View unanswered posts | View active topics It is currently Thu Sep 18, 2014 5:51 pm



Reply to topic  [ 15 posts ] 
 Thought it was EOAD but recently convinced it's LBD 
Author Message

Joined: Mon Nov 05, 2012 9:35 pm
Posts: 4
Location: WA
Post Thought it was EOAD but recently convinced it's LBD
I recently discovered this forum. Thank you, I look forward to learning much from everyone's experiences.
My husband was diagnosed with EOAD in 2006, 5 months after we were married. Being told by a neurologist that he had classic EOAD, I didn't question it.
He lived at home until 2011, about 15 months ago when he thought the day stay program he was attending at an assisted living was his home. I was losing my mind - seriously - at that time and needed a respite. It was the worst day of my life to have to move the love of my life from our home. WORST. EVER. I cried all day and throughout the night. I went every night and had dinner with him. He was happy and I'd take him places, out to eat, home to visit the pets, etc often. Then he began falling and had unexplained injuries. I decided to move him then to a more dedicated memory care community. Thinking that he had EOAD, his Dr. prescribed him Antivan for his agitation. Little did I know that "nursing" homes love to shove this down their throat to shut them up. His agitation worsened to primal, demonic screaming and hitting anyone near him. It was decided that he needed to go to Geropsych, where they still shoved the Ativan down his throat and after a 3 week stay he could no longer walk. They still said he had EOAD and put him on more neuroleptics.

A few months later he started in with the primal, demonic screaming and hitting again. Then someone asked me if he could possibly have Lewy Body Dementia. I had no idea what that was. During my research I sat reading with my mouth hanging open as EVERY symptom I read, my husband had. They sent him back to the hospital, only this time they couldn't get him into the Geropsych unit, so a wonderful ER Doctor admitted him to the stroke unit where we had mostly good doctors. (And one horrible one I screamed at and never saw again.) They sent over the specialists from the Geropsych unit to evaluate my husband and I screamed at them until I was blue in the face that I am certain he has Lewy Body. I literally pounded my fists on the nurses station counter and screamed DO NOT GIVE HIM ANY NEUROLEPTICS! Thankfully I am his medical POA so they had to listen to me. Plus I screamed a lot. LOL :roll: I am my husbands voice. I am my husbands lifeline. He is utterly helpless. I will fiercely protect him.

Finally the head Psychiatrist came to evaluate my husband. Again, I explained that I am convinced he has LBD. He listened and asked me questions (what a novel idea - I'm the one that KNOWS him best.) When I told him he had daily hallucinations he finally said "yes, that's LBD". Still my poor husband had to be medicated for a myriad of tests, including a lumbar puncture that I was against until his regular doctor explained what they needed to look for. (Thank God for concierge doctors! I love them!)

Once they took Craig off of neuroleptics he is more alert and doesn't sleep as much. But the damage is done. He cannot walk, speak well or feed himself. They now use an antihistamine to calm him down when I'm not there. I can usually calm him. We're still battling the severe agitation, and I am hoping to learn more how you all are treating or dealing with agitation. He still can't walk or feed himself, and only sometimes gets out a good sentence. Some days are better than others. Last night was a true gift. He was more himself than I have seen in weeks. Today was sleepy day. I miss him. He is my heart, my soul, my true hero.

I keep a blog to for family and friends on his progress and sometimes just for my soapbox to get things off my chest. I see a psychologist once a week and try hard to care for myself after ending up in the ER with severe chest pains.

I still have dinner with him every night. Somedays I spend the whole day with him. One thing I have learned, no matter how wonderful the memory care home's reputation is, no matter what you've been sold - BE THERE OFTEN. Not every caregiver is a good one. Not every nurse is a good one. I make darn sure he has the BEST caregivers there. I don't settle. I demand. He's worth it. I've never been this assertive in my life.

_________________
Wife of 66 year old husband who was diagnosed at age 59 with EOAD. I'm convinced he has LBD.


Tue Nov 06, 2012 3:11 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Thought it was EOAD but recently convinced it's LBD
Welcome to the forum! A lot of your observations resonate with me, as I also had to place my husband in a SNF almost two years ago, also visiting every day and staying on top of his care [as you know, vigilance is hard work and it can be a challenge to be diplomatic at times]. Although I truly appreciate most of the caregivers and am sympathetic to their limitations, they also appreciate the fact that I do a lot of his care when I'm there and that I go to them directly with issues rather than over their head. As you rightly state, we are the only advocates for our loved ones!

At a recent care conference, there was only one issue I had to bring up with the supervisors and that was the timing of medications. I had complained over and over about some of the nurses not giving him his AM meds in a timely manner [he gets Sinemet five times a day and the doses require even spacing]. Since the conference, they have been doing better with that.

I think it would be a good idea to have a sub-forum dealing with LOs in facilities, as we have issues unique to that situation. Maybe I'll take it up with the director.

Glad to found us, hope you will find the forum as helpful and supportive as we have.

_________________
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 Nov 06, 2012 11:27 am
Profile

Joined: Mon Nov 05, 2012 9:35 pm
Posts: 4
Location: WA
Post Re: Thought it was EOAD but recently convinced it's LBD
I LOVE the idea of a sub-topic for SNF's. It's been an uphill battle but seems to be getting better. I am so thankful for all the wonderful friends I have made with the other family members. We have a bond. I love them. As much as I "screamed" at the hospital I do try to be more tactful at the memory community. I bring cookies and treats for their break room and praise and thank the good caregivers DAILY and often tell management how good the good ones are.

_________________
Wife of 66 year old husband who was diagnosed at age 59 with EOAD. I'm convinced he has LBD.


Tue Nov 06, 2012 11:52 am
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Thought it was EOAD but recently convinced it's LBD
Yep. I am living my days at the State Vet Home as we get used to them and they get used to us. Tonight, I came back from being gone a couple of hours to find Ted in a hospital gown--didn't know why, so I asked. Turns out one of the aids had just "put him in it". I nicely explained that he preferred his t-shirts (of which there were plenty in the drawer). Going at different times and introducing myself to everyone seems to be helping. Some of the folks are better than others (no, the one with the gown incident is already not one of my favorites). I agree that keeping in touch and visible makes a difference. Even though we left the other SNF, I went back and hugged and thanked many of the workers for the good care they gave to Ted. I explained to the director (who is also on good terms with us) that I was frustrated by the doctor's inability to communicate with us. I wish he would have communcated with me, I think I would have loved the opportunity to yell at him :-).


Tue Nov 06, 2012 9:17 pm
Profile

Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Thought it was EOAD but recently convinced it's LBD
So glad to see that I am not the only wife who gets onto medical personnel for making mistakes or for wanting to do something that will cause problems for my husband. I've already fired a primary care physician for making a mistake that darn near killed my husband, and recently I rebuffed a geriatric psychiatrist when he approached me with his God complex and told me it was his way of treating my husband or I could take him home from the gero psych unit. I took my husband home.

During a hospitalization this week, my husband's nurse asked his doctor for an order to insert a folly catheter into my husband, because he was incontinent and being resistant to having his diaper change, and I would not have found out about this nurse's intentions if I hadn't called her just before she was getting ready to insert it. When she told me what she had arranged with the doctor, I said, "Like hell you'll put that in my husband! Do not insert that into my husband, because I do not want him to get a UTI!" Later when I got to the hospital and met with the nurse, I quickly discerned that she wanted to insert the catheter for her convenience and that it wouldn't be such a big deal if he got a UTI and had to go on antibiotics for it. To which I asked, "Do you know what happens when a person with LBD gets a UTI?" She said, "Yes, they get confused." And I said to her, "Whatever happened to the concept of Do No Harm?" But in her mind there was nothing wrong with inserting a folly catheter. Grrrr.

So yes, whenever our loved ones are in any facility other than home with us, we must keep a watchful eye on the ones who care for them....which is what I do religiously.

_________________
Beth


Wed Nov 07, 2012 11:05 pm
Profile

Joined: Mon Nov 05, 2012 9:35 pm
Posts: 4
Location: WA
Post Re: Thought it was EOAD but recently convinced it's LBD
Beth,
I love that you are on top of medical "professionals". You have to be. I have learned so much during the Lewy Body experience. We can't assume they know best. Even now I am educating Craig's GP on Lewy Body and what you can and cannot give them. I've done nothing but fire neurologist after neurologist because of their "God" complexes. Every single one of them wouldn't listen and blew me off. I'm not going to pay someone to treat me and my helpless husband like that.

We have to educate ourselves - THANK YOU FOR THIS FORUM!! - and stand up, be assertive, ask a million questions, fight, demand and never accept less than respectful treatment.

In a nutshell: We are the boss. They are the "hired help". I'm not saying not to respect their accomplishments of knowledge; it's like any business situation, if they are not doing what you hired them to do then you terminate them and find another.

_________________
Wife of 66 year old husband who was diagnosed at age 59 with EOAD. I'm convinced he has LBD.


Thu Nov 08, 2012 2:10 pm
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Thought it was EOAD but recently convinced it's LBD
Boy, I wish I could hit the "like" button a thousand times for your comment!


Fri Nov 09, 2012 7:56 am
Profile

Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Thought it was EOAD but recently convinced it's LBD
maddogandme, I agree with jeanted, great post.

_________________
Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sat Nov 10, 2012 10:21 am
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Thought it was EOAD but recently convinced it's LBD
Beth, you are my hero!! You, too, maddogandme!

Have you guys read my post in "Practical Caregiving Tips" on the "Caregiver as Coach"? I think you might enjoy it.

Each of us is the coach of our own caregiving team. No apologies for expecting team members to do their jobs well.

Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue Nov 13, 2012 8:18 pm
Profile

Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Thought it was EOAD but recently convinced it's LBD
Hi Pat:

Yes, I read your "Practical Caregiving Tips" post and I thank you a thousand times for writing that post. It made me feel like I am not alone in my quest to be a top knotch advocate/caregiver for my husband.

_________________
Beth


Fri Nov 16, 2012 5:21 pm
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Thought it was EOAD but recently convinced it's LBD
Thanks, Beth.
For me, feeling less alone in caregiving is HUGE!!
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri Nov 16, 2012 9:32 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3361
Location: Vermont
Post Re: Thought it was EOAD but recently convinced it's LBD
So sorry for what everyone is going through but it really puts a smile on my face when I read about other CGs being very assertive in their fight for better care for LOs. You all are so right - these people are hired to care for our LOs. They are like our employees, not our bosses. Frustrating as it is, I really have to smile about others "firing" doctors. I felt so empowered the day I fired my dad's psychiatrist! However, that backfired since my dad's CNP (his primary "doctor") and the psychiatrist must have had some interesting working relationship since she (the CNP) got mad at me and put my dad back on the meds that I didn't think he should be on. At least I felt good about firing this guy so he wasn't making any more money off the poor "care" he was being paid for by my dad's insurance. Hang in there everyone. 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 Nov 18, 2012 5:11 pm
Profile

Joined: Mon Nov 05, 2012 9:35 pm
Posts: 4
Location: WA
Post Re: Thought it was EOAD but recently convinced it's LBD
I'm so glad for everyone's comments. I feel so much better and also like you, not so alone.
I've decided to have our house accommodated for my husband's wheelchair and disability and bring him home. I'm exhausted from "babysitting" the "memory care" community. Day after day I have gone in and they just leave him in his room while others are playing games. He commented to me on a very lucid day that "I'm just wasting away in here". I related that to the staff, and for awhile they were very attentive to get him out in the activities more. Now they are leaving him in his room again. I'm tired of paying them thousands and thousands of dollars a month to let him sit in his room. I can do that at home with a hired caregiver. Many other issues as well, so it's just time. I've had it.

_________________
Wife of 66 year old husband who was diagnosed at age 59 with EOAD. I'm convinced he has LBD.


Tue Nov 20, 2012 1:42 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3361
Location: Vermont
Post Re: Thought it was EOAD but recently convinced it's LBD
Is your husband mobile? Is he a 1 or 2 person assist? If he isn't mobile and needs assistance transferring I'd consider finding another SNF where you think he'd get better care. UNLESS, you can hire 1 or 2 CGs to come in and help you - you don't want to injure yourself.

Re: his being involved in the activities at the SNF - reminds me of when my dad first moved to an ALF. I was so excited that they had all these activities and I was upset that he wasn't participating in them. I thought they were forgetting to get him, not letting him know about what was going on, etc. Then when I investigated I found out that as soon as I left he'd ask to go back to his room. He didn't really want to participate and would appease me by going to the activities room or dining room when I took him, but as soon as I was gone, he didn't participate by his own choice. And I thought about all the money that was being wasted - they'd take people out to lunch once a week on their bus and he only went once or twice under duress. We were paying for all these extra things that he wasn't getting, but it was he who was refusing to be involved.

I guess I'm wondering if this could be the same for your husband. Is it possible that he doesn't want to participate and puts on a front for you, but when you leave he actually DOESN'T want to participate and just wants to be in his room?

Best wishes, it's a hard role being a CG. 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.


Tue Nov 20, 2012 9:18 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Thought it was EOAD but recently convinced it's LBD
Maddogandme,

Just a quick welcome to you, I see many have alreay made you feel welcomed already as I was away and having some IT issues which I hope are behind me now.

I am glad you found the forum and there are also a few online support groups if you are interested !

_________________
Irene Selak


Sun Nov 25, 2012 4:36 pm
Profile WWW
Display posts from previous:  Sort by  
Reply to topic   [ 15 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr