Later, the director shared that the woman’s mom had been diagnosed with Alzheimer’s, and this was the first event she had attended. This was the first time she was admitting to herself that her mother had Alzheimer’s.

Because Alzheimer’s, like cancer has a ripple effect. We’re afraid of what the end will be like. We’re afraid our loved ones will suffer. We’re afraid of how bad it’ll get.

We’re afraid it might be in our genes, too.

Afraid, afraid, afraid.

People are afraid they’ll get Alzheimer’s, and then if they do get it, they’re afraid of what the end will be like. That’s a lot of fear. I don’t know about you, but if I’m going to be mauled to death by a bear, then bring it on–cause worrying about it for two decades will kill me with an ulcer before I ever see a bear!

Getting that dreaded diagnosis means your life as you know it is over.

Really?

Is it all or nothing?

Does your brain, your personality, your purpose and dreams all fall out of your head the second the doctor utters this terrible word?

NO.

You (or your loved one) have probably been living with Alzheimer’s/dementia for awhile.

Life’s been pretty good, right? Sure–some slippage–some “what’s that called, what’s his name”  moments–but hasn’t there also been some quality of life?

Does it mean that mom (or me, her caregiver) will never see our friends, go on vacation, ever again?

No, it doesn’t!

You have time.

Think about it. Nothing has really changed since yesterday, or whatever was the day before your diagnosis. You may have thought something was “off,” but you still went to the grocery store and ate dinner, right?

I’m not saying it’s a picnic, my mother had Alzheimer’s and lived with us the last almost three years of her life, so I’ve seen this disease up close. But now that there’s such an awareness of Alzheimer’s, there’s earlier diagnosis–which means people are getting treated earlier.

Drugs such as Aricept, Exelon, Cognex, and Razadyne work well on many people who are in the early stages of Alzheimer’s. You can take your meds, and still enjoy so much of life.

What can you do if you or your loved has Alzheimer’s?

(It depends on age, stage, and other existing illnesses)

On one hand, keep right on truckin’ as the cliche goes. Keep living your life.

On the other hand, take a trip. Do it now. Go to Greece. Go to Rome. Have that 50th wedding anniversary party–do whatever you’ve been putting off.

Yes, go with a friend, your spouse–take a tour. Take your meds, don’t over do it, but go! So what if you forget the busboy’s name on the cruise ship. So what if you and your wife walk everywhere together hand in hand.

Get together with friends. Talk about it. Let them ask questions.

Let’s educate our loved ones. Let’s get over the stigma. Let’s show them that life indeed does go on. Enjoy dinner, enjoy eating out–crack a joke and watch everybody bristle as to whether to laugh or not.

Go for a walk. Your legs aren’t broke, you know. You don’t have to become a couch potato. If your finger can flip channels, it can surf the ‘net. Raise money for Alzheimer’s research or blog and share your journey with others. That’s what Terry Prachett is doing. He’s a well-known writer who has Alzheimer’s and he’s donating monies and bring awareness to this disease. You might as well use it to do some good in the world.

There are no guarantees for anyone–so why not have the best Christmas ever? Get that toy train you’ve always wanted. Take that family portrait with the kids, grand kids and great grand kids. Wear a Santa suit and pass out presents.

This is the time to video or audio record your life, your memories, your songs and stories.

Life is precious. Memories are to be passed on and held dear. So find the time when you are rested and clear headed to go ahead and yack and yack and tell all the stories you can think of–about you, your career, your adventures, your sorrows and your victories.

You know the old saying, “The best revenge is a good life.” Well, take revenge on Alzheimer’s and show the world just how good life is.

Nothing is better than an ordinary day–feeding the cat, reading the paper, putzing to the store. It’s those quiet days that become a deep source of pleasure. So fully enjoy each day. Watch Family Feud, eat popcorn, prop your feet up on the coffee table.

What if you’re forgetting more than you’re remembering these days?

Then spend this tender time with those you love. Tell them you love them–now.

Ask them to remember for you. Create a system of post-it notes, alarm clocks, and every memory helper gadget you can find. But more importantly, sit with your sweety, play with your dog–and just be present.

What if the diagnosis of Alzheimer’s comes after there’s much memory loss?

Then know as a caregiver that while your loved one may at times feel agitated and scared–Alzheimer’s is not physically painful. There is some pain at the end of life (but that’s related to the shutting down or bodily systems). The hardest part regarding pain is that late stage Alzheimer’s patients can suffer pain from another ailment and not be able to communicate it (such as a bladder infection, toothache, heart condition, etc).

Yes, Alzheimer’s is confusing (and that falls under emotional pain), I”m not belittling the ramifications of this disease and its impact on families in any way.

What can I do as a caregiver/loved one to help?

• Be patient
• Don’t get overly emotional–that’s scares them
• Stay in charge–that makes them feel safe
• Keep them safe
• Take care of yourself, pace yourself–this could be along haul
• Let them talk about deceased loved ones/careers/the war–and enjoy listening
• Don’t get caught up in the million question game
• Don’t take their outbursts seriously
• Do what’s right and don’t let them manipulate you
• Provide what they like as much as possible (likes will eventually fade)-food, music, art, sports
• Introduce yourself and who you are–daughter, nurse, etc. every time you see them (If they’re forgetting who people are)
• Don’t be offended when they forget who you are to them–even if you’re their wife of 50 years
• Don’t take it personal if another person, animal, or inanimate object seems to make them happier than you do–it’s just this wacky disease
• Know that they love you even when they can’t verbalize it
• Remember for them. Write their stories, sing their songs, play the music they loved when they were dating
• Keep a watchful eye on them in the hospital and care facilities–no one will pay attention and catch mistakes more than a loved one
• When the end comes, give them your verbal permission to let go
• Stay up beat. They need you more than ever

Don’t get me wrong–I’m all for falling apart, so you’ll need to fall apart every now and then.

But fall apart in the closet, in the shower, in the car. Scream, cry, beat the steering wheel. This is a mean son of…, and you have every right to be angry at this disease. That’s important.

Don’t just think about Alzheimer’s all the time.

Occupy your thoughts with a song, a new recipe, the color you’ll paint your bedroom next month. Don’t abandon your marriage or your kids or all your hobbies. You need a life (however small it may seem to shrink).

Don’t dwell on this disease–that’s giving it way too much power.

It is what it is.

Eventually, you’ll reconcile yourself to Alzheimer’s. You will if it hangs around enough to absolutely wear you out.

I don’t know if I made peace with it as much as I just got tired of it–and its reign of terror over my home and my mother.

Reconciliation isn’t the same as giving up. It’s about allowing.

You can fight it–beat your chest and beg–but it won’t let go.

So laugh at the crazies, hug and hold hands as much as you can. Scream and cry when you need to.

Create your own village of support, and be “okay.” I don’t know if you’ll ever get better than “okay.” Remember the movie As Good as It Gets with Jack Nicholson?

What a line! He bursts into his therapist’s office, and he’s OCD (obsessive compulsive disorder) and aggitated as can be–and he looks around the room and asks the other sad, freaked out and irritable people in the room–“What if, this is as good as it gets?”

I find that comforting. To just take a breath and be okay with how things are. Right now.

I don’t know where you are–if your loved one just got the news and you’re still reeling.

Or maybe you’re in your tenth year and your mom’s in a care facility and she has absolutely no connection to reality.

No matter which case, you can’t get to any level of peace without going through the fire.

You will find your way. You will have a good moment, an allowing moment here and there–when life and your loved one–and all that you’re going through is ironically, “okay.”

Oh, and about the gal who ran out of the conference crying?

I met her–and her mom walking through the mall last Christmas. She introduced me to her mom–with tenderness and pride.

I’m Carol O’Dell, and I wrote Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir. You can purchase my book on on Amazon and in bookstores.