Expert: Mary Gordon - 12/2/2008

Question
My Daddy has multiple problems, including senile dementia, Parkinson's, a history of stroke 5 years ago, and macular degeneration which makes him essentially but not totally blind.  We have 24/7 care for him now - he was wandering off & falling & injuring himself.  He's had several bangs to the head from some of these falls.  He drools a lot, has had increased difficulty swallowing, uses a walker to get around, and is very mobile.  Always feels "trapped" sitting in his lift-chair, wanting to do "something" with nothing to do really.  Always wanting to get up all the time.  Incontinent, wears "pull-ups" constantly.  HUGE b.m.s or diarrhea. condition's gotten progressively worse.  He has many delusions & is obsessive-cumpulsive to the max.  I don't think he's hallucinated much recently, but not sure.  Because of his blindness, not sure if it's his eyes or brain that make him unsure of "who" is there at first.  He is 90, Mama is 87 and somewhat frail.  I am the primary caregiver of their 5 kids, and have stepped in and managed to set up the total time coverage of care-givers to step in.  When no one can come, I do duty, sometimes for over 24 hours, or days, etc.  My brother, a doctor, handles the finances and paperwork.  I do all the domestics & shopping, but the caregivers help a lot around the house with cooking & cleaning & tending to Daddy all the time.  I did set up a chart system that we all write in to note what's happening with him, including his meals and medications, problems, etc.  This helps us all to keep track, and the next shift can catch up to what's happening.  He's getting excellent care, and it's all been a learning process for us all.  I started from scratch, and had to set up a working system.  We also keep a calendar to note the (various) hours for each person's shift.  People need some time off here & there, of course.  I don't want them getting burned out (like I have at times).  Mama got injured 4 months ago & I stayed there steady for 2 months after that, and she has resultant nerve damage to her right hand, which has added to the difficulties they have.  I'm still over there a lot, but trying to "catch up" still on my own life, so I lead a double life.  My main concern at this time is that Daddy has become increasingly hostile as of the past couple of weeks or so, which makes me feel kind of helpless.  I've done so well with him for so long, and this new development is disturbing & I'm worrying about him hurting himself or me or the other girls.  I got scared for the first time the other day when he got violent with me & I had to block the door, keeping him in the house AND off me!  He was mad & determined to go outside to feed non-existent cows & I had to keep him in the house.  I had to call my fella to come over to protect me & help calm him down, which he did.  The episode lasted for hours, & my brother interceded as well, which helped.  I feel this will become worse & am thinking we're going to have to strap his arms to control him, which will upset him and us too.  I've never been scared of him before, and have been so strong through all this, as I've had to be.  Now I'm worried & not sure what to do.  Please send me any advice you can.  I very much appreciate any help you can offer.  Thanks. m

Answer
Wow Melanie, you have your hands full - and you are doing an amazing job. I hope your family appreciate you - you are a hero!! I'm sorry I was slow getting back to you.

If your dad is getting aggressive and agitated, it might be time to talk to the doctor about some medications, which sounds scary, but they CAN help a lot. Its one thing for a 35 pound toddler to have a tantrum, its another thing entirely when its a grown man, even a 90 year old, who can hurt others or himself in the process. Never mind make his caregivers throw in the towel and quit!!

There are several you can consider trying, and you can discuss with his doctor. I don't know what the official cause of his dementia is - and it does matter whether his dementia is from Lewy Body disease, the Parkinson's, Alzheimer's etc. since drugs that help a person with one cause of dementia can do nothing for a person with another cause, or even harm them.

I also don't know what medications he is currently on. Alzheimer's drugs like memantine can sometimes reduce aggression and agitation. Exalon is a similar drug, developed for Alzheimer's but also used for people with dementia from Parkinson's.

Sometimes, anti-depressants like citalopram work wonders.  Anti-psychotics like respiridone are often helpful - not just in reducing agitation and aggression, but delusions, such as your dad's "cows" that need feeding.  Even a short term sedative can be helpful in certain situations.

For example with my mother in law, there were a few times where she got very agitated and upset, and no one could figure out what had set her off - and we also couldn't get her calmed down. She was miserable, her caregivers were distressed, and we gave permission for some short term sedation just to get her through it. We certainly wouldn't have given her that regularly, but for those rate occasions, it helped.

This is a situation where you really need help from a doctor who knows your father's medical situation, the drugs he's on and also, who knows something about the behavioral and psychiatric issues that can go with dementia. You need to talk through what you are seeing, and be willing to try a few things. The doctor should work with you to come up with some ideas that will be right for your dad.

Don't give up if you have to try a few different medications. Not everything works for everyone. Some people with have bothersome side effects that make it not worth continuing, such as making him too drowsy or floppy, which is dangerous. Some of the drugs have annoying side effects that can go away within a few weeks, so you have to hang in. Sometimes you have to try different doses - you usually want to start with a low dose and see what happens. If it isn't working, try (with the doctor's guidance) gradually upping the dose. As I said, you might have to hang in there and it might take some time to find the right medication at the right dose to help - or you might find that short term sedation is the right approach if these episodes are only occasional.

I know you want him as calm and happy as possible, so he can enjoy the best possible quality of life possible. How manageable he is is also very important, since you and the other caregivers really matter in the equation. As you note, no one wants the caregivers to be stressed out or worse, burned out, because he has become too difficult or scary to deal with safely.

If he's still mobile enough to get out the door, I'd also suggest getting keyed locks on the inside of the door, so if he gets there before you can block the door, he can't get out.
I thought this "confounding door lock" looked nifty and simple http://store.nexternal.com/shared/StoreFront/default.asp?CS=ageless&StoreType=Bt...

Hope this helps.

You are doing a fantastic job, and I really admire you.

Mary G.