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 Blogger notes the her grandfather has LBD 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Blogger notes the her grandfather has LBD
In this blog called "Young and Restless," a "teen girl" reports yesterday that her grandfather was diagnosed a month or two ago with Lewy Body Dementia. He had previously been diagnosed with Alzheimer's Disease. Earlier she says "having a family member with Alzheimer's is NOT for weenies."
Robin



http://alihendricks006.blogspot.com/

Monday, October 25, 2010

Life as we know it has changed
Pt. 1

Remember this guy? [photo of blogger and her grandfather]

I talked about him here, here and here.

For those of you who remember the stories, I wont bore you with telling them again & if you don't remember, just pop back over & read them before reading on.

So, I haven't written in a while because since I've been away at school and haven't been in the midst of it, it kind of has slipped my mind. I mean, I thought of him often and my mom would give me updates but I didn't have anything really compelling to write about so I didn't.

Little did I know, that was a good thing.

About a month or two ago, Granddad was diagnosed with Lewy Body Dementia. The doctor described it as the worst symptoms of Alzheimer's combined with the worst symptoms of Parkinson's. He said that Lewy Body patients are extremely combative and usually, "move around a lot", meaning that he would be kicked out of a lot of nursing homes. Unlike a normal Alzheimer's patient, doctors cannot tell what stage Lewy Body patients are in and how they will progress. It's kind of a wait, see, hope & pray thing. It was a total freakin' nightmare diagnoses basically.

Despite the horrific diagnosis, Granddad had done pretty well with only a few minor outbursts every week or so. When he would have an outburst, the nursing home would give him a pill, he would sleep for a couple of hours and then be fine again.

Fast forward to Fall Break. I went & saw him. I knocked on the door & he answered with a big, "Hey Baby!" He had not slept much the night before though, and I was still feeling pretty puny, so we decided to take a nap. It's a weird thing, but it felt so awesome to take a nap in his room. He slept in his chair & I slept on his bed, but for the first time in a long time, it felt like I had a "normal" grandparent again. Whatever normal is. His therapy nurse came in & woke us up so I left so that he could do therapy. I saw him the next day when we brought him some new clothes & he was sitting at the lunch table with his friends & asked for another one of the sweater vests. He was doing great.

Last week, my mom had conferences in Indianapolis so she was out of town & she had written that in his charts but of course, as soon as she left, the nursing home started calling. The first nurse began by asking if my mom was going to make it to a meeting that she was supposed to be at - she had forgotten & asked if she could reschedule. Then, the nurse told her that Granddad had gotten a little out of control that night. Annoyed, my mom told her that she was out of town & that she had written that in his chart.

It was only an hour later when the nursing home called again & said that well, they had gotten it wrong the first time - he had gotten really bad before - he had scratched one of the nurses & someone was going to need to stay with him all night. Again, my mom told them that she was out of town & they would need to try to call my uncle. They said okay & that they would have two women stay in there for the night but they would charge $20 an hour.

Before the night ended, Mom called and asked how he was doing. He was resting, they said. Mom asked if the ladies were staying with him & they said no but he was okay. WTF??

In the morning, she called again to check on him. Again, they said that he was resting but told Mom that they had taken the legs off of his bed. You know, so he wouldn't hurt himself. So, my mom said, he can't walk then? That's right, the nurse said. She said they had been giving him Klonopin, a very dangerous drug, every 4 hours. They couldn't allow for him to come out of this slumber. And, oh by the way, he needed be taken to a behavioral center right away. He was too much of a risk to have in their facility. They were kicking him out .... {To Be Continued}


Tue Oct 26, 2010 12:20 pm
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Joined: Wed Aug 11, 2010 2:34 am
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Post Re: Blogger notes the her grandfather has LBD
Wow! My heart goes out to this teenager dealing with her grandfathers illness. I can relate in some ways as when dad was admitted to hospital before we found him a place in a nursing home his bad behavior escalated too with violent outbursts mainly at night and he became a shell of his normal self. Then they took him off the Risperdrel and changed to Selequol and by the time he was tranferred 4 weeks later he was better but we are now reaping the benefit of this change now 8 weeks later now he is in nursing home care. The settling period in over and his suspicions of all the staff is getting less and less in fact he has a light hearted banter with some of the ladies there which we laugh about. Yesterday he wanted me to leave him $10 dollars to see if he could "Get with one of the ladies there" I assured him he would need more then $10 to do that! LOL. My heartfelt sympathy for what this family has gone through I feel so fortunate to have dad where he is with friendly staff who take a genuine interest and always happy to see you when you visit. It is sad that there are stories out there like this and all due to ignorance of this condition and its unique way that it manifests makes it all trial and error as all develop it differently it seems.


Tue Oct 26, 2010 7:39 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Blogger notes the her grandfather has LBD
Did he laugh about the $10 being too little or did he not get it? Many of us have been asked by our fathers to find ladies for them.

One PDD gentleman I know is still able to call escort services on his own. It's a challenge to the family dynamic, that's for sure.


Tue Oct 26, 2010 8:47 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: Blogger notes the her grandfather has LBD
Not sure which is worse - our LOs calling 911 when they don't get someone to come in 2 seconds, or calling an escort service. Oh my, I'm glad that's one thing I haven't had to take care of!

_________________
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 Oct 26, 2010 9:52 pm
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Joined: Wed Aug 11, 2010 2:34 am
Posts: 54
Post Re: Blogger notes the her grandfather has LBD
Yes he we did laugh about the prospect of him scoring actually that is something I am enjoying during my visits with dad that we can still laugh at things he comes out with. I did however ask him the PLEASE not ask mum for $10 dollars as she does not have the wicked sense of humour that dad and I share. And I did not give him the money, am still undecided, the staff might not appreciate it and would probably wonder where he got it from. Don't think he could explain his way out of that one! But I did say at the time "Look dad if you want $10 to put in your top draw I will give you $10 WHO CARES! It is freakin $10, life is short but if mum asks just tell her I gave it to you and to call me if she has anything to say about it."


Wed Oct 27, 2010 2:18 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: Blogger notes the her grandfather has LBD
Sometimes my dad still asks me for some money so he can pay the snack lady when she comes around and so he can pay for his meals at the ALF. I just remind him that I pay for all that stuff in their monthly bill. It's amazing when he feels this responsibility to take care of his expenses, when so many other things have disappeared from his brain! 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 Oct 27, 2010 11:41 am
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