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Alzheimer’s is a tough diagnosis.

Many people hear the word and instantly get an image of their loved one completely uncontrollable–who no longer knows who they are.

It’s worse than any horror movie.

Recently, at a caregiver’s conference I started my talk about my caregiving journey–and that my mom had Alzheimer’s. A woman jumped up out of her seat, let out a cry, and ran out of the room. The director followed her out the door.

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.

Why is it so scary?

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 as a caregiver that you will never see your friends, go on vacation, or make love–ever again?

No, it doesn’t!

Yes, it’s scary to say the word.

It’s scary to know that “it’s” in there. Lurking.

But you do have time.

You do still have a life and people you love. Nothing has really changed since yesterday.

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)

Get up tomorrow morning and have the same breakfast you had today.

Watch The Price is Right or go to the store. Keep on living your life.

Yes, you can take a trip. Go to Greece. Go to Rome. Do those things you’ve always dreamed of–but also know that your ordinary every day life has value.

Don’t feel lke you can’t go with a friend, your spouse and take a tour. You can. 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.

Just remember that having coffee on your back porch while reading the morning paper is pretty darn great too.

Get together with friends. Talk about your diasnosis. Get it on out there. 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.

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.

Then go on. 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. 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 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. It’s available on Amazon and in bookstores.

I hope you’ve enjoyed this blog and will visit again.

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It’s called social convention abilities, or social response abilities, which means your loved one who you know has dementia/Alzheimer’s, can get their act “together” in front of the doctor or some other person and talk or act fine.

 

It can seem as if you’ve been tricked.

How can a person who doesn’t remember their own son or daughter, keeps their purse in the freezer and thinks that trees are talking to them act completely normal in front of a stranger? 

 

Social convention means that all those years we’ve walked past someone and said, “Hello, how are you? I’m fine” are now hard-wired in our brains.

 

We answer without thinking.

We sit up straighter when someone we don’t know enters the room, we  act polite when we’re talking to a stranger, or wave when waved to, smile, even laugh at the appropriate pause in the story.

 

Professional care providers and those who work in the mental health field know about this, but I haven’t heard it discussed among caregivers–and this is important to know.

 

A person can access this ability when they’re in a new setting or with new people (stimulation) and they can act perfectly fine when just a few minutes ago they were having a conversation with a tree!

 

This can be very frustrating. You were worried, got them dressed, killed yourself to get to the appointment on time–and now they’re chatting it up with the nurse. 

 

The behavior you’ve observed at home is the “real deal.”

 

You have to insist on getting them the proper care and treatment based on what you witness 24/7, not on the five minutes in the doctor’s office.

 

This doesn’t mean your loved one doesn’t have dementia/Alzheimer’s.It doesn’t mean they don’t need meds or assistance.

 

Don’t let this fool you.

 

You’re not crazy, but it can feel like you are.

 

I hated when my mom did this–I felt like such an idiot for traipsing to the doctor yet again for my mother to say no, her knee didn’t hurt, no, she wasn’t having headaches. Then, they’d all look at me as if I were making the whole thing up!

 

Memory and recognition will vacillate.

Your loved one will remember who you are, and then forget. They will remember their spouse has passed, and then insist you take them to see them. It can throw you.

 

 

 

Caregivers are in a unique role.

They’re the bridge between their loved one and the medical world. Sometimes they’re ignored. Other times, they take over too much. It seems like you can’t get it right. No matter what you do, it’s too much or not enough.

 

Some physicians know about social convention abilities and understand it’s a normal human response to stimulus. But many doctors don’t know about this. Don’t think your doctor is well-informed about the nuances of Alzheimer’s. Unless they’re a specialist in this field, they probably don’t.

 

Hold your ground.

It’s in those off hours when they think no one is looking, or right after waking, or those middle of the night ordeals–that’s you witness the ravages of this disease. That’s for real–

 

Dementia and Alzheimer’s symptoms to appear to come and go, particularly in the earlier stages. These diseases don’t go away.

 

They may plateau for awhile, but sadly, this isn’t a disease you can recover from.

 

Caregiving is challenging enough without these incongruities.

But it’s part of the package.

 

What can I do to convince the doctor that I’ve brought my husband/wife/mom/dad there for a valid reason?

 

  • Keep a journal. Write down the times and events that concern you. This will help you track the disease.
  • Check into sundowning–many people with dementia Alzheimer’s experience heightened symptoms at night.
  • If you have to, video tape your loved one’s behavior. Neurologists can recognize patterns and symptoms by the way a person shuffles when they walk, use their hands, the type of tremors they exhibit and by their speech patterns. This can be helpful in diagnosing them.
  • Realize your loved one can have more than one disease. You may be experiencing an overlap in illnesses and additional treatment/medication may be required.
  • Have a friend or sibling on speed dial. After you care for your loved one or go to the doctor visit–call them and vent! You need to be able to get your emotions and frustrations out on the table.  
  • Speak to the doctor or nurse separately about your concerns. Make sure they’re recording you on paper. You need to present yourself in a pleasant, but firm manner. Some doctor’s like when a caregiver is knowledgeable, some don’t. Be prepared for either case.

You are crucial to your loved one’s care. You have the ability to notice things before anyone. Don’t let anyone second guess what you know in your gut.

The next time you loved one pulls a fast one on you, smile and quietly take charge. You are their lifeline, their voice.

Don’t be afraid to speak up.

 

I’m Carol O’Dell, author of Mothering Mother.This an other caregiving topics are covered in my book–I hope you’ll check out–click here, to go to the Amazon link.

 

 

 

 

 

 

 

People can cover up how bad a situation is—and we’re all too willing to believe it because we need things to stay the same. We need our loved ones to be okay—but sometimes, they’re not.

 

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