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 Special Girl- retardation/LBD 
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Joined: Sat Jan 17, 2009 1:27 pm
Posts: 29
Location: Maryland
Post Special Girl- retardation/LBD
Hi. New to this web but not new to research. I have read most of the postings and I am afraid there is no one out there that can help. My older sister(59) born retarded, has inoperable brain tumor - surgery done 3 yrs ago could not remove, Dx with LBD at Hopkins in Aug along w/ complex partial seisures & Parkinson.Many more issues -too many to go into. Dr.'s in general do not treat the retarded for anything because they are retarded. Hosp psych ward kicked her out after 48 hours because nothing was wrong, halllucinations OK for retarded but gave her Abilify for her aggression. We thought she was capable of killing my 84 yr mom whom she lives with.Abilify (later we found out)is never to be given to LBD patient.Day care will not take her, Nursing homes do not want her,$ issues, she is a complicated patient.My mother is in TOTAL denial and an obstructionist.Have Advance Directive in place because "she is her own person" according to hosp - she is mentally about 10.I have looked every avenue and there is nothing but alot of passing the buck and have you tried these people. Social workers are pond scum in my opinion.I know I sound bitter- just burned out, but I will not give up hope of finding something, someone, somewhere that can help us just a little. Has anyone had any/all these issues? Her Dr at Hopkins is wonderful by the way.PS I have never done something like this before but Thanks for listening.

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59 yr old retarded sis, inoperable brain tumor,complex partial seizures,now LBD w Park. Anyone similar out there?


Mon Jan 19, 2009 12:37 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Tricia,

Welcome. Sorry we have to meet this way but glad you have come to the right site for information and support.
Your story is far beyond my realm but I am sure Robin, Irene and some others will be able to offer some suggestions. Sounds as though you have really investigated many options. I found it sad that just because one is retarded they blow these things off...same thing happens a lot to the elderly..."its your age." That really burns me. Stay strong.

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Dianne C.


Mon Jan 19, 2009 12:54 am
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Joined: Sat Jan 17, 2009 1:27 pm
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Location: Maryland
Post Special Girl- retardation/LBD
Thanks for reply and encouragement. Funny you should mention age, another obstical her being "too young" for alot of organizations to pay any attention. Again its being retarded that people cannot see past. It was only in the 90's that the medical field discovered that the retarded can have dual diagnosis - such as retardation and depression (which she has) or any other common diagnosis that a normal person can suffer from. Unbelievable. Thanks again
Tricia

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59 yr old retarded sis, inoperable brain tumor,complex partial seizures,now LBD w Park. Anyone similar out there?


Mon Jan 19, 2009 1:02 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Tricia,

I'm sorry but I don't know anyone in the same situation as your sister. It must be very exhausting for the family to be fighting for your sister's care time and time again.

Actually, many people with LBD can handle atypical antipsychotics. A few can handle Abilify. Most LBDers use Seroquel. Another one with a good reputation is Clozaril.

Typically, hallucinations aren't treated unless they are frightening for the LBDer or an insurmountable issue for the caregiver.

Who is your sister's MD at Johns Hopkins? Is there anyone affiliated with Johns Hopkins who can help try to get your sister placed? What will happen after your mother dies? She's, of course, no spring chicken.

Is your sister on Medicaid?

Can a pro bono attorney help? Is there a national support organization for the mentally disabled who can offer some advice?

Good luck,
Robin


Mon Jan 19, 2009 1:45 am
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Joined: Sat Jan 17, 2009 1:27 pm
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Location: Maryland
Post Special Girl- retardation/LBD
Thank you for caring enough to reply. New voices are so refreshing. We took sis to Er at Sub. Hosp because of her gory hallucinations. ALot of killing, blood, she is very religous, but confused and now misinturprets the bible to suit her needs, and the combination is very dangerous. Such as Saten(whom she has had conversations with) could tell her to kill my mother.Who knows.The hosp believed sis over the 3 of us and thought Mom was abusing sis when in actuality it was the opposite. No one would listen to us because it was psych and she is "her own person who can speak for herself" They were awful. Refused to do any tests or even look at her recent MRI. She was bowel incontinent w. diarreah and we were worried she was dehydrated causing the halluc.( she is now totally incontinent) When I asked her if she had taken her meds she said the bad people stole them. Who are the bad people? The witches who moved into the house behind us where the man kiiled his wife and committed suicied - which she visually saw. They tripled drugged her after admitting her with so many downers its not funny even gave her a laxative when she had diareah for 6 days straight. She was left in her dirty diapers and when we went to visit she got hostil and started to kick mom, I ran to front desk and said help and they looked at me and turned away. Unbelievable. We called our "Special Needs Lawyer" to help us when they said that eve they would send her home nothing wrong w/ her. The Social Worker was pissed we had called the lawyer, our calls were ignored by the staff and they refused to listen to us about her past because we didnt have POA. WHY is a social worker running the psych ward over the Dr.s???"Nothing wrong w/ hallucinations", kids believe in Santa whats the difference with sis? We called Adult protective services, they said unless we were willing to let them put her on the street there was nothing we could do but go and get her. We did. However the Dr finally prescribed Abilify saying we had cause for concern and even made her take the first dose BEFORE we left hosp. But NOTHING was wrong with her!!! We only qualified for a paid S.W. and she was worthless as well.Hospitals will not even take her because she is retarded and cannot be diagnosed without a baseline however they refuse to talk with family about her baseline due to confidentiality. They even gave her a quit smoking patch, she never smoked!!!!We should sue, gosh knows we have enough evidence. Anyway I babble, The only person at Hopkins when we finally got her accepted (no great feat-they could not understand why we were there)only the residents would look at her. We took her to Hopkins because it is a learning institute and our only hope. Dr. THomas was sincere and caring. They did every test imaginable. She was diag w/ the seiz when we left and placed on depakot. Huge dosage nearly killed her. She was on Effexor, Clonozapan and Diomox for balance. They wanted her off the effexor because it causes seisures and should never be given to a retarded person nor one w/ history of seisure or depression. Had them as a child. Her GP should be shot. They passed the buck and refferred us to a Social Worker for placement to assisted living or nursing home. We dont live in Baltimore and SW are usless. As for my mother, shes old, she has many mental issues, such as OCD, paranoia, total DENIAL, sis is not sick, and she can be vebally abusive. Mom will never die, she is afraid of death and to be frank I really believe mom will out live my sister.Carolyn is rapidly going down hill, faster than a normal person would be.Mom even refuses to sign her own will! I can tell you after that hosp visit we had an Advance directive and POA written up immediatly so we can control the Dr's and they HAVE to listen to us. However Hopkins ER refused the papers!!! I have even purchased her entire funeral. The worst thing I have ever done in my life.Mom refuses help for Sis, even canceled the free in home visits from medicare for PT, OT and Voice therpy. We have set up a special needs trust to place her money in so she can become eligle for medicaid. But mom refuses to let her go or even open a book to learn anything.Sis is receiveing disability and is on medicare w/ secondary ins. I am now trying to get her VA benifits because my dad even though alive is a disabled veteran. I have read ( on the VA web site itself)one should hire an expert to get the benifits because it is so complicated and once your turned down for this type of aid thats it. Any extra money would be helpful. I have been looking for small assisted living places up where I live in the country. 24 hour dementia care in Montgomery Co runs an average of 120 grand a year. WHo has that kind of money? They do not have to accept her. Asbury the huge Methodist home in Gaithersburg refused to return our phone calls. Some say she is too young, Day care says they dont take people who are incontinent. We tried several in home care organizations, private because medicare will not pay for her, and even they ignore our calls or say they cant find any one because the all want full time wk we can not afford full time help just 1 or 2 half days a week to help her bathe and keep her company. I dont believe them.After one visit they quit and then they charge us 50 bucks for interviewing a new person. Carolyn is a difficult patient, she is not considered one of the "pretty people" and no one wants to be around her. Its disgusting. ARC has no help nor ideas. I have learned you are on your own in this twisted world we live in. Ok I apologize, I will come down off my soap box. It just gets my goat. Dr. says she will need nursing home within the year. Its been since august and mom still wont do anything. My other sister lives in Kirgastan but was here for 3 months to help when this started. Carolyn does have one odd painfull problem and has had for 10 years, I now believe this is when it all started She calls it a thumping in her head.Drs try to figure it out but nothing. Another problem with the retarded they cant tell you whats wrong. They just say fine and ok all the time. I am amazed our medical society knows nothing about the retarded getting sick. Ok Im done,sorry about that. Theres just soooo much more to our situation than can be explained. I'll stop now, again thank you for your
voice. I really enjoy and despearately need a sounding board. Your company alone is calming to me. thank you.

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59 yr old retarded sis, inoperable brain tumor,complex partial seizures,now LBD w Park. Anyone similar out there?


Mon Jan 19, 2009 8:23 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Tricia,
What a horrible situation you and your family are in, I really don't have any other advice other than what Robin said about contacting a Lawyer. Who cares the SW was ticked that you called a lawyer, was she ticked enough to do anything? Sounds like Not! I do know they only way is to hound the life out of these people who are supposed to be helping, I would call none stop until something gets done!
Good Luck and We are glad that you found us here to use as a sounding board, often there is nothing any of us can do but we can certainly listen and know what you are going through!

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Irene Selak


Mon Jan 19, 2009 9:15 am
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Joined: Mon Jan 05, 2009 4:23 pm
Posts: 21
Location: the Netherlands
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Tricia,

I'm very sorry what you all are going thru, this is beyond your worst nightmare. I do wish you and your family a lot of strength and I hope the situation will improve shortly.

Rgds/Sandra


Mon Jan 19, 2009 12:45 pm
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Joined: Sat Jan 17, 2009 1:27 pm
Posts: 29
Location: Maryland
Post Special Girl- retardation/LBD
It is a sad story I know. Carolyn is such a lamb. She is religous and was involved in CBS an internationally known christian bible study. She learned sign language by herself years ago and used to teach the little children at cbs sign and even used to play her guitar for them. She isnt allowed to be around the children anymore (possible outburst) and mom is embarrassed to take her to the lecture. Carolyn is also a self taught artist. Over the years she has enjoyed painting water color and use of pen and ink. I have many of her pictures framed and hanging in my home. Like so many artist some works are good some not so good. Now when she has a bad LB day her art looks like a 2 year old and is very sad and I know frustrating for her. It was her only enjoyment. She can longer go ouside and feed the birds - balance vertigo. Christmas she got up from the table and could NOT walk to her chair in family room 12 feet away. There seems to be a space issue with the carpet on the hardwood floor. Mom says her walking is worse, her head hangs down and she has tremors -but shes not sick. She was born partially paralized in her throat on the right. This not being able to swallow scares me to death. Mom cancelled the free medicare speech therapist, it was too much for "her" (mom) to handle. Mom does not understand what is going on. She does not believe she is ill. When she started having the hallucinations she did not tell me, it was too embarrassing. Mom cannot deal with mental illness of any kind, yet she suffers from it, alot.She refuses to take Carolyn off the Abilify because she literally is afraid Carolyn will hurt her. Carolyn no longer has the energy to do that anymore.It obviously is making the parkinsons worse(swallowing to come)however it did curb the goriness of her hallucinations. Mom was to call Dr to make appt the first of the year, she has not called and Carolyn is in acute pain in her head at times. I have called and left a message.Carolyn has had balance problems for at least ten years. It is hard to determine if the cause is 1) she was born handicapped or 2) early signs of Parkinsons.The "thumping in head" is ten years old as well. Which over the years and many Dr.'s later led us to find out she had a brain tumor in the inner ear. They did a full craniotomy but could not touch the tumor for fear of paralizing her entire face. I believe this surgery was the the trauma that started or exasserbated the dementia and develope the new seisures. The EEG showed signs of recent brain damage and the seizures are in same location as 1) childhood seisures and 2) tumor location. My question is how long does she really have? We need to know approx in order to find a nursing home (not easy no one wants the retarded), figure out finances, medicaid etc...Has she had LBD for 10 years? Another concern, she wants to die. I have read her bibles and notes, She is ready to go to heaven. They have a halo waiting for her and the Pope will declare a National Saint Carolyns Day (one of her hallucinations - if it wasnt so tragic her stories would be very entertaining). Is it possible for someone to will themselves to die? I just dont want her to suffer anymore, she has suffered all of her life its time for peace. Again Thanks for listening. Did not realize how much I had bottled up and no one to talk to.
Tricia

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59 yr old retarded sis, inoperable brain tumor,complex partial seizures,now LBD w Park. Anyone similar out there?


Mon Jan 19, 2009 1:01 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Tricia,

You asked about what time frame is appropriate to plan for the progressive levels. This is one of the first questions we all have asked when faced with our loved one's diagnosis. Unfortunately there is no one answer since every Lewy body dementia (LBD) patient is unique. Although the areas of the brain affected are similar between patients, the number of cells affected, which determines the progression, varies greatly.

This unknown makes it difficult, if not impossible, to predict what lies ahead. The information available now states the average duration is 5 to 7 years from diagnosis, depending on several factors such as overall health, age, and severity of symptoms. It is possible for the duration to be anywhere from 2 to 20 years. As caregivers, we have all learned that this disease has to be taken day-by-day and we need to expect the unexpected. Planning is sometimes replaced with enjoying whatever bits of quality time we can share with our loved one.

Many LBD patients eventually need a care facility, either assisted living or a nursing home, and caregivers have reported that by researching options and availability in advance, it has provided an easier transition for both the family and their loved one.

I hope this helps!

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Irene Selak


Mon Jan 19, 2009 2:31 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Tricia --

I am so sorry for what you are going through. Have you contacted the regional ARC for advice -- if they blow you off, I would consider contacting national ARC as there is a major issue here, based on your posts, of discriminatory behavior toward your sister because of her retardation. They may go to bat for you to get her the services she needs.

Also, given your sister's advanced state, I think it might be appropriate to call in hospice. She can receive hospice care at home, or could be placed in a hospice facility. She would need her doctor to request it (medicare pays). Hospice is not just a "they only have six months to live" option -- especially with dementia, as well as the brain tumor and retardation, there is NO telling how close (or far) your sister might be from passing, so would probably be eligible. So, I would urge you to consider hospice care.

Lastly, as for the advanced healthcare directive and the durable power of attorney, those are two separate documents. If you did not have these drawn up by an estate planning or elder law professional, I'd consider having your paperwork reviewed again. If all was in order, Hopkins would have had to accept them. It makes me wonder if they were written and executed correctly.

I am not an attorney and nothing in this post is offered or intended as legal advice, counsel, or opinion. That being said, I'm curious whether your sister signed those documents. If she did not, that may be one reason they were refused. In some states (probably most), a person has to be deemed competent to sign such documents. It does not sound like your sister would qualify under that requirement -- another reason that the hospital may have been reticent to accept the documents from you.

It may be that you will need to file for guardianship or conservatorship in order to have the authority you need to take best care of your sister. That, in most states, is a court process.

You should also contact your local Area Agency on Aging -- they usually have emergency services they can offer short-term, can refer you to a specialist attorney (doesn't sound like yours is serving very effectively as an advocate for you or your sister), and can connect you with other county or government agencies that can help you.

Good luck and keep us posted!

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Renata (and Jerome-in-Heaven)


Mon Jan 19, 2009 4:45 pm
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My Mother is on abilify (small dose) it does keep the bad hallucinations away.- nothing else did. You do need to keep as low a dose as possible to avoid problems
Sharon

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syt


Mon Jan 19, 2009 9:20 pm
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Location: SF Bay Area (Northern CA)
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Hi Tricia,

I found someone who has a sister with MSA (multiple system atrophy) and Down's syndrome. I sent her your first post above. Her take on the situation is this:

"It seems that the question with this person's sister is a legal one. If in fact she has only the IQ of a 10 year old she should be under legal guardianship. Her sister could petition the court for that. I have been Chrissie's guardian for 16 years. Unless a person goes to court to obtain guardianship, no matter the IQ, it is true that she is her own person after the age of 18. I hope I have made myself clear. My sister would have died long ago had I not been her guardian and advocate."

I hope this is helpful.

Robin


Wed Jan 21, 2009 12:11 am
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Location: Maryland
Post Special Girl- retardation/LBD
ok, I am having one of those days, I have written 3 replys and a little gremlin out in cyberspace keeps stealing them. I will make this short and sweet and write a tiny bit at a time.
1st - THANK YOU. To raffcons, you will never know how much you have helped my family. I am still curious as to why you thought my sister was at the end stage of lewy and the mere mention of Hospice really threw me for a loop. I too always thought of 6 month/cancer only for Hospice. You opened my eyes, I have taken another clearer look at the last 10 years of Carolyns past and you are right. We were being fooled by the mask of her own handicap. She has had LBD w PD for quite a while. I spoke to her Dr at Hopkins yesterday and fully expected her to poo poo the idea of hospice. I was wrong. She agreed. Again I am still in shock but a calm has come over me. Will write again but thank you so much to everyone. Let me send this before the gremlins get it.
Tricia

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59 yr old retarded sis, inoperable brain tumor,complex partial seizures,now LBD w Park. Anyone similar out there?


Wed Jan 21, 2009 1:40 pm
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Joined: Sat Jan 17, 2009 1:27 pm
Posts: 29
Location: Maryland
Post Special Girl- retardation/LBD
ok, that one worked. 2nd to raffcons. You bet I called my atty about her Advance Directive. Turns out the idiot registrar at Hopkins did not know what it was and was looking for a living will. All her papers are in order and thank goodness we had them done when we did. Not a moment too soon.
To Robin: As for the legal guardianship, I agree with you. How stupid can one be not to have that done before they reach the age of 18 and my father is a lawyer!!! However the POA that was written with her AD address's guardianship automatically so that we do not have to go thru the court system. Thank you for caring. We were really kicking ourselves about that issue when she was in that 1st hospital. What an awful situation to be in. Again thank you for your care and concern. I just hope I can be of help and support to others on this forum in the future (barring the gremlins that steal my emails) :roll: I shall return.

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59 yr old retarded sis, inoperable brain tumor,complex partial seizures,now LBD w Park. Anyone similar out there?


Wed Jan 21, 2009 1:58 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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The only way to address guardianship is to go through the court system. No POA can give someone guardianship.


Wed Jan 21, 2009 3:14 pm
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