Caregivers: There’s Nothing More Important Than a Good Conversation

I love the Japanese concept of Wabi-Sabi–the beauty found in imperfection. There’s nothing more imperfect than family life. The fusses, fights, secrets, and misunderstandings add texture to your life–and salt to your stories.

I found this definition at Nobel Harbor, written by Tadao Ando, a Japanese architect. This essay on Wabi Sabi so touched me that I thought I’d share it–it’s how I strive to live my life.

Pared down to its barest essence, wabi-sabi is the Japanese art of finding beauty in imperfection and profundity in nature, of accepting the natural cycle of growth, decay, and death. It’s simple, slow, and uncluttered-and it reveres authenticity above all. Wabi-sabi is flea markets, not warehouse stores; aged wood, not Pergo; rice paper, not glass. It celebrates cracks and crevices and all the other marks that time, weather, and loving use leave behind. It reminds us that we are all but transient beings on this planet-that our bodies as well as the material world around us are in the process of returning to the dust from which we came. Through wabi-sabi, we learn to embrace liver spots, rust, and frayed edges, and the march of time they represent.

But I do wish I had known back then what I know now.

In regard to caring for my mother, I tell myself I was busy. There was never enough of “me” to go around. I had to eek out my time and love in tiny drops just to give everybody a piece. That was true, and asking a caregiver to stop spinning in a maddening circle is asking them to do the impossible.

The  busy-ness (observation–busy-ness and business is not necessarily the same), frantic-ness, never stop breakneck speed is a protective stance.

I had a the privilege of being a real part of my mother’s life the last 15 years she was on earth. Daddy had died, and I was her closest relative. Although I’m adopted, that doesn’t change anything in terms of family dynamics–they were my parents, and I was their daughter. If anything, adoption added a little extra cement to our bond. 

I remember a conversation my mother and I had when I was about eleven years old. We were in the car outside of church waiting for Daddy to get out of an elder meeting. Something big was going down–there were rumors that our pastor had had an affair. Even the kids knew about it. I was just old enough to know what that meant–and young enough to think that life was black–or white–nothing in between.

I was in the back seat, mother was in the front, filing her nails, as usual. We both stopped what we were doing and looked at the church.

“Why doesn’t his wife just leave him and the church just fire him.” I said, angry that this pastor I had looked up to had betrayed me as well.

“It’s not that easy, honey.”

That’s all Mother said. I laid my head on the ledge of the front seat, and she continued to look at the building in front of us, at the steeple that strained into a blue sky.

I learned a lot that day–by all that she didn’t say.

I spent hours and hours with my mother–driving her to doctor appointments, to the grocery store, and to the million errands she could concoct just to get out of the house. And in the end, my mother lived with my family and me–she became a part of the O’Dell household complete with two dogs, two cats, three teenagers, my husband and myself. Most of the time she didn’t think about being a part of anything–by then, life, she believed, evolved around her. It was my job to incorporate her, create balance to my home, and not let anyone yell “fire” and hog all the time and attention away from the delicate harmony of our home.

So there I was, always on the go. Always avoiding. Always, even when sitting perfectly still on the outside, whizzing around in my soul like a gyro-top. It was fueled by panic, fear, sorrow, loss, and the underlying thought, “I can’t do this–be responsible for my mother’s life, for my children–I can’t do all this.”

But now I know.

What’s more important than making every doctor’s appointment, than reading about Alzheimer’s, then cutting pill after pill, then the calls to Medicare and home health aides was this:

What my mother (and my husband, children, and friends) needed from me more than anything–was a good conversation.

There isn’t anything in the world as loving and respectful as someone who will sit with you, look you in the eye, listen to what you have to say–and contribute to the conversation. The easy banter of thoughts, hopes, fears, and chit-chat of life is deeply satisfying.

My mother didn’t move into my home just to have a list of needs met every day. Anyone could do that. On some level she was hoping we’d have a few minutes–to simply be. Not to agree with one another, not to be little clones spouting off the same agendas, but to sit as bookends, side-by-side observing life.

That’s what my mother needed. What I needed. I couldn’t do much to speed up or postpone death. We can’t change much about life in the big scheme of things–but what is within our capabilities is how we interact with one another. We can choose to create a time and space for real connection to happen. It can’t be forced or cajoled.

Having one genuine moment of understanding–a said or unsaid conversation is rare and most precious.

We’d have many conversations over the next almost 40 years. Many times we’d talk at each other, alienate each other, blast each other–but every once in a while, there would be that cord that stretched from her to me and back to her again.

There are lots of great sites on the Internet about families, caregiving, Alzheimer’s, elder-care, parents and children–but nothing is more important than quieting your thoughts, unwinding the pent-up soul, and taking a few moments to sit quietly–and talk.I’ll spend the next few posts exploring what makes a good conversation, how to talk to someone we love–someone who is ill or aged, or someone we have issues with–thorns that make us wince at the thought of a meaningful conversation.

I’ll write about how to talk–or be with someone you love who no longer can speak, or comprehend who you are.

I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir–on sale at Amazon, other online e-tailers, and in most bookstores.~Carol O’Dell

A Caregiver’s Challenge: Loving the Unlovable

Dad Won’t Quit Pacing! What You Need to Know About Agitation and Alzheimer’s

Alzheimer’s usually strikes when someone is older–a time in their life when people typically slow down.

Many Alzheimer’s live on the edge–always anxious, overly alert, agitated, and sometimes mean.

A common sight in a memory disorder unit, facility, or center (they can be called different names) is to see a person walking and walking. Pacing like a caged cougar.

They never sit. They have a wild look in their eye.

Only when you see several Alzheimer’s/dementia/Lewy Body (a Parkinson’s form of dementia) all together do you realize that your loved one isn’t the only one who does this–that it must be the effect of Alzheimer’s on the brain and nervous system.

It’s exhausting to watch and even more exhausting to keep up with.

It can cause them to wander–try to slip out–and if they do, get lost.

That’s a caregiver’s worst nightmare–their loved one out side of safety, vulnerable to everything and everyone from being hit by a car, lost in the woods, or god forbid–hurt by someone cruel.

Why can’t people with dementia or Alzheimer’s seem to settle down and relax?

Agitation is one of the challeges of Alzheimer’s behavour.

Agitation and other behavoiral changes are caused by the changes in the brain–the brain is in many ways, shrinking. The delicate pistons that fire the synapse is not always firing or hitting the intended area or “target.” This can cause all kind of sensations–a person can become sensitive to sound or light or texure–they can crave it or recoil from it. There can sometimes be hallucinations, delusions, (especially with Lewy Body–which usually includes more of a shuffled walk)

A person with advanced Alzheimer’s can forget how to talk and only babble.

Many things can happen in our brains, which means Alzheimer’s will effect people differently.

What do you do if your spouse/parent/loved one paces/walks incessantly?

• If the person with Alzheimer’s becomes anxious or If it’s safe, let them walk. I know you think they’re old, their knees are in bad shape, and how can they keep doing this? It’s a need, a drive–and at this stage of the game, their knees can’t be your primary concern. Let them walk.
• Listen to the person’s frustration. Does it make sense? Can you help in some way? Does the cat bother them–or the red planter in the window? If there’s something that’s irratating them–no matter how odd–and you can move it, then move it.
• Reassure the person. Use calming phrases and let the person know you’re there for them but also realize this may not comfort them at all. Do the best you can. Know when to be firm. Say it in a kind way, but if they’re trying to get out the door, then you will have to distract and be firm–for their own safety.
• Many people (men and women) respond better to a male voice. They perceive it as the voice of authority, so consider using a lower, clearer tone–or finding a male to impersonate Barry White for you!
• Don’t use so many words when giving direction. Be clear. 2-3 words are enough. “Sit in this chair.” “Time to eat.” Don’t yell or startle them even when it seems like it is needed. It usually doesn’t work and will only make things work. You can firmly state, “NO.” Use your strong voice, not a yelling panic voice.
• Even those with brain disorders can pick up on fear or anger–it’s contagious!
• Involve the person in activities. Use art, music or touch to help the person relax. This isn’t patronizing even though it feels like pre-school. Music therapy really does work and has been documented to sooth those who are agitated. 
• Modify the environment. Decrease noise and distractions or move to another place.  Just as with a young child, you baby proof your cabins and put up baby gates to keep them from falling down the stairs. This isn’t treating your elder with disrespect. This is to make them safe.
• Keep a look out for new possible hazards. It’s amazing the trouble one person with Alzheimer’s can get into!
• Find outlets for the person’s energy. Have you been outsidein the last few days? Gone for a car ride? If this is no longer possible, then have you opened the windows? Aired out the place? Can you play ball or fold towels? Some people really need that tactile sensation. Some women like dolls. Some people respond to a small dog–for others it would be a danger (for the dog, I mean ). Can you keep a Tupperware drawer and create “jobs” for them of loading and unloading?
• Keep a sense of humor. It’s just the brain gone kaflooey. Your loved one isn’t trying to mean (most of the time) or drive you crazy (most of the time).
• If you find your patience is gone for the day, then maybe you need to go as well. Just because your loved one can’t take a walk doesn’t mean you can’t.

If you’re dealing with the later stages of Alzheimer’s, dementia and memory loss, then know that you are dealing with a massive amount of stress.

Most professionals burn out at this point, and in many memory loss units, some are advised to only work three days a week so that the stress doesn’t hurt them or ripple out to the patients and their families.

You have got to de-stress! Even if you just visit your loved one, you have to let it go after the visit.

You know how you have to go through decontamination if you are exposed to radioactive material? Visualize that.  Walk, cry, scream, eat–don’t forget to eat–but if you’re food cramming (stress eating in other words) then forbid anyone to bring Oreos or Doritios or whatever triggers you.

You’re in a more stressful job than air traffic control. Treat your body and your heart with tenderness during this very difficult time. Don’t expect to be on an even keel. Expect to cry, feel numb, zone out, not be able to talk about your experience–this is profound, and while that sounds terrible, it’s not. You can do this and do it with love and compassion. Your loved one needs you to watch over them.

Also know that this is the stage where many of our loved ones have to placed in a facility–for their safety and yours–because their needs are more than you and your team/community can manage.
It’s okay if this happens. You’ve done all you can. Say thank you for the help, for the option. Let them take some of the load. Find the best place you can. Visit often. Be vigilant and watch over your loved one–but know that it’s time to begin to let go. It’s time to allow others to help.

• Stay calm and be understanding. • Be patient and flexible
• Look for reasons for each particular
• Respond to the emotion, not the behavior
• Don’t argue or try to convince
• Acknowledge requests and respond to them
• Accept the behavior as a reality of the disease and try to work through it

It’s also important to prepare other family members before they visit.
Alzheimer’s can be very disturbing if you’re not familiar with the “quirks” that come with it. By talking about it ahead of time, letting the person know what they’ll see or how they’ll be talked to or treated–and how to react–will help immensely.

CNA’s and other elder-health professionals get training in dealing with Alzheimer’s behaviour, but sadly most family caregivers don’t. They have to figure it out for themselves. Many loved ones are placed in a care facility prematurely (or too late) because we simply don’t know what to say or do.

Alzheimer’s is kind of like the wizard in the Wizard of Oz. Once you go behind the curtain–begin to analyze what’s happening, why, and have tools and coping mechanisms–it’s not so intimidating.

These are still our loved ones.

Trapped inside every feeble or rigid body, behind every frozen face or babbling talk, is someone’s mom, dad, husband or wife.

Please visit this blog again!

Carol is the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir. It’s available on Amazon and in bookstores.