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 guardianship 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: guardianship
I'm glad you've made some progress, but it sounds like your mom is still making many stumbling blocks. One of the people who infrequently visits this forum is an atty. Perhaps she may have some info. that would be helpful to you. I'll contact her via email. Lynn

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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.


Fri Mar 16, 2012 4:02 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: guardianship
The neuropsych testing isn't conclusive but some results can be suggestive of LBD.

Can you get any of your mother's MDs to write a letter offering a description of LBD (including delusions)? (I'm sorry but I've forgotten if your mother has an LBD diagnosis.)

And by all means have the MD who said they should be in an ALF write a letter about that.

Can the care coordinator at the ALF write a letter about your mother?


Fri Mar 16, 2012 4:38 pm
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: guardianship
Wanted to give you an update. Two and a half weeks ago mom had a major blow up when I came. I know now that I really need a witness in the room with me and I need to only visit with them in a public place. Mom and dad came to the front to tell the Administrator that the Administrator had hurt her feelings. On Thursday of that week, my daughter visited and dad was laying down with a headache complaining that his head felt empty. Poor guy.

A week ago, the nurse placed a wander bracelet on dad and with mom's consent. They spent a long time explaining it to her. She cut it off. The nurse replaced it on his ankle, but now they are calling me regularly and demanding that I take them out of the assisted living. It is terrible.

We took a vacation last week and got away from all this for the first time in 4 years. It was such a blessing, but the phone calls came even during vacation. I know that i must go see them tomorrow and they will refuse to come out into the public area. I'm thinking that I will leave if they refuse or perhaps I can get the administrator to visit with me, although, everyone is out to get mom now. Poor dad. He gets so worked up because he believes mom is normal....as much as he can in the later states of Alzheimers.

I just do not know what to do when they both start yelling at me and telling me how horrible I am. I can only take brief periods. I try to deflect, try changing the subject, bring doughnuts and surprises, talk about the grandchildren, but mom is so deluded that she comes right back to it. Dad forgets, but then as mom becomes agitated so does he.

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Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Sun Apr 22, 2012 7:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: guardianship
Hard as it may be, I'd make few visits (if any) and make them very short, like less than 5 minutes. Perhaps as her disease progresses she may settle down. And it might be best to have a nurse or other 3rd party there when you do see them. What is her status with anti-anxiety meds at this point? 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 Apr 22, 2012 8:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: guardianship
I would enlist the aid of a medical social worker [MSW] to assist you. This sounds like an impossible situation for you to handle alone and the MSW could steer you and them through the legal and placement hurdles that loom before you. You might check your County Agency on Aging for a referral. I'll be rooting for 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.


Sun Apr 22, 2012 8:19 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: guardianship
Can someone from Adult Protective Services be of any assistance?


Mon Apr 23, 2012 12:44 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: guardianship
oh my goodness, you have so much on your plate((()))

we have not gotten to this stage yet.. but it used to be ,that the care facilities recommended the family not be around the first couple of weeks, so they could settle in.. is that still the case...??

i'm with getting some kind of help and letting the professionals step in ... keeping your visits to a minimum... also the idea of some new meds for your mom, is a great idea.. to help relax her.. and then you can possibly step back in, on a limited basis..

i'm so sorry you are having to go thru this and it sounds as tho you are doing everything, plus some, to be there and help .. and you are getting the brunt of the situation..

for your health , for now, could you just deal with the care facility by telephone and let them suggest and handle the situation.. if you are your moms trigger.. maybe stepping away ,might calm the situation... and keep your phones calls with your mom limited , to one a day or every other day.. or not at all ,until she is able to settle a bit??

i know its hard, as you love your mom.. but honestly, there is only so much a person can take .. and in dealing with bi polar daughter.. i have learned that even when you think they are not capable of understanding or listening, you can set boundarys.. for yourself!!

ie: when she starts jumping all over you.. a nice.. "mom , i came to have a nice visit with you and dad today.. but its feels like you are really angry with me, today.. so i'll leave now and come back when its a better day, for us to visit, without arguing..... tell her you love her and off you go... it might take a few times and it will be hard.. but it does work... that might not be the best sentence, but hopefully you get the idea.. also have you considered getting some counseling to help you thru this time.. its helped me considerably.. if nothing else a place to vent.. and also seeing thing thru others eyes..is so helpful...

i hope i havent overstepped by bounds...just hoping to offer some suggestions that might give you some different ideas...

wishing you luck and strength..
cindi

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Apr 23, 2012 12:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: guardianship
When my dad was in one of his rages and either I or my sister became the targets when we were visiting, I'd do what Cindi suggested saying. Surprisingly, my dad was able to understand a little and change his behavior a little. Since I had noticed that his ability to empathize had seemd to practically go totally away at least a year earlier, I wasn't sure that a calm statement like "I can see you're angry with me so I'll be leaving and coming back...." would register. But most of the time it did and he'd apologize to me. Then I felt really awful because he'd look like he was going to cry and he was just in such an awful state of health... Anyway, I had to try to not feel guilty for setting my boundaries, but in the long run I felt a lot better when I did set boundaries in as gentle a way as I could.
It's tough, but you really do need to know what your limits are and keep yourself safe. Compromising your own health will definitely make the situation worse, and you will suffer long term effects if the stress makes you ill.
Big hug, 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.


Mon Apr 23, 2012 1:58 pm
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: guardianship
You have no idea how much you all encourage me. Today has been particularly difficult. My husband and I tried to take a vacation last 1 1/2 weeks, but I had to start clicking their calls to voice mail. It was hard, but I desperately needed a break. The calls started again yesterday, but I am sick and can't talk at the moment. Mom has called the bank again and the Interim Guardian now refuses to allow us to take her anywhere. The Assisted Living says her paranoia is much worse. We are switching mom's drug plan to line up with the North Carolina assistance program and they will no longer pay for her alprazolam. The facility has a call in to the Psych folks to see what drug they recommend to replace it. I spent 30 minutes reading about the various possibilities. They are recommending geodon. I haven't really seen that mentioned on the forum, but they are thinking it might help with the paranoia. She continues to cut off Dad's wander guard and just cannot understand why he needs it. At least, now, they are seeing what I have been dealing with at home. What a terrible disease.

We are trying to limit our visits, but obviously haven't been in two weeks due to vacation and this upper respiratory thing. They've told mom, but she is either forgetting or it is just making her angrier. i don't know. I'm hoping I'll be well enough to go by Wednesday or Thursday. Wish I could hug each one of you. What a blessing you have been!

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Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Mon Apr 23, 2012 4:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: guardianship
BTW, alprazolam is not usually a good choice for Lewys.

_________________
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 Apr 23, 2012 5:25 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: guardianship
Why does your mother have anything sharp enough to cut his wander bracelet? Can't someone take the scissors (or whatever she is using) away from her? Seems like anyone as paranoid as she is should not have access to sharp objects.

Also, it seems that she could be a danger to your dad if she doesn't understand and accept the reasons for the bracelet and leave it on him. Does the interim guardian know about this--and your attorney, assuming you have one?

Cindi, Lynn and others have given you some great suggestions so I won't repeat them, but please do see if the SW can get involved. Medication adjustments may help but usually they take time. This is just too much for you to manage on your own. Please look after yourself, too.

We've all been through rough times with our LOs so everyone understands. Hang in there!

Julianne


Mon Apr 23, 2012 5:29 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: guardianship
Delusions are notoriously hard to treat in LBD. Most neurologists would first back off someone's dosage of dopaminergic therapy, and eliminate any anticholinergics. Then, they might introduce an AChEI (Aricept, Exelon, Razadyne). Last, they would try an atypical antipsychotic -- Seroquel (quetiapine) or Clozaril (clozapine) would be the first choices, not Geodon.

One approach is described quite well in chapter 5 of NPF's "Mind, Mood, and Memory" booklet (parkinson.org).


Mon Apr 23, 2012 5:39 pm
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: guardianship
The reason for the alprazolam is that she does not sleep without it and the "people" show up. I have asked about seroquel or clozarel. Wonder why the doctor has chosen geodon....another question for tomorrow. Hope my voice will do more than croak tomorrow!

As for the scissors, I think she got them during the craft they were doing. I saw some in her room, but they "disappeared." Have no idea where she got the scissors. The same place she got the aspirin, I think. I think she hid them in her pocket when we took her in.

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Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Mon Apr 23, 2012 6:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: guardianship
Sounds like unless and until some med. helps with your mom's worst symptoms you are going to be the brunt of her anger. You truly do need a break from all this so my advice is to go as little as you can for a while and either don't accept phone calls or reduce the no. of times you answer. I had to do the latter with my dad after he called my husband and me at a party 27 times in about 90 min. about his TV remote "emergency". You must take care of you and the rest will fall into place. 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.


Mon Apr 23, 2012 6:43 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: guardianship
k,

Check with your phone service provider (I assume she's calling your cell?). There is usually some feature that will allow you to set up special call handling for calls from your mom's number. I'm not talking about blocking the call, but maybe sending calls from her number directly to voice mail. Then, you can give her a call at a regular time each day saying you are returning her call or just checking to see how they are.

I love my cell phone, but sometimes they are a bit too convenient. It's OK to leave it off or to "forget" it when you need a break. Phone calls weren't a problem for us because Mom couldn't talk. But I remember my grandmother calling everyone she knew, even long distance, asking them to come "rescue" her. She called Mom and my aunt several times a day to complain. After a while, Mom had the phone removed so that she had to use the nurses' phone. Residents are usually sharply limited to the number of times each day they can use that phone.

Imagine if a child in daycare or kindergarten had a phone and could call Mommy and Daddy whenever he wanted to insist they come and get him out of such a "terrible" place as kindergarten. Sounds ridiculous, doesn't it? Remember that your Mom has, in Lewy's sporatic way, become an adolescent or a child. Doesn't her behavior sound a lot like a kid who hates camp or school? An acting out teenager often loses her phone privileges. Just a thought.

Is her phone service directly from the phone company or is it through the AL facility? If through the AL, so much the better. In that case, they should have the ability to restrict her service.

It's sounding like there isn't much you can do to help your mom cope with her situation until she actually wants to cope with it. And, though it sounds rough, your dad (in a more cognitive state) chose to marry your mom and to share whatever came with her. It's hard to picture what "sickness and in health" really means until you get to "sickness and health." But that's marriage. It may be time to accept that they are as they are and that you have done your best for them, whether they know it or not. Don't limit your love for them, but you can limit their access to you. It's OK. Do it. You have a right and an obligation to take care of yourself.

Sending you hugs.

Kate

_________________
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]


Tue Apr 24, 2012 12:57 pm
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