Expert: Mary Gordon - 12/1/2008

Question
QUESTION: I recently put my dad in the VA home, which is excellent, because he was in assisted living with mom, he   weighs 220 so he is hard to handle now that he needs help with everything.  My questions is, and I have to say that your statement about the Depakote has answered part of my question. When I brought dad, 93, to the VA he became so animated, winking at all the girls, commenting on their hair and cloths, etc.  I was amazed and knew we had made the right decision.  My mom held him back when they were together at the assisted living place.  She does more and he became more alive.....until.....  I admit he is difficult when toileting and bathing and always as been.  They told me that alzheimers patients with mild dibetes have funny sensations in their lowere extremities and that Depakote can relieve these.  They said that maybe he had some pain when they were bathing/toileting and that's why he is difficult. ( I disagree, he is a private, modess man.)  I OK'd the initial dose of Depakote and about 1 1/2 weeks later they asked me if they could put him on Methadone for pain.  Again, I said yes.....he's like a zombie and they asked me the other night if they could give him an enema(sp) because he was constipated.  I got to thinking how he had declined on these meds and I called the next day and told them to take him off the Methadone.  It's been 4 days since they stopped that med and he's still a zombie.  It's like he wants to be like he was but he's so weak and sleeps constantly, he's stopped feeding himself, which he did wonderfully (that's why he weighed 220) and he responded to anything as long as it had to do with food.  So seeing him refuse food and drink is upsetting.  Do you think that the Depakote is causing some or all of these side effects, oh, did I mention that when they started him on the Methadone they increased the doseage of Depakote.  What should I do?  I know he's in stage 6, at least, but at least he enjoyed his surroundings, now he doesn't know anything.  Thank you

ANSWER: Hi Lucinda

Here is a link about depakote
http://www.whatmeds.com/meds/depakote.html

You will note it can cause dizziness, fatigue, asthenia (muscle weakness). It can also cause constipation. It does get used for diabetic neuropathy - I'm kind of amazed they put him on methadone for pain. Are they suggesting he is in pain from neuropathy? If so, has he had very poorly controlled diabetes for a long time? I ask because people with mild diabetes that is being looked after shouldn't have bad neuropathy - and if he's been in such pain for so long, one would have thought you would be aware of it. Its not something that would only happen when he was toiletting or bathing!

Here is an article about diabetic neuropathy
http://diabetes.niddk.nih.gov/dm/pubs/neuropathies/

My two cents - get them to back him off the depakote and see what happens. I understand that they must have been having agitation issues with him - not uncommon in mid to later AD, especially around bathing. If nothing else, they should back it off to the original dose, and see if he perks up. If not, I'd ask them to back it off again. After all, if he's a zombie, they can't claim the reason for the dosage is agitation.

And why methodone, which is something to be used with extreme caution in the elderly, particularly the demented elderly ? Depending on metabolism, the half life a dose can be between 18 and 97 hours - so it can be as long as four days just to get it all out of his system. The stuff can actually accumulate if they were giving him multiple doses (and the effects for pain don't last that long, so they usually use at least a couple of doses a day). If they really think he's agitated due to pain, there are a lot of other things they can try - trust your gut. You know him better than anyone. If you don't think this is about pain, you need to really talk to them and get a straight story.

Have you discussed under what circumstances he was getting agitated - I mean in specific - and what they have tried. Sometimes, something as small as rescheduling the bathing to a time of the day when he's at his best can make a difference i.e. if they pick a time of day when he might be hungry, tired, stressed from bustle and activity - he might have less rope left in the coping spool.

What kind of arrangement do they have in the bathroom - a shower chair in a shower? A tub? What was he used to in his earlier years?

Sometimes they just need a distraction, like some soft music or a washcloth to fiddle with. If he is modest, perhaps they can partially drape him with a towel and wash the top half and the bottom half one at a time.  

People with AD can be confused by poor lighting or by too bright lighting. by changes in temperature such as by being naked in a cold bathroom. The warm water jets on their skin can feel like too much  (nothing to do with the neuropathy, everything to do with the Alzheimer's). They can be upset by mirrors (they see their reflection and think its a stranger). Being rushed can be upsetting.

Have they tried other agitation meds?  

Time for a chat. Don't be intimidated by the medical staff. I know you want to have a good relationship with the home for your dad's sake but you are a smart cookie, and you have the advantage of really knowing him. Call for a little meeting with the care staff and his medical medical team and ask for some honest heart to heart, with a view to options and pros and cons. Clearly, what is going on is not right. In effect, its really a form of chemical restraint - they may not mean to be zombifying him, but if they don't realize this is drug side effects, they might not realize how different he was even a very short time ago.

Hang in there - you are allowed to tell them to discontinue certain meds. After all, no one has anything to lose by having him at least alert and able to enjoy some quality of life. The worst that can happen is they back off the depakote for a few weeks and he doesn't perk up - but I'm thinking its very, very much worth a try.

Hope this helps.

Mary G.

---------- FOLLOW-UP ----------

QUESTION: Dear Mary:

Thank you for your prompt reply, I'm expecting a call from the dr this morning in 1/2 hour, couldn't be better timing.

I agree with all you say about the surroundings of an Alzheimers patient and the simple thing that can agitate them.  Dad responds to slow, quiet, calm actions.  It's hard when there are so many to take care of and time is limited.

I will ask the Dr. this morning to start and decrease the Depakote, after I ask him why he prescribed it in the first place.

Mary I've been doing this for 10 years, and my mother is in such denial it's hard to cope with her at the same time.  I took her to see him yesterday early morning and he was sleeping in, which is fine, and he looked like he should be in a coffin and her remark was "doesn't he look wonderful?"  Do you know how hard it is to deal with someone that won't accept the facts?.....enough....thank you for your expert advice and I will do what my gut tells me.

Best regards,  Lucinda

Answer
Best of luck, Lucinda

I know how hard it is to carry on and do the right thing when others close to the situation are in denial. My mother in law could carry on a really great social conversation far into the illness.  We had a terrible time with many friends and family members who thought there was nothing wrong with her and we were being cruel and overbearing! It made our job that much harder to have so many unkind comments made to us from people who had no clue how impaired she was. Oh well!

Thinking of you. Getting older is not for sissies, is it. Hope the doctor has some answers and ideas for you.

M.