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 Hello, New to Disease 
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Joined: Wed Dec 10, 2008 12:02 am
Posts: 2
Location: Tennessee
Post Hello, New to Disease
Hello,
Thought I would take time to tell my story and hopefully get some answers and support.
My father was recently diagnosed with Lewy Body Dementia, Parkinsonism, and Multi-System Atropy. This has really been a hard few months. My mother noticed changes a while ago, however, the last year he has really changed. His hallucinations are not limited to night now, they can happen all day and night too! Most of the time we can talk him out of them, however, I am waiting for the time that will happen when we can't. Then what? The doctor took me aside this last week and told me that I should be researching homes for him. Boy, you want to talk about a weight! I am really feeling that one. I find myself looking into the mirror and saying to myself that you are the person that is going to have to break my parents heart and lay it all out for them. I am really trying hard to protect my mom and keep my dad present in reality. My heart knows that my mother will kill herself to take care of him. She will never give up. I do not want that time to come either. My largest battle right now is getting my mother to understand that we have to sit daddy down and get a Will and Power of Attorney before the mental status gets any worse. She feels like she is going behind his back and he just says "I am not to that point yet". I am not sure what point he is waiting on..... He already does not know momma most of the time.... How do I get them to understand that this is for their protection and that I am not calling it quits and giving up. I am fighting for all the information I can get my hands on and advice on how to handle them with love! I also have been reading some of the post and I do not know where the "stages" are coming from. Can someone help me with that?
Thank you for listening to me.


Mon Dec 15, 2008 11:02 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
Post 
The way we got power of attorney etc was to all do it. That way you don't single 1 person out. Talk about what you want if you become ill. See if they will open up then.
Also make sure he has a good doctor and the meds are being used to keep him home as long as possible. There is a lot of info on this site that you can read and share with his doctor.
Take care
Sharon

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syt


Tue Dec 16, 2008 9:02 am
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Welcome Tricegirls,
Glad you have found the forums , there is a great deal of information here and be sure and check out the LBDA, the link is below my signature.
Often when dealing with parents a role reversal has to come about, often with the correct words, things like "we need to get his paper work done because if for some reason something happens and I am not right there they won't know who to contact." When we did our POA's we as a couple did them together and named our oldest daughter in them too.
Be aware there are caregivers who do NOT out live their sick spouse's, it happens more that we know.


Tue Dec 16, 2008 9:13 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
tricegirls,

Please read Boeve's "Continuum" paper on the LBDA website as it had lots of info about treatment of LBD. And give a copy to the MD as well. You didn't say if your father was taking a dementia drug. That type of med can potentially help the hallucinations.

Please be sure you have an LBD-savvy MD. (I have my doubts.) If not, consider changing MDs or adding an LBD-savvy psychiatrist, of example.

There's no need to talk him out of the hallucinations and no need to keep him present in reality. Are you doing this because they are frightening? One of the LBDA Scientific Advisory Cmte members said here that by definition the patient has insight into hallucinations. So presumably this will continue.

Perhaps the MD wants you to look for dementia care facilities for your mother because he sees that your mother is not able to care for your father?

Consider getting a family counselor who can help your family have these difficult conversations about end-of-life and your father's care, and can help to get those important documents written. The focus does not need to be on your father. Everyone in the family can discuss these issues for themselves, and complete these important documents at the same time. (Perhaps you can ask at the local senior center if they have a social worker on staff who can help. Or the local area agency on aging likely has a social worker.)

You can find a lot on the web about end-of-life planning and the importance of doing it NOW. For all of us. You can do a search of past posts here on end-of-life planning. In our area, we have the excellent Family Caregiver Alliance. One of their "fact sheets" is on end-of-life planning. (See caregiver.org.)

I hope your father is signed up for brain donation -- one of those things to talk about at the family meeting -- as that will be the only way to confirm what disorder he's fighting. I don't think there's a confirmed case of LBD *and* MSA. Perhaps the MSA diagnosis was given because your dad has severe autonomic problems. They could be inherited. Is your father on the young side for LBD?

Good luck,
Robin


Tue Dec 16, 2008 1:56 pm
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Joined: Wed Dec 10, 2008 12:02 am
Posts: 2
Location: Tennessee
Post 
Thank you all for your replies.
My father is only taking a blood pressure pill to help keep his blood pressure up (this is the MSA part of his disease).
We have now as of 1 week ago started "Seroquil" for the hallucinations. We are told that we can not have anything else because of the Parkinsonism. The med seemed to help some, at least my mother can rest a little more at night. He seems to not recognize my mother more and more. Actually this Wednesday was the first time he did not recognize me.
All I really want is to make sure that I am doing all I can for my parents and be the best support they have. I am lucky, I have a great husband and children that help! Between them and our faith I know that I could never be this strong!
As far as the doctor mentioning the facilities... We are not close to that. I think the doctor is more worried about my father maybe becoming aggresive with his hallucinations. So far, he only sees people, water, bugs, etc, but has not become in any way aggresive... Is this a common thing? Does anyone have a family member that had to go to a facility for anything like this?


Fri Dec 19, 2008 11:18 pm
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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Hello there, Tricegirls. We just found out a week ago that my husband has the disease. There is so much info on this site that from not knowing that there was even a name for what Henry had to finding out all I can on here is pretty overwhelming all at once but I am now sitting back and taking things in a lot different stride now so that things are sinking in and not overwhelming. Glad to meet you, just sorry it has to be in a forum like this, but looking to getting to know all of you better. :)


Sat Dec 20, 2008 1:50 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
tricegirls,

There can be orthostatic hypotension (OH) in LBD as well.

You've been told wrong if the MD said that your father can only take Seroquel for the hallucinations and nothing else.

Not being able to recognize people is not a symptom of LBD unless what you are referring to is Capgras syndrome, which is a delusional disorder in which your father, for example, would think of your mother as an imposter for your real mother.

The best thing you can do for your father is to find an LBD-savvy MD to orchestrate his care.

Robin


Sat Dec 20, 2008 4:19 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 726
Location: LA
Post Every situation is different, of course
I like the way MM said your parents are on their own journey. I'm wondering why the doctor chose to call you aside and talk to you. Is your mother not able to accept news like that? That in itself would have infuriated me had I been left out of that kind of news. But then, I have been known to be rather possesive where my family is concerned. With us I have been the one to relay the news to the children, as I found out things, I told the children. We discuss and I have been talked to pretty straight forward on a couple of occasions with a loving daughter explaining why we should maybe look at doing something a certain way... You might say the four of them have ganged up on me but in the end we have listened to one another. I am in this walk ten years or more now. My joy in life is knowing that I can give my husband a certain amout of peace and allay his fears.

The "children" [their ages are in the late fifties or early sixties] have made a promise to me, "Mother, if you insist on taking care of Daddy, we will take care of you". I have never been so spoiled. They really are standing by to give assistence, whether it be their time or financial aid. When we have gone through a bad time, such as the spring of this year when we had to let my loved one stay at a facility for three weeks while the doctors were getting his meds adjusted, they were here to make some of the visits for me. Those trips were hard for me. Following the stay away from home for the next couple of months, my loved one, Mr B., did not know where he was, he slept very little and things were really bad but the children came every week end and were in charge so I could get rested. Later on I good naturedly "fired" them from the 24 hour duty. I still have one child get my groceries every Saturday, another brings Friday evening dinner and that is when she makes the trip to the drug store. Last week when we had a snow storm here in the south and the snow broke tree limbs causing power outages we had no heat but My son was right here, "Mama, the generator runs on a tank of gas for ten hours, I will keep it filled and running so you and Daddy will stay warm". It was nice having him pop in and out. A daughter lives in New Mexico so she can't be here for hands on stuff but she comes when she can and she has made arrangements for cleaning ladies to come.

We have Home Health. An RN. is in and out, I feel like I have another daughter, as well as the aid who helps with the shower and changes the bed linens. Mr B. waits for their visits. He does not care for visiting friends and neighbors they cause him to feel inadquate when he can't carry the conversation... he has always been such a "take charge" person. But I know my neighbors are available if I need them. I can and have called on them for minor things when the children would be at work. One neighbor routinely brings in my garbage can from the street.

The local police and fire department have let me know they are available if I need them.

I'm not saying that this is right for everyone. I just saying that there is no set rule when dealing with the care of one with LBD. I'm not saying that next week, I will not need the services of a nursing home or other facility. But for now, Mr B. is asleep in his own bed and I am learning what I can about his illiness as I try to pass on my experience to another who is living in fear of the future. Your father's path so far sounds very familiar to all of us who have walked this LBD path.

Easy does it. If one decision does not work, try another until [as someone said earlier] you get a fit for your family. And like Robin said find medical help who will follow the Dr Boeve Continuum plan. Much work and study has been put into that and I think you will find it very valuable.

Sorry for being so long winded but I do care.

Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Sat Dec 20, 2008 5:57 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dorthea --
Your story of your children's love and commitment only tell us more about what special people you and Mr. B. are to have raised such loving and compassionate adults. May I please borrow them for about a month? :wink:

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Renata (and Jerome-in-Heaven)


Sat Dec 20, 2008 12:59 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 726
Location: LA
Post If you only knew my children.
Renata, sometimes I would like to give them all away! You know what they say, "Only a mother can love"... [smile] I tell only the good but with this as well as most things in life, I believe the "Good out weighs the bad", we must continue to search for the good in this wretched desease. Search for the good moments we can derive from proper diagosis and meds. Seek answers.

Search, search, search!

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Sat Dec 20, 2008 3:14 pm
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Joined: Sat Dec 20, 2008 10:21 pm
Posts: 4
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Hello. I have just discovered this organization, and would like to introduce myself.

My husband was diagnosed with Parkinson's Disease in 1990, and was medicated with the standard PD "*." Over the past 3 or 4 years, he developed severe panic disorder, some hallucinations, and other distressing symptoms. Psychiatrists put him on antidepressants and antipsycholtics, without much effect. A change in his neurologist earlier this year, at my urging and investigation, resulted in a concern that perhaps what he really had was NOT PD, but LBD. A visit to the Georgetown University memory disorders program in November, with a complete workup by the program director, led to his conclusion that LBD is the proper diagnosis for my husband.



He has been in an assisted living facility for a year, since I could not care for him at home and he could not be left alone any longer. He is now under hospice care, and is failing very rapidly.



I struggle constantly with issues of guilt and the feeling that I have abandoned him, at the same time knowing full well that there is nothing I can do to make him better. All I can do is to make sure he is safe and cared for by professionals, so that his last days are free of pain and suffering, as much as is possible.



I hope that participating in your forums will help me by allowing me to talk with people who are like me.

Thank you for listening.


Sun Dec 21, 2008 9:55 am
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Hello Reetg,
Welcome to the LBDA forums and I am glad you have found us, I am sorry for what you and your husband are going through, guilt is part of it we never feel we are doing enough but honestly eventho your husband is in a facility you are still caring for him, just not in your home!

As to the DX we put so much trust in our Doctors and time passes and it turns out with a different DX we are thinking why didn't I see this, and bottom line we do not have M.D. behind our name!
I can't give you a scientific number but I am willing to bet that 1/2 of the people with LBD were Dx'ed with something else first.

Please feel free to post, if you have a certain question or something you want to share it is helpful to post in the area that best fits the question at hand , that way more people read it and can comment. I also want to mention there is a support group online just for spouses of LBD. Another wonderful group of people that really know what you are going through!
http://groups.yahoo.com/group/LBD_caringspouses/


Sun Dec 21, 2008 11:10 am

Joined: Sat Dec 20, 2008 10:21 pm
Posts: 4
Post 
Thanks, Irene, for your reply. I do appreciate it very much.

I will look into the spouse support group later today. It may be just what I need.

I am soo glad I found this site. I have some very dear friends and family members who are very supportive and caring, and that means a great deal. But talking with those who are in the same situation will probably be more significant for me and have a greater impact.

Again, thank you.


Sun Dec 21, 2008 12:35 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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reetg,

I'm sorry you've had to join us here on this Forum.

It's to your credit that your husband has been propertly diagnosed. (Please share the Georgetown MD's name, if you would recommend him.) If your husband had parkinsonism symptoms for at least one year prior to having hallucinations, this disorder is called "PDD" - Parkinson's Disease Dementia. It is a type of Lewy Body Dementia. Probably more research has gone into PDD than any other type of LBD. I guess if you have PD long enough, you will develop PDD.

Is your husband taking now or previously any dementia meds, such as Exelon, Aricept, or Razadyne? You might speak with the MD to see if they would improve his quality of life at all.

Has your husband made his wishes known with regard to brain donation? If he's in favor of this, please be sure you've made all the arrangements in advance for this as you don't want to wait until the last minute.

I don't know if the guilty feelings will ever go away. For me, they have dissipated some with time. You have to forgive yourself for everything. I'm sure you've done your best and that's all anyone can ask of you.

Best wishes,
Robin


Sun Dec 21, 2008 6:18 pm
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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MM, I tried linking onto your site and it just took me to 'Webpage cannot be found'. Can you post it again and I will try again. Thanks.


Sun Dec 21, 2008 8:30 pm
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