How to Help the Person in Your Care
Changes in memory/other thinking skills
What happened yesterday tends to . . . vanish. Memories of the distant past remain strong, and you'll notice that the person you're caring for participates pretty well in the present. But eroding recent memory means that what you did last week or last night can no longer be captured and stored reliably. (Strongly emotional events may be retained longer.) Familiar people or family members remain pretty clear, but particular names and relationships can be lost.
Force yourself to live in the present. Don't make a big deal out of the person not remembering a wonderful dinner or a gift from the day before.
Coach visitors -- even family -- to slip in identifiers every time: "Here I am again, Mom, your favorite oldest daughter!"
Don't give up on pleasant outings: The emotion they trigger is often remembered and can set a good mood for days, even if the event itself is quickly forgotten.
Making choices is a particular challenge now. Seemingly simple acts such as selecting from a menu or buffet or deciding what to wear involve complex thinking that's moving beyond reach. The reason: These choices involve imagining the attributes of the options, comparing them, making judgments about how the choices fit in with the day (weather, appetite, and so on).
Spare the person the stress of choosing by gently stepping in with a specific suggestion: "Look, the special is salmon, your favorite."
Offer a boiled-down minimum of choices: "Do you want the red sweater or the blue one?" Be aware that he or she may latch onto the last (best-remembered) option. So if you prefer blue, say it last.
Out of view, pare down a wardrobe to a minimum of most-worn items.
Suggest weather- or event-appropriate items before the wrong thing is chosen. ("Here's your raincoat.")
Changes in emotions/insight
Mistakes tend to be laughed off, ignored, denied, or covered up. On one level, your loved one knows that phones don't belong in freezers and that grandparents ought to recognize a grandchild. Yet mistakes can't be helped. Awareness of one's own failing mental state is keen enough that, if caught in a flub, a socially appropriate response may still be mustered. (But he or she likely remains oblivious to many slip-ups.)
Don't make a big deal about mistakes, even as the mistakes get bigger.
Be prepared for any coping mechanism. One person might be sheepish, another indignant. And these responses may or may not reflect the predementia personality.
Go along gracefully with a convoluted explanation. Laugh along, or offer up an excuse yourself. ("Oh, did I do that?") Just keep it light and don't waste your breath explaining how you're right and the person with dementia (who can no longer rationalize) is wrong.
Changes in physical function/personal care
Promote independence where you can while keeping the person safe. More help is needed with fine-motor tasks, such as combing hair or fastening clothes. And you'll probably notice a preference for the same clothes over and over. Weigh where to help, where to step back.
Resist the temptation to do -- or redo -- everything. With extra time and minimal assistance, someone with dementia gains a sense of accomplishment from trying. Do step in, gracefully, if frustration mounts.
Don't sweat the small stuff. If clothes are repeats but clean, that's good enough. If the preferred drink is a sugary lemonade, hey, that's liquid, and good enough.
Realize that your loved one needs almost constant monitoring now both to keep safe and to feel reassured.
How to Take Care of You
Give yourself a stress check. It's natural to focus on the person with dementia, but the reality is that the physical toll on caregivers over time is huge. If you've been putting off good self-care, get back on track. Nurturing yourself does your loved one with dementia a favor, because healthy people provide better care.
Don't keep dementia a secret from the world. Confide in at least one person to whom you can freely vent as needed. Vent privately online, too.
Exercise early in the day before time runs away from you. Good home-based choices: walking (up stairs, in yard, around block), weight lifting, yoga, treadmill, exercise DVDs.
Instead of reforming your whole diet (stressful!), start with smarter snacking. Stock fresh or dried fruits, nuts, vegetables and hummus, string cheese, popcorn, green tea, flavored waters.
Make your own routine healthcare appointments for the coming year now, so they're in your calendar.
You'll need more help over time, not less. Even if you feel on top of the "new normal" now, abilities will deteriorate further. And the need for 24/7 monitoring has arrived. No single individual can manage dementia care all the way through, all alone.
Call your local Area Agency on Aging to find out if respite care is available (in the home or nearby). Even if you don't think you'll need relief yet, you will.
If you're worrying from a distance, consider hiring a geriatric care manager who can be your eyes and ears on the ground.
Keep a master list of everyone who volunteers to help you or who may be of help -- drivers, gardeners, errand-runners, sitters. When you're in a bind, turn to the list.
Let your employer know what's going on. Some companies offer eldercare or other work-life benefits, flextime, or dementia-specific educational resources. Legally, caregivers are considered the same at work as working parents.
You, not the person with dementia, will have to change. Erratic behavior, repetition, and rude comments aren't being said or done on purpose. The dementia causes them. The less the two of you butt heads over things that can't be controlled, the more you can learn how to work with the real adversary, the changing brain.
Erase phrases like, "Try harder" or, "You're not concentrating enough." Your loved one with dementia is doing the best he or she can. Berating or cajoling only adds frustration -- and leads to more mistakes.
Even if you're not the "group type," consider a support group for dementia caregivers. You'll learn strategies for communicating better, meet kindred spirits, and more. If it's too hard to leave the house, ask a local hospital, memory center, or Alzheimer's group about phone support groups. Or join a discussion forum online.
Learn the "why" behind common symptoms of dementia to help you redirect or avoid them.
Your emotional relationship with the person you care for will change despite all your love and help. That's because over time, everyone with dementia becomes more dependent. Old balances of power inevitably shift. "You'll still always love the person, but the emotional give-and-take will never be quite the same," says dementia family-care pioneer Lisa Gwyther, author of The Alzheimer's Action Plan.
Let yourself grieve -- that's what you're experiencing, even as your loved one lives. It's hard to see suffering and to let go of old expectations.
Live in the moment as best you can. Dwelling on old memories (home movies, photo albums.) or disrupted future plans (retirement, travel) can be unnecessarily painful.
Embrace the many good moments and days that still lie ahead. Dementia doesn't instantly erase the grace notes of laughter and gratitude.
How to Build Your Family/Support System
Know that denial is a common -- and strong -- emotion. Others may choose to ignore even obvious changes. Or they may not want to think of their loved one as changing, because it means changes for their lives, too.
Share what you see. Regularly and candidly update family and friends; the more they hear, the better they can understand.
Encourage others to spend time with the person who has dementia in order to share your front-row seat on what's happening (ideally for several days, not hours). Some things have to be experienced to be believed.
Share what you learn. Most people are unaware of the stages of dementia, how personality can change, and other basics. Passing along links to helpful articles teaches them.
Family and friends may not know how to help unless you make specific requests. What may look like obliviousness or refusal to help may be uncertainty. People aren't mind readers. Most haven't dealt with dementia before. Yet most of us actually like to contribute and don't see being asked as an intrusion.
When you ask for help, give details -- the exact task, time involved, directions, potential snags -- and as much advance notice as possible.
Divide categories of help among siblings or other family members if possible, so one person handles all insurance, another handles medical research, and so on.
Remember that help comes in many forms: someone doing errands so you don't have to, giving you time off, bringing food, driving to doctor visits, and -- especially -- paying for things (handy for long-distance or busy family members).
Others may find it easy to criticize, hard to collaborate. No two individuals have the same relationship or see things from the same vantage point. Disagreements occur, especially about emotional decisions. But you can circumvent some hard feelings.
Explain that experts agree there's no single "right" way to handle dementia care. You can only do what seems best at the time.
Ask critics to stick to describing what they dislike about the situation, not you personally. You're already doing the best you can, but try to be open to ideas, which could be helpful.