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 guardianship 
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post guardianship
Placed both parents in Assisted Living 1 1/2 weeks ago. Dad has Advanced AD and mom has LBD. Mom still functions on a high level, but has dementia. She scored 20 out of 30 on the Montreal Cognitive Assessment. Neurologist says that reasoning and judgment are poor. I placed both of them using my Power of Attorney. I have no siblings.

Now, however, mom is trying to get a ride to the bank and withdraw all of their funds, remove me from the bank account and take dad away to an apartment without their medicine so they can be alone. The catalyst was the notification from Social Security that they could protest me handling their Social Security funds. I had told her this was coming and she was thankful at the time that I was going to help her. She actually chose to go into Assisted Living. Lewy has shown up now and is taking over.

She has dad so upset and the Assisted Living is concerned about flight risk. There is only one bed left in the secure memory unit. It would have to be mom who is moved into the memory unit. All of her doctors, Assisted Living and my lawyer says that I must file for guardianship. Apparently, here in NC, she can have me removed as Power of Attorney. The lawyer has told me that without guardianship, I may not be able to keep them in Assisted Living. I have secured all of their medical records and filled out the paper work, but am just sick inside. Mom will never understand and poor dad just keeps saying, I just don't understand. Why can't we come home.

They have lived with me for the last 3 years, but in May of last year mom had a decline and has not recovered. The doctors (5 of them, 2 social workers and an occupational therapist) have told me that I must have someone with them at all times. Mom fired the care givers and refused to allow anyone else to help. I explained to her (I know, no reasoning, only emotion, but just had to try) that I could get charged with neglect if anything happened to them while I was gone. She said, "Oh well, I won't let anyone into the house." I could not find an agency that would come into the situation. Dad was screaming and on and on. So, my choice was Assisted Living.

At this point, the Assisted Living has suggested that I stay away and try help from the counselor-psychiatrist. Hopefully, that will start right away. The neurologist and Assisted Living have asked me to file for guardianship right away. She is going to be so angry when the papers are served and dad will be so frightened. With them together in the same room and mom feeding him her delusional ideas, I just cannot imagine what is about to happen.

Have any of you been through this? Do you have any advice for me? I have spoken with the neurologist who does not want to change any medication for fear that it will only make things worse. Is there any way that any of you have dealt with behavior of this type that might help me in some way?

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


Thu Mar 01, 2012 8:45 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: guardianship
Dear K, my heart is breaking for you. What a nightmare - you have an awful lot to handle by yourself. But it sounds like you have been given good advice about filing for guardianship. Make sure you have a good lawyer who is very knowledgeable about eldercare law. And, bringing in any medical professionals who can help support what you are doing sounds very wise.
I hope you have a good support system - friends, family and a local dementia support group, who can give you moral support (and maybe sound advice too!) during such a stressful time. I cannot imagine dealing with 2 parents with dementia at the same time! One of my aunts and a few cousins were a great deal of support to me when I was going through such trying times with my dad in addition to my local support group and this forum.
I know it sounds like an impossibility, but try not to take your mom's comments and actions personally. She is seriously ill and is not able to think and act like a rational human being. You are having to deal with the results, which is difficult, but if you can separate your emotions from the task you have to do it may make it less stressful for you. Good luck and let us know how things go. 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.


Thu Mar 01, 2012 9:01 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: guardianship
We've had a couple of local support group members file for conservatorship (the term used in California). I think they both spent about $20K but were so relieved when conservatorship was granted. They had documentation from MDs and statements from family friends and neighbors.


Thu Mar 01, 2012 1:19 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: guardianship
Absolutely, guardianship is needed. As it is sanctioned by the court, it would take court action to revoke it. POA takes no more, in most states, than a signature and a witness. There have been stories about unscrupulous people going into nursing homes, etc., and taking advantage of patients in this way. Once they have a document giving them POA, they can clean out your parents bank accounts. Know also, that an "interested person" can challenge even guardianship. But in the case of guardianship, they would have to go to court, which makes that a lot harder. Your mom sounds ripe for the picking.

I know that some facilities and doctors advise staying away from your loved one(s) for a bit. We didn't do that, but instead were at the NH daily. I don't really believe that staying away helps. It may just feed your mom's anger. You know your parents better than the facility or their doctor and you have to make this decision yourself. Even if it presents challenges for the facility and they keep discouraging you, you should do what is right for you. If it doesn't turn out well, you can try it their way. There is no one way to deal with dementia or placing someone in AL or a NH. Using a standard approach that the facility thinks will work may not take into account your own family dynamics. It's hard to stand up to the professionals, but in the end this is your decision and what you feel, in your gut, is probably the right thing for your family.

I'm going to recommend a book for you: Caregivers: Drowning in a Sea of Cognitive Challenges, Delaune Pollard (Author, Illustrator), Stephen Brooks (Editor) . In about the middle of the book, the author equates the stages our loved ones are going through to the ages of children. Dementia is about cognitive regression. Cognitively and emotionally, our loved ones regress to earlier ages. They may look older, but that's not always where their minds are. You become the parent. Think of your mom as a 13 year old girl, a lot of whom are flying off at the handle, threatening to run away, threatening to take whatever they think is theirs, etc. That may help you find a different way to relate to her and also help you accept her behavior. If what she is threatening puts her, or your dad, or their security in danger, you should take whatever parental action you believe is necessary to protect them, including legal guardianship.

We all make a lot of mistakes dealing with our loved ones in this situation. The important thing is to do what you think is right and, if it doesn't work out, be willing to make changes. But know that, because the way things affect your parents matters to you more than to anyone else, you are going to make the more personal and caring decisions. No one else can do that. Recognize that what you do, you do from love. In the end, that's what matters.

I hope you have a support system. The occasional hug from someone - anyone - makes a world of difference. In my case, I was very open about the whole thing with people at work, and found out that many co-workers were going through the same thing. We came to lean on each other. And, in my case (you need to gauge your own workplace yourself), supervisors all the way up the ladder gave me a lot of support.

Keep writing, keep sharing. This is a real lifeline. And keep your sense of humor. Smiling about some of the quirky things is so much better than becoming frustrated by them.

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 01, 2012 2:22 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: guardianship
Oh, and use your parent's money for the legal costs - not your own. Use your parents' money for all of their expenses. This is a lesson I've learned the hard way.

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 01, 2012 2:30 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: guardianship
[quote][/quote]We all make a lot of mistakes dealing with our loved ones in this situation. The important thing is to do what you think is right and, if it doesn't work out, be willing to make changes. But know that, because the way things affect your parents matters to you more than to anyone else, you are going to make the more personal and caring decisions. No one else can do that. Recognize that what you do, you do from love. In the end, that's what matters.

Wow, so very well said, Kate.
Best of luck with your difficult journey, Ksparks. Please come here often for suuport,
Ger xx

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


Thu Mar 01, 2012 5:39 pm
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: guardianship
Thanks so much for your support. This has been a rough day, but we'll get through it. Mom is so desperate that she even called me to come and take her to the bank today. Thankfully, I had a doctor's appointment and could use that as an honest excuse.

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


Thu Mar 01, 2012 7:56 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: guardianship
Talk with the AL and the bank. Many ALs and NHs will set up small accounts at their facility that the residents can deposit and withdraw from. See if something like that might give your mom a feeling of some control. Or talk with the bank about setting withdrawal limits or even setting up a separate account for her with a small balance. Something like they might set up for a teenager. If your mom is like mine, being able to be in charge of her finances - even if you know it is just a small part of them - may be what she needs for her sense of self worth. My mom asked for her bank statements right up to the end. I was so relieved when she no longer had a concept of what she was reading really meant. Go after guardianship aggressively but in the interim one of these ideas might help your mom.

Just suggestions.

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 01, 2012 11:47 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: guardianship
Ksparks,

I'm concerned about you. How are things going? Did you file for guardianship?

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]


Wed Mar 07, 2012 4:21 pm
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: guardianship
This has been an insane week.....requesting medical records. Took my dad to the dentist and he started having chest pains from being afraid.

Today was the first hearing. An interim guardian was appointed and we have another court date next week.

I am having the hardest time functioning. I have to admit that the stress has really gotten to me. It is so hard to walk over into their part of the house and even harder to go and see my mom crying. She thinks she is normal and has no dementia and cannot understand why she is in Assisted Living.

The first thing the interim guardian did was instruct the assisted living that they could not leave. She was going to lock down the bank funds. I am praying that a decision will be made next week. Mom and Dad did not want to go to the hearing so hopefully, this will be a simple process.

Thanks for checking on me. My blood pressure has come down, but I have started medication. I'm hoping things will be better when this is over, but I know we move from one challenge to another with this terrible disease. The blessing was that the Clerk of Court had even heard of Lewy Body. So many people that I meet have never even heard of it.

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


Wed Mar 07, 2012 10:30 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: guardianship
Thinking of you at this oh so difficult time. Stay strong, you are doing a wonderful job,
Ger xx

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


Thu Mar 08, 2012 4:37 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: guardianship
It sounds like the courts are going to do what they can to help you through this. Lean on them and learn what you can from the interim guardian. I'm sure there's a wealth of knowledge there.

Now, about you. You need to deal with this stress. I read once that caregiving can take up to 7 years off someone's life. I know it can take over the life you have now. Here's another lesson I learned:

I reached a point at which I couldn't remember anything. I'd start something and forget what I was doing. I'd go to meetings and totally zone out. I'd sit at my desk not remembering some important things that I needed to get done, nor how to do them. I started having trouble speaking - finding the words I wanted to say. I'd get dizzy and had trouble with balance. I'd blank out occasionally. And the essential tremor that I was going to get eventually anyway started with some very noticeable shaking. In short, I was very worried that I was in early LBD myself. Finally, I got medical help and things are getting better. I started seeing a mental health counselor every 4 to 6 weeks (more often at the start) and a psychiatrist, which has helped relieve the stress. For the physical concerns, I met with a neurologist (a whole team of them as time went on) and a neuropsychiatrist. Aside from some hereditary neuro issues, I found out that I wasn't getting enough rest - even when I thought I was sleeping well. Between stress and some mild apnea, I didn't sleep well at all. That explained most of the physical symptoms. I'm working now on changes that allow me to sleep better and also take Nuvigil, which helps with alertness at work. Before I got help, I really believe I was in danger of losing my job.

The point I'm after is that you need to take care of you in order to be of help to your family. Your parents, I imagine, would be devastated if worry over them or their care made you sick, endangered your livelihood or put your own safety in jeopardy (I'd started nodding off while driving). When you think of caring for yourself and hesitate, think about what your parents would have told you ten or fifteen years ago, when they were aware of your needs as well as their own.

Though you know best how things will affect your parents, start trusting the people around you - the professionals, friends, staff at the AL - to care for your parents when you can't. Especially, don't hold yourself responsible for everything. Things happen. Even with direction to keep your parents within the facility, your mom might cleverly find a way out. Stop worrying about it. I used to watch my mom's every breath, like a new parent would watch a baby's. When she got a cold, I'd want to make her better every time. Then I started to think about her life as it was now. And realized that, even if the worst happened, it wouldn't be as bad as where Lewy was taking her. It took a while to get my mind and heart around it. But when they came around, I found myself able to pray that when she got pneumonia a few weeks ago, it would take her. Which it did, quickly and quietly.

Once Lewy and/or Alzheimer's make themselves obvious, it is a constant battle between physical health and quality of life. It's hard to take, but it comes down to whether you want to keep them safe and healthy or let them take chances that might do them harm or even end their lives before dementia makes their lives unlivable. That sounds harsh. It's OK if you disagree with me. You have to come to this yourself. You can't force your own mind to this place. But this helped both me and Mom in this last year. I learned to let Mom do things she wanted to do and enjoy as much of her last year as she could. And I started to ease up on myself. I still haven't gotten that right. There are a lot of issues to deal with after your LO passes, too. So I'm still working on it.

Keep writing. You are having to take measures that a lot of us never came to and we are concerned about you. If we could, we'd all descend on you with one giant group hug. Don't forget that you are every bit as important as your parents are and you need to take care of yourself.

Thinking of you...

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]


Thu Mar 08, 2012 10:26 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: guardianship
Wow - K your expriences are so much like mine. I am learning a lot reading your posts and Kate's replies. I hope that you are surviving. I feel grateful that I can share this awful experience with my husband and my sister. I worry about getting this disease and being as awful to my own children someday.

I totally see my mother in your mother - the threats to leave assisted living and to get her money out so that she can buy herself a house, the belief that she is not having problems (it is as if she has multiple personality disorder), the constant problems with Assisted Living (she accuses them of tons of stuff and because they don't understand DLB really, they think that her behavior problems are fabricated to get attention), the fear of taking guardianship because she will be so angry (and sometimes she really seems lucid, even when she is in her paranoid state - she told the person who we hired to help her with meditation and pain control that we were keeping her locked up in Assisted Living against her will - sigh, makes me feel so awful, as if I have failed her or done something wrong).

It is good to see how much of this is the disease and not our individual mothers. It really does help to share. I don't know when the guardianship issue will become inevitable for us, but right now we are trying to keep her calm (she would just go nuts if she thought we were trying to get guardianship - my sister talked to my mother's psychiatrist about him signing off on it once and he talked to my mother about it and she then went nuts and threatened to take POA away from us - very helpful of him - sigh).

Laying low on this issue right now. Wondering if putting her money in a trust fund would be the right solution. I just don't know. I think that Kate's comment about dementia as a regression is really smart. I see my mother oscilating between an emotional 4 year old and a defiant 16 year old. Very apt illustration. I am definately going to buy the book that Kate recommended. I might even get my sister a copy too. I wish that my sister would register for this list. I think your posts would help her too.

Good luck and keep us all posted. Liz


Thu Mar 08, 2012 12:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: guardianship
Yes, taking care of YOU is of paramount importance. It does no good for you to get so stressed that you have a permanent health issue. I hope the guardianship thing is settled asap, and then maybe you need to take yourself away on at least a mini-vacation. Keep us posted. Giant hugs, 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 Mar 14, 2012 9:39 am
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: guardianship
So, yesterday was the court hearing. I was given full guardianship of my dad, but the lawyer believed that my mother was fine. She related what mom said to her and it was total delusion. My daughters went with me and explained what the real story was. Mom's guardian ad litem then ordered multidisciplinary testing.

Mom's anger is directed at me. She told the guardian ad litem that I forced them to be in the assisted living and that I told them they would be there until they died. The true story is that the neurologist insisted on the Assisted Living and I told them they would be there for a month. Mom told dad they would be there forever. The judge wants my lawyer to call my mom to court and put her on the stand for cross examination. My daughters will testify and so will I. Mom in her delusional state, was very convincing that I was horrible and stealing their money.

Is there anything I should be doing? I was just going to drop the incompetency against my mom since I had it for my Dad. The money is all in Dad's name so it should be protected. I can keep him in the Assisted Living with the competency orders from the judge, but I'm not sure that the Assisted Living is going to continue to allow my parents to live in the same room because of how mom keeps him stirred up with her delusions. At that point, if I do not have the power to keep her there, she is free to leave. I really want to care for her and know that this is not really mom, but am so upset by all of this.

We live in a very rural county and the guardian ad litem said that it was hard to get anyone to come for this testing. They have one other person who has been waiting for some time and now that there are two of them, they might be able to get him to come. I tried to ask what the mental testing would be like? Does the one who is doing the testing know anything about Lewy Body and they just said this is what we have to do. Should I be requesting something in particular? What should I do?

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


Fri Mar 16, 2012 3:27 pm
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