My mom was diagnosed with AD about four years ago, and due to Aricept, has progressed very slowly. She knows everyone in her life, but cannot follow conversations and is always disoriented. She won't leave her house, and won't do anything. She sleeps until 12 noon or later, gets up, eats, lies down on the couch, has dinner, goes to bed. We can't get her to exercise or do any activity at all, except watch TV sometimes. Does anyone else have this experience?

Hi Joan,

Welcome to the message board Has your Mom had blood work done recently? B-12 and thyroid deficiencies can contribute to lethargy. The good thing is, both of those conditions can be treated. Hope this helps some.

Cindy

Hi Joan

My mom was diagnosed wiht AD 4 years ago too and was put on Aricept at that time. When she was diagnosed, she had been complaining to her doctor, who she still visited on her own, driving herself, she was complaining of forgetfulness and getting lost in the parking lot. He gave her Aricept and a video on AD. He also gave us a referral for an in home caregiver. I started having the caregiver come in during the week, although my mom was very uncomfortable about it, said she didn't need it, didn't want someone there.

She she started dutifully taking the Aricept. She steadily got worse in the sense of being not just forgetful and confused but also out of it, spaced out, and three months later, i was taking my mom and her caregiver to visit assisted living places because it was clear she couldn't be at home alone anymore.

At the interviews at the two assisted living places we visited one day, my mom was not a part of the conversations. That's so unlike her, she loves to be a part of things, she loves attention, and she's a good coversationalist. But she just sat there in silence, politely on the sidelines, while the rest of use talked about things. She had no idea what we were talking about and she didn't try to join in, not like her at all. She always used to read about things and always had something to say.

At the second facility, the director/owner of the place was an RN. As we sat and talked, she mentioned in passing, not referring to my mom, but just sharing her general knowledge about dementia/AD, that the anti-Alzheimers medications sometimes had the opposite effect on people. Suddenly things fell in to place in my head, the way she had steadily gotten worse after she started the Aricept and i had thought it was just the AD progressing on its own. I stopped the Aricept that day, and within a very short time, a day or two at most, she was her old self again, forgetful, a little confused, but not almost comatose and out of it. Her personality came back. It was amazing.

She continued to live on her own for three more years with a part time caregiver, she continued to drive for a year or two after that. She had an active social life with old friends taking her places, which she enjoyed, although over time she became less able to know what was going on. but she lost her cognitive functioning very gradually over those three years, finally becoming unable to be on her own anymore this year, in January.

But even now that she's in a long term skilled nursing facility in a dementia unit, she is still that energetic conversationalist, she always has things to say, lively, imaginative, and loves participating in whatever is going on around her, even though her idea of what's going on may be very different from reality. She continues to have that personality spark, and she is active, maybe a little too active, they give her medication for that.

So, at least in her case, the only time she's ever been lethargic and out of it and unable to participate in conversations was the three months she was on Aricept. If not for the fluke of that woman saying in passing that Alzheimers medications could sometimes cause what they are supposed to be preventing, i would've just thought it was the AD progressing and she would've lost her independence and her ability to enjoy her life 4 years ago. It's an amazing thing to think about.

This happenedto my dad on all the meds for AD--he got worse in many ways. So I'll keep him just the way he is

my mom had something like a panic attack on Aricept. but i do have her on Namenda and Remeron. has anyone heard of trouble with these?

For a long time after the Aricept, i would not let my mom be put on any more alzheimers medications, she was between doctors anyway. Then she got a doctor I trusted who put her on Reminyl or Exelon, i don't remember which, but it gave her vivid nightmares or dreams that left her very confused about whether it was day or night, and so we took her off of that right away. The other one, Reminyl (or maybe Exelon, i don't remember which was which), had a problem too, can't remember what it was.

But she was put on Namenda and i saw no sign of adverse reactions. I didn't see any sign that it was helping either, who knows. But at least it didn't seem to hurt her. When she first started falling apart in January, the doctor took her off it since it wasn't helping and she hasn't been on any alz meds since then.

My mom has been on Remeron since around April. I don't know whether that's doing anything to help her either, they are giving it for sleep, but she is still awake in the night a lot. They increased it but it's not clear whether it's making any difference. It's an antidepressant but they agree that she is not depressed. They are giving it for anxiety. She isn't that anxious either but they hope she will sleep on it at night.

When she first came to the nursing home in April, she was on Seroquel, low dose, it was prescribed because at the board and care and at the hospital, she was up all night, disturbing other patients. The SNF immediately took her off of the Seroquel, saying she didn't need it. She was also on the Remeron when she came in and they didn't stop that.

My mom has some of the same problems like sleeping late, won't do much but watch tv & can only follow very short conversations. For my mom part of the problem is heart problems & age related (89), and part is AD and/or medication related.

After living w/ her about a year I slowly convinced her to go for a drive w/ me to pick up her Rx & now we go for very short drives 5-6 times a week. But NOT in pm traffic because it's so scary for her to see cars moving fast, changing lanes etc. Learned that one the hard way.

I don't know if your mom has any other kind of health problem that might be making her extra tired or sleepy. It could be the AD. You might speak to her DR and ask if changing the time that you give her Aricept will do any good. We tried it for a few months on our DR advice to see if it would help my mom get her days/nights back to normal. So/so result tho.

Don't know if you've read any Alzheimers books yet but I always recommend "The 36 Hour Day". You might get some good pointers on communicating w/ your mom. At this point my mom can only follow a short sentence before she closes her eyes I guess to close me out? You may have to adjust the way you relate something to your mom as well.

Anyway I don't know what stage your mom is in so I don't know if you might want to have her seen by her DR just for a checkup, blood pressure, listen to her heart etc.

Take Care

If you can locate and afford a good adult day care, I HIGHLY recommend it!

My mom's diagnosing dr. (in Chicago - 3 hours from where my mom lives) suggested finding an ADC where they'd encourage my mom to think of herself as a "volunteer." I thought, yeah sure. We're going to be able to find that, and my mom's TOTALLY going to buy it.

Well, we did, and she did! I could not believe it. It's sometimes a bit of a struggle to get her motivated to go, but she really likes it when she's there. It's far more structure than I'd ever be able to provide, and they're really good at giving her a sense of purpose. It's kind of pricy, but well worth it to us.

my mom took Aricept and Namenda since 2003 and she did very well until the past year. It seems to affect each person differently she is still taking both and I don't know if she had not if the disease would have progressed faster or not. It seems so hard to know wether to give meds or not. There doesn't ever seem to be any exact answers to anything with this disease and no sure fire way to know what is best.

Any tips on how to get my mom to go to a day care center? at 88 she feels scared around strangers and even dr apts are a real trial. i'd given up hoper on getting her to day care.

i'd appreciate any ideas.

[quote]Any tips on how to get my mom to go to a day care center?[/quote]
Sandre,
With my sister Edna, I took her for a short time at first, and stayed with her, getting involved in the activities. That way, she got to know the people and become familiar, with me there as a lifeline. After about a week of that, I asked her if I could leave her there while I went to a meeting. She stayed by herself ok. Then I gradually stayed away longer and longer.

Sometimes she decides she will not go again, when she gets offended at what someone does. I usually let it go for a few days, then tell her she is needed to volunteer there. When she sees the people again, she is usually ok. I'll stay with her again.

I try to stay at least a few minutes each time, both coming and going, not just drop her off or pick her up. Periodically I will stay for an hour or so.