This isn’t the blog or article I ever wanted to write, but as I gather my thoughts for my brother’s memorial service I am reminded that others struggle today and many, many days before and after me to find words that capture and comfort after a loved one has departed.

I could give tips and bullet points, but it’s best to share my heart.

These words are for my brother, Benny. I hope there’s something you can take with you.

I didn’t even know I had a brother until I was 23. I was adopted out of the family at four years old, but I always dreamed of having a big brother. Maybe we know. Deep down.

I met him on his one year sobriety date at a large AA meeting. Perhaps some of you were there. Benny said he embarrassed to meet me that day, to be sharing what all had led him to that day. I can’t tell you anything he did. I can’t even tell you anything he said. All I remember was saying in my heart over and over, “I have a brother!”

I feel that same way today. I have a brother. His name is Benny.

Not I had a brother. I don’t really believe much in this linear time thing, and I don’t believe Benny is no longer here or that our relationship is over.

Still, I miss him. Susan, his wife, Zach, his son, they miss him. So many will miss him.

My heart is flooded with  memories. I called Zach and heard his voice the other day–embedded in this young man’s voice is my brother. I could hear my brother, fall into him, and I see him now–in all of you–in the countless ways he impacted all of our lives.

For me, Benny will always be that young man who had to have his suit altered because his surfer shoulders were too big for his coat. Benny will always be the backyard wanderer out for a smoke, out under the trees, thinking, being. Benny will always be his laughter, the tease in his voice, his Indian heritage tattoo, the books he read, his wedding day standing under the arbor he built, the cedar table he made me, and that unbelievably long and meandering voice mail where he played Indian music for a good five minutes making me slow down, laugh, writhe, and learn to wait….

I don’t know why he’s not here. I have the facts, but it just doesn’t register with my heart. Everything in me says, no, it can’t be. Benny’s going to come sauntering through that door. He’s going to pour himself a cup of black coffee and he’s a plaid shirt and he’s supposed to be here. I can’t, you can’t not hurt, but at least today we can hurt and remember together. Susan, Zach, we can’t take away an ounce of your grief, but I want you to look around you and take heart in this sea of love. It’s for Benny, yes, but it’s also for you.

Each of us are here because Benny touched your lives. He changed your lives. Benny had this way of loving people. He was generous, sometimes too much so, and he had a damn good sense of humor, a way of drawing you to him.

Our family is humbled by Benny’s legacy, by all of you who came to remember him. In so many ways, the recovering community knew Benny better than we did. He shared his soul, his fears, his journey with you–and you with him. Thank you. Thank you for the strength you gave my brother. Thank you for being there for him.

Something in me believes that death doesn’t diminish us. It expands us.

Benny is now in me–in you, in you. All the crap and the pain is gone. The good remains. His words of encouragement. His honestly. His laughter. His quiet ways. The more we share our stories, the more we listen and remember his stories, his moments of insight, and even his simple presence, the more Benny lives.

Benny’s passing was a shock. None of us were ready to say goodbye, and yet all I know to do with this is to allow as much as I can for the sorrow to wash through. That’s all I know to do. With Benny, holding on to the good is easy. There is so much good.

We, his family have learned some hard lessons, lessons for all of us to remember.

Show–and tell your those you love–how very much you love them.

Remind them of their own light, and remember them well.

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart

i carry your heart (i carry it in my heart)

ee cummings

How to Live a Horrible Life:

• Indulge my every whim–even when I’m repeating an already disastrous scenario that didn’t exactly work out the first time.
• Refuse to forgive–especially myself.
• Hold on to, nurse, and even embellish grudges, past hurts, and assumed wrongs.
• Accuse others of stealing from you, talking about you, disliking you (which they probably do by this point) because that further endears you to folks.
• Watch lots of television.
• Buy a scooter. Walking is for sissies.
• Try and force things to happen. It’s exhausting and not trusting, but it’s based on believing that I’m actually in control–of anything and everything.
• Keep that inner monologue of self-doubt and self-loathing going 24/7.
• –while simultaneously blaming anybody and everybody else for my crappy life.
• Get too little sleep, indulge in too many processed foods/sweets, and take a pill, any pill, all the pills I can find–for everything from a hangnail to hemorrhoids.
• Never do anything that’s not for my own direct benefit.
• Give up, give in, and then complain about how nothing ever works out for me.
• Never say thank you.

There’s a great site for just such a letter. It’s www.FutureMe.org.

It’s a place to write yourself letters–letters of encouragement, advice, or just to capture where you are today so that the future you and remember, really remember. I go there often–leave myself little notes–remember to laugh out loud at least once a day–to take a risk–to ask forgiveness. You can email it to yourself at any future date.

So here’s mine–about how I want to face those last hours on this earth. I’m hoping that I will have to email myself this same letter again and again–that I’ll have a bit of time to taste the sweetness this world has to offer.

Dear FutureMe,

I have no idea when your day will come, but when it does–be brave. Meet the next big adventure with a smile and a “let’s see what’s next” kind of attitude.

In the meantime, tell people you love them, be grateful. Laugh. Give. For-give. Embrace whatever comes down your path–where ever you live, whoever you’re with, whatever it is that you do–give it your whole heart.

All I know is life is full of change. Switchbacks, surprises, knock your breath out and catch your breath moments–gather them all.

You’re going to lose people you love, and nothing can stop the hurt that’s to come. Try to let all the bitter disappointments, rejections, losses, and sorrows to pass through you. We have to let go and as hard or impossible as it might seem, that’s what life asks of us. Glean their truths without holding onto bitterness or cynicism.

Learn. Grow. Never settle. Forget this “I’m old” crap. Not everyone sits in a recliner and gives up, so hang out with those who inspire you. Be bold! Do the unexpected. Learn to fly a plane at 80, volunteer at a free clinic in Ethiopia, paint some kick-ass graffiti or climb the Eiffel tower–whatever grabs your heart and won’t let go.

Trust that what you want–wants you.

Leave this world a better place than you found it.

And when the time comes–be at peace–whether you’re  garden dirt (which is a lovely thought, to help flowers and trees grow) or star-dust in a distant galaxy, or fishing by a lazy river with Daddy–trust that whatever is next, is exactly as it should be–and that for me is the definition of Heaven.

When the time comes for you to go, this is what I want you to do:

Take a deep breath. Remember being on a boat. You’re coming back from a day trip–Mexico or the South of France–and you’re on top. You’re a little pink with sunburn, a little buzzed on rum punch, and the wind on your skin feels oh so good. Phillip is beside you and he’s holding your hand. He feels strong and warm and you lean on him. The sun is setting but it’s so bright that you close your eyes. All you can feel is the hum of the boat, the rhythmic bounce of waves, the occasional salt spray that cools your face.

This day, this life, was everything you ever wanted. You are full. You are exhausted and spent–in the best of ways. You think of all those you love–and you know without even opening your eyes that they’re surrounding you–those who are still on this earth and those beyond. You feel their love. They’re here to celebrate you.

And all you can feel is deep, sweet rest and the boat and the wind–taking you home.

Love big. Laugh bigger.

Life is oh so sweet.

~Carol

On a boat, off the coast of Cassis, France

Carol D. O’Dell

www.caroldodell.com 

Author of Mothering Mother, available on Kindle and in hardback on Amazon

Long term caregiving can feel as if you’ve held your breath so long you don’t know how to inhale and exhale like all the other folks on the planet.

My friend is coming up on the first anniversary of her dad’s passing. Fifteen years spent as a caregiver (primarily) and her hair is now strikingly white, she has a new husband, and for better or worse she’ll tell you she’s just not the same gal she was when she agreed to move in and care for her mom, then dad all those years ago.

Perhaps a better question is, “Where am I?”

Where was I doesn’t particularly matter. You’re however many years older. Your experiences, beliefs, and even issues have changed. And that’s okay. It has to be. It’s the nature of living–things change and so do we.

It’s not that things changed, most of us get that, it’s that aspects of our selves, our lives, were in stasis. We feel like we’ve been in cryogenic sleep and have no idea who won that last 20 World Series. Life has gone on without you. You have no idea what movies are in theatres, and whatever happened to DVD’s?

You may be thinking about going back to work, but what are you qualified to do–other than bring juice, fluff pillows, and argue with insurance companies?

Getting traction, momentum may take some time–and while you’re figuring this all out–grief sweeps in like giant waves crashing on top of you, buckling your knees, you come up sputtering with a mouthful of grit and a belly full of hurt.

Letting go of what was will eventually come. Let it. No, you’re not 35 any more, but 55 isn’t so bad. There are a few perks that come with aging, with living, with loving for so long. Letting go takes time. We don’t open our grip without some resistance.

In Finding Your Own North Star by life coach Martha Beck, she talks about being in quadrant one–when all we know dies, when our lives are reduced to rubble and we stand in the ruins, ashy, beat up, stunned, and the mantra is:

I don’t know what’s happening, and that’s okay.

It’s okay to not know what comes next.

It’s okay to have a decent hour when you’re not consumed with grief or anxiety followed by four crappy, baseball in the back of the knees–ones.

It’s okay not to have a plan.

It’s okay to bump into walls.

It’s okay to cry–not cry, scream–not scream.

That’s where you are.

And that’s okay.

My only suggestion is this:

Do what soothes you, follow any inkling of a curiosity, buy, borrow, visit anything or anyone that stirs something in you. These are the seeds of desire.

And our desires, however small or trivial doesn’t matter, are the thread thin roots of our new selves.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Like a very full Lazy-Susan, no matter where we turn there’s someone who needs our care. Celebrities in the news are facing what you and I face–Maria Shriver lost both her parents recently (her dad to Alzheimer’s), not to mention man troubles. Having a circle of friends where you can be honest about the guilt, the resentment, the sorrow, the changes, the disappointments life brings, the feelings of never being able to do enough, give enough, care –that circle of friends can save our sanity  (and maybe keep us off death row–or provide an alibi!) and at times may be our only lifeline when all we thought we knew crumbles.

ABC Nightly News recently called me for a quote to be aired on a caregiving report on the “Most Stressed Woman in America.” I’m not surprised she was a middle-aged caregiver. That’s not a beauty pageant I want to win.

And just as we find ourselves we begin to lose another–our parents are aging and disease is rearing its horns. We barely get two seconds to ourselves before we have to step up and make some of the scariest decisions of our lives. Can my parent still drive, live alone, should I move them in with me, into a care facility, should I trust this doctor, there’s so much I don’t know, how do I manage their care when my heart is breaking? And eventually, how do I begin to say goodbye?

Questions of who am I now, and who will I be without you circle like crows.

Women over 50 are strong and resilient. They know how and when to let loose and have fun. They’re fierce, love their family and friends, juggle far more than a set of china plates. They’ve weathered divorce, head lice, runaway teens, breast cancer, hemorrhoids, death and lost car keys–the big and small tragedies that come and go.

Don ‘t underestimate a boomer caregiver. They’re diplomats, warriors, shamans and alchemists. They hear the tick, tick of the clock and it doesn’t scare them–it motivates them. They’ve got plenty of goals but as they age they get off the kick of having to be crazy-busy all the time–being clear about knowing what you want and no longer wanting it all makes for a good life. Health, family, friends, simple joys like holding hands, waking to your favorite coffee, and taking a walk in the woods–that’s what matters.

I’ve recently joined this tribe and their example of wisdom and moxie is a good road map to follow. As I let go of youth I reach and strong hands surround me. I’ve read it’s not what comes next that scares us–it’s the change–that in between time just before we let go and leap. Free fall. It helps to have my friends cheering me on–and holding the rope.

Boomers and caregiving may come in tandem, but so do boomers and friends.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

I used to sarcastically gripe that I was doing time in Sing-Sing and planning a prison escape (the humor aspect gave me some relief but it also allowed me to hear myself out loud). Some days everything in me wanted to run–and yet I had chosen to care for my mom. Why was this so horrible? She needed me and I was the only one.

Her insurance had said that Alzheimer’s didn’t require “skilled nursing care,” therefore didn’t cover it. I cried that day. I felt I had no way out. I didn’t want to take my mom to just any home and leave her there–I had to know she was cared for, and it seemed like I was the only one. What got to me was my lack of choice–which started with me.

And then I saw this beautiful photograph of a cloister. I’m not Catholic, but I’ve long admired a monk’s or nun’s dedication to live in a serene, dedicated environment. Cloisters are peaceful, safe, a haven in the midst of a chaotic world. It’s not that a monk or nun can’t leave–but most stay–the ones who chose this life of their own accord.

That’s when I decided to stop thinking of my life as serving a prison term. I have a good home, a lush yard, and I’m doing something I believe in. I looked around–at the books, the unfinished art projects, the exercise ball and treadmill, the stocked pantry–this isn’t a shabby place to be!

Just that shift re-centered me. I pulled books off the shelf I’ve owned for years but hadn’t got to read. I pulled out a painting I hadn’t finished and started following a couple of Food Channel chefs and gaining some culinary skills. I got out the binoculars and mom and I started watching a pair of cardinals raise their babies in a nearby nest (I’d have to hold the binoculars for her, but she caught a few glimpses).

This one shift–from prison to cloister–gave me a small measure of peace and a grateful heart (but I still snuck a spoon from the kitchen utensil drawer–in case I need to dig a tunnel).

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Irene is bearing up the East Coast. Hurricanes are big, swirling monsters, but they do give us time to evacuate. Caregivers might have to evacuate an elder and that comes with quick and last second decisions. This blog focuses on the few (critical) hours before and after evacuation and hopefully offer some out of the box ideas to help get you to safe ground–fast.

Evacuating Elders Safely:

• Don’t watch the news incessantly or in front of your care buddy—it can make your elder (and children) nervous/anxious. (My mom who had Parkinson’s' and Alzheimer’s through that we were back in WWII when the 9/11 tragedy struck).
• Quietly gather supplies (flashlight, wallets, water, powerbars or crackers and peanut butter, blankets and pillows if you can) and don’t wait too long. It’s best to give yourself plenty of time and try not to rush. Know where you’re going—shelter, hotel, other family member’s house—and let others know you’re A,B, and C plans.
• Leave early. You don’t want a frail elder to have to scramble to a roof  or get them into a small boat to avoid drowning in a  flood.
• Ask your assisted living facility or long-term care facility about their evacuation plan and know where your loved one will be taken and how you will be notified.
• Keep medications in grab and go containers for quick evacuation. Take it all–who knows when you’ll be able to get back to normal.
•  If your parent has a certain condition and you fear you may be separated, write on their arm/leg with a sharpie their name, your name, phone number and when meds need to be taken, what condition they have, etc.
• Make sure that you have a copy of all insurance/medical information –as well as house insurance since many times you can’t get back into the house to get policies.
• If you’re a working caregiver or long distance caregiver (really, everyone) have a back up person (neighbor, close friend who lives nearby) who knows it’s their job to check on and if need be, evacuate your loved one.
• If you do need to evacuate write with a lipstick/sharpie marker, etc. on your front door who is with you and where you’ve gone—it’s awful to panic and worry that your loved ones can’t be found
• Be specific. When things get hectic people feel uncertain. Give specific directions (“Get mom and go to X shelter,” or “Mom, get your purse and your cane. We are going to X). Sound calm but authoritative so that people feel
  safe and know exactly what they need to do.
• Be super careful as you leave your home–the terrain could be wet, rocky, slick and uncertain. No need for an accident to happen–at the worst of times.
• Know what comforts your elder–a certain way you talk, a song, a photo. Disasters disrupt routines and throw us into uncertain circumstances. Knowing what calms, what triggers–what does and doesn’t work is important to helping your loved one adjust.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Other helpful information can be found  at:

http://www.caring.com/articles/natural-disaster-tips

http://www.ready.gov/america/beinformed/hurricanes.html

http://www.cdc.gov/aging/pdf/disaster_planning_tips.pdf

Here is a link to Caring.com’s YouTube channel to view the NBC Miami Live interview:

http://www.youtube.com/user/caringcom#p/u/0/u_8LHy-Cjto

It’s such a big decision and you want to make sure your loved one adjusts and is safe and well cared for. Are there specific points to help guide you through the search? It’s so overwhelming I thought I’d just bring up three key points to help guide you.

3 Tips to Consider When Searching for a Senior Care Facility:

• Look past the fancy “storefront” and notice how folks are being treated. More and more facilities are beginning to look like country clubs, and that’s great but real care is what you’re after. Look past the golf carts that whiz you in and out, look past the luscious garden-like entrance, past the swanky lobby and even ask to see something other than the staged guest room all decked out with new pictures on the wall and a great view of the courtyard. Ask to have lunch with the residents. Stroll to the community center or gathering room. See if you can go down the hall where your loved one might be placed and see who their neighbors will be.
• Don’t just take the tour–branch off–ask the residents (and their family members) who live there. Ask the residents if they like the food, if they get their medications on time. Ask their family members if they’ve ever had a bed sore or have problems with any of the staff or other residents. Even if they say the right words, notice how they hesitate, get antsy, or look around as if they’ll be heard. If your loved one has dementia ask to see that ward. Make sure there are safety measures for them not wandering away, and also make sure they are spoken to in a firm but kind manner. Look in their faces and see if they have that hazy drug look. Notice if they’re dressed, if their rooms are tidy, and if there’s a smell of urine in the air.
• Ask how concerns will be handled, and what you can do if you need to change care facilities. Face it, you’re going to have certain questions and concerns. You’re going to have to ask them if they’ll change something to accommodate your loved one’s needs–that’s just normal adjustments. Find out how that’s handled up front. Talk to not only the day staff, but the night and weekend staff. Ask how they do their background checks and if they’re updated. Ask how you handle serious issues and what happens if you choose to move your loved one to a different facility.

Don’t think that once you move them in that your job as a caregiver is over. It’s not. You’re their care advocate. Visit often and not at the same time. Be cordial with the staff, get to know them and genuinely care about them. Bring in a treat or send them a thank you card if they’ve done something thoughtful or helpful. People respond to positive reenforcement and caring for a (sometimes) cantankerous, sick person who isn’t always jolly is more than a job, it’s a calling. It’s to your benefit to reach out. People who are visited often receive better care, and besides, it’s just the right thing to do.

There’s so much more I could talk about, but this is enough for now. In the end, follow your gut instinct. Stay involved and do all you can to surround your aging loved one with good care–no matter where that might be.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Got a caregiving question: Send it to me, Carol O’Dell, Caring.com’s Family Advisor at Carol@caring.com

(NBC Miami Live interview is now on Caring.com’s YouTube channel (click on link below):

http://www.youtube.com/user/caringcom#p/u/0/u_8LHy-Cjto

How to Choose a Care  Facility For a Loved One:

• Plan early—don’t wait until it’s an emergency. The highest rated
  care homes usually have a waiting list.
• Don’t pay for more than you need. Know that cost rises with care needs, so don’t pay for services your loved one doesn’t need–yet. Ask if they have a graduated care situation or whether your loved one will have to find another home if their care needs increase.
• Consider smaller care facilities or even a group home. Bigger isn’t always better.
• Don’t get razzle-dazzled by fancy entrances/amenities. Look past all that and notice how the staff interacts with their residents–are they caring, engaged, friendly, and prompt?
• Visit several times/and several shifts before making your
  decision–and eat the food for yourself–and if you can, talk to a resident or family member of someone who’s already living there
• Consider visiting with a friend or someone who is impartial and can notice things you don’t want to–or can’t see.
• Ask other caregivers if they know about this facility and
  “what’s the word on the street?” Check out a care home rating site such as the ones listed at: http://www.consumerhealthratings.com/index.php?action=showSubCats&cat_id=268
• Check online for more facility information and reviews–Caring.com lists care homes, facilities and hospices in your area–along with helpful checklists and other info to assist you http://www.caring.com/local
• Does the facility offer family support services, such as caregiver support
  groups and family event days?
• Discuss how client and family concerns are handled, what is the
  protocol for disputes? Also find out the procedure for how to move your loved one to another facility if that becomes a necessity.
• Ask about turnover rate of employees and residents. If people are happy–they stay.
•  Ask how they screen their employees and how often this is
  updated (know that some care facilities allow employees to have misdemeanors, etc. on their record)
• Ask to view the ACA survey. It will list the facility’s records on everything from safety records, employee issues, MRSA and other infections, bed sores, accident/fall rates.
• How is orientation handled and what efforts are made to
  integrate your loved one with the staff and other clients?
• Find out if your spouse/parent’s doctors/hospital serve this
  care facility or if you will have to find all new doctors. (Many physicians or their assistants visit care homes, which can make it easier than your family member having to make a trip into the doctor’s office.
• Consider location and how often you–and others–can visit.
• Consider other location factors–should your loved one stay in their own community where they have friends, doctors, and religious support?
• Never forget that you are your loved one’s care advocate. Stay involved, hang out, and continue to be aware of their physical, financial, and emotional needs.
• Visit often and make sure it’s not a “to do” session. Caregiving can strip you of your most important role–to be the spouse, partner, daughter or son. Once your loved one settles in, then it’s time to make an effort to be their emotional support–brighten their day by wearing a smile, bringing small presents, taking them outside (if possible) or bringing them home for a few days around the holidays.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Other great care facility information can be found at:

http://www.caring.com/articles/caring-checklist-evaluating-an-assisted-living-facility