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 Hi from Victorville, CA 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Hi from Victorville, CA
Robin is right about checking with all key institutions, especially insurance companies and banks to make sure you have all POA needs met.

And even if the state does not require POA recording with the Register of Deeds (as in NC) or the Clerk of Court, it is still a good idea to do so. The reason is that you will always have access to a certified copy from that official state office, which should serve as equally legally valid to the original, in case you lose or cannot lay your hands on the original.

Another thing many do not know that is crucial. At least in NC, only the ORIGINAL will is valid. Copies do not count.
In our law office, we always had our clients make a copy of the will. Then take the original will to the estates division of the county Clerk of Court where clerks would file the original will for you and give you a receipt. Then attach this receipt to your copy of the will and place it in your safe deposit box at your bank or credit union (so family would see where to find the original). This way you would never lose the original and you would have it where it is needed at the time of death. I also gave our children copies of our will with attached notes telling them to go to Clerk of Court for the original will.
This sounds like a lot of hoops to go thru, but many people misplace the original and this way it cannot be lost.

Terri, I get the hurt thing about not being trusted. Robin is probably right for many marriages, but for mine, I tell John if he cannot 100% trust me, that one is a deal breaker for me. I give him space to sort out his feelings, then come back later and let him know how important that is to me as his caregiver. Eventually, he has to convey that trust in words to me. Remember, though, that I am still in early stage. Things may change as time goes by and John diminishes in capacity to understand. But for now I want and need that affirmation from him and I think I deserve it.

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]


Wed Jun 13, 2012 6:46 am
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Hi from Victorville, CA
Robin, thanks for the info for CA. Pat, thanks. I think I will heed both of your recommendations. When John came in and asked what I was doing and I mentioned my concern about his not trusting me, he said, "of course I do, I love you. Your all I have!!" I explained why I was so hurt, he listened, I got over it. I understand what you mean by "tread carefully." Based on all I've seen of him throughout our married life, I would say I have nothing to worry about. He's pretty pliable if you know what I mean. However, I do know that this LBD can alter behavior and what before has been a total reliance on me for the business end of our marriage, it could easily turn into doubt and paranoia on his part. I will "tread carefully." We are talking more about his disease. A home health nurse is coming Friday to go over things with us and help identify things we might do around the house to make it safe. I'm a realist, but have fought the urge to talk openly about what we may be facing. I realize LBD advances differently for different people, and in some cases, the LO will die of other causes before the dementia takes him/her on the journey to oblivion. He's at the point where you can't really reason with him, but if I talked about what's coming, he would take it in and understand. I just don't know if he can handle it, in fact, I don't think he can. Where that poses a problem for me is in the fact that he gets distressed, or even defiant, when I bring up ways to make his life more comfortable as things turn south. He had forgotten the discussion in the doctor's office about the home health nurse and thought I was keeping things from him (the trust issue again). He was also concerned about what it would cost. I told him it was covered by Medicare. Many months ago while reading the "36-Hour Day," he got very upset when the talk turned to incontinence. He threw the book across the room. This was before any real diagnosis. I'm glad he was interested in learning about dementia, and has since read more about LBD, but he does not want to acknowledge what may be coming. Financially, at least for now, we are good, so even if there was a cost for the home health evaluation, I would pay it. As to what may need to be changed around here to make his life safer, is it better to just make the arrangements to have it done (if it requires professional help) rather than try to get his concurrence and support? I have no problem discussing it with him and trying to get his agreement, but I know if he balks, he can't really be reasoned with. I think if I proceed, he will accept whatever I decide, just getting there will be extra stressful for me. Major mods costing lots of money will probably not be on the list, but many other minor projects that may be suggested are certainly feasible... Oh sorry, I got so carried away. Won't blame anyone for not reading through this. Sheesh!!

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


Thu Jun 14, 2012 9:10 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Hi from Victorville, CA
Seems to me it is important not to underestimate the personality changes that can occur with this disease. I am speaking as a CG child but I don't think that diminishes my experience in this regard. My mother, who has LBD, used to be the most compliant, trusting soul in the world, and we had a great relationship. I have handled or had a strong hand in her affairs for many years, and before LBD struck, her trust was unquestioning. It was amazing to see how suspicious she became later. Thank heavens she had signed financial and health care powers of attorney well before they were needed, so I was able to continue handling her affairs.

Even those of you who now have the trust of your spouses should be aware that things can change dramatically. Be prepared.

Julianne


Thu Jun 14, 2012 10:38 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hi from Victorville, CA
I doubt you will have your husband's "concurrence and support" on all you do. Dementia just doesn't work that way. You'll have to pick your battles.


Thu Jun 14, 2012 11:23 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Hi from Victorville, CA
Terri, my heart goes out to you. Your posts bring back memories of our early days dealing with Lewy, and it is very painful indeed. Of all the symptoms we've dealt with I think that distrust and paranoia were the worst on me. The blatant paranoia -- asking the neighbors to use their phone because he was being held hostage in his own house -- was not the biggest problem. Those cases were pretty easy to dismiss as "Lewy behavior." It was the more subtle distrust, the "why didn't you tell me?" and "why should I listen to you?" and "who gave you the right to make all these decisions?" that was much harder for me to deal with.

I don't often put myself in Coy's place -- too bleak. But sometimes I try to consider how it must look from his side. What if I woke up in the morning and wasn't quite sure who this guy was who was trying to get me to use the toilet? He looks familiar. He looks a lot like my husband. But my husband never treated me this way, like I was a child. So who is this imposter? Also, this guy who now claims he is my husband is a lot older than the husband I remember. Something very strange and sinister is going on here.

And what if I understood the doctor's instructions just fine, and then I didn't even remember going to the doctor, let alone what she said? And this guy is insisting that I do something because "the doctor said so" -- Ha! And now this guy is telling me that we talked this decision over and I agreed to it. Ha! How can I trust him when he says things I know can't be true? Certainly they can't be true! If they were true that would mean there is something seriously wrong with my brain, and that is too scary to accept.

As awful as those episodes of distrust were for me, they must have been even more painful and scary from the other side.

Fortunately we didn't have to live with this very long. It passed in a few months, but those are notorious months in my memory. Knowing that it was the disease helped. Trying to imagine his view helped. But nothing helped very much. If it were to enter our lives again, I think I could handle it better now, but I wouldn't put much money on the wager!

So I can't really offer you any how-to advice, Terri, but I do offer you hugs and the assurances that you are not alone and most definitely that this is not your fault.

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


Thu Jun 14, 2012 11:43 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Hi from Victorville, CA
Actually, now that I think about it, we have had a number of those kinds of things, too. But they have been relatively mild---similar to what you describe so well, Jeanne, as the subtle mistrust episodes. Your perspective helps clarify what may be happening to them while we wrestle with the impact on us. It is helpful to read that.

I can remember leaving the room when his anger comes out of nowhere to give John space. Often when I come back a while later, he is better or I may smile at him or give him a little kiss on the cheek and tell him I love him and he melts back into the more mellow John. A couple of times he has threatened divorce out of nowhere. Those times I have responded more directly and harshly, saying something to the effect that I did not think that would work out well for him and I have no intention of being a victim if he wants that kind of fight. For some reason that stronger response helped him calm down as well. I fly by the seat of my pants and do what seems most likely to work, I guess.

Wonder what made Coy stop doing his mistrust thing? Wonder why it comes and goes? Wonder what in the world you do if it comes and does not go away? Are there meds that help with this?

These kinds of things and the thought of John being in pain, not being able to speak to tell me where and what it feels like so I can help him, are two things that haunt me about the future. But then, I make myself come back to the present and live in the REAL that is now.

Terri, you are going to be okay. Your posts show that you are working your way through this one step at a time. That is an important key, I think. One step at a time.

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]


Thu Jun 14, 2012 8:01 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Hi from Victorville, CA
You guys are spot on. Just what I needed to hear. Thanks so much, and God bless!

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


Fri Jun 15, 2012 6:28 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hi from Victorville, CA
Julianne and so many others bring out really important issues that much of the legal issues should be handled early on, I have not read Pat's book yet but I do hope there is something in there that brings this to the new caregivers attention when dealing with LBD and the like. and this isn't a sposal /child caregiver difference I think Robin mentioned it is part of LBD and please remember that all states have different rules .

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Irene Selak


Sun Jun 17, 2012 1:38 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Hi from Victorville, CA
If I want to post updates, comments, new concerns, is this where I would do it, or do I need to create a new topic somewhere else?

Thanks,
Terri

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


Wed Aug 22, 2012 9:41 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Hi from Victorville, CA
Hi all....yes, where should we post, or should we start a new topic, because like you, I or should I say my husband Norris, seems to be in the same place.....not trusting sometimes, parinoid sometimes, thinking that we can't afford things or that I have been spending all of our money....thankfully he can be talked out of it and he doesn't get beligerent. I think this is a topic that needs to stand alone. Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Wed Aug 22, 2012 10:04 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hi from Victorville, CA
It would be best to post to area's that best fit question or comment, such as a question about behavior go to that sub catagory and either look for similar area to post in or start new subject. After a while people stop looking at the welcome areas so it is best for information and help or support to move onto the other area's !

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Irene Selak


Wed Aug 22, 2012 8:46 pm
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