Assessing over medication - 30 days?

WorkWithWhatYaGot

My mother, 75, good general health, except for blood sugar and a neuropathic type pain. 

It doesn't seem like peripheral neuropathy, I wonder if it is some sort of post-stroke pain or just a dementia symptom.  

Dx in late December with EOAD, stage 4.2. I was told stage 4 lasts about 2 years and since she may have had a stroke, to get ready for possible sudden changes.  She's very resistant to medical care, was able to hide her problems quite well so I have no idea when stage 4 started. 

Her BMI is low, just under 19, I think.

She has taken Depakote for about 2 months.  It was prescribed by a housecall physician whose practice specializes in older patients, many with dementia. It was suggested as a way to reduce anxiety.  It seemed to do that, which also helped with her appetite.  It has also helped her sleep, which has helped with the pain, which is intermittent, sudden and fleeting. She started this med during a respite/trial AL stay.  

The first month was the smallest dose, at night.

Added a morning dose at the 1 month mark.

The med improved her sleep and reduced her anxiety. The first week on the high dose, she was enjoyed dining with other people, even a little chatting. The second week on the higher dose was a very good week. She allowed some personal care ( a haircut!, a "bath" with wipes - the first since late August.) 

The next 2 weeks saw a decline in her ability to stand, even more unsteadiness in her walking, and her first failure to recognize me, her daughter.  That was a very brief episode, and she knew it was happening almost at once.    She's also had some very clear, fluent conversations when she seems calm and relaxed. She's had some childlike pleasure in ice cream; notable since she doesn't generally eat sweets.  

Plans to move her back to AL (or MC?) are underway; her home does not have a full bath on the first floor. 

In general, I would say that her progression has seemed faster than average from the start of my active involvement.  She doesn't line up well with what I read in the books, but does line up with the posts here that use the phrase "rapid progression." Frankly, I'm not sure I will finish reading the 36 hours book in time! 

I had marked my calendar to check on this med at the 30 day mark.  Is that about right? I think I read it somewhere, but now I don't remember where.  

It is my job to ask the questions. I think what I am seeing is progression, but could it be overmedication? What would indicate overmedication?   I need to know because we are also considering trialing a second med as the neuropathy type pains are not getting any better and are a really big quality of life issue.  

May flowers

For my FIL, “sudden” declines in abilities almost always was a result of medicine or UTI.

In our case, the med definitely made him more compliant and pleasant, but also made him more confused - he could not stand, walk, feed himself with the meds they had him on. His balance, and remembering how to put one foot in front of the other were just gone. Off the meds, he is more combative but also some of his abilities returned. 

We think he is battling a UTI at the moment because in the past few days he is more combative, hyper vigilant, restless, scratching, chewing his tongue, refusing to stand with us, but trying to get up constantly on his own, hitting, kicking and can’t seem to get comfortable. He was sleeping a lot during the day and now isn’t sleeping at all. The hospice nurse is coming in today and I will talk to her about it. Again, this is a “sudden” change. Everything is gradually declining anyway so it’s not always easy to know but it is more of a day on/day off. We’ve had a string of rough days now…

harshedbuzz

WWWYG-

It's hard to say. But keep asking questions. 

The numbers rates of progression published are typically based on averages for Alzheimer's in people over 70. Younger onset sometimes progresses more rapidly than in an older person. Sometimes people are diagnosed with one kind of dementia initially when it's a different kind; ALZ tends to progress in a steady decline while vascular dementia often progresses in a series of steeper declines followed by plateaus. And many people with dementia have mixed dementia with Alzheimer's and Vascular being the most common combination. If she's had a stroke, VD may be likely. Diabetes also raises the likelihood of VD. 

I would ask the prescribing physician about the dose. It is possible that it built up in her system and the current dose is too high. It could be she needs a half-dose to avoid this. Or maybe she'd do better on one of the atypical antipsychotics like Seroquel or Abilify. Were I deciding, I would want to get this sorted out before adding a medication for neuropathic pain unless the doc feels one medication might address both pain and anxiety- something like Cymbalta. 

HB

jfkoc

It seems like there is no adverage for this disease. EOAD is a diagnosis for persons under 65 so please do not compare her to any progression related to that.

Regarding drugs...my pharmacist taught me to research every one prescribed and OTC before buying for side effects and interactions. I use drug.com but there are other sources online.

If you are comfortable using the house Dr then by all means discuss what is going on with them. It could be that the dose needs to be reduced. You could be seeing progression, overdose or another health problem.

Some much of this journey is calculated guessing. Your daughter is fortunate to have you looking out for her.

I hope you will keep us updated...

abc123

Hello and Welcome to "US"! I'm sorry you need to be here but you will learn many things from experienced caregivers. First hand knowledge! I have learned more valuable information here than from any doctor. I am not downing doctors by any means, please don't get the wrong impression. Read as much as you possibly can, ask questions, vent, rant and rage when needed. Trust me on this, we care. Also, there is always something more to learn when it comes to this awful disease. 

Judith mentioned something that I will comment on because I was surprised that your mom was diagnosed with EOAD at age 75.. She said that EOAD is a diagnosis for people who are 65 or younger and that's what I also thought. I would certainly ask the doctor about that. I'm curious as to why the doctor said that. Please keep us in the loop about that. I hope others will share their knowledge about it also.

Because you are so new to care giving I feel its important to point out that each PWD (person with dementia) is completely different. An example- my grannie and my mother. Grannie died from ALZ at age 94. She had issues that momma never had. Grannie would lock us out the house in a flash. She was an exit seeker. She constantly unplugged every electric appliance in the house, TV's, cable boxes, the toaster, the coffee maker, lamps. If it had a cord, she unplugged it. We had to monitor what she watched on TV, especially the weather channels. My momma was easier to care for in many ways BUT she did have her own set of problem issues. She absolutely would not bathe and her hygiene was a huge problem for about 3 years. Your mom is fortunate to have you in her corner. I wish you both good luck. Please keep reading the post here and keep posting.

Quilting brings calm

Since early onset means dementia prior to age 65, it’s possible that the poster means early stage - as in mild dementia, at the beginning of this long process.   In which case, the average duration of mild dementia - Alzheimer’s is said  to be two years. Although that is just an average, every word on is different. 

My mother has a burning/numb  sensation in her feet.  It’s most likely neuropathy - her PCP described it to her as as her brain is forgetting to talk to her feet. We had an appointment at a neuropathy clinic, but mom cancelled it that morning as it was too cold ( and a light snow).  Fad didn’t want to take her and I couldn’t take her..  Took 5 months to get that one, the next available one is December.  Thankfully, her feet look fine, color is good, and she had quit complaining about the sensation.  

WorkWithWhatYaGot

update - the GP (who makes housecalls) says this is not overmedication as the lethargy isn't constant, it does "wax and wane."   She is more active on sunny days, for example. 

Since the pain relief from the Depakote has been partial; he proposes a trial of Neurontin and now that she is somewhat less resistant to the idea of medication, a trial of Aricept and Namenda.   (I'll start a separate thread on this topic.) 

re: staging.  It is quite possible I misunderstood or am misremembering something. This was 2 days before Christmas. I do remember though, that he was trying to tell me that she has had something going wrong for a long time.  And looking back, I can think of some odd incidents as far back as 2010.  

The main point I remember him making is that stage 4 lasts 2 years on average and we needed to get started on research for the help I would need in stage 5. (I'm the only local caregiver option. I do have support from a distance for research, etc.). We took that very seriously, as we hadn't ruled out the possibility of a stroke or TIA.  

No imaging, just the MMSE, and then the SLUMS and MOCA. Her left hand is numb, that's the only stroke "evidence" we have.  I took one look at the trails test and knew she could not do that or anything with numbers or depth perception.  It took 2 months just to get her to see any doctor at all.  

Very appreciative of y'all's time and thoughtful input. 

jfkoc

• The Saint Louis University Mental Status Examination (SLUMS) test is a brief oral/written exam given to people that are suspected to have dementia or Alzheimer’s Disease. The exam serves as a tool to indicate whether a doctor should consider further testing to diagnose dementia.

The Montreal Cognitive Assessment (MoCA), developed in Canada in 1996, was intended to be a means of accurately detecting levels of cognitive impairment. The assessments in the test attempt to gauge areas of language, visuospatial abilities, memory and recall and abstract thinking,to give a representation of a person's current cognitive ability. 

Both of these tests are used to determine dementia. The problem is that there are many causes for dementia, some treatable. The diagnosis for AD etc follows a protocol which involves lab work at a minimum. In other words there is a process of elimination.

You can read about the diagnosis at ALZ.com shown at the top of the page and also on line.

Please rule out a UTI remembering that the "strips" are not very reliable.