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Old 01-18-2009, 03:45 PM   #1
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Advice on treatment please...

Hello,
My mother is 68 an has been diagnosed with alzheimer , I had seen the subtle signs approx for 4 years this past 18 to 24 months has been the worst. Especially the last 6 months. I could not convince my dad to do anything. He just kept saying that it runs in my mothers family and that is true as her mother just passed away from it 8 years ago. I thought however that my mom got it much younger than her mother. Well long story short dad did nothing and it got to the point where he was finally asking for help. So i took her to her primary dr and he ran testing and put her on aricept. Dad still was saying nothing is going to help her. She was on it for 3 months and we didnt see major improvement but she seemed to be holding steady and i was just thankful for that. well my father started complaining about how much her pills cost so when she went back to the dr he said that he was removing her from her coronary meds and aricept because the cost is to high and its not going to give alot of results. That was early dec , well now she is hardly speaking at all and is in bed all day sleeping except for when she gets up to eat. I am helping as much as possible i fix her pills daily as she and my dad get confused and also do there housework. But I am not a peace with the decision to take her off the aricept. I also had mentioned to the dr to add namenda but he said the cost would not be worth the benefit. I cannot stand the thought of her laying in that bed every day. It is no quality of life. I do understand the disease do some degree as my grandmother and all her brothers and sisters had it. But in my heart if we do not return to some kind of treatment i do not believe mom will make it through the year. Tonite when i went up i got her out of bed and really just kept trying to get her to talk and this is the first time this week i was able to get her to. I told her to watch some tv instead of just sleeping all the time to get her mind working and thinking. She is also having paranoid thoughts that poeple are in the house and there are rats and such in her room , which there are not. So i take her and show her the different rooms so that she can see there isnt but i know that when i leave that the thoughts will return. The dr also took her off her depression meds lexapro that she had been on for 5 years an put her on generic prozac which made her nauseated so i quit giving it to her. I would like to know what others think regarding treatment and also about how do i know if she should be taking an antidepressant. I just want to do what is best for her and it keeps me up at nite because i truly do not know. In my heart i think we should get back on the aricept but i am not a dr and he said that his experience is that there is no stopping the progression, it is like a train that wont stop. Any help would be greatly appreciated as i want to have my ducks and info in order when i call the dr this week.
Thanks,
Tami

 
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Old 01-18-2009, 05:11 PM   #2
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Re: Advice on treatment please...

Dear Tami, So sorry for what you are going through. You say your dad is not able to take proper care of your Mom, and I agree. Lying in bed all day comes at a much later stage of Alzheimer's, not in such a recently diagnosed case. I suspect removing her HEART pills is doing her serious harm. There are generic versions of practically all drugs and they can often be bought at very low cost from supermarket pharmacies. Your Dad has no right to save money at the expense of his wife's health, and I am wondering if he has dementia also .. this is not a rational option.

My Mom died of Dementia a year ago, and for her final 2 years she was in a nursing home. Aricept and Namenda did not help her at all. But she had been pretty confused for a good 8 years already before she got that bad.

Has your father been checked by a doctor lately? Maybe he needs some help too. I don't want to scare you, but taking care of a dementia patient is not easy, and the one living with her has to be really well informed, smart and competent. Otherwise a nursing home is the way better option.

Taking her from room to room to show her that there are no rats or no other threats is a waste of your energy - Dementia pateints do not remember what they have just been told. Ten minutes later she will imagine rats again. Better would be to get medical attention - there are drugs available that dampen hallucinations.

You really need to get her to a neurologist, and your dad either to read up on this subject or find out what is wrong with him. If money is an issue, Medicaid pays for nursing homes, you just have to get her (or both of them) into your state Medicaid program. This involves proving they have no property or other assetts over a certain low amount of value.

I wish you luck and courage as you try to take care of this mess. Do you have siblings who could help you? Your Dad has seen Alzheimers in other family members and may just be resigned to her 'fate' and ignore it -- unfortunatly that does not make it go away. Stopping her coronary drugs could kill her. i

God bless you!

Love,

Martha

Last edited by Martha H; 01-18-2009 at 05:15 PM.

 
Old 01-18-2009, 07:57 PM   #3
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Re: Advice on treatment please...

Martha. My Mother was on 7 different prescriptions; Fosamax for Osteo, Lipator for cholesterol, some water pill, and some other pills and also various vitamins. as well as the Aricept and Namenda

When we were going to get a nurse in for respite care so sister could shop and bank, we had to get her a sedative for the biting, kicking, hitting, etc.

Well, while at the doctor's I asked for a review of the medicine since giving it to her each day was a 1 - 2 hour (I kid you not) battle to get her to take them.

We eliminated all of them and then also removed the Aricept and Namanda becuase of the wonderings, lack of sleep, grabbing of head, etc.

Now she's in the hospital and apparently they gave her some of them again!
Sister was starting to give her Namenda again because she felt Mother was more able to eat at the table, etc.

While you may think its cruel to withhold medicine, there's numerous times that it is a waste of money and product as they no longer work.

So I have compassion for what's going on but while the diagnosis may be recent, the level and degree of it may be a lot more advanced that the medicine isn't going to be much affect any longer.

With how difficult my mother was and is, I prayed for the times she would take a nap and my mother was the type of dementia patient where she hardly slept at all. Out of a 24 hour period, if she slept a total of 5 hours interspered throughout the day. She never slept a full hour through!

 
Old 01-19-2009, 12:26 AM   #4
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Re: Advice on treatment please...

mysissy i agree with both Martha and Caring...even though the diagnosis is only 4 yrs. old the process may have been going on much longer. In my honest opinion the meds for ALZ are useless once they reach levels 5-6. Her heart meds are another matter however. In my experience, these meds have been around for awhile and are not that expensive. Talk to your Dad and see what is really going on. If she is indeed sleeping all the time due to ALZ, then it is a fast progression. And yes it does seem to be with the hallucinations you mention. Talk to the Dr. even if it is just to prescribe an anti-anxiety med for those pesky rats. Keeping her comfortable is the goal....

 
Old 01-19-2009, 03:17 AM   #5
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Re: Advice on treatment please...

Yes. I tend to be anti-drug, and in my opinion many people are overmedicated. My Mom[s dementia began after being put on 6 heart drugs. But I don't say all prescription drugs are bad. Many are life saving. It scared me that this woman was suddenly taken off meds and now sleeps all day. At the very least she needs to be evaluated by a specialist.

Love,

Martha

Last edited by Martha H; 01-19-2009 at 03:18 AM.

 
Old 01-19-2009, 05:58 AM   #6
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Re: Advice on treatment please...

Thank you all very much for your input i greatly appreciate it. I have been struggling since dec about removing her from the meds. the doctor of course was doing mini mentals on her and also had eeg and cat scan and that is when he diagnosed her. I however had seen the signs for 4 years and my dad and mother would not let me get near her doctor until dad could no longer handle it alone . now i am the one who takes her to her doctor. On her mini mentals each visit she kept losing points even on the aricept. She is still on aetenol and lozol for blood pressure and i believe cholestrol but he removed her from a coronary med which the name is eluding me now because he said it was so expensive. She has been having the hallucinations for couple years prior to and while on aricept. They have her on xanax 2 times a day. I give that to her in am and at nite. she was on ambien but that seemed to make her sundowners worse and she was more agitated with it. And frankly i just thought she slept enough already. It is so hard to know what is the right thing to do. My dads mind is still very good ,he is an old country boy really and I think lost at this time. what martha stated in her post i believe to be true that he just resigned to the fact that it runs in moms family and this is how it is. He is very stubborn and loud and i finally a few months ago when mom was hospitilized for gallbladder kinda threatened him with adult protective services because he was still letting her take care of her own meds and she was constantly taking to much and running out. I went and talked to pharmicist and he advised me there had been a problem with my mothers meds for awhile her running out all the time early.So I explained to my dad he could not let her take care of meds, drive and etc because he was responsible and he was aware that she was incomptent. He is at his wits ends at times though. I have a sister but do not get much help with mom from her.So it is me and dad .
I layed in bed last night unable to sleep just thinking about this and her. She was my best friend we did everything together and I feel like guilty because i want to help her and just am lost with the med thing. But it does sound like what the dr is saying is consistent with what some of you are saying regarding aricept and numenda.I do not want to force her to take something to make me feel better.
I am thinking about maybe trying to get her to do some activities maybe dot to dot coloring books an such if she can. Her being in bed all day is so hard to watch. I feel like I am watching her die. I know it is progressive disease and since she had her gallbladder surgery and wouldnt wake up for while it has gotten so much worse, Maybe its me that needs the help now to come to a peace with this. I dont know It is tearing me up inside because she has always tried to be there for me.
Sorry so long but thank you all so much,
tami

 
Old 01-19-2009, 06:46 AM   #7
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Re: Advice on treatment please...

This may or may not pertain to your situation regarding hallucinations. Here is what happened in our situation. FIL was diag with frontal lobe dementia. Dr put him on aricept and seoquel. He started having hallucinations. He said it was the seoquel. So I thought he was going to remove him off of it. Nope, he increased it to a level until he stopped hallucinating. So increasing the dosage was the trick. Now he is fine with the hallucinations. Strange. Was the drug called seoquel? Sorry if this doesnt pertain to you.

Cheryl

 
Old 01-19-2009, 07:30 AM   #8
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Re: Advice on treatment please...

Tami,

My mom was my best friend also. She died a year ago from this b*tchin disease. She too would lie in bed. But if I told her I wanted her up, she would get up. Does it work if you ask her to get up and dressed? Will she do that for you? If she will, just accept it as a stage of the disease.

Coming to grips with this isn't easy hon. You have to realize that the person that you see isn't your Mom. Your Mom has left you. She is waiting for you elsewhere. I don't know if you believe in God and heaven-I do-and I certainly don't mean to offend you if you don't, but I know that my mother is watching over me from above and will one day tap my on the shoulder and hold our her hand and help me join her and daddy up above. I have felt her straighten my hair, and I held her hand as she passed with her guardian angel waiting to take her home. So you need find that little corner of peace that will allow you to accept that person that you are helping as a shell of your mother. Know that your mother isn't suffering. She is waiting for you elsewhere. This is an imposter that has taken over your mother's body. This imposter is poseing as your mother to fool you.

Try looking at your mom as someone else that you are being obligated to help. Such as a neighbor's grandmother. Try to detach yourself from the feelings. It's hard to do, but it makes the day to day care easier to do and it makes the ups and downs easier to bear over and over. I am/was an only child so I had no one to share this with except my hubby. Even though I am a social worker by degree, it didn't help make this any easier! But if you can take that little step back, you might find it just a bit easier to work with.

As for the seek and finds. That section of the brain is the first to go. Much as your Mom can't find anything and thinks there are rats or whatever in the other parts of the house...she won't remember how to do word games either. That is difficult for them to track. She might like colorful picture books...

And what you need to realize that anesthesia will have caused your Mom to slip down the hill as we say. Any time a dementia patient has anesthesia, it tends to make them worse. And they don't recover back to where they were before the suregery...

Wanting your Mom better isn't a bad thing. WE ALL want them back. But you also need to consider that the aricept and namenda will only slow down the progression, it won't improve her and it won't stop the disease. It may be time to stop the aricept and the namenda, but for heavens sake, keep her on her heart meds and the blood pressure and xanax. The hallucinations are terrifying to dementia patients. And Yes, SOMEONE OTHER THAN YOUR MOTHER NEEDS TO GIVE HER HER MEDS! That's a no brainer... Your Dad may be one of the salt of the earth, but let's be practical here....

Tami, we all hurt when it's someone we are really close to, And it's really sh#tty when it's your Mom. I know. But chin up hon, you can make it through. Here's a towel, hang on tight, we have the other end. We won't let go. You can cry all you want. We will hold you up, dry your tears, answer your questions, pat you on the back....just ask...

hugs. You are doing the right thing. Your Mom would be proud of you...

 
Old 01-19-2009, 07:50 AM   #9
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Re: Advice on treatment please...

Tami

My mother is on the tail end of what is happening in Dementia cases. She lost the ability for feeling of hunger or thirst. She doesn't always want to eat and sister forces her to because its our innate nature to what them to eat and drink.

Mother talked of seeing her mother or her brother, etc when she was on Aricept and Namenda and all the other mediicne. She was also holding her head a lot and saying "no, no, no". She was never on any anti-psychotic medicine.

While I am an advocate of taking medicine when it can cure or help provide quality of life extension. I also agree to stop it when it seems that the body is no longer able to process it OR it no longer has a function.

My mother suffers from gall-bladder issues, de-verticulitis, hieatal hernia, pro-lapsed colon and hemmoroids. Years ago, doctors offered to do surgery if necessary, we held off because when asked the Doctors said that she would lose whatever mind she did have, she wouldn't coming out of surgery and would've been a vegetable. So her stuff is controlled by diet and Sister was doing very well with it all.

It takes constant asking the right questions, being prepared for the answers and realizing that there should be no guilt of anyone who has someone with this disease.

I'll keep you in my prayers.

CaringSister54

Last edited by caringsister54; 01-19-2009 at 07:52 AM.

 
Old 01-19-2009, 09:17 PM   #10
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Re: Advice on treatment please...

Wow, You all have been of so much help. I got alot of questions answered. Like why my mom is hardly eating. I had no idea that it was the alzheimers. she is down to wanting to eating grilled cheese sandwiches for lunch and dinner and toast for breakfast and a butterscotch pudding. This is so different for my mom. We have noticed this change since her surgery in july.That has been a big concern along with the sleeping and also the lack of being able to put a sentence together. there is rare times she will get a whole sentence out. You all have helped me with the decision the dr made with the alzhiemers meds.
On her last mini mental i think she scored a 15 and that had went down even on the aricept. I was so hopeful that treatment was going to give us more time. But there is no quality of life. It scares me for her and also myself since it is so prevelant in my mothers family.
I am taking all of your thoughts with me to help me get through this time and also passing them along to other family members.
Thank you all so much,
tami

 
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