Caregiver, Do You Feel Like Running Away?

Sometimes I feel I’ve got to…runaway, I’ve to…runaway..from the pain that’s hurting me.

That’s a line to an old 80s song that rolled around in my head many of my caregiving days. I literally felt a panic inside: what was I thinking, moving my mom into my home. How long is she going to live? Do I have months, years…decades? She won’t leave me alone–I can’t take a bath or have a decent conversation with my husband (much less anything else). What choice do I have? She needs me, but how am I ever going to do this day after day. What about my life, my dreams?

On and on my internal monologue hounded me. Not only did I want to run away from my mother–I wanted to run away from me~!

I started collecting fantasies. How would I run away. Where would I go?

I imagined slipping out in the middle of the night. Me and the open road, guided by the moon. I’d roll the window down and howl. Free at last!

I imagined changing my name to Flo. Living in a run down house in Key West and waitressing. I’d fish for fun, check out books from the library and become a walking mystery.

I imagined inventing an adult play-pen and decorating it with things my mother loved. That way, I could exercise, cook, or take a bath without worrying–and maybe that Ronco guy would sell it on his high energy info-mercials.

I imagined strapping my mother to a wheelchair and taking her everywhere I long to go. Mom and me at the Grand Canyon. Mom and me at the Louvre. Mom and me taking art classes in Rome. Mom and me traipsing around New York City…hey, if you can’t get rid of them, bring ’em along became my motto. We’ll become like a Where’s Waldo drawing–where will the dynamic duo go next? We’d write travel books for caregivers and their buddies.

If only my life was that exciting…and if you think I’m a bit odd, then you try living 24/7 with your mother who has Alzheimer’s–and was a hand full before that ever started!

Kidding aside, when my mom first moved in with us, I did feel like I wanted to bolt out the front door. It took a while for my brain and my body to get the hang of her being in such a close proximity. I had to learn how to not let her overshadow me at every turn. I also had to learn how to let her feel needed and appreciated. Our mother-daughter dance had to learn a few new steps.

I also had to give into my run away tendencies. If I didn’t, I knew I’d really hit the road. So I started running away–to my journal. I had to snatch and grab a few minutes here and there–but having a place to put my questions and my angst kept them from boiling over.

I had to learn to run away–to the back yard. Nature calms and heals me. Especially water. Just to slip out that back door and stand at the edge of the river, watch the Spanish moss sway in the trees, and pick up a stone to hold as I said a prayer changed everything. Yeah, I’d look back at the house and my feet felt encased in lead. How could I ever make myself go back in there? But I did.

I used to hide–in the pantry, in the linen closet, on the side of the glass front door where no one could see me. I’d slump down and just give myself a few minutes–but then, they’d find me. They’d always find me. I was a sandwich generation mom–I had my mom–and my kids and husband to deal with. Somebody always wanted to know where mom was.

I’d run away by using my biting sarcasm (mostly internally), but my quippy comebacks kept us on our toes and we’d usually wind up laughing about it.

Running away is about letting off a little steam. It’s a mini-stay-cay. You can’t actually book that plane ticket to visit Bhutan, the place that Michael J. Fox’s book, Always Looking Up says is the happiest place on earth. You can buy a Chinese gong. You can visit a Bhutan website. You can buy a table runner in that gorgeous orange the monks wear.

If you feel like running away, then do it. Figure out a way to let off a little steam. Go for a bike ride, get off your bike and pick a few wildflowers. Do a virtual vacation by visiting a few websites and take notes for a future trip. Slip out the back door, find a pebble and say a prayer. Also, consider checking out respite care. Who says you can’t have a weekend off now and then? Check your community resources, ask a family member, and give yourself a break. (I know how hard this is and I can hear your but, but’s…but if you don’t you’ll burn out!)

Feeling that urge to run away is normal. Fantasizing about it lets off a little steam. Laughing about it soothes the soul. You are already a good caregiver–and admitting that once in a while you’d sure like to step out of that role if only for a few minutes, means you’re human.

Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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Do You Have a Hard Time Saying Your Loved One Has Alzheimer’s?

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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