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 very agressive 
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post very agressive
Hi all, after a wonderful week without lewy, hes back with a vengance. My poor mother called me last night. Dad was shouting and roaring and telling her that he was going to murder her and lock all the doors so noone could get in. I ran down and even with the seroquel, could not calm him down. He has had a few of these episodes. The last one he had, my parents neighbour rang me at 6am, as they coudl hear him roaring through the walls. My poor mother didn't want to worry me!!! I told her to call me in future, which she did last night. He had a tummy bug the weekend, and made a mess trying to sort himself out - I had to collect daughter from football, and whilst I was gone he took off the incontinence wear and had destroyed himself and all around him. Not a problem, and he was fine once I told him I had both himself and the house cleaned up. All was well Saturday, Sunday and yesterday, but he had a bad turn last night. He has no temp, is bright and says his stomach is fine. His chest is clear and his urine is not strong in colour or smell. I can't find the trigger. Anyway, the more important thing is , he is on 50mg of seroquel, and also ebixa. Can I give him another 12.5 mg seroquel? I rang his doctor but she isn't in yet? Any help or information would be greatly received.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Mar 15, 2011 5:33 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: very agressive
I'm so sorry, Ger. Dale never threatened me but those Lewy episodes are terrible. Dale was always 'protecting' me from the evil people he was sure were going to harm me.

I gave him Seroquel during the day only rarely so I can't advise you. I think I gave it to him only about six times. His nightly dose was 100 mg but during the day, I gave him only 25 mg.

My neighbor (the same one who came to help turn Dale yesterday) came several times to deliberately walk Dale around the house and calm him down. He was very good at it. He just talked softly with him and Dale seemed to understand.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Mar 15, 2011 6:32 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: very agressive
My husband had episodes like you describe and on a few occasions I gave him extra Seroquel, which did calm him. He still has episodes like that occasionally in the nursing home. He had one a few days ago, accusing the aide of 'stealing the antique furniture [that said used to belong to the Queen] out of his room. But he is unable to walk on his own now which is a blessing, in a way, as he can do less harm.

This is such an awful phase and the episodes are so frightening I really empathize with your mother. God bless all of 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.


Tue Mar 15, 2011 9:32 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: very agressive
If you can't reach the MD, you might check Dr. Brad Boeve's "Continuum" paper from 2004 to learn what an MD thinks the range for Seroquel (quetiapine) dosing is to treat aggressive behavior. Find it on lbda.org by doing a search.


Tue Mar 15, 2011 10:22 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: very agressive
Ger,
I do hope you were able to reach the doctor by now, none of us can advise on giving extra medication but if the doctor does get back to you and agrees more is needed ,try and get get a guide line from him what to do in these events when he isn't available and also word of caution Urine doesn't always have to be strong for an infection. I hope things are calmer today for all of you!

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Irene Selak


Wed Mar 16, 2011 3:50 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: very agressive
Thanks Irene,
yesterday was so busy I never got a chance to post about this. I gave Dad an extra 25mg of seroquel on his docs advice and it worked, thank God. I also discovered the trigger. He had almost run out of incontinence wear. He still had plenty to see him through till I got his supply in yesterday, but if there isn't at least 10 of them he starts to panic. I hadn't realised we had gone under the 10 - I am usually on top of it! So between the meds and my restocking on the depends, he eventuallly calmed down. His nurse told me that in future I can up his seroquel by 25mg when he has another episode without needing to ok it with her first. They are very cagey with his meds because he has had so many reactions and want to go slowly when changing anything. He slept in his chair for most of the day, which made me sad in one way, but relieved in another. Yesterday was extremely stressful, made all the more so because my mother was so upset. Today all is well, thank God, and he is much calmer. Thanks so much for your advice and concern.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Mar 16, 2011 4:37 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: very agressive
Good for you that you discovered the trigger!


Wed Mar 16, 2011 5:49 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: very agressive
It's so often the case, isn't it, that some thing that doesn't seem a problem or hasn't much significance for us can truly panic our LO's.

Back in the 1960's, my grandfather went into a rage that truly frightened my grandmother, though by that time he was pretty small and she was substantial. She did call the police (they were on a farm, so no neighbors to hear what was happening) and my grandfather ended up in a state hospital. There weren't a lot of other places to get help back then. Grandma had no other choice. If it had just been fear for herself, she probably would have toughed out, like your mom seems to be doing with your help. But I think she was concerned, in their very small community, that he might attack someone else. I was 15 at the time and only remember parts of it. His diagnosis was Alzheimer's but Mom's doctor says it was very likely LBD, especially because of his reactions to meds.

I understand that, financially, it would be very difficult to put your dad into a nursing facility. And to use a public facility is seldom attractive, even if they are available. I don't imagine your mom would want to have to do this. But if it gets to the point at which your mom's health (or mental health) is seriously threatened, do you have the option of going to some public authority for your mom's protection or even to protect your dad from himself? Is your mom capable of protecting herself, should she ever be threatened beyond the roar?

My grandparents came from a Scots-Irish background and there is a lot of backbone there - stubbornness, pride, self-reliance and "don't wash your dirty laundry in public." I'm guessing your parents have similar traits that need to be addressed before you can do much. But it could be a relief for you to just do some research on the not-quite-as-attractive options as well as the attractive ones. Just so you know whether there are alternatives or not.

Do your siblings know about these episodes and just how bad they are? Even if they feel you can handle it, they might be better interested in protecting your mom.

Talk with your mom, too, about how this is affecting her. Maybe include your siblings. They need to know, very frankly, everything that is going on. Your mom's worries might help develop a plan. I'm a wimp, and I know that I'd be terribly frightened if I were her.

Bless you and your mom. You're traveling a rough road without a lot of shelter.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Mar 17, 2011 1:59 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: very agressive
Hi Kate
thank you so much for your concern and reply. Thankfully, (and I know you will understand me when I say this), my Dad is too weak and feeble to be of any real physical threat to my mother. They live in a two story house, and my Dad sleeps downstairs in the old sittingroom, and my Mom sleeps upstairs. They may as well be living miles away from each other as, even though we had a stairlift fitted, Dad is too weak to get off the lift - though on a good day ( quite rare nowadays), he will go up on the lift and sit in it to say hello to her (he is not able to get off it upstairs without help as he gets too nervous). This is a good thing as we know he cannot reach her from there and would never risk getting off the lift. (My mother is bedridden and never goes downstairs). He does shout up at her sometimes, but he is not really a physical threat.

Mentally, its a different story. He can be quite mean, and my mother has been frightened of him. On these occasions, she has called me ( she has a phone and a panic button beside her bed) and I give him extra seroquel. All the family is aware of his behaviour, but it still falls on my shoulders (I am the eldest). I don't mind most of the time, - but there are days when it all feels too much. I have spoken to my mother about it, but she says she is ok for now, and would not be happy to 'have it on her conscience' that she put him in a 'home'. I do feel so sorry for her, as you can see it written on her face that she is being torn apart when he is cross, but her decision is that we will 'wait and see'. I do have a plan in place if it comes to decision time - there is a scheme here in Ireland called Fair Deal, where we can use their house as colatteral, and my mother can still live at home. When she passes, we then sell the house to pay for the nursing home. I am in constant touch ( daily now) with Dads psychiatric nurse, and she has a medical plan of action if he gets more agressive. My mother is a very strong individual, and I don't know if I could cope like she does, but I would hate to upset her by overriding her decision. She will tell me when she is no longer able to cope, and if not, I think I can read her pretty well. We talk frequently about it, and she seems ok. These extreme episodes don't happen too often ( but seem to be happening more often now) and usually he will just vent to me and she doesn't hear too much of what he says. Dad has an assessment this week, (which I won't tell him about until the nurse is almost at the front door) and we'll see how that goes. I'll keep ye updated. Thanks so much, and again I say it is wonderful to be here and have so much support from those who know what it is like to be in the lewy trenches.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Mar 17, 2011 6:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: very agressive
Ger, our system is similar here. When we run out of savings and my husband has to go on Medicaid which, unlike Medicare, pays for nursing homes if you are poor enough, our house will also be taken by the state after I die but I can continue to live in it until then. I could also get a 'reverse' mortgage on the house to pay for nursing home instead of going on Medicaid but that money could run out, too. It's a difficult situation but I had no choice but to place him, as physically I could not transfer him any more and had strained my back several times. He is often uncooperative, as well, which makes it even more difficult and he also fell several times and we would have to have paramedics come to get him up off the floor. I pray you and your parents can work it out but it should not be entirely on your shoulders. Hugs!

_________________
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.


Thu Mar 17, 2011 6:47 pm
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: very agressive
Why is it the Medicaid system simply adds more suffering in the longterm? You have to be broke, give up your home, and leave no inheritance to your children in order to care for your LO. This is so sad to me. We are on the same road too. We are down to our retirement fund.

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~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Sat Mar 19, 2011 12:19 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: very agressive
My understanding is that Medicaid allows the spouse to retain a portion of your savings. As Mom's been widowed for years, I never checked into it. Of course, she also had very little in savings and no house, as she lived with me.

Trying to avoid Medicaid, I spent my own money to care for her, which seemed appropriate at the time, but does make retirement further off for me (not to mention a lot of debt I built up). I was trying to protect Mom's pride by doing everything I could to keep her savings at a certain level.

If I had to do it all over again, I'd have spent Mom's money down and gotten her on Medicaid sooner. And those of you who are married, check with social services or a lawyer to find out how much of your savings you are entitled to. Don't impoverish yourself if you don't have to - especially not in the name of pride.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Sun Mar 20, 2011 10:00 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: very agressive
On the advice of a social worker I went to an elder law attorney within a few months of diagnosis. Being much younger than Coy meant I had many years ahead of me and would need my retirement funds. We considered divorce to protect my assets. (Technically only -- I woud continue to be his wife in evey other way of course. And this at a time when politcians were all over themselves nattering on about family values. Ha! If we'd never bothered to get married it would be only Coy's pension and assets at stake, not mine, too.) What we wound up doing instead was getting positioned to apply for MA. When all was said and done I had very little left of my retirement account, which is why I am still working. (By a legal quirk the amount of assets we were allowed to retain was based on what we had 10 years earlier -- a much smaller base than at the time of the diagnosis.) I did not work that first year after his diagnosis, and we lived on (and paid large medical expenses) out of savings, pension funds, and the sale of other assets.

I do not consider MA "charity." Coy supported himself since his teens, supported a family, took on a second family, paid all his taxes, paying into a system that is supposed to be available for catastrophic medical need, and now has exactly that need himself. There were several things I don't think the lawyer handled well, but I can't fault that basic decision: Protect as much of of the spouse's assests as you can and don't wait until they are totally depleted to apply for assistance.

And, of course, we didn't know how long it would be before Coy would need a nursing home or how long he would need it. There are so many unknowns when we start on this journey, aren't there?

If the LO has money, the logical thing for it to be spent on is the LO's care. If it is clear that that will not be sufficient for all the expenses involved over the long haul, I say, begin the process of applying for/qualifying for any assistance available to the LO. Under no circumstances would I have accepted money from any of our children for Coy's care. They have their own responsibilities and who knows what challenges they will face in their futures? Coy worked hard all his life, and behaved responsibly. He is entitled to use the system we both have paid into (and our children are paying into.)

I know that different people feel differently about it, but using Medical Assistance does not hurt my pride at all.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Mar 21, 2011 12:41 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: very agressive
I am with you there, Jeanne. My Dad worked hard all his life and IMHO he has well earned the right to be looked after by the state. He paid his taxes, and now is their time to repay him. My parents have no money or savings - they only have the roof over their heads, and are still paying back a loan on it in their 80's. We, their children, do not have the money either to help - believe me, if I had, they would have home care 24/7.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Mar 21, 2011 6:58 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: very agressive
Jeanne,
There is no need for you to feel bad for using MA, I made so many mistakes during my husband's care, I didn't know how to find any services and I used most of our savings to pay out of pocket for care, medications that weren't covered or high co-pays, I never once thought about MY future or my son which was still a minor, I wish had done things differently but sadly I didn't ! We did have a college fund that was used in partial for school but when it came to my son needing transportation, I had to dip into his college fund to make sure he was safe on the road, so now he goes to school a little at a time, he will get it done !! You just do what you have to do, but the money issues need to really be dealt with early on !

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Irene Selak


Mon Mar 21, 2011 9:51 am
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