Alzheimer's Disease

My father died of Alzheimer's disease, now known as the leading cause of dementia. This disease continually disables more and more brain function, and slowly kills its victims. There are currently no known preventions or cures. Medications may slow the decline for some people, but will not stop it.

This is one of the toughest issues I've ever dealt with, similar in some ways to the death of my Mom (colon cancer at the young age of 73). Alzheimer's is said to be death a day at a time; other people say this disease impacts the family members even more than the patient.

Here's some things I've been learning:

1. You are not alone. Learn from others. Attend care giver group sessions, and/or have you and your siblings meet with a social worker who focuses on care giver issues.
2. Do not get mad at your parent when they do "irrational" things or when their behavior seems odd. It is the disease, not them.
3. Even when your parent starts to lose some cognition and short-term memory and communication skills, they are still your parent, still a person, and still have some strong cognitive ability and often still have strong long-term memories. At the earlier stages of the disease, your parent will know they are losing cognitive abilities and it will be frustrating and scary to them-- let them know you understand and value their thoughts, and that you have patience even when they can't always immediately communicate the right thing-- do not give up on them.
4. If your parent does or says something irrational, do not argue with them, as your logic might not work, and might not be remembered tomorrow or even in five minutes. And do not correct them when not necessary-- why bother agitating them and making them feel bad? Your goal is to reduce their anxiety. Show compassion for and acknowledge their feelings, try to address the issue in a very simple way, and then if appropriate switch topics to something with less stress.
5. When you visit, always bring something with you that you can use to talk about. For example, bring some pictures from a recent vacation, or bring (if in a nursing home) a cell phone so you can help your parent make phone calls to friends and other family members. Having something with you to talk about is useful when you need to change from a stressful to less-stressful topic, and in general can make visits more enjoyable for everyone.
6. Have a sense of humor, learn to laugh, so you won't always have to cry. (But crying is good too.)

If your parent is in a nursing home:

1. Get to know all of the staff and volunteers, always introduce yourself, say hello, be cheerful and try to help them if appropriate.
2. Do not ever tip the staff, as that is probably not allowed, and is very unfair for other patients who might not be able to afford tipping. If you really want to help the staff, do it in a group way that does not single out the giver or recipient. If you want to single out a recipient, just write them a card thanking them for their help.

To see the latest information about possible preventions for Alzheimer's disease, use Google to search news, web and usenet.

See Alzheimer's Association website for lots of great information and resources.

Some films; you can probably rent these from your local Alzheimer's Association:

• & thou shalt HONOR, as shown on PBS.
• Complaints of a Dutiful Daughter