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Old 01-06-2009, 07:04 PM   #1
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A Quest for Information

Hello to all,

As a newbie here I would first like to introduce myself. My name is Don,You can call me Moose my whole family does. I live in the Southern Central part of Michigan. I am 42 years old with a 63 year old Mom who as of Nov.of this last year has been diagnosed with Dementia and Sundowners Syndrome due to alchohol abuse. I happend to pretty much stumble apon this site while looking for information concerning Dementia and Sundowners.
I am willing to take any and all information concerning these. As the answer guy for my whole family I need to study up on these the best that I can so that I am able to offer solid answers to the members of my family and so that I will be able to understand just what the Doctors and Nurses in charge of Moms care are talking about.
If there is anyone out here willing to share information or know of diffrent sites that will help me in my quest.I welcome all replys.

Thanks for your time, My God bless you and yours in all that you need and do during this crazy journey we call life.

Michigan Moose,

 
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Old 01-06-2009, 09:09 PM   #2
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Re: A Quest 4 Information

Start asking your questions Moose We may not have all the answers but we have experience, understanding, and support. We will share all we have

Love, deb

 
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Old 01-07-2009, 03:54 AM   #3
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Re: A Quest 4 Information

Welcome, Moose. I cared for my mother for 5 years when she got dementia, and when she had to go to a nursing home she lived almost 2 and a half years longer. I don't know a lot of technical things about the disease, but have a lot of practical experience. I hope you will come here often, talk about your Mom, ask questions, and get some good tips on how to act around her, etc. Is your Mom in a nursing home? Do you know what stage she is in?

Love and blessings,

Martha

 
Old 01-07-2009, 07:11 AM   #4
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Re: A Quest for Information

Moose,

also what helps is if you keep on one message string and not put the same message into two or three different messages. It makes it hard for us to keep on track and answer the questions, if one is in one post and something else is in another.

As everyone said, we are here to help you.

In regards to Sundowner. I see it in my mother and associate it to colic in an infant. My mother got agitated late afternoon just around dinnertime.

She also started getting upset with seeing herself in mirrors so we have blankets over them. Ativan was prescribed in .05 mg dosage and we can give Mother up to 4 a day if needed, Sister usually reserves it for nighttime.

When Mother was on Articept and Numenda, we would her more agitated and uncontrollable. Especially when it came to taking this medicine and a host of others. Finally got Doctor to understand and she said to stop whatever we want whenever we wanted because all she was taking, she had and the medicine wasn't going to cure anything. It took awhile for Sister to stop the Dementia medicine. But boy what a difference in mother without it. I think because she couldn't communicate and hasn't for about 2 years now, her speech is just babbling, the medicine was really causing havoc inside her and she wasn't able to let anyone know so her way was to spit it out, slap it out of Sister's hands, hide it in tissues, or food, or drop it under the table.

Their battles have been less as the reason was no longer there and peace has reigned in their house for the most part.

Keep posting.

CaringSister54

 
Old 01-07-2009, 07:21 AM   #5
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Re: A Quest 4 Information

As of yet I am not sure what stage she is in, All i know is that if she wrer to stop taking the medacation they are giving her she will be rite back to square one with the audio and visual hellucinations. We do have her in a home.
As for the way that I act around her it took me a while to come to grips with understanding that what she sees is realy what she sees.At first i would tell her that there was no kitten outside trying to get in the 8th.floor window of her hospital room,or that there was no one beside her bed trying to set it on fire. It was real hard to get used to playing along so to say. But for the most part I have a handle on it.
We started to see signs of this back in Sept. of last year and never put two and two together.I think this is why I am so hungry for information cocerning this. I feel bad for not being able to pick up on this sooner. I never seen it as a problem this deep. I am so very thankful for people such as yourself for responding to my message.
I don`t know just how to thank you for sharing the information that you have. I do wish to say that I am sorry that you ever had to be given reason to need the information.
Again I wish to thank you Martha, Hope to hear from you again soon.

Don (Moose),

 
Old 01-07-2009, 07:42 AM   #6
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Re: A Quest for Information

Quote:
Originally Posted by caringsister54 View Post
Moose,

also what helps is if you keep on one message string and not put the same message into two or three different messages. It makes it hard for us to keep on track and answer the questions, if one is in one post and something else is in another.

As everyone said, we are here to help you.

In regards to Sundowner. I see it in my mother and associate it to colic in an infant. My mother got agitated late afternoon just around dinnertime.

She also started getting upset with seeing herself in mirrors so we have blankets over them. Ativan was prescribed in .05 mg dosage and we can give Mother up to 4 a day if needed, Sister usually reserves it for nighttime.

When Mother was on Articept and Numenda, we would her more agitated and uncontrollable. Especially when it came to taking this medicine and a host of others. Finally got Doctor to understand and she said to stop whatever we want whenever we wanted because all she was taking, she had and the medicine wasn't going to cure anything. It took awhile for Sister to stop the Dementia medicine. But boy what a difference in mother without it. I think because she couldn't communicate and hasn't for about 2 years now, her speech is just babbling, the medicine was really causing havoc inside her and she wasn't able to let anyone know so her way was to spit it out, slap it out of Sister's hands, hide it in tissues, or food, or drop it under the table.

Their battles have been less as the reason was no longer there and peace has reigned in their house for the most part.

Keep posting.

CaringSister54
As you know I am new to this site.I am not sure as to what you mean about keeping on one message string.I have noticed that I can either reply by Quote or by Quick Reply. Which is the best way to do this ??

 
Old 01-07-2009, 08:09 AM   #7
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Re: A Quest for Information

Sorry I confused you by my comments. What I meant is -- your current 'message thread is A Quest for Info. . ."

Somtimes someone will write in one message "a quest for info". Then they start a new message thread under a subject "Does anyone know?" and they may even start a third by jumping into another person's message thread to provide information as they know it and in that message ask a question.

What happens is we jump all over in trying to find all your messages in our desire to help you.

You don't have to keep in one message when you jump into reading something within the other 'message threads' and post a reply to someone. Help someone else who is just beginning and you've been through whatever they're asking about. But, I'm just suggesting that you yourself, keep your questions you want answers to all within one message topic so you don't ahve to jump all over to obtain your answers.

You'll find me, Martha, DGabriel, Lil Deb, IBake and some others all within these other line items as we have written questions ourselves, provided info under topics, or help anyone else.

Click and read other messages already here, you may be surprised to get your answers as someone else may ahve asked or came across the same proiblem already. But under your "A quest . . ." post all the info you want, we are here to serve.

You are in my prayers

CaringSister54

 
Old 01-07-2009, 12:28 PM   #8
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Re: A Quest for Information

Moose,

Welcome to the boards. First...don't beat yourself up. There is no guilt allowed here. You didn't know that your Mom was suffering and that her reality wasn't the same as yours, so you are to be excused. And here's your towel. You'll need it here on Planet Alzheimer. It's a crazy world that you have entered. The reality that your mother lives in doesn't resemble the one that you have in no way shape or form. The best you can do is just agree with her when she says that there are turtles moving in under the bed and that rabbits have run away from the turtles. If she thems, then they are real to her at that time. Her mind has fallen down the rabbit hole as Alice would say.....

Many many AZ. patients suffer from sundowners. My mother did. And so did my dad. It occurs in the late afternoon into the early evening. If they were toddlers you would call it the witching hour because they turn into such little witches! If your Mom is particularily bad, they may have already given her a mild sedative to help her during this period. If not, you might want to suggest it, as it is a help and calms them down. It certainly makes their evening easier and helps the staff also.

I am sure that you or someone in your family has both durable and medical POA for your mother? Is your Dad still alive? Who holds the POAs for her? Is she competent enough to know any of you? How long has been sliding down the slippery slope? Is someone on all of her bank accounts? These are the primary things that you really need to attend to first and foremost. Does -do you have a good doctor for her? Are you comfortable with the place that she is staying in?

I lost my father to an aortic abdominal anuerism -he also had vascular dementia-a year ago. Mom had Alzheimers. She followed Daddy five weeks after he passed. So I am all to familiar with this horrid disease. I spent alot of time flying from VA. to Minnesota that last year. It was every 4 months, then every 8 weeks, then we were going home every 4 weeks, then I was getting called to the point that the airling stewards knew us by name....

So Moose, ask away. BUT-don't beat yourself up. You can't be blamed for things you didn't know existed. You are now trying your best to help your Mom and that is what is most important. We are a caring group who will try our best to answer your questions. And trust me, we have a wealth of experience...welcome....

 
Old 01-07-2009, 01:32 PM   #9
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Re: A Quest for Information

Hi Moose! I'm another Michigander!

Hmmmmm...63 is young for any kind of dementia...but it's my understanding that alcohol-induced dementia follows much the same path as Alzheimer's.

(Actually, my Sis makes sure to have a small glass of red wine before bed each night because research shows this may HELP the onset of Alzheimer's! Such strange things can happen to the brain....)

You CANNOT feel bad for not noticing different behaviors...we've ALL beat ourselves up for the same thing. Some stuff is just hard to admit, and this is sure one of 'em.

I always notice how many persons are visiting this particular forum each time I post...and it makes me realize the wealth of info that has already been posted!! There is so much information that will be helpful to you........and yet, the questions and comments you post now will be welcomed by others just starting this journey. Keep posting...ask questions...and know there are a lot of soft shoulders here!

I recently lost both inlaws to this disease, and my own Mom is in the end stage after 10 years in an Alzheimer's facility. Somehow reading other's challenges helps me understand I'm not in this trench by myself.........Pam

Last edited by petal*pusher; 01-07-2009 at 01:33 PM.

 
Old 01-07-2009, 04:08 PM   #10
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Re: A Quest for Information

hi moose, and welcome..
you mentioned alcohol induced dementia and i am curious about that as my father was diagnosed with korsakoff's (sp) due to alcoholism. are the dr's sure that it is alzheimers and what kind of testing was done? what is her history and how quickly did her symptoms arise? sorry about all the questions but i may be able to greatly assist you if i could have a full history. my mother and grandmother also suffer from alzheimer's but my dad was definitely" korsakoff's physochosis "(sp) and he was fairly young also (58). any imfo you could give would help. thx and again welcome

 
Old 01-07-2009, 04:14 PM   #11
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Re: A Quest for Information

hi moose, i am also new to dementia. these boards are great! my mother has dementia and is in a home. i still dont understand what actually happens, but i have learned so much from this board. have patience and read what others say. it will definitely apply to you.

 
Old 01-07-2009, 04:14 PM   #12
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Re: A Quest for Information

I agree that there is absolutely no reason to beat yourself up because you didn't catch on sooner.... you caught on and that's good enough. We missed obvious signs with Mom for over 3 years. Hindsight is a grand thing but it surely doesn't help when you are trying to figure out something that you don't know you need to know. You do the best you can at the moment with what you know... and go on to the next day. No regrets and no look backs. It is what we do NOW that matters

love, deb

 
Old 01-07-2009, 04:25 PM   #13
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Re: A Quest for Information

Hi Moose and Welcome,
My Mom has dementia. She is 82. I just wanted to say Hello and your in the right place for help and support. This site has been a God sent to me.
Type away. We're all here to help when we can.

Love Chris

 
Old 01-12-2009, 05:32 AM   #14
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Re: A Quest for Information

Hello and good morning to all;

It`s been a few days since I was last here to talk to anyone. Been alittle busy trying to get back into and old career. All is good on this side of life for the most part. I wish to say thanx to all that have sent a reply to my last message.
I will try to give you all a bit of history on Mom and what is going on with her.
It all started back in Nov. of last year. stopped by to see her after my family and myself were going home from church. She was sitting in her chair at the table as always drinking her coffee. This time around there was something that was not right with the way that she was acting.She was asking me over and over again if I could see the man that was standing on her deck trying to get into her apartment. Not knowing any better at the time I kept telling her that there was no one outside trying to get in.At this time not only did she a man on her deck but there was kitten hiding in one of her plants as well as a answering machine that kept talking to her.
Up to this point things had not been this bad with her. We have been dealing with health issues with her for the better part of a month now and the Doctors could never pin point what was wrong.
Now take in to consideration that she is dealing with not only trying to get her Thyroids leveled out but also Anxeity,Bad Nerves,A real bad case of Dermatities, Not being able to sleep at night due to waking up and not being able to breath,not eating properly and not taking in enough fluids.
So I tell everyone else involved that they are nolonger in charge of the situation and I take her to a diffrent hospital where with in a couple of hours they know what is wrong and the treatment begins.this is what they find after all the test that they run on her.
Sever Dehydration,
Sever U.T.I.,
Thryoids way out of control,
Hanging border line Diabetic,
Diagnosis of Dementia due to Alchohol Abuse ( Shrinkage of the Brain Stem at the base )
Now my mind is going into overdrive with talking to the Doctors and Nurses concerning her Medical History and such. After hours of this question and that question from this person and that person we finaly have some answers as to what we need to do.
She is addmitted to Sparrow Hospital here in Lansing on the 4th.of Nov. she spends a week there while the Doctors and Nurses do there test on this and that. The whole time I am right on their side asking 1,000 s of questions of what,when,where and why.
The Doctors are finaly comfortable with their diagnosis and now we need to find her a bed in a facility that can offer her the treatment that she needs.This means more people and more questions to deal with. Now I find myself digging for strength at every turn in this situation.
We don`t have insurance for her as of yet so we need to find a place that will accept her under a Medicaid Case Pending situation. The only place we find is in Carson City which is an hour drive one way. So away she goes to Carson City Hospital where they addmitt her to their Psych Ward where they are going to do their test and try to regulate her medacation.She spends a week there before they feel she can be realeased to a A.F.C. Now we are facing the no insurance issue again.Another move for her and more strength for me please.
Pine River Healthcare Center in St.Louis,Mi. a half hour or so north from Carson City has been a God Send to me. She has been ther since around the 14th. of Nov. and to date is doing much better than she was when we first got her there. She has been moved from their Psych Ward there to General Population. And now all we are doing is waiting for the insurance to kick in so that we can get her moved back to Lansing where she will be much closer to Family and Friends.
It is hard to believe sometimes that this all started from her Thyroids being out of wack and her giving up the drink cold turkey.
So as I sit here trying to hold my own life together I am trying to do the same for her at the same time. It has not been easy. We had to pack up her house a few weeks ago and I think that was the hardest thing to handle so far through all of this. To see Mom`s Hosue change to no more than a memory is hard. I know it is hard for all of her Grand Kids to deal with knowing that there will be no more going to Grand Ma`s to spend the night. I ask of any one out here if there is a easy way to deal with all that is changing due to this no good evil disease ?
I thank God for this kind of site where I can come and visit and know that I can share with others that have gone through or are going thrugh the same types of things as I am. Thank You one and all for all that you are doing. I can only pray and hope that through all of this I will one day be of help to some one in the same situation.
For ever on my Quest during this crazy journey we all call life,

Michigan Moose,

 
Old 01-12-2009, 10:17 AM   #15
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Re: A Quest for Information

Hang in there Moose.

It doesn't get better-just different. Reality is hard on the kids- I know. Losing their grandmother is rough. She is still there, but she's gone into hiding. Have them try to remember what she was like, it will make it a little easier for them. If she used to get her hair done, you might want to see if she can get it done where she is. I know that it helped to see my mom with her hair styled the way she always wore it...

Coming off alcohol was a shock to her system along with thyroid issues and borderline diabetes. A UTI will always send a dementia patient into a tailspin quickly. So you need to keep a check on her fluid levels.

Breaking up a house is never easy-but home is worse than imagined. Just remember that you are only packing up THINGS. HOME is in your heart and memories and your family. Things are just things. Your family is your true home...keep that in mind..and hang in there. We are here for you.

 
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