Dealing with the madness of Dementia

Dementia in your Elder can be maddening for you for many reasons: the Elder doesn't know s/he is confused or forgetful; you can't reason with her/him; s/he is very stubborn and doesn't understand the word "no"; there is no rhyme or reason to the things a demented elder can come up with; you are afraid to leave her/him alone because of her/his altered reasoning.

How does the Elder deal with it, and is it as maddening for her/him? I've never been able to get this answer. I can only imagine.

In all my years of working with elders dealing with dementia, I always wondered how and what they thought of the world and the people around them. I mean, think about it. How do many people act when relating to a demented person? They may roll their eyes a lot. They often throw up their hands, or at least make a lot of hand gestures. They keep repeating phrases like "I already told you.....", or "why can't you remember......?" They tend to become very frustrated and angry. They think the Elder is doing this "on purpose". They tend to think the elder is lazy, and sometimes even stupid. Then they start treating the elder like they are lazy or stupid. They can even start yelling, cursing, and name-calling. They begin to feel very guilty about this behavior, but seem powerless to stop it.

If you are caring for a demented loved one, sometimes this behavior comes out of the blue. You never knew you had it in you to be this way. Your behavior then becomes an issue, along with the dementia your Elder is trying to deal with.

So, how do you deal with this. First, promise yourself to never feel guilty. If you are caring for a beloved Elder, take heart. You are doing a very important and loving thing.

Start a new day. Take a deep breath and try to relax. Your Elder may still be demented, and still be doing, saying and thinking some weird stuff. But you do have the power to deal with it.

Remember this. Your Elder can't help it. Brain damage is devastating for everyone. And if there was any way your Elder could think and act normally, s/he would. It's not personal, so never take it that way.

If you are lucky, your Elder may be "pleasantly confused". This is often not the case. Very often elders know there is something wrong and try very hard to fight it, or hide it. And sometimes the harder they try, the worse their behavior can get. You need to be able to reassure your Elder that you understand, you are there to help, you will never judge or make fun of her/him, and that it's not her/his fault.

Here are some simple pointers that may help you, and your Elder, maintain some sanity:

• Establish a daily routine and stick to it, always. Everything needs to be done the same way, at the same time, everyday. Some things can be on certain days (like showers, since most elders don't need a full shower every day). Some days can be different because there is a necessary event going on, like a doctor's appointment. These things should be talked about and prepared for days in advance. Give your Elder plenty of time to adjust to the new event. Infrequent visits from friends and family can be handled the same way. Contact everyone and ask them for no surprises, please.
• During the days activities, whether eating, dressing, toileting or bathing, constantly give cues and reminders to assist your Elder. This is also a good time to give reminders about safety also. An example would be: "I'll be right back, remember not to get up from the toilet by yourself." You need to always use the same words. It may get boring for you, but this will help your Elder more than anything else.
  
• As much as possible, have people come to you and your Elder rather than taking your Elder out. Haircuts and manicures can be handled this way, as an example.
  
• Away from home activities are great if your Elder enjoys them. With dementia, the Elder will enjoy them more if they are part of the routine, which doesn't necessarily mean every day.
• Be very careful about changing any medications. Talk to the Elders doctor about this at length when changes are necessary.
• Keep your Elder well nourished and well hydrated.
• Anticipate your Elder's needs, and take care of the need before your Elder actually needs it. (examples would be toileting, extra clothing or blankets, drink of water, etc). A demented person may forget to ask, or forget how to ask. After a while the need can become an emergency in the mind of the Elder and odd behavior may result.
• Validate your Elder's feeling. This is especially true when your Elder is delusional. There is a fine line between the need for reality orientation and the need for validation of feelings. Try to know the difference. There are times when delusional thinking is difficult or impossible to alter, and trying to do so will only result to anger and confuse the Elder further, which in turn could result in problem behavior. Try to "agree" a lot, and "understand" how your Elder feels. You may even need to play along with the delusion to steer your Elder away from it with distraction. An example would be a belief of your Elder that s/he is getting ready to go on a trip. If it doesn't hurt anything, let her/him "pack" or whatever. While playing along, distract her/him with another idea (like playing a favorite game, going for a walk, having a cup of tea) and more than likely the delusion will be forgotten about. A note here: if your Elder is frequently delusional and especially if these delusions are distressing, you need to talk to the Elder's doctor.
  
• Try to keep the surroundings clean, uncluttered, relaxing.
• When you do need to have an important discussion with your Elder, plan to do it during the time of the day when your Elder is at her/his best. For most elders, this would be in the morning, probably after eating. Demented people tend to get more forgetful and confused as the day wears on.
  
• Always, no matter what is said, done or thrown: treat your Elder in a respectful manner. Sometimes you need to pretend that it is perfectly normal for everyone to be forgetful and confused. Give your Elder cues and reminders in a respectful manner so s/he never feels belittled or stupid. Your Elder will probably depend on you to be the "rememberer", which can be challenging at times. (I take notes) :)
• If your Elder becomes very angry, starts yelling and/or cursing, or other things, try to back out of the situation quietly and let the Elder calm down. If you can not leave the Elder safely, then just stop talking. Trying to talk your way out of the Elder's anger will only make it worse. Distraction sometimes helps, but you need to try this well before the person becomes irate.
  

If you do well, you and your Elder will have many pleasant days with less confusion, less distress, and less problem behavior. Your Elder will come to trust you to just take care of things. At least most of the time.