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Old 02-18-2012, 10:39 AM   #1
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Smile New here

I am trying to find a new board, since the other one I have been on is not very friendly, and there seems to be issues with administration. All the helpful people are leaving it, so here I am, looking for an active forum.

I am the caregiver for my Mom. She is stage 5/6. She lives with me and my DH. She has just started taking Aricept, will add Namenda in about 3 months. Mom is a real sweetie, is able to recognize people, but forgets names. She likes to read and watch tv, however, she gets the two things confused when she tells you the plot!

Anyway, will give this board a try and hope it is a good fit! BTW is this board in Australia? I am in the U.S.A.

 
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Old 02-18-2012, 03:30 PM   #2
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Re: New here

welcome, although I am sorry you have had to find us, this is a great place to land and the people here are really friendly, I have been though some really tuff times and I have always been able to come here and get some advice or just be able to yell, scream, cry and yes also laugh...

hugs judy.

 
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Old 02-18-2012, 05:52 PM   #3
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Re: New here

Welcome to the board Liany. I do hope you find a fit here. The participants are friendly and helpful... and the Admin is great. As long as we follow the rules and be kind to one another we don't hear from them. It might help to read the rules such as no posting websites

We have had post from all over the world on here. Many of us are in the US. All are welcome! My Mom is in a Memory Unit in the late stage 6 to stage 7 of Alzheimer's. She was diagnosed August 2006 after showing symptoms for several years.

I do have a question... why are you starting the Aricept and Namenda at this point in her disease journey.... just curious

Hope you find a home here and hope to hear more from you !

Love, deb

 
Old 02-18-2012, 06:11 PM   #4
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Re: New here

welcome. sorry you have to be here, but we are all here for each
other.

 
Old 02-18-2012, 06:56 PM   #5
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Re: New here

Hi all and thanks for the welcome. Deb, her doctor said it probably wouldn't help a lot, but thought it was worth a try, particularly the Namenda, said they work better together than separately. It's funny, some days you wouldn't know there was anything wrong, then she'll have a bad day and not know who I am or where her daughter (me) is. On the mini memory test she could not answer most of the questions, so there is definitely a problem. The doc placed her at 4/5 then, but she has gotten a little worse since then.

Last July she started a round of UTIs that really laid her low, then she developed a skin condition which she received a steroid ointment for. Unbeknownst to me, it caused her blood sugar to range from 3-400 for about 3 months. No one caught that it was the ointment responsible, I had to figure it out for myself. Due to those things, she deteriorated faster than she would have normally. But, she is a real tough cookie, sweet as can be, but a survivor. She has had cancer 3 times, has type 2 diabetes, hypertension, hypothyroidism, wide angle glaucoma, edema, interstitial cystitis, and diverticulitis! Never know it to look at her.

She really misses my dad, he passed away 9/2010, and the move here was hard for her because we had to do it fairly quickly. We are so glad that she is with us, and hope I can continue to care for her right to the end.

Looking forward to reading all the posts here. Can always learn something new!

 
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Old 02-18-2012, 07:54 PM   #6
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Re: New here

Welcome! I just joined myself yesterday,and it seems like a lovely place to be. So welcome from another newbie!

 
Old 02-18-2012, 08:26 PM   #7
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Liany... I see many parallels between your Mom and my Mom. One is the steroids. Mom had the same reactions and more. She was pegged a type 2 diabetic, ended up in the heart cath lab due to adrenal reactions, and went through a period of steroid psychosis. It was ALL because of the various steriods she was given.... Prednisone and a Cortisone shot in her shoulder. Like you they were treating her for the symptoms and I was the one that put it all together. Once I got her off the steroids her diabetes, heart condition, and the psychosis cleared up! Most of the psychosis... that was during the early stages of her Alzheimer's. I can't warn enough of the side effects of steroids.

Then she had the run of repeated UTIs. That was after her diagnosis and they sent her into a downward spiral that she never recovered from completely. What I discovered there is that they were treating her with "standard protocol". Well, the "standard Protocol" is not effective with UTIs that are caused by Ecoli. When I finally convinced a doctor to culture her Urinalysis and analyze what antibiotic was needed they completely changed what she was on and the UTI cleared up. I put her on a maintenance dosage of that medication and so far we have had no repeat of the UTI sage.

Mom also survived breast cancer... mastectomy and chemo. Yep, she is a fighter. I wouldn't classify her as a sweet heart She fought this disease until she ended up in the Geriatric Behavioral Med Adjustment unit. They did an amazing job of adjusting her medication and she has been chemically content since then. At this point, she had no medical problems except the Alzheimer's.

Mom and Dad, with his vascular dementia, moved her in March 2009. Dad died March 2010. Mom still does not know that he is not around the corner somewhere. She was far enough into her Alzheimer's not to know. In a way that was a blessing.

I ask about the medication (Namenda and Aricept) because the doctor is right. At this late stage they are probably not going to make a difference in her cognitive ability. But you do need to watch out for side effect. They are notorious for gastrointestinal problems. Aggressiveness, depression, anxiety and hallucinations are side effects of the Nameda. Amazingly one of the side effect is... confusion!!! Aricept side effects also include the same gastrointestinal problems. It can also cause loss of appetite and weight loss. Another side effect is trouble sleeping. It can also cause depression along with unusual tiredness and weakness.

Mom was put on both for a while. I saw no improvement in her abilities and if anything she spiraled down faster than before the medication. There were gastrointestinal problems, especially the diarrhea and constipation along with the upset stomach which affected her eating and started her weight loss. She started having trouble sleeping. She was up late and up early. Some nights she didn't sleep at all with only short naps during the day. But the most worrisome side effect was the depression, anxiety, and aggression. That is why she was finally taken off the medication. Nothing seemed to help the mood and behavioral instabilities until after she was off the medication. So just beware of the potential side effect because they are not harmless

I would hate to have to go back and read every post I would hate to have to go back and read everything I have written over the last four years!!!!!! Good luck Glad you are here!

Love, deb

 
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