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 guardianship 
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: guardianship
Does anyone know if there are things one can do about the phone? I know that I could block or send to voice mail her calls to my cell, but she calls me (and lots of other people - including doctor's offices) on her land line. I am okay with her calling ME if she needs to, but calling doctor's offices and telling them that the ALF is abusing her or that her kids have locked her up and are stealing her money causes problems. She is not being abused by anyone and her money is safely being cared for by her Investment Company. The ALF told us that if she does this again, because it initiates a mandatory police investigation of the facility, they will ask her to leave. I was just curious if others have had these problems and if they have figured out better ways to handle the phone.

Liz


Tue Apr 24, 2012 2:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: guardianship
Why does she have to have a phone?

_________________
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 Apr 24, 2012 3:02 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: guardianship
Liz and Pat,

We must have been posting at pretty much the same time. My post, just before yours, speaks to these same things.

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]


Tue Apr 24, 2012 3:26 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: guardianship
One more suggestion, Liz. Remove the land line and get a simple cell phone (you have to ask for these, they aren't in the cell providers' showrooms, but they have them). Then use the parental controls to restrict her ability to dial certain numbers. If she were calling a private number, the person at that number could block calls from her number. But I'm not sure that emergency protocols will allow a medical office to do that.

Be warned, though. The phone issue soon comes to the point at which they are dialing any number that their fingers find - wrong numbers all the time.

Late

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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]


Tue Apr 24, 2012 3:32 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: guardianship
Liz, here is what I did. I bought a phone with four large speed dial buttons that have covers and you can put small (1'x1-1/2") photos (or I suppose names on slips of paper) under the buttons. It also has a key pad, but that has a cover. I found this phone at http://www.alzstore.com, which gives terrific service. (They call it the four button memory picture phone.)

Once it was programmed on the key pad, I superglued down the cover so the key pad could not be accessed (except by prying loose the cover, so I didn't use a lot of superglue). (CAUTION--unplugging it deprogrammed it, so do this where the phone is going to be located and then don't unplug it.)

I programmed one button with my sister's number and the other with mine, put our photos on the buttons, and left the other two buttons blank and unprogrammed. Now my mother can call just my sister and me.

Then my sister and I programmed my mother's number on our cells with a distinctive ring, so we know without looking that she is calling. We don't block her calls but let them go to voice mail when we don't want to or cannot answer. It is a pretty simple solution that is working well.

BTW, I don't know about other people's LOs, but mine would never be able to handle even a simple cell phone. She is old and is used to a land line phone. We tried it earlier and she never used it. Now that her dementia has progressed, I cannot imagine her managing it.

Hope this helps,

Julianne


Tue Apr 24, 2012 5:22 pm
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Joined: Fri Apr 06, 2012 10:13 pm
Posts: 17
Post Re: guardianship
Julianne,

Thanks for the suggestion about the phone. We are currently having phone issues with my mom as well. In my mom's case, she has completely forgotten how to dial the phone at all, as well as forgotten everyone's phone numbers. What we've suggested to her is to find someone in the ALF and ask them to help her call her (daughter, son, sister, etc) if she wants to talk to someone. It works sporadically. My brother thinks if we get a landline in her room, she will at least know to answer it when it rings, but I'm not so sure.

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Melissa, caring long distance for her mom (70) diagnosed with LBD in 2011, symptoms arrived with a bang in 2012, currently living in memory care facility.


Tue Apr 24, 2012 5:50 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: guardianship
Melissa,

My mother cannot remember phone numbers or even how to dial, either. But even when she is at her most confused, she answers her phone. I guess after so many years of answering phones, that response is pretty ingrained.

If it's not too expensive to start up the land line for your mother, it might be worth a try.

Julianne


Tue Apr 24, 2012 6:01 pm
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: guardianship
We do not have a phone in the room, but mom has learned how to go from nurse station to the front desk to the secretary's office. Smart woman, she is. Then, she notices when no one is watching and dials the phone. We are in a wonderful facility, but even they smile at the things she has done. You have to laugh. If you don't, then it becomes unbearable. The iPhone has this wonderful feature where if I click the power button twice, the call goes to voice mail automatically. The problem is that when the nurse at the Assisted Living calls me then I have to call him back because all calls are going to voice mail.

Still, it has given me some peace and time with family when I needed 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


Tue Apr 24, 2012 11:03 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: guardianship
Julianne,

I wish i still had the cell phone we has for Mom but that was a few years ago. Its not like the standard cell phone offered to the general public. If it even has a dialpad, that is very simply designed. There are even some that have only a few buttons preprogrammed to specific numbers - usually 911(required) and your LO's ICE (in case of emergency) numbers. You won't see these on display. The are considered accessibility or disability equipment and you have to ask for this type of equipment. The first time we asked for one, no one in the store had even heard of these. We went to a larger store and one rep knew what we were looking for and found one. You might even be able to find them through medical equipment stores.

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 11:35 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: guardianship
I just found 2 models (plus the Jitterbug) on Amazon. 8)

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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


Wed Apr 25, 2012 12:27 am
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: guardianship
Just wanted to give you an update. Mom had the interdisciplinary testing a week ago, but I still do not have the results. I think she knows she did not do as well as she thought. She later found the papers delivered by the sheriff and understood she could get a lawyer to stop the process. Supposedly, she called one last week and has a court date this week to get her and my dad out of Assisted Living. My aunt called me to tell me this. How she was able to call her I have no idea. She has no phone and cannot make a long distance call without a code from the AL. i guess someone allowed her to use their cell phone. I have no idea.
I know that my lawyer would have let me know if this was really true. I just do not know what to think.

We are now to the point where she is getting dad to scream at me when I go to visit. I am so exhausted from all of this. i have cried and cried, but there seems to be no relief. Last Monday, dad needed a tooth pulled. Mom's interim guardian refused to allow her to leave the AL with dad because I could never have gotten her back inside. Apparently, she called the Interim Guardian and said lots of things that were not rational. When I spoke with the Interim Guardian later, she told me that I needed to move dad to a memory unit right away and get him away from her to stop some of this. We are on a waiting list. There is no opening right now. My father was so angry. I was genuinely afraid to take him in the car, but as soon as he walked out away from mom, he forgot where he was and got excited about getting a doughnut. Alzheimer's was such a blessing on Monday!

Here in NC, if she truly can get a lawyer to take her case, this will drag on for a much longer time. She believes she can walk out of the AL just by asking her lawyer to stop the guardianship proceedings. It is so strange, her memory is good......sort of......but so twisted with delusional thoughts that she believes those delusions twisted with just enough fact that she fools many she meets. I have no idea what I will do if she is able to leave the AL. She is on NC Assistance and will lose her insurance coverage if she leaves the AL. I have explained that to her, but she is trying to get a ride to Alabama to move to South Alabama. Her Interim Guardian says that I need to withdraw my POA if she decides to walk out and leave dad. I cannot imagine what will happen to her if she does this. She has $200 in the bank and nothing else. My lawyer tells me that if she is declared competent, that I would need to get a court order to keep her out of my house and that I would need to call Social Services immediately. Mom wants nothing to do with me and tells me that she can hardly wait to do to me what she wants and plans to make my life as miserable as possible. She is so angry and aggressive. I asked the psychiatrist to help with this, but his only solution was to increase her Excelon patch. She has had some bad reactions to antipsychotic drugs and they are concerned about trying them.

I am praying we will hear from her testing this week. If she has passed, (the psychologist who did the testing knows nothing about LBD) then it will only be me keeping dad at the AL that might stop her from trying to move back into my house or move to Alabama. I have her driver's license by order of the doctor. The state has pulled dad's so the odds of her really being able to leave are slim. I really think most of this is just Lewy delusion, but then again, I never know when she is "rational" and truly planning to take dad and leave.

Mom has always been difficult and hateful, but Lewy has really turned her into something that I just do not know how I will deal with. I keep telling myself it is the disease, but there are lots of terrible memories that this reminds me of. You would think that after all these years her hateful speech would not cause such pain, but it still does. If this was all Lewy body, it would be easier to deal with, but she has always been hateful and cutting so it makes it really difficult. I keep hoping that things will get better, but now know that this hateful disease will only cause things to grow worse.

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


Sat May 19, 2012 8:11 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: guardianship
k,

I am so sorry to hear that the ordeal continues. At least the interim guardian has had some exposure to your mother's irrational beliefs.

I can relate to dealing someone who has underlying personality issues and now has dementia. What a nightmare, and so sad. I suggest you keep the professionals involved as much as you can so you don't have to manage this awful situation on your own.

Hang in there!

Julianne


Sun May 20, 2012 6:53 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: guardianship
K - I sure hope there are some positive changes with all of this. I have no idea how you have the strength to continue to try to deal with both ill parents. Sending you all good wishes, 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 May 20, 2012 8:33 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: guardianship
K -- my heart goes out to you. I am on another caregiver site that has a lot of members with a narcissistic parent. At least most of us can assure ourselves, "This is Lewy acting. I know that my parent/spouse truly loves me and would not behave this way in his or her right mind." But to care for a parent who was not loving and nurturing and who might be behaving similarly even without dementia is a whole different level of stress. You are doing amazingly well in this difficult situation. I can't remember (like Kate I'm worried about my memory these days) -- are you seeing a therapist for yourself? You certainly deserve some help.

I'd like to quote from the very helpful book, Loving Someone Who Has Dementia, by Pauline Boss. She has some very helpful insights into coping with caregiving and even finding hope in it, but this is her take on exceptional situations:

"Taking care of someone who years before was abusive or neglectful of you is beyond what is expected of you. Caring for a family member who was or is physically or psychologically abusive is dangerous. Feeling as if you want to retaliate is also dangerous. These are justifiable reasons for not being a caregiver."

She goes on to say that in most cases she encourages some kind of continued managment of the parent's care. See to it that the parent has good care and advocate for them, but don't do hands-on caregiving.

I'm just sharing this to point out that you are NOT a failure if you do not personally do everything you think should be done for your mother.

I don't recall anyone talking about this issue of narcissistic or abusive loved ones on this site. While I cannot relate to the situation from personal experience, I want to give you an extra hug or two for that added complication to what is already a challenging journey.

Hang in there! You are doing amazingly well.

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


Sun May 20, 2012 10:41 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: guardianship
K and Julianne - Have either of you looked into borderline personality issues with your loved one? I recently found a support group for daughters of women with borderline personality disorder. I was truly surprised to discover that LOTS of them have loved ones with alzheimers or (likely DLB). I have found a lot of support talking to others who are also providing care giving to mothers who have both dementia and borderline personality disorder. There is even a group on Facebook (although it is a closed group, so you have to ask to join and posts are hidden from others on FBers who aren't members of the group). Anyway - I read your posts today after being off the computer for awhile and it occurred to me while reading them that you might have some of the same issues that I am dealing with as care givers.

Good Luck -

Liz


Wed May 23, 2012 6:05 am
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