Break It Down

When I first went online looking for Alzheimer's information, I was surprised to find so little in terms of practical advice. There were nice stories, but little of the nitty gritty. I have some practical advice on how to talk to a person with Alzheimer's. It will vary of course from person to person, but one of the first things that goes is short term memory. So imagine trying to keep track of a conversation or a multi-step set of tasks. Don't forget, even getting ready to go out the door is very mult-step!

Therefore, tell them the first step....and then wait. Wait till they do it. Then go on to the next step. Sometimes it's like moving a stick thru honey, sweet but a drag. For example, it might work better to first say, wash your hair now, now your shoulders, okay, your arms, splash some water on your feet, scrub your feet with the towel. Rather than "Time to take a shower." There is no need to talk slow or babyish, just short compact phrases of what they need to do. They might fuss a little, but notice how they are also relieved they can get thru it now -- with your help.

Create a Comfort Zone

Our society doesn't have much for old folks that need supervision to do. Young kids have soccer games, kindergarten, school, clubs, play-dates, piano lessons and such to keep them active during the day, but what about for old folks? If you're lucky, your elder will have a hobby they still enjoy or can do. If not, it may help to create a "Comfort Zone." This could be a desk with with their favorite photo albums and knick-knacks within easy reach. Or it could be a comfortable armchair with towels to fold or newspapers to read. Look for what things they enjoy and can spend hours on occupying themselves. It's okay to let go of the idea that they need to do the complex hobbies and tasks of the past, with Alzheimer's it's comfort we're looking for these days.

It's All She Needs

Imagine that your brain is falling apart, bits of it breaking up here and there, some parts squeeking and not working right. Your needs become different. We often feel that a person with Alzheimer's needs to enjoy what the did before to be happy, it's not true. It's up to us as the caregivers to reevaluate, readjust and respond. If what makes her happy is looking at the same magazine over and over, hey it's reruns. Why not. If he likes to just sit at his desk for hours and sort thru photos, alright! Encourage their small pleasures, it's theirs to have. It's often like watching them return to childhood, enjoy the innocence and simplicity.

Celebrate the Parts that Still Work

My father used to be able to quote P/E ratios of stocks in his portfolio. Now he's more likely to blow up an egg in the microwave. Slowly he's lost many mental abilities, much like turning off circuit breakers one at a time; you can see each room growing dim as a circuit closes down.

Then again, he'll still make the same jokes, tell the same stories and likes the same things as he did before. Try to expect less, enjoy the parts that still work.

"Alz" proofing the house

Most people are ready to "child-proof" their homes when babies start crawling and toddlers start poking around in every nook and cranny. "Alzhiemer's" proofing your home, however, can unexpected and be an even greater challenge. Depending on how Alzheimer's has affected the person in your home will affect what you need to alter, but be prepared to alter.

For example, have they lost the ability to figure out the proper amount of time to heat something in the microwave, but still retain the urge to "use" the microwave?  If the microwave is built into a cabinet, it's tougher to unplug it.

Do they wander around and turn off all the lights out of habit, even if others want them on? Some switches might need to be "taped" over. Is the stove still accessible to them? Do they want to put the kettle onto the gas stove? It may mean that the kettle has to be hidden.

One suggestion is to "groove" them into a path, a routine that let's them do what they want to do, but leaves other things safetly untouched outside of their path. For example, create a special nook or corner on the kitchen counter that has "their" stuff. Maybe a box of biscuits or snacks keeps them coming back to rummage there. This could keep them away from poking around in other cabinets.

Do they have a favorite chair in the living room that's exclusively theirs. Keep some newspapers, magazines or knitting supplies there. This gives them a place to go to when bored, rather than wandering to other parts of the house.

Periscope

Imagine viewing the world thru a periscope, there's a limited view, and just one pipe that everything needs to get thru. In contrast, adults without Alzheimer's have learned to take in a "wide-view" of the things around us.

For example, while driving we're constantly looking at the side-mirrors, back mirrors, watching our speed, the sidewalks for pedestrians and kids, etc. An Alzheimer's tank is much more methodical and brute force. It sees dinner and goes to eat dinner, there's no idle chit-chat to distract.

Keep this in mind when trying to get someone with Alzheimer's to do something, just focus on conveying only the information necessary to get down that periscope. He'll be watching and waiting.

Clear the Clutter I - The Bathroom

Observe

Reduce

Relax

Imagine yourself in an Alzheimer's world. Your memory is going and you can't remember if you just did something. You turn to ingrained routines and clues for what to do. What happens if there are so many clues and things to look at that you get confused, uncertain, just lost in it all? Wouldn't it be nice if there was a nice simple environment and routine to get you thru the day?

Take a look at what is in the bathroom of person with Alzheimer's. Do they need 4 types of shampoo, conditioner, five sets of towels, some flower trinkets here and there, a slip rug on the ground, a radio, several toothbrushes, medicine and cotton balls?

I remember the day my dad used the mouthwash as shampoo, hey -- an easy mistake.

Instead observe what they use and need. The toothbrush, toothpaste, a cup, a facecloth, a comb. That's it. All in front of them ready to go. They just look down and know what to do. Brush teeth, wash face, comb hair. That's it.

All the other stuff goes away, reduce, remove.

Then you can relax.

It's broke - don't fix it

If a person has no leg, we try to fix that by giving him a prosthetic. If the bicycle has a broken bell, we go buy a new one. If the computer has a virus, we run the anti-virus program. We are a society used to fixing things. But with Alzheimer's, parts of the brain are broken and we don't have a mental-prosthetic, and we can't fix what's broken inside that brain. After you've tried the ginko-biloba, the notebook, the Aricept, the repeated instructions....it's time to let things go. Parts are broken, you don't need to fix it. You can't fix it.  Pops keeps calling Sue, Patty. Mom keeps re-arranging the dresser drawer. You can't remember what you had for lunch. It's okay, that's the world now. Let it be.

Trust But Verify

A person with Alzheimer's will try to trick you!  Yes, that's right. Good ol honest pop will try to fool you. Mom will welcome a guest and offer a cookie and ask about your guests mother....but she can't remember it's her best friend Sue.  You ask if they have brushed their teeth, and they will say, "Of course, and with mouthwash." Yet the toothbrush is dry and the mouthwash unopened. They are better at it than your kids. It's an old Ronnie Reagan saying, but it holds true, "Trust, but verify."

Birthdays - in the moment

Remember having birthday parties for kids when they're one, two, three, four years old. Do any of us remember them? Maybe a few of us have photos and fondly look at them. But for the most part we forget. The kids enjoy the party, we enjoy the party, friends enjoy the party. It's the same for a birthday party for a person with Alzheimer's. Maybe they'll know it's today, maybe they'll only remember for the few minutes just after you tell them and have the cake. But in anycase, what's it hurt to have a cake, some smiles and a party.

Elder Care Lawyers Often Are Useless

Yes, it's true. Most elder care lawyers are in the business of charging fees to set up wills, power of attorneys, living trusts and such. They may sound nice and lend a comforting ear, but they are not much help when one gets into a tough family battle over a person with Alzheimer's and their needs and assets.

Keep in mind that an attorney that does contracts is different than one that does probate from one that litigates. With something as dynamic and ambiguous as Alzheimer's, it's very tough to have anything solid done legally. If another person wants to contest something, they can. While this isn't a great tip, I hope it steadies some who may have tough legal challenges ahead.

Read for Support - You're Not Alone in This

Many advise that caregivers get involved with support groups, seek information, ask for help, etc. But to be honest, that's a dream world. Who has the time to go to a support group, help is tough to find. Very few people are eager to help watch old gramps or grandma.

Instead, I suggest this, take a little time to browse on the net for articles about caregiving. It's a kind of "self" support group. While it might be less satisfying than talking to a real person face-to-face, at least the stories usually are relatable and leave us less isolated.

Here's a good article on the B-generation on the NYT, about mom with Alzheimer's. http://www.nytimes.com/2009/08/23/fashion/23genb.html?hpw=&pagewanted=all 

Good search terms include Alzheimer's, the Sandwich Generation, old age, and senior care.

Do they need all those sweaters?

Observe. Reduce. Simplify. Do they need the 20 sweaters they have accumalated over the years stacked in the cabinet? How do you find stuff they hide when there are so many places to put things? Observe what they use each day, each week, and gradually reduce. If they ask about something in particular, put it back. Remember, it's key to observe what they DO use and WANT. If you just take stuff away willy-nilly, they'll feel like someone is stealing, they are losing things, etc. The key is to kind a comfortable, manageable level of clutter. I find very very simple is easiest. I put out one set of clothes, I know it's clean. I know it gets changed. He is unconcerned. Alzheimer's requires simplification.

Patience is not a virtue, it's survival with Alzheimer's

Alzheimer's behaviour will often test the limits of your patience. The same question asked over and over again. Refusals, excuses, reluctance, testiness, anger, insults can often emerge when things are rushed and not timed just so. As adults, we're used to making accomodations to other adults, letting someone in first on the elevator, opening a door when it looks like someone else is in a rush, etc. In other words, we're always looking out for others, we get used to that, and expect it in return. But those with Alzheimer's are returning to their own world, a world that centers around them. With kids, it was cute -- but with an adult, well...that's where the patience comes in. You'll have to say the same phrase over and over a few times. You'll have to adjust your statement until you find one that gets them to do what they need to do, like change into pjs, take a shower, eat more meat, or maybe get up and move around. You'll have to do things in slow motion, even though a hundred other things are pressing to be done around the house. I don't think any caregiver get's this patience out of virtue, well some good souls might, but most just use patience to survive the day. A person with AZ doesn't mean to be so slow and un-abled, remind yourself it's Alzheimer's and remember they once were able to do it on their own. Now you're here to help.

Legal Catch-22

There is very little that you can do legally once your physician says you have probable Alzheimer's. The various websites, AARP, etc., will say to then prepare your Power of Attorney, Will, etc. But to be frank, it's too late. You'll need to spend several thousand to have a neurologist give you an evaluation, then have whatever you write video-taped and supervised by an attorney, etc. I know it sounds excessive and crazy, but even this can be challenged.

Some friends of the family designated and put into effect their Power of Attorney and Will before going on a cruise. I envy them, because this is early enough before anyone can argue that any dementia has set in. They will be well prepared. Maybe you are visiting this website for your parents, it's probably too late to prepare their paperwork, but not too late for you to do yours.

Changes are necessary

Most people will not understand the changes you'll have to make. Our society is set up to deal with taking care of kids or the ill, but it is not good at dementia. Remember that Ronald Reagan and Margaret Thatcher had Alzheimer's, but the way society and thier families dealt with it was to take them out of the spotlight and hide them from all but the closest of family and friends. We'd like to bring Alzheimer's and dealing with it to light here at LifeTips.

Craving routines

Imagine that you can't remember what just happened. What do you turn to for reassurance, for guidance? You turn to routines, things that are stable, that you don't have to "remember." My dad is out of his room for lunch at noon on the dot. The same can be said for dinner at 6:30 pm when he's poking around the kitchen asking, "What's up?"

In our modern lives, daily activities are often hectic, shifting and uncertain, but to make it easier for those with Alzheimer's, it goes a long way to make daily life very humdrum, regular and routine. You can count on that -- and so will they.

It's a disability - make adjustments

These days we are used to euphamisms like differently-abled, special needs or challenged. But for Alzheimer's and dementias we tend to think of it as the end of the world. Instead, for a long period people are able to function, but with disabilities--mental disabilities. Make some modifications to compensate. Think of it as installing a wheelchair ramp for the lost cognition.