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In the past month and a half, I have seen some really big changes in Mom who has moderate/severe Alzheimer's. During the holidays she started having lots of rage, that finally simmered down and we also adjusted her medications. Also around that time, her best friend who lived across the hall in Memory Care passed away. What I have noticed is more confusion, more lethargy, shuffling and pitching forward when standing still. She hasn't actually fallen. She continues to go to the gym to work with her trainer 3 times a week, but the trainer says she's much weaker and tired out more quickly. Her gait and balance are so awkward right now, I would actually be worried about taking her for a walk in the park, which is something we used to do all the time. The head nurse at her Memory Care said we might consider reducing a dosage of one of her anxiety medicine's to see if that helps, so I guess for the most part that's all we can do. In three weeks we have a follow up with the neurologist, so I suppose we might get more info there too. It just seems like such a dramatic physical change to me... Anyone else notice this type of progression, and anyone else find out that it was actually medicine related vs. disease progression? Thanks!

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It sounds like the reduction in medication might have helped a bit. The various dementia symptoms can fluctuate some - our mother only occasionally has these "moving" episodes. If they cannot redirect her, THEN she gets the meds.

Even without the suitcase you mom can find ways to "pack up". The suitcase might just make the thought easier to pop up... As for the negative UTI - is it possible to request a urine culture? Sometimes there is a UTI, but so mild the usual tests miss it.

Having someone else who might inadvertently be "encouraging" mom in this moving business does not help!

Do they/she do this any time during the day, or later afternoon into the evening? Mom gets agitated in the evening when it happens. In the morning, she is fine. Is there any way for the staff to separate them somehow, at the times this usually happens?
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Reply to disgustedtoo
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Yes I agree with them. Talking to her doctor might help.
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Reply to natnatroswell22
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I think it's better to see her doctor if it is really because of the disease or what. It's better to not make any assumptions when we're talking about their health.
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Update: Mom's vision is pretty much the same as it was at her last annual check up. No macular degeneration, no glaucoma. She's been holding fairly steady until last week, a couple of days she sounded really confused, like she thought she had just moved into the room. Then on Friday, within a two hour window mid-day, she bonked her head right next to her eye. She didn't remember hitting it on anything, so nobody is sure if she fell down, or into a cabinet or what exactly. She had no other bruises that they could find, and no signs of a concussion. Since then she's been very confused and wobbly. I noticed today when I took her to work out.
The confusion ramped up this evening, and she's calling me every 5-10 minutes. (I quit answering after a while because it was obvious that me reassuring her over the phone didn't even last the length of the phone call.) She also had an incontinence accident today, so once again, we will test for UTI. She's been tested several times, but hasn't been positive for one yet.

I also found her suitcase pulled out today, all packed up with some odds and ends. So I emptied the suitcase and "took it to storage" for safe keeping. Now that she's calling me repeatedly, I'm wondering if I should have left the suitcase with her so she could have something to do with all the agitation and extra worrying.

The floor caregiver who knows her the best had a talk with me today and said she's noticed a lot of changes recently. It all sounds like progression of the disease...but what other things could it possibly be? I don't want to be neglectful, but how do I know if it's the disease or something else? These are the types of things that happen with the progression of dementia, so it's not like I'm out in left field, but what if I'm just making an assumption. UGH. I'll be curious to know the results of the UTI test.
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Reply to JJGood19
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Thanks for all the input. I should have noted in my original post that we actually got a second opinion on her medications by a well respected psychiatrist known for being an expert in pharmacology. He had a few tests run and suggested we change the form of one of Mom's anxiety meds, the new form is a bit stronger, so that's the medicine that we have decreased slightly.

She's on two memory medicines, one for rage & moods, two for anxiety & depression, and a low dose of throid medicine. She's been on 4 of these for the past 5 years or more, and the additional ones she's been on for a couple years with the recent changing of the form. I think we went from citalprolam to escitalprolam or visa versa.

So now that the dosage of that medicine has been reduced slightly and finally her body has adapted, I have seen a slight improvement in her gait and shuffling, although it is still there. I have noticed a tremor, but when the neurologist office did their assessment two weeks ago, they didn't bring it up. We discussed the gait and shuffling and medicine, and they decided to add physical therapy.

A new resident has moved into her "neighborhood" in memory care, and all this lady talks about is leaving. NONE of the others do this like she does, but she's constantly complaining about being there and talking about moving out, and she's latched on to my Mom. So, now Mom is bringing it back up every day.

She wants to move in with me, she says, and she'll pitch in with the house work or do all the cooking and cleaning she says, as she tries to sweeten the deal. She has NO IDEA how miserable we both were during the 6 weeks she lived with me. Makes me sad.

Next on the medical agenda: eye check up and watch that tremor....oh, and she's negative for UTI, and was having regular eye check ups until this year (my bad.)
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Reply to JJGood19
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Check the eyes and soles of the feet. If any black marks or floaters, have medication changes made! Dr Coppertino
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Reply to coppertino
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FWIW - recently our mother had a "meltdown" on a Friday evening where they could not redirect or refocus her for hours. By the time I got there, she was finally in her room with a magazine. The next day around 3 she called and was confused as to where she was (no such calls in MANY months!) Since she has always been easily redirected, I suspected UTI and was right (thankfully we had an appointment that Monday.) Rx was called in for that, but doctor was not receptive to asking for anti-anxiety meds, just to have on hand (no doc access nights and weekends!!!)

It took many attempts and my final post to the portal account was successful. I told her I am NOT a fan of medications and would NOT want this to be a regular medication, just to have in case of situations like this. I summed it up with how it is not fair to mom, the staff or me (didn't post it, but the other residents as well) to have to deal with something like this because it generally happens after hours and/or weekends when we would have no access!! This is one kind of medication that does not take days or weeks to kick in.

That said, she indicated she is prescribing a very low dosage due to fall risk, so yes, it may be that your mother needs a lower dosage or a different medication (if any at all.) However, it is best to have her thoroughly checked out to ensure it is not some other medical issue. If nothing is found medically, then definitely have them work on the medication change, either dosage, change or elimination.
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Reply to disgustedtoo
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You should definitely get her medication list assessed. Anti-anxiety meds for elders can make them too lethargic. Yes, do get her vision checked, e. g. macular degeneration, cataracts or glaucoma.
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Reply to Llamalover47
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Go to your pharmacist and get educated on each and every drug she is taking - ask for print outs on side effects - that way when you see the specialist you can have a better discussion - most likely the dr will listen you better for your initiative because you have taken time to do something positive for your mom
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Reply to moecam
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Have a urinalysis to macroscopic test performed and check calcium levels. NO COFFEE!
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Reply to coppertino
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For whatever it may be worth:the shuffling and balance issues sounds like my FIL with Parkinson's, and statin drugs can cause Parkinson-like tremors,
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Reply to partsmom
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Donepezil gave my mom many side affects too. Mixed in or causing UTIs and dizzyness, irritability etc. Resuted in a broken leg too. Finally the Geriatrition removed the memory med Donepezil and its been smooth sailing gratefully.
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Reply to daughter4mom
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Sounds like you have figured out a variety of causes. You don't mention which meds she is on. Any med can have side effects and even younger people can have one of the "rare" side effects...an older person as you know metabolizes things differently, plus the combination effect. Maybe a gerontologist can provide a better overview of the situation and hone in on the cause(s). It could be a cumulative effect of the drug(s), and the added insult of loss.
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Reply to robinr
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Poor thing. And the blow of losing her friend. I hope you can find some improvement by talking with her doctor about the meds, it seems the grief could be playing a part too. I hope she gets to express that. Well wishes to you and her, jj.
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Reply to Zdarov
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Sudden chAnges need to be reported to her doctor. As FF said she needs to be checked for a UTI or other infection that is treatable. Meds may need adjusting. Maybe she had a mini-stroke, TIA. Could be any number of things. Get her checked out.
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Reply to gladimhere
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JJ My wife has had Alzheimer's for nearly 8 years now. But the first 5 years or so, her doctor had her on 23 mg's Donepezil / Aricept. She was sick with all kinds of problems for years, especially urine infection. Even moments of passing out. Finally I got her to a different doctor of internal medicine. Amazing, that he discovered and proved, within 40 days, she was having a bad reaction to Donepezil, even with very low dozage. He prescribed Nomenda instead. Unbelievably, she has not had 1 single sick day in 3 years. She lives with us, here at home. She is very easy to care for.
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Reply to bhutline
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JJ, the nurse [with doctor's approval] could expedient to see if the anxiety med is making your Mom feel too tired. Also, if your Mom takes blood pressure pills, that can zone someone out [it did me] until the dosage is adjusted. Then this way everyone would know if it was, in fact, the meds... or if Mom's memory issues are increasing.

Ask the nurse to run an Urinary Tract Infection test. Sometimes a UTI can cause all kinds of different symptoms.

How is Mom's eyesight? If she hadn't been to an eye doctor in quite some time, eyesight issues can cause balance issues in some cases. My Dad was complaining about double vision which caused him to be unsteady.... once a prism was added to his prescription glasses, it was a big help.
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Reply to freqflyer
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