When The Doctor Says, "Alzheimer's"

WHAT YOU NEED TO KNOW What works for one Alzheimer’s patient is no guarantee that it will work for another. Practice patience, backing off, being embarrassed, and keeping quiet. Try not to rush your loved one. This will upset him, so give yourself extra time when you are trying to meet a schedule. Don’t talk to others as if your loved one is not there. Keep him part of the ongoing process of life. If he needs extra time to converse, give it to him. Forget logic, reasoning, and fighting back. Learn to lie to smooth things over for both you and your loved one. Your nose won’t grow longer, you won’t be punished. You don’t have to explain facts like, “Your mother died long ago.” You can say, “She’s at the market. We’ll see her tomorrow.” Lying to an Alzheimer’s patient is usually a kindness and they need kindness more than honesty. The caring caregiver will practice this. Don’t ask questions like, “Do you want your breakfast now?” Instead, announce, “Breakfast is ready.” Answering questions confuses Alzheimer’s patients. Understand that ‘no’ can mean ‘yes,’ ‘you’ can mean ‘me,’ ‘he’ can mean ‘her.’ Learn to agree no matter how outrageous the situation may be, stay flexible. Apologize for whatever upsets your loved one, especially when it’s not your fault. Never tell your loved one that he is wrong—even when you know that he is. Remember to take care of yourself, don’t strain--keep your back strong. Don’t be a martyr--it’s highly overrated—besides, it can kill you. Take all the help you can get. Choose your battles, don’t sweat the small stuff, and keep focused. Knock off the guilt, it impedes your ability to function, and none of it is your fault. No one has total control all the time. Even Superman gets laid low by kryptonite. Keep phone numbers handy for your local police, ambulance and fire department. If you phone 9-1-1, be sure it’s for a valid emergency. Find and join a face-to-face support group. Go to on-line message boards and chat rooms. Remember that a vow, promise or wish to care for someone doesn’t mean that you have to do it all alone all the time in your own home. Sometimes professional care is best for everyone and it still fulfills your vows. Develop a daily routine for your loved one and stick to it sequentially as much as possible. Time means nothing to an Alzheimer’s patient, so the sequencing is more important than the timing. Prepare to set aside your own preferences, friends, and activities. You will no doubt yell at your loved one, but keep it to a minimum. Try not to raise your voice. It will confuse him, make him challenge you and scream back. Be ready to rearrange your house and the schedules of all family members. Get rid of all guns--no excuses. When your loved one won’t do what you’ve asked him to do, walk away for a few minutes, then come back and try again, and maybe even again, he needs time to process your words--and maybe he’ll never get it. Repeat instructions simply, slowly, word for word in the same tone. Changing the words changes the message and confuses him. If your loved one gets angry, leave him alone, he’s frustrated, unable to understand what’s happening. Don’t escalate his frustration by arguing with him, it will only make matters worse. Don’t hang onto something that is making your loved one angry, change the subject, don’t keep spinning your wheels. What worked on Monday may not work on Tuesday. There will be times when nothing will work. When you do everything for him and he turns on you, it’s hard not to take it personally. Cry--it cleanses your system, releases tension, and you’ve earned it. Laugh--really, it’s OK--sometimes things are just so darn funny. Caregivers need a long time to understand and learn these things. Don’t despair; no one ever gets everything right all the time. It takes practice, experimenting, trial and error, incredible patience, and not being hard on yourself. The disease teaches you as you go along. Caring for someone with Alzheimer’s will try your soul, not to mention your physical, mental, emotional, family, social, financial standing and everything else. You will think, say and do things that never before entered your mind. But YOU ARE NOT ALONE. You are on a well-traveled road that will be easier if you accept directions from those who have gone before. There is a wealth of free information available; much of it is listed on these pages. Take advantage of it. It is important to realize that caring for an Alzheimer’s loved one is not the same as caring for someone with the flu, coming out of surgery, or with a chronic physical problem. While these are all difficult challenges, it is the inability of the Alzheimer’s patient to understand things, to make rational judgments, to help in his own care that makes caring for someone with dementia a whole different matter. In most cases, you will be doing it all alone—no matter how many times someone says, “Call me if you need anything.” Please remember, as you go about caregiving, if you have not been trained as a professional nurse, you cannot become one simply because that’s what your loved one needs. Taking care of yourself is primary, and in most cases, your loved one will be OK, whether or not you sacrifice your own health to Alzheimer’s, thinking you are the only one who can suitably care for him. You, your life, your own well being are every bit as important as that of your loved one. It has been said that denial is more than just another river in Egypt, but it flows through Alzheimer’s publicly and privately with the breadth and depth of the mighty Amazon. There’s no law that says you have to tell it to the entire world.