A dear friend of mine has cancer is awaiting a double mastectomy. Her family and friends have all gathered and I see the love and connection she has surrounding her. There’s hugs and laughter and even a few tears. But we’re still human, every last one of us that and all those prayers and good thoughts don’t keep us from saying something really dumb.
Hey, I’m guilty too. I don’t mean it in a “I would never say something that stupid” way because trust me, I’ve been known to say a few blunders in my day.
But I heard someone say something that made me cringe:
“If this were going to happen to anyone, then God sure did pick a strong person because you have so much faith–it’s amazing.”
I wanted to smack that person on the side of the head like they do in those V-8 commercials.
I know what this person meant, but faith or lack of faith isn’t the point. You don’t get cancer because you’re strong enough to handle it. If that’s the case, then sign me up with the punies, wusses, and scaredy-cats while I duck all the terrible life bombs that get hurled at those “strong people.”
Still, my heart went out to this well-meaning person. We’ve all said less than helpful/cheerful things at just the wrong time.
Here’s a Helpful “What Not to Say” List:
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God knew you could handle it. (God ((and I don’t mean it, really)) was wrong)
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You’re so strong. (If I’m weak does that mean I don’t have to go through this?)
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Your baby/husband/child was so special that God took him (God gets blamed for a lot, apparently–no wonder we have issues with “Him.”
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I could never do what you do. (I had no choice)
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You’ll find love again. (Back off–I’m not ready to go there)
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It’s better this way. (Is it?)
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At least they’re out of pain. (But I’m not)
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He/She had a good long life–it was time. (Who gets to be the judge of that?)
So What Do You Say?
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- Sometimes nothing. Just a hello, maybe a gentle smile or hug–play it by ear and see if they’ve been bombarded all day.
- If it’s appropriate, say, ‘I’m sorry that Bill died.” Don’t be afraid of the word, “died.” Or go with a simple, “I’m sorry for your loss.”
- Let the bring up their loved one. Some people just can’t talk about it for awhile and others find it cathartic.
- Send a card–tell them you’re thinking of them, love them, holding them in your thoughts–something about them. If you’re close and want to be more personal, then share a good memory–something in writing they’ll be able to keep.
- Be sensitive. If there’s something you seeor they need, or find difficult doing, then volunteer to help them out–clean gutters, help them take items to the Goodwill, ride with them on errands–every one has something that’s hard for them to do alone.
- Be there in the weeks and months to follow–grieving is a long process–and even though they have to go on with their lives, return to work and activities doesn’t mean they’re “over it.”
Finally, be patient. A person who has experienced a death may act erratic at times. They may be testy, nervous, or anxious one minute–only to be followed by teary, hot-headed or depressed the next.
I heard one person describe grief as if they’re wearing their nerve endings on the inside-out. Don’t take their mood swings personal. Listen well and be their steady companion through this difficult journey.
What if you screw up and say something dumb?
Just apologize. A quick, “Hey, that didn’t come out right” will be quickly forgiven. Forgive yourself. Dealing with illness and death is really, really hard so cut yourself some slack. Treat yourself as good as your treat your best friend.
It’s more important to try and flub, than to avoid.
As I was caregiving my mother, I couldn’t help but observe my mother’s words and actions.
If you live with someone, talk and listen, you begin to notice patterns. The same old things get said day in and day out. We’re all such creatures of habit. As my mother continued to age, she lost her ability to filter her thoughts or hide her fears.
It got me thinking about where I am now…and who I will become.
What concerns will linger and play and replay like a needle stuck on a record?
What judgements will slip out when I am too tired or too sick to guard them?
I’ve decided that I better do a little “soul keeping” every day.
Like housekeeping, it’s best to take out the trash and do the dishes on a daily basis–
if not, the place begins to stink.
I doubt we’re much different.
From Part I of Mothering Mother.
I have this theory; I’ve decided Mother is like concentrated orange juice. We all are, really. We start out potent, tart and pure—right off the tree. When we’re babies we don’t care if you like us or if we’re pleasing you. We are uncontaminated, unfiltered, and unadorned, with no knowledge of what we should or should not do. In this concentrated version, we are a wild DNA cocktail of mama and daddy, ancestors and humanity, naked and wordless.
Instincts—eating, drinking and bodily functions—drive us. We search for satisfactory ways to please ourselves. We propel toward our uncertain futures with blind self-adoration, and for those first few months, maybe a year or two, we are our life in its most concentrated form.
During the next seven or eight decades we become diluted, filled up with waterous thoughts, language, expectations, and experiences. We gain the ability to somewhat satisfy ourselves in every arena from sex to career.
Our other goal is to avoid pain as much as possible. We wail at the slightest bit of emotional, spiritual or physical discomfort. We become bloated, self-aggrandized, and then, when we finally figure out how to make things go our way—most of the time—life takes its final turn, and we begin to deflate.
As our mates leave us, and our friends and family trickle into nursing homes or relatives’ homes, we realize that all we’ve built up is beginning to dissolve. We lose our water and distill, leaving concentrated versions of ourselves, only now we have memories, fears, hates and hurts thrown into the concoction.
Mother is at this final stage during which we all reduce to our own cosmic juice and revert back to some pretty potent pulp. She is no longer interested in betterment, learning or growing. She is tart, almost bitter, and that makes it hard to want to spend time with her. She doesn’t seem to have the ability or inclination to be nice. It’s all about her now, and it doesn’t matter whether I have a hangnail or a tumor; it wouldn’t register.
Whatever Mother has accumulated along the way is now strong and unpleasant to those of us who live in a watered-down world. I see the things that remain. She can recall a moment of jealousy or disappointment from forty years ago and gnaw on it for days. Most of the actual events, people, and moments she once held so tightly are now forgotten.
I now understand something: we are what we are; the only way we can add to ourselves is by experiencing something powerful enough to alter our belief system. If Mother were naturally trusting, she would continue to trust. But since fear has become so entwined, it’s now a part of her concentrated self and must play itself out to the end.
I’m Carol O’Dell.
Got a caregiving question? Email me at Caring.com/family advisor .
Your situation–and your question might help others.
What makes a good conversation?
Two people who want to talk–and listen. Sometimes, they use words, but a conversation can consist of a glance, a the touch of
a hand–it’s about connection.
You can’t force it, and if you try too hard, it shows.
The art of conversation starts with you–and what you bring to the table.
The best conversationalists have a great sense of emotional intelligence, are easy, approachable, mix humor and poignancy, and can slide from subject to subject at a blink. It’s got a lot to do with a deep sense of confidence. There’s nothing sexier, more alluring, more satisfying than to be with someone who “sits deep in their own saddle.”
Emotional intelligence has been defined as: “An ability to recognize the meanings of emotion and their relationships, and to reason and problem-solve on the basis of them. Emotional intelligence is involved in the capacity to perceive emotions, assimilate emotion-related feelings, understand the information of those emotions, and manage them.”
My middle daughter used to ride horses–and studied the art of dressage.
They call it horse ballet. It’s formal, in many ways, and when people compete at dressage, it’s very fancy–they dress in coat and tails–and a top hat. My daughter’s instructor used to tell my daughter to sit deep in the saddle (this is typically true for all types of horseback riding)–which meant literally to tilt her hips back and down, sink her heels as far down as possible, and plant herself in the saddle. I adopted this metaphor for my own life.
For me, it means to recenter myself, be present, own my own worth and where I am in life so I won’t get “bounced off” at every little bump in the road.
are privileged to be in a conversation with someone like that, then you leave feeling better about yourself–and you don’t even know why.
What’s this got to do with caregiving?
Everything.
When any of us feel our own worth, we attract goodness.
People treat us better because we exude grace and respect–for ourselves and others.
My mother had this–she felt her own sense of worth that Parkinson’s and Alzheimer’s couldn’t take from her.
How do you become a good conversationalist?
- Take some slow, deep breaths before you enter a room or situation
- Envision who you will be talking to
- See the two of you at ease–engaged in a natural conversation
- If it’s an important conversation, plan out 2-3 points–no more
- Really listen. Pay attention to what they repeat, to their body language, to the way their face changes at certain thoughts
- Don’t play psychologist–no one likes to be analyzed
- If it’s a casual conversation–a dinner, get together with friends, then relax and be yourself. Don’t worry about every little word. Let others talk, but a little over-talking-interrupting is normal when things really get rolling. Forget how you look or trying to sound deep or witty and just trust your natural instincts.
- Don’t play the “one up” game–that’s when they tell story about being st or hurt–and then you ”one up” them by telling a story about something worse that happened to you
- Ask open ended questions–ones that can’t be answered with a “yes” or “no”
What about those difficult conversations–the one you need to have with your loved one?
Caregivers and family members have to eventually ask their loved ones some tough questions:
- Have you thought about what you’ll do if you can’t continue to live in your own home? Have you made plans?
- I think it’s time for us to plan for the time when you’ll no longer drive. Now that doesn’t mean you can’t still live at home or enjoy your same activities, but can we talk about some alternative transportation?
- How do you feel about a living will? Do you know what that is? If not, I can explain it to you.
- You remember we went to the doctor’s last week, and the doctor said you have Alzheimer’s. Do you have questions? I’d like to talk about how best to help care for you…
- How do you feel about hospice? Would you rather stay at home and have hospice here–or at a hospital?
- Have you thought about your memorial service? I know it’s uncomfortable, but I’d like your thoughts–how you’d like to be remembered.
These are difficult conversations, and the most difficult part is just getting started. Think about what scares you the most. Are you afraid they’ll get mad? Shut down? Refuse to ever talk about it again? That you’ll hurt their feelings?
Some conversations need to take place regardless of how uncomfortable it is or how someone might take it. It’s better than dealing with the consequences of NOT talking.
Risk the awkwardness, the fight, pouting, temper tantrum, or silent treatment that may come. If they get mad, let them. If they shut down and won’t talk, wait a few days and then ask again.
Keep asking. Just act oblivious to the fact that they get upset. Contrary to popular belief, you will not die from being uncomfortable.
IIt’s better to deal with the few minutes, hours, days of hurt than to have to make decisions for someone else–and then feel guilt and resentment and wonder if you did the right thing.
This might help kick-start a difficult conversation:
(I’ve actually done this–if you know you have an uncomfortable/difficult conversation coming up–do a dry run. The next time you get in your car, talk out loud and practice your conversation).
Say it exactly as you would if they were in the car with you. You can even add in their part–play out different scenarios–one where they argue with you, whine, cry, pitch a fit…and one where they listen to you, hesitate, but don’t completely discount what you’re trying to say.
Do this dry run several times until you get used to your own words. You need to hear yourself say it. You need the practice–and it really helps!
Get used to talking regularly–about everything. Let them in your life. Ask their opinion even if you don’t agree with them. Tell them your concerns. The more they feel a part of your life, the more they’ll open up about theirs. It’s okay to have differing views. It doesn’t mean you can’t love each other–even democrats and republicans have been known to get along–under the same roof 
The art of conversation can benefit your life as well as theirs.
Nothing feels better than a good conversation. Whether it’s a laughter, tears, banter, stories, or remembering the past, this is what binds us together.
I hope you’ll return for the next blog post. It’ll focus on the hardest of all conversations–communicating with our loved ones when they have Alzheimer’s or dementia or Lewy Body, or a brain injury, or having that last conversation with those we love in their final hours.
Join in the conversation!
I’m Carol O’Dell, author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon.
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
Tags: Alzheimers, Amazon, books, caregiving, Daddy, elder care, family, memoir, Mother, Open to Hope Foundation, wabi-sabi
Has caregiving changed you?
Do you no longer feel like yourself?
Has a part of you died?
I know. I felt this too. I felt like I lost myself in some way.
I lost my spontaneity, at times, my hope, and most days, my freedom.
But I’m here to let you know that it won’t always be this way.
Yes, caregiving disrupts your life.
Yes, caregiving dumps stress on your life by the bucket load.
Yes, caregiving will test every physical, emotional and moral fiber you have–and it hunts for frays and weak spots.
But I’d still do it again. (I wince to even think about it!)
And I know what I’m talking about–I cared for my mother who had Parkinson’s and Alzheimer’s–and she lived with my family and me for the last almost two years of her life. I cared for her for about 15 years before that–everything from going to see her once or twice a week, to a combination of hired care, community care, overnight stays, and her coming to my house. We tried to keep her in her own home, her own church and neighborhood for as long as possible.
So, my point is, I’m no wuss, and when I say I’d care give again, it’s not because I have so romanticized version of family life stuck in my head. And I wouldn’t jump up and down volunteering either. Why? Caregiving has to come to you out of genuine need. I know that one day, I will, or my husband will care give. We will care for each other. I know that–the love, the commitment are already in place.
But I’m not not going to care give the guy down the street. I might make him and his wife some meals, but my marital relationship warrants caregiving. And still, I certainly don’t look forward to it–because it’ll be one of us is sick, or we’ve aged to the point to where our bodies are breaking down–that death is coming all too soon.
Caregiving continued to change me even after my mom passed away, and all those negative ramifications finally began to leave my system.
Caregiving has done something to me. I’ve changed again-in good ways.
I’m more patient. When I’m with someone now, and I know they need me, I just let go of all the other crap of life.
I’ve learned to be present. I don’t know if I did this so well when my mom was alive, and maybe this happened because at times, I wasn’t present at all with my mom. I wanted to be anywhere but there. Some days, I would have gnawed my own foot off to get free. And here I am, tell you, I’m glad I did it.
I’ve learned to take every, every, every opportunity that comes my way. I’m like that old TV show, My Favorite Martin–my antennas go up whenever a great thing comes my way. I can’t NOT try something new, dance when music plays, make a fool of myself if the occasion calls for it.
I’ve learned that the only regrets at the end of life are not all the things you screwed up. it’s all the chances you didn’t take. Since this caregiving revelation, I’ve eaten squirrel, kissed a snake, held a giant stingray in my arms, skinny dipped on more than one occasion, taken two a.m. bike rides and made out on a pier under the moonlight (with hubby, FYI). I simply can’t let life pass me by. Death did that to me. It singed me and I have to live and love big and hard. I refuse to mewl about my unlived life when I can do something about it…now.
I’ve started speaking my mind. I’m tired of being a coward and taking S**T. I don’t have to blast people, but if you bully me, corner me, or shame me…get ready cause I am too old and I’ve gone through too much to not stand up for myself.
I’ve learned to be easier on myself. I’ve given up worrying about housekeeping–a nap is infinitely more important. A swim on a perfect day is by far, a better use of my time.
I’ve learned not to sweat so much about money and jobs. In the end, these things matter so, so little. I’m still learning this one, but I’m grasping onto this bigger thing: if I do what I love, what I’m gifted at, what I’m passionate about…people value me and pay me pretty darn good for it. And I can’t seem to stomach the idea of paying my dues and feeling like I have to suffer.
I’ve learned that I really do like to do good work. I want to do something, some small thing that matters. i want to write and speak and encourage others. I want to somehow contribute to the good of the world.
And finally, I’m learning to let go of grudges, hurts, and resentments. They really do fade in time. Things I was so heated about 20 years ago don’t faze me now. People I despised and feared are now toothless old lions, and we’re all in the Savannah together just trying to find a little shade and water. it’s not so big, scary and important as I once thought it was.
Where are you? Still in the dark nights of the soul? Has exhaustion and cynicism taken its toll? it’s part of the journey. It won’t last. Caregiving will continue to change you–let it
I’m Carol O’Dell, and I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available at Amazon
