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 New Member in Maryland 
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Joined: Sat Jun 05, 2010 11:02 pm
Posts: 5
Post New Member in Maryland
Hi, Everyone,

My 86 year old father, who lives in Tennessee, was diagnosed with LBD a few weeks ago. He has had Parkinson like symptoms for about five years. He denied he had Parkinson's claiming that his former doctor told him that he didn't have it. His current primary care doctor treated him for Parkinson's and they agreed to call it Restless Leg Syndrome. My dad refused to see a neurologist. He was an avid golfer and about 4 years ago suffered a fall while walking and seemed to lose some of his mobility. He was playing 18 holes at least three times a week but played a couple times after the fall and complained that his knees bothered him so much that it was too difficult to get in and out of the golf cart. My dad was always very sharp and I never noticed any signs of dementia.

About a year ago my sister passed away. She lived close to them and they depended on her when they need anything. I'm in Maryland, my brother is in Denver and my other sister is in Reno. When we were there for my sister's funeral he told me about a little man that sits on the front porch and watches him whenever he is doing yard work. He has heart problems so I chalked it up to that he must be not getting enough oxygen or something when he is out working and sees things.

In December I had to make an emergency visit. My dad was taken to the hospital because of loss of blood. He was on Warfarin for his heart and fell in the driveway and bled for two and half days before he finally let my mom call the ambulance. He had been mis-taking his Warfarin and had taken so much they considered him to be Warfarin toxic. He was within thirty minutes of dieing because of loss of blood. I noticed that he couldn't remember people's names, would forget things quickly, and was seeing things. He would look out the hospital window and talk about all the people that were out there. He wanted to know what was going on and there was no one out there. He called me by my husband's name several times. My mother had also reported to me that several times he did not know who she was. He would ask her questions about where she went to school, etc. He would also talk about the other people in the house when there was no one else in the house. I mentioned my concerns to the doctor and it was the first time he had heard about the problems and said it might be the Parkinson's medicine. My dad was suppose to stay in the hospital through the weekend. His doctor was away. He through such a fit about being there and his blood levels were up to the level where they just wanted him to take iron to continue to build it that the dr.'s partner released him. I expressed my concern about his memory, etc. The doctor said that he would ask him some questions. He asked my dad 6 or 7 questions which my dad, of course, had not trouble answering. The doctor released him and in the car on the way home he again called me by my husband's name. I stayed with my parenst for week. My dad was very weak. He seemed to improve as the week went on and I noticed less and less confusion. The doctor felt the confusion came from the amount of blood loss.

In Jan. he was hospitalized again for another heart related issue. I visited my parents at Christmas and at Easter. My brother visited in early Feb. He seemed okay when we visited. At Easter my mom reported to me that there were more and more times where he didn't seem to know who she was. I talked to her nightly on the phone and somedays he would be absolutely fine and other days he seemed very confused.

In May I started getting phone calls from my dad. He would tell me some strange things. He called once to tell me that I had to help him to help my mom. He reported that my 87 year old mom was staying out all night with men and using drugs. He saw her come in the front door at 5AM in her nightgown. He was sleeping very little at night. With my brother's help we got him to see his doctor, who prescribed a sleeping pill. Two nights later he didn't come out of the bathroom at night for a long time and my mom finally went in and he was standing in the middle of the floor and would not respond to her. She called the ambulance for him. After being examined by his primary care doctor, a neurologist, and a pschiatrist, and running several scans and tests, his doctor called with me the diagnosis of LBD. He said they would not release him to go home to live independently again. Our objections were a short stay in a psychiatric hospital, followed by placement in a nursing home or assisted living or immediately placement in a nursing home or assisted living.

I went to Tennessee and spent two whole days searching for an assisted living facility in their area with an opening. My mom decided on the first one I visited, which is only about a mile or two from where they currently live. They seem to be adjusting to it nicely. He did make one return trip to the hospital on the day I was headed home. He is Sinemet three times a day and it was causing low blood pressure. He became unresponsive and the assisted living called the ambulance. I am very concerned about his medication. He is also taking Seroquel in the evenings. He doesn't seem to be having the hallucination anymore but after his evening medicines he becomes very sleepy, dizzy and sometimes has difficulty walking. He sleeps soundly for about 5 or 6hours and then is up, often taking a shower at three o'clock in the morning. The neurologist keeps trying to convince us to place him in a psychiatric hospital for 3 or 4 weeks and let them monitor and adjust his medication. My dad hates the hospital and I don't think would respond well. Is this common to place LBD patients in psyciatric hospitals to adjust their medication?

It is very hard being so far away. My initial plan was just to get them in a place temporarily then locate a facility in Maryland near me. However they are adjusting well to their new home and with what I read about LBD I am reluctant to take my dad to another new place.

Thanks for listening. I am so glad I found this site. There is so much information on it.

Sorry this was so long,
Joyce


Sun Jun 06, 2010 4:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Joyce,

I'm glad that your dad is doing so well now.

I think you have to trust your gut about the psychiatric hospital. A fair number with LBD are placed in psychiatric facilities to titrate meds. Some come out of them in better shape, and some do not. You can read some positive stories and some horror stories on this Forum.

Could your father still be having hallucinations and not reporting them to anyone? If so, then perhaps the hallucinations are not frightening and he wouldn't need to be treated for those.

You didn't mention if your father is on an AChEI such as Aricept, Exelon or Razadyne. This medication is important for someone with LBD.

You might read "Mind, Mood, and Memory" on the NPF (parkinson.org) website. It's got a nice explanation of the balance between PD meds and psychotic symptoms.

These non-responsive episodes can occur in LBD. They don't necessarily seem to be caused by medication but are caused by the disease itself.

Robin


Sun Jun 06, 2010 5:56 pm
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Joined: Sat Jun 05, 2010 11:02 pm
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Robin,

I don't think my dad is having hallucinations anymore and like you said if he is, then they don't seem to be harmful.

I am very concerned about his medicine. I didn't bring a copy of his list of medications home with me. My niece was there after I left, my nephew is there now and my brother will be there in a couple days. I started a medical folder and made notes and left it at the house and we agreed we would just pass it on so the next person would have the information when dealing with doctors. I don't think he is on any the medicines you listed. There were about 4 or 5 medicines that he is on everyday then 3 or 4 more that said as needed. I know there is one for high blood pressure, a heart medication, the Sinemet and the Seroquel. I remember those because I talked with the doctor about them. He is suppose to visit the neurologist this week. When my nephew mentioned it, my dad told him it was none of his business and became very hostile about it. My nephew was going to make an appointment so his dad, my brother, could take him this week while he was there. I will tell my brother to check with the doctor about putting my dad on one of these medication. I have this feeling that the neurologist doesn't understand that much about LBD.

My mom does not hear very well and can't hear when any doctor tells her so it is difficult. I will be back to check on them in July.

Thanks for your help. I will read the article you suggested.

Joyce


Sun Jun 06, 2010 7:01 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
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Hi Joyce - welcome to the forum. I'm sure you will find it extremely helpful for info. as well as for support from people who are or who have been going through things you are experiencing.
One bit of practical advice since I am also dealing long distance with my dad who has multiple degenerative brain disorders. (I live in VT and my dad is in MD) I keep a spiral notebook where I write everything that I or someone else may ever need to know about my dad. It contains notes from dr. appts., meds he is on, names and numbers of health care people, as well as all the stuff about keeping his house going. I give copies of those pages to others who may need it (like someone else taking him to a dr. appt.). I keep it with me almost all the time because I never know where I'm going to be when I get a call from the ALF, hospital, doctor, whomever. That way I have my own info. to use when I need it. I also keep an updated meds. list that the ALF provides me when someone changes his meds without my sister or me being asked about changes.
Anyway, there's a lot to do and it sounds like you're taking it one step at a time and getting done what needs to be done.
If you do decide to move your parents to MD let me know if you want some info. about some of the ALFs there. Lynn


Sun Jun 06, 2010 7:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Joyce,

Are your parents in Nashville? There are some good MDs at Vanderbilt. And I think I know of some good ones in Knoxville as well.

Since your mother doesn't hear well, I think it makes sense to have an additional medical power of attorney designated who can help your parents collect info and navigate through the various appointments. I've seen these long-distance care relationships not go very well at all. Is there anyone locally who can be designated as medical POA? If not, I encourage you to consider hiring a geriatric care manager. (And perhaps the care manager can use an online tool such as lotsahelpinghands.org to communicate with all family members.)

Robin


Sun Jun 06, 2010 8:22 pm
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Joined: Sat Jun 05, 2010 11:02 pm
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Robin,

My parents are in Franklin, very close to Nashville. Irene gave me the name of one neurologist at Vanderbilt. When I return in July and I am going to talk to my parents about scheduling a visit with him. He has a neurologist appointment in a couple weeks with the neurologist in Franklin.

Joyce


Mon Jun 07, 2010 9:45 pm
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Joined: Sat Jun 05, 2010 11:02 pm
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Lynn, Keeping a book with all the information is a great idea. There will be different kids or grandkids there to help at different times. So one place to keep all information in a great idea. My niece is taking him to his primary care doctor tomorrow.

Thanks for the idea.

Joyce


Mon Jun 07, 2010 9:48 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Hi Joyce,
I just wanted to add my welcome to the LBDA forums, I see that you are already getting some good advice here. Visit often and post, while asking a question or making a comment it is always best to try and stay in an area that fits the situation the most as it will generate more helpful advice,
Good Luck!

_________________
Irene Selak


Fri Jun 11, 2010 8:00 am
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Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
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Hi Joyce.
I am fairly new to this forum too and the people here are so wonderful.
I am glad your dad could be placed somewhere so close to where your mom lives.

It may be okay & the best thing to let them put your dad in a psych hospital and monitor the drugs. It is better than letting the nursing home doctor make such decisions or the nursing home staff to give out drugs "as needed".

I refused to let the Home where my dad stays send him to a Psych Ward after a hospital stay and I sort of regret it now. My feeling was OMG if they send dad to a psych hospital he will get worse and never recover.
But what I did not know is that the nursing home doctor went ahead and started prescribing things to my dad which made his worse.

Later I learned of an elderly relative who went to the same Psych hospital and they took him off all his medications and started over and helped him then he went to an assisted living home better off.

I do not know if they could have done this for my father since he is already on so many diabetic medications.

It may be the thing for your dad. And it sounds like he has a decent, conscientious neurologist who will watch over him.

My dad has the VA and it takes 2 months to get an appointment and then another month or so to even find out what the results of the previous appt are. And he really has no primary just the VA nursing home doctor who has his own practice and takes care of 100+ men.


Mon Jun 14, 2010 3:20 pm
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