front of us.

That, and I don't want to be alone on this journey...

I really do appreciate your thoughtfulness and encouragement - thank you so much!

Be well,

Alan


Thu Jan 30, 2014 10:41 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: My Introduction and Journey
Alan - not morbid, and not drastic. You will have some more fond memories in your future, but realistically, they will be fewer and further between.
Surround yourself with friends and family who can help give you the support (in addition to all of us on this forum). I attended CG meetings and went to a 1-week CG class, where some strong friendships were forged 5 - 6 years ago. Some of these people have become my closest friends, even though our LOs have since died. If you have either or both of those things available, I'd encourage you to look into those. And of course, all are always welcomed and supported on this forum. 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.


Thu Jan 30, 2014 7:12 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 268
Post Re: My Introduction and Journey
Hi Alan, When my Mom first got the LBD diagnosis the first thing I did was google - I do that for everything now!! And I found this site and lots of others and just read and read about Lewy. After reading it became very clear to me that that was what my Mom had. After accepting that, dealing with the behaviours and really everything was better because I didn't expect her to be her old self. Maybe if you can get your sons to read up on LBD the same will happen for them... Hang in there!

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


Fri Jan 31, 2014 12:13 pm
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Joined: Wed Jan 08, 2014 11:32 am
Posts: 20
Location: Canada
Post Re: My Introduction and Journey
It's been awhile since I've been here - just busy dealing with the realities that life has me facing.

Am feeling guilty these days for feeling angry about this fate that life has given my wife and I. Most friends and family are polite, ask how things are but the truth is that they can't really understand what everything means or the stages of loss that I feel that they don't. I hope they never have to but in some ways, I do. I know that doesn't make any sense, I would never wish anyone harm or illness, just trying to cope...

I simply feel isolated and alone. Thank you for listening...


Wed May 28, 2014 10:00 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: My Introduction and Journey
I felt the same way when my dad became so ill, Alan. If it weren't for this forum I don't know what I would have done. Also, I joined a local support group that met once a month and I became good friends with some of the people in that group. Only those experiencing the same sort of situation can really understand what it's like to be the sole or primary CG of someone with dementia. And when the person is still able to do show time, others REALLY don't get what we are going through because they mostly see the lucid times, the physically ok times.

Come back here often, and if you haven't already, I'd highly recommend you find a local support group. Also, I hope you are getting some respite from CGing and getting out doing something fun just for YOU so you don't become ill. It is a very difficult job to be a CG, and those who don't think so either are fooling themselves, or their LO isn't at a difficult stage yet. The reality is, until there is prevention or a cure, our LOs will only become more debilitated and more dependent on care from others, so it is super important for you to find ways to take care of you along the way. Big hugs, 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.


Wed May 28, 2014 3:39 pm
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