Last week I went on a bit about five basic principles that will generally make life a lot easier for those of us who are taking care of people with Alzheimer’s, or something else that looks a lot like it; from what you’ve told me, it helped – At least, a little – And most of us who live in that world will take all the help we can get, so today we’ll try a little more.
Remember, working closely with your health care provider – Talking and listening and asking questions – Is guaranteed to help! And learning all you can about the disease you’re up against is…well, remember this: Know thine enemy! You have tremendous resources and expertise available to you, and most of them are free, so if you don’t know where to look, call any of the numbers at the end of the column and good folks will help you find what you’re looking for.
OK, so, you’re a caregiver for a person with Alzheimer’s – 24/7 or a few hours here and there – And you want things to go well. Here are a few ideas (concepts, principles, do’s-and-don’ts) that will help, but let’s start here: Think about yourself (go ahead, we’ll wait). Most of how we experience other people (and, thus, our world) doesn’t come from the exact content of what somebody says – It comes from the tone, the volume, the body language, the expressions, the posture, the…expectations, that we “read,” whether we know we’re reading them or not.
We do; so do people with Alzheimer’s – Whether they know it or not. OK? Please remember that; so, what are some good things to do:
Smile and laugh – A lot! Be cheerful! Watch the volume and don’t go crazy, but be “happy.” Talk in soft, gentle tones and generally be warm and friendly. Praise what deserves praising and use kind words. Show appreciation, say “thank you” and GO SLOW: Approach your person from the front (You don’t like to be startled, right?) and establish eye contact. Right: That’s how I prefer to be treated, too.
Use short, simple words and sentences. Agree, even if you don’t agree, remembering that there are limits to what you can agree to and apologize, even if you didn’t do anything wrong. Remember what you’re trying to do here: You’re trying to provide CARE, so we want everything to be soft, mellow – Easy. Show respect, be consistent and do everything you can to help your person remain as comfortable as possible. Right.
Here’s one that can be tough, sometimes: Step into their reality. Arguing or correcting won’t help – If they could get it “right,” they would, so don’t worry about accuracy or real “reality” – It doesn’t matter, because they are where they are, so be there with them, because anywhere alone doesn’t feel good to anyone. ANYone.
This can be tougher than it sounds, particularly when your person thinks you’re somebody else. Here you are, knocking yourself out to help them be OK and they don’t even know who you are! Or that you’ve ever existed! Maybe you’re a complete stranger to them – It isn’t fair!
No, it isn’t and No: You don’t deserve that, but here you are and there they are, so correcting them – “Reminding” someone who can’t remember – Is pointless. Just try to be where they are, if “there” seems to be a pleasant place, and be grateful that they have a few moments of relief from what has become a very scary life. Maybe “there” isn’t so pleasant? OK, then try to distract them away from it to a happier place.
Getting resistance? Push-back? Don’t push back – Just back off and try again in a bit, because their reality changes faster than yours. And try to remember that your person’s soul – Their “core,” if you will, loves you and appreciates who you are and what you’re doing. A little faith can go a long way.
If you’re getting angry or frustrated, then you back off and breathe, and try again in a bit. Don’t argue or punish or confront or over-explain – Reasoning probably won’t help; if it would, then you wouldn’t be doing what you’re doing, right? Right, so don’t be harsh or directive or give orders, because all you’re doing is pouring gasoline on the forest fire.
Sometimes, you’ll lose it. You’ll get so tired or frustrated or hurt or scared that you “lose it” before you even know it! It happens. It happens to almost all of us, so accept that you’re a human being and doing the best you can out of love, so forgive yourself, back off and try again. Physical abuse is NEVER OK, but emotions come and go – Let yours ago. Alzheimer’s, in its own, horrible way, is generally very forgiving.
Don’t use baby-talk or talk in childlike tones, and never mock, mimic or laugh at your person, because they will feel it. Time out: Most of us who have lived (or are living) in this world know the difference between “laughing at” and “laughing with,” because laughter is a wonderful, sharing thing. How do you know the difference? If the humor makes your person “less,” then you’re laughing AT. Alzheimer’s caregivers laugh a lot! It’s mandatory.
Stay away from words like, “No,” “Don’t” or “Can’t,” and rely on distracting or redirecting their attention. Stay as positive and pleasant as you can; remember, this is about “success,” not winning.
And, No: It isn’t fair. I’m sorry this is happening to you and I’m sorry this is happening to them. And thank you for doing what you’re doing.
Two days from today will be the “Walk to End Alzheimer’s” at the Boys & Girls Club in Sequim, starting at 9:00 a.m. and going until a little after noon. If you can walk, please do, but many of us can’t, for any number of reasons, so just show up and register and be a part of it, because you already are – Laugh, cry, hold hands, learn stuff, meet people who are doing what you’re doing or just get out of the firefight for a little while.
Or just come and be quiet. You are, after all, a whole person.
And, sometimes, it’s easy to forget that.
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