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Archive for the ‘kunati’ Category

I’m not much for regrets. I don’t think we as individuals, family members, or caregivers should even strive to perfect. Our faults and foibles define us and teach us. Besides, have you ever been around someone who was trying too hard? It’s exhausting and annoying. I love the Japanese concept of Wabi-Sabi–the beauty found in imperfection.

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-nessand business is not necessarily the same), franticness, 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 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.

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.

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.

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.

There are lots of great sites on the Internet about families, caregiving, Alzheimer’s, elder-careparentsand 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.

~Carol O’Dell

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.

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Halloween is just for kids? Who says?

Our elders really get a kick out of Halloween. They love to see the kids dress up and enjoy handing out candy, or at least watching the parade of adorable angels, fairies, pirates, and ghosts walk by.

Easy Ways to Enjoy the Fall and Halloween Season:

  • Pick up a pumpkin at the grocery store. Even if you don’t cut it, it’s still pretty sitting on the front porch.
  • Decorate your house with a few spooky bats. Use some black construction paper or even use some purple, red, or green wrapping paper–who says bats have to be black?
  • Hang a ghost from a tree–all you need is a sheet and two black eyes and some string.
  • Buy a witch’s hat at a discount store and walk around with a broom and cackle. Your mom or dad will perk up, I promise, if you greet them with their afternoon meds as a witch!
  • Splurge on a little Halloween candy. Get something your mom or dad can eat. A couple of marshmallow pumpkins won’t hurt anything. We all have a sweet tooth–at any age. My mom had a thing for Little Debbie snacks–and I couldn’t help but let her enjoy herself with a couple of swiss cake rolls every once in a while.
  • Plan ahead, bundle up your senior, and either sit outside or near the front door and pass out candy.
  • Light some candles or even string a few Christmas lights around your door–you can leave them up for the next two months and they give off a nice glow.
  • Make it a point to meet a few of your neighbors. If you don’t know your neighbors, you need to–and what better way to strike up a conversation than over a cup of hot cider or commenting on how cute their kids are.
  • Do you know that young couples miss their grandparents and would love a surrogate grandpa or grandmother for their kids to look up to?
  • Let your mom or dad be the candy passer-outer. That will allow them to see the children’s costumes and they’ll enjoy the festivities.
  • Consider renting a oldie–but goodie. How about the Bride of Frankenstein–or the old Dracula? If you mom or dad don’t seem to be up for being frightened, then try a little Planet Earth–the one about all the bats in the caves of Mexico scared me more than any scary movie ever could! For a G-rated film, try Charlie Brown’s Halloween Special.
  • Make a pot of veggie soup–or chili. Mix up some cornbread and enjoy the fall chill in the air.
  • If you’re near your grandkids, then consider going to their house and enjoying the fun. This is how you make family memories–and it’s worth the trouble.

I read this great short story once about a daughter who took her mom, who had Alzheimer’s, to a Halloween party. Her mom loved it–and totally got into the masks and charades and felt free–not to have to be one person or another–to be concerned with knowing someone, recognizing someone. For Halloween night, she could be anybody she wanted.

I have a favorite Halloween memory of my mom and me. It’s a bit unusual since I grew up in a strict religious household–my mom was a minister–so you don’t exactly think they’d buy into the whole Halloween thing, but she did. I’m glad she didn’t take it too serious because to this day, and I still love to dress up.

I hope you enjoy this excerpt from my forthcoming memoir, SAID CHILD, which is the prequel to Mothering Mother. (SAID CHILD is about being adopted at age four, and my search for my birth family–and how I learned to love both my adoptive and birth family). 

 

               Daddy had been in the hospital for back surgery on Halloween when I was about eight or nine years old. It was an especially cold Georgia Halloween night and I fidgeted beside his hospital bed, tired of coloring and wanting to go home and get on my fairy costume and go trick-or-treating. By the time Mama and I kissed Daddy goodbye and we made it out of the hospital and hit the cold night air of the parking lot, I realized it was long since dark. The cold bit into my chest.

“Don’t worry, I have an idea,” she said as she walked a little faster.

We hurried home and I moped around, standing on the heater grate, curling my sock feet over the metal edges for warmth. Mama burst out of her bedroom,

“Count to one hundred, and then come knock on my bedroom door.”

What was she up to? I did as I was told.

“Ninety-eight, ninety-nine, one hundred.” Knock, knock.

Mama cracked open the bedroom door. She peeked out with a sheet over her head,

“Ohhh!” She moaned like a ghost. I squealed and giggled.

“I am a Halloween ghost!” she said in a low voice spooky voice. “Would you like some candy, little girl?”

I ran and got my orange plastic pumpkin bucket and thrust it toward the door. Mama dumped in a handful of Bit-O-Honey candies. She leaned down and whispered for me to count to one hundred again with my eyes closed, and then go to the bathroom door and knock. She motioned for me to turn away as she ran to the next room.

Mama opened the bathroom door wearing Daddy’s trench coat and hat and a mustache she must have drawn on with her eyebrow pencil. I laughed until I fell down and then held out my plastic pumpkin as she emptied Bazooka bubble gum into it.

We ran from room to room and each time Mama appeared as a new character—a maid with apron and spoon in the kitchen, a lady in a evening gown and fancy hat in the closet, a little girl with curlers in her hair and a teddy bear when she emerged from my room.

 

Mama wasn’t so boring after all. As regular as a clock, she kept my childhood in order. She made sure I scrubbed under my fingernails and practiced my times tables. But she was also a mother capable of a surprise or two–especially on Halloween. 

***

Have a Happy, Safe, and Fun Halloween!

~Carol O’Dell

Author of Mothering Mother

Family Advisor at Caring.com  

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Today, I switch roles from the caregiver blogging perspective to that of the care receiver–

specifically, the aging parent.

If you’re a caregiver/son, daughter, please read this post.

You need to put yourself in their shoes.

But I don’t want to live with my adult children!

I don’t blame you. Me neither.

(And I wrote the book, Mothering Mother–and my mom lived with me the last (almost) three years of her life!) But that’s my point–my mother lived on her own–with Parkinson’s and early dementia until she was 89 years old!

We’ll all be in this predicament one day–if we live that long–so we need to be empathetic.

My kids are grown, responsible, and we all love each other–and I still don’t relish the thought of permanently living with them! I am a big proponent of family caregiving–but do it when the time is right.

No one wants to give up their independence.

We like things our way, our household “rules,” TV shows, and favorite laundry detergent. Things seemingly insignificant choices give us a sense of autonomy and joy to every day life.

I don’t want to be a burden. 

I hear this a lot. I feel it on a personal level, but know that when it’s necessary–cancer, end of life, when it’s really needed, then it’s not a burden. It’s a privilege–

Ad you still have much to give.

Encourgement, humor, appreciation, family togetherness is a rare and precious gift and should not be under-appreciated.

I feel privileged to have children. And I know if/when I have to, we would all do our best to make it work. I’m grateful I have the option if I needed it.

There are many people who do not have children. Or their children are not able or willing to help.

No time for a pity party. Get busy! Use this as a catalyst to get busy doing just that–planning your life–for quality and purpose.

If you don’t want to live in a care facility (prematurely, and hopefully never) or with someone else–family member or not, then I (and you) better have a plan.

Note: Decide today to be okay how your life turns out–either way. Who knows what wil happen? 

Have you heard of the aging in place movement?

This July AARP released a new report citing that 87% of people with disabilities age 50 and older want to receive long-term care (LTC) services in their own homes.

The National Aging in Place Organization is about collaboration and education to live at home as long as possible.

Aging in Place includes building/altering your home so that you can stay there safely as long as possible.

It might also include a ramp, ample doorways and bathrooms for wheelchair accommodation, safe flooring, and even a space for live-in care. It’s up to each individual to make these arrangements to suit (by anticipating) their needs. This term is also loosely used to help individuals begin to plan for their future in terms of how and where they want to live as life progresses.

Aging in place might even include moving so that you are living in an area where retirement and aging is not only enjoyable, but that you also have ample resources within your community for the care you might need.

Or…it might include living close enough to your adult children so that they can easily check on you and manage your care without having to live with you. ( I know of three families in our neighborhood whose mothers/parents also live in another house in the neighborhood).

Recently, after Tropical Storm Faye, I saw one of the son-in-laws picking up debris out of his mother-in-law’s yard. At least he didn’t have to drive an hour or two to do this little chore–or worry about someone charging her an exorbitant price for a job that took less than an hour.

How to Arrange Your Life So That You Can Live at Home Longer:

(consider one or more of the following suggestions)

  • Move your bedroom on the first/main floor
  • Do a computer search or call your council on aging and get a list of all your community’s resources now. Don’t wait until you need help to start this process.
  • Consider redoing your main bath to accommodate a wheelchair/walker–and make your shower easy to get in and out of
  • If your spouse has passed away, consider a roommate. Finish a garage or basement if you’d like it to be more private and separate. This $10-20,000 investment (if it’s done well) could give you added years at home–you could even trade rent for care.
  • Be sure that if you choose to do this that you both sign a contract for renting, you get driver’s license info, run a background check and never ever give them access or personal/financial information.
  • Even though there are risks involved, having someone live with you or on your property can provide a certain sense of security, companionship, and allow you to stay home much longer than living alone.
  • Consider an alarm system if you feel you live in an area where you’re vulnerable to break-ins. Check with your local police to see if this is a common occurrence. Elders can be targets for easy crimes.
  • Don’t blab to every cable and lawn guy that you live alone. Always act like your son/nephew is in the house, coming home, on the phone. Even if you don’t have one–never let others think you’re always alone. Don’t be an easy target!
  • Consider “the button,” a monitoring device you wear in case you fall. There are systems that will call and check on you morning and night (of course, you pay extra for this), but it might give you and those who love you a peace of mind to know that you can call for help at any time.
  • Wear the thing! My mom was terrible about leaving it on a piece of clothing she wasn’t wearing, forgetting where it was–and caregivers, family members–if your loved one has memory loss, this may not help them. They won’t necessarily remember they have “the button” on, or even what it’s for!
  • Get rid of clutter now! Clutter can cause you to fall and gets to be a real hassle for those caring for you. Don’t leave this to your family to do later–give those sentimental items to your family members now so that you can see the joy on their face when they use their grandmother’s dishes or wear a family heirloom piece of jewelry
  • Gather all your important documents–insurance info, cards, prescriptions, life insurance, house insurance and living will. Place these items in a portable box and let your loved ones know where it is–for easy access. 
  • Do that living will now–don’t make your loved ones have to guess or fight over whether you’d want to be put on a ventilator or not. Be clear. Make several copies and give them to all the important peopel–one for you, your main doctor, the hospital you’re likely to go to, and one or two loved ones/guardians who would get to you quickly in times of emergency.
  • Get a recliner chair that can lift you out easily (consider this your next purchase when the current chair needs to be replaced)
  • Eventually consider a bed that is motorized–this added expense really helps if you have back problems and can sometimes be covered on insurance
  • Place tread on any slick floors inside or outside your house to avoid slipping
  • Remove any throw rugs that might trip you–(you may need to do this later or if you tend to shuffle)
  • Begin to think about your options if/when you can no longer drive–is there a senior van in your area? Friends/neighbors who you can ride with or will pick up a few items for you? Even consider a taxi–most areas have taxis (even if you’ve never used one in your area before, they’re probably there). Don’t sit at home and waste away–even if your eyes or your coordination begin to wane, you can still get out and enjoy life.
  • Continue to be a part of your local church/temple. Make friends–you need them, and they need you! Churches and community organizations are there to help. Let them. Helping others make us feel good–don’t be so stubborn and independent that you don’t allow someone else to give and feel good. If someone is willing to pick you up to take you to Sunday School or choir practice–let them~ You still get to go to an activity (which is good for you), and they feel like they’ve helped someone. Win-win.
  • Get to know your neighbors. You can all keep an eye on each other. Be nice to the kids in your neighborhood–they can rake your leaves or bring you the mail. Most children and even teens long for a grandparent and don’t get to see theirs enough. Wave! Smile, get to know their moms and dads so they trust you. Bake a cake and take it to them. Cultivate relationships. Old-fashioned neighborliness and friendship never grows old and is never out of style.
  • Choose where you want to pass away. Hospice offers you the choice to spend your last few months/weeks/days at home and can offer palliative care (pain management). Most people choose to be in their own home and to surrounded by those they love. Let people know now–most areas of the country have access to hospice. The diagnosis is that you have a life-limiting condition with a diagnosis or a year or less to live.
  • Don’t wait until the last minute–ask for hospice. Anyone can refer you to hospice (including yourself or your physician). Also know that many cities have more than one hospice with varying levels of care and options. Check them out to see what’s available to you.

Bottom line:

Plan now. If you’re over 50, then you better start planning. Having a 401K isn’t enough. It doesn’t take care of the details and quality of life–and money won’t fix everything.

Adapt your house to suit your aging needs.

If it’s not too late, and you need to, move closer to family so that it’s not hard for them to drop by and check on you.

And…or…live in a community that is “elder friendly,” with lots of resources.

Stay involved with people. Accept their help. Give back any way you can. A smile, a hug, homemade cookies will get you lots of friends. Neighbors are important. Do more than wave. You might need them one day.

Stay/get involved in church and other community activities. The more plugged in you are, the more people you have in your life, the more your mind/body stays active. Staying active will keep you at home.

No longer driving is not the end of the world. Figure out how to make it work–taxi, community van, church members/neighbors.

Consider a roommate or a family member living arrangement. Just be safe, sign a contract, and do a background check. ( I know of several nieces/nephews who are young and starting out in life by sharing a house with an aunt or grandmother).

Get help when you need it–hiring day-time care is cheaper than a care facility. There are many great companies such as Comfort Keepers who are licensed, bonded, flexible and reasonable–usually less than $20.00 an hour.

Wherever you are and whatever life throws at you–continue to smile, see the good, and find ways to give and receive love.

Carol D. O’Dell, and I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon, other online stores and in bookstores. Kunati Publishing

I’m a family advisor on Caring.com, and my syndicated blog appears on www.opentohope.com.

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I have a friend who fled New Orleans a few days ago.

He is father, a dad, a son, and a husband. He left town with a caravan.

He’s a caregiver extraordinaire. Not because he thought it’d be fun.

It’s because he loves his family.

In one car was his wife, his wife’s mother who is wheelchair bound and with a catheter and oxygen.

In another a car iwas his college age daughter with all their belongings.

In another car was his teenage daughter with all their pets–four cats, and a puppy.

He was driving the lead car–and in his car is his mother and father. His father has Alzheimer’s.

They’re headed to a hotel in Texas to hold up until Gustav blows over.

He learned the hard way.

They evacuated for Katrina,but only after the winds and rains started. Their house had to be demolished. They were living in a hotel and fema trailer for 15 months.

Now again…

My heart aches for him. He’s got to be exhausted and worried. How many times can he do this?

If he moves to another city or state he has to get a job, relocate kids in school, move his parents and his mother-in-law and parents, all of who depend n him and his wife.

This is the epitome of being a sandwich generation. Enough stress to make your head explode.

What catastrophe could come your way?

Nature? Could you get slammed with a blizzard? A flood? What about a terrorist attack? We can’t say that won’t happen…

What would two weeks without electricity do to you and your loved ones? What if their meds ran out? What if you yourself got sick or hurt and could no longer maintain your caregiving responsibilities?

Here’s a short list of preparing for emergency care with a ill or aged loved one:

  • Know your route out of town if you need to evacuate
  • Don’t wait until the last minute
  • Keep meds and medical information in a plastic container that won’t get wet and will be easy to grab and go
  • Don’t over talk this and get your loved one worked up
  • Don’t watch the news in front of them–make your plan and be prepared. Quietly move to go items near the door or loaded into the car
  • Consider golashes for the entire family–if there’s rain or snow or ice, this makes it easier to transport people
  • Keep med times and meal times and bedtimes as structured, on-time and normal as you can. This will keep your loved one calm and functioning as well as possible
  • If your loved one moves slowly, consider buying a used wheelchair so that you can move them around easier if you have to change locations often or at the last minute
  • Know where special needs shelters are in your area
  • If you have pets–Google pet friendly hotels along your escape route. Call early–pet friendly hotels get filled fast
  • Take important docs including living wills and DPOA
  • Prepare for stress related issues to come up. Stress is hard on a healthy body for reeks havoc on people with neurological diseases. Too much information to process can overload their delicate neurons so expect their speech, motor skills, etc. to not funciton as well
  • Stay together. You are their lifeline. Don’t get separated in a crowd. Refuse to leave them.
  • Consider a medical alert bracelet or necklace with ID information–especially for those iwth dementia or Alzhiemer’s
  • Even if your loved one isn’t in adult diapers, you might want to keep some on hand for this kind of emergency
  • Stay focused. Getting everyone to safety will take your full attention and physical endurance.
  • Keep a sense of humor. As difficult–and scary as all this is, there’s nothing more reassuring that everything will be all right than a smile, a hug, or a laugh when things get crazy.

As long as you make it out of your emergency situation with those you love–and everyone is safe–that’s all that matters.

Take the time to prepare now. So many people depend on you as a caregiver–you’re their lifeline.

Do all you can to ensure the safety of those who are vulnerable–those you love.

And take it from my friend who is safe and dry in a hotel (with his whole gang, (dogs and cats and moms and dads, and mom-in-law, and wife and kids) somewhere deep in the heart of Texas–leave early!

Carol D. O’Dell, and I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

It’s available on Amazon, other online stores and in bookstores. Kunati Publishing

I’m a family advisor on Caring.com, and my syndicated blog appears on www.opentohope.com.

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Sometimes stress causes us to come to a complete stand still.

I know, because right now my house is in complete turmoil.

My entire downstairs was flooded two days ago and they’ve ripped up the carpet and baseboards–I have about 25 fans and giant humidifiers everywhere. Stuff is everywhere and I’m assessing the damage. I”m grateful that this is the only drama that has come my way recently, but stil, it’s unsettling.

I find myself staring a lot. I sit on the front porch and try to read or work–but I just sit and stare.

It reminds me of the chaos of caregiving–how your life, your aspirations are displaced.

When I first realized my mother had Alzheimer’s, I felt complete immobilized. What does this mean? Where will it take us? How bad will it get?

I felt like I couldn’t find myself or remember what it was I was supposed to do. Whenever I wasn’t cutting a pill or making a dinner tray or driving my mother to a doctor, I’d fall into the crevasse of nothingness. I just couldn’t figure out what it was I was supposed to do or if it really felt important enough to bother with. Sure, I had a list–but no motivation.

Whenever I talk to caregivers now, I am usually upbeat with lots of suggestions. I’m surprised no one’s slugged me in the arm yet. My chipperness could get on somebody’s “last nerve,” as my Mama used to say.

I’m not going to offer you any tips today. I’m going to sit with you. If I were there–I’d flop down next to you and not say a word. Sometimes you don’t want to be fixed, you just need to know you’re not alone.

If you find yourself numb, lost, blah, and overall, good for nothin’, then hey, don’t fight it. Not today. It might just be where you need to be. For awhile.

I promise–life will eventually change. The monotony will give way, the mood funk wil pass. Sometimes, we don’t let ourselves feel the sorrow and grief that comes with caregiving. We try to stay up, up, up–and then it all backfires. Trust yourself, your body, your emotions. You will come out of this.

Sadly, loved ones pass. Death gives way to life.

Life cycles around again. Births will come–birth of spring, of flowers and birds–it happens every year and it will happen to you. You will have energy and joy and purpose again in your life. You will laugh and dream. Today and all of its paralyzing emotions will pass.

~Carol D. O’Dell

Check out my book–Mothering Mother, A Daughter’s Humorous and Heartbreaking Memoir

available in bookstore and online–and on Amazon \

Kunati Publishing

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Those last few hours, days, weeks, or months are a mix or panic, sorrow, numbness, and tenderness.

It usually comes after an accident, diagnosis, or surgery–or sometimes, for our elderly, it follows a slow, painful descent.

However you got here, my heart goes out to you.

“I Don’t Know What I Should be Doing Right Now.”

This is normal. You feel lost, kicked in the gut–you have little or no experience at this.

I know your world feels as if it’s falling apart. You might feel the need to control everything, or you may feel that nothing is important. You may be going a mile a minute, making phone calls, demanding to see doctors, exploring treatment options–or you may be paralyzed and all you can do is sit next to your loved one and try not to cry.

Either way is fine. Your’re on auto-pilot. This is fight or flight. You wish you could just go back to life as before, but you can’t. You wish you could be a caregiver–as hard as it is, it sure beats feeling helpless.

Let others step in–or tell them everyone that everything can wait. Do what’s natural.

The Bare Essentials–A Few Important Things to Remember:

  • Get a piece of paper and pen–write down anything the doctors or nurses tell you–you’ll be glad you did when someone asks you something and you have a complete mind meltdown
  • Keep track of your loved one’s meds and treatment times–realize the care staff isn’t going to deliver the meds on the dot, but you have the right to ask–especially with pain meds (which can be done with IV) your loved one should be kept comfortable–and you can insist on this
  • Designate a liason–a family member or friend who can field calls and coordinate plans–they’ll feel useful and you won’t feel overwhelmed
  • Pace yourself. If you’re in a hospital or hospice or at home, know that you have to keep some strength and clarity in reserve–in case you need it
  • Get your sleep–and get a bit of fresh air–you may be called on to make a very important decision–do you really want to do that on no sleep?
  • If your loved one can talk, initiate a conversation about end of life care–feeding tubes, Do Not Resuscitate orders–if you have a living will, then you have it in writing–if you don’t, then as hard as this is, ask the nurse’s desk for one (the staff can get you one). It could save you so much heartache later
  • If you do have a living will, bring it to the hospital or care center. Even if the facility has one, you need the other copy with you. Trust me, these things can slip through the cracks
  • Be the family you are. Don’t let others judge how you’re reacting to this situation. If you’re not cuddly, then don’t do anything that doesn’t feel natural
  • Know that you can’t control others actions–some people may rush to your side, others hang back. Let everyone “be” without worrying about them. Stay focused on you and your loved one

I’m Already Wracked With Guilt and Regret–We Should Have Caught This Sooner, I Should Have Done More…

These are normal feelings. It gives our brains something to do. We’re under the illusion that we control things, that if we had done this, not done that, that things would be different. Life is bigger than us mere mortals. Try not to stay in this awful, negative vortex.

You’re spinning your wheels and taking valuable time and thought –and love away from your your loved one and the time you have together. Stay Present.

I Can’t Think Straight–Shouldn’t I Be Making Plans?

Only if that brings you a measure of comfort. It will all work out. Let your liaison coordinate anything you’d like done now–flights, checking out care facilities, etc. This isn’t the time to get caught up in the doing–and if you are, do it because it’s your coping mechanism, not because you think you should.

When Do I Start Making Funeral Arrangements?

It’s different for everyone. Some people have family plots and know their local funeral director as a friend. Others are new to their area and haven’t a clue.

Are you the type to ask a doctor flat out how long does your loved one have left?

Do you want to know?

It’s okay not to, everyone’s copes differently. Also know that doctors are not infallible. They can be wrong. They can misjudge. Life is determined by the will–and the spirit. But if it would make you feel better to have a general time frame, then ask a doctor or nurse–ask if it’s time for hospice–enlist all the care you can get.

Hospice will be more wiling to talk about the death and dying process than doctors will (usually) -and palliative care (pain management). Some doctors resist hospice, but I find they’re a valuable resource to families. It doesn’t mean your loved one is going to die this second because you ask for hospice. It means you’ll have the support you need–people that have been through this.

Should My Loved One Stay in the Hospital, Go Into a Hospice Center or Should I Take Them Home?

Again, what’s right for you? And your loved one? Have you talked about this before? Have you ever thought about it? Is there care manageable at home? Will that be more stress on you–or less?

It may take you a while to figure out what feels right, and sometimes you figure out what’s right by what’s wrong–if the hospital is getting on your nerves and you just one everyone to go away and for it to be a time of peace, then you probably want a hospice center or to return home.

Does the care feel overwhelming to you? Would you rather go to a care center and let others take care of things? You can spend the night there, and most hospice centers are very thoughtful and serene.

Or does home sound like the only place you and your loved one wants to be. Home hospice is available as well, and pain can be managed from home.

You’ll figure this out along the way. Don’t feel pressured to make decisions prematurely or on someone else’s timeframe. Trust your gut.

For some, this is a deeply spiritual time, a time when faith is important. Even if you haven’t turned to your faith in years, if it feels right, then ask to see a chaplain, priest, or rabbi. Faith can oftentimes give you a measure of comfort and hope.

I’m Scared if I Stop Moving, I’ll Fall Apart

Is it so bad to fall apart? I know you think that if you do, you’ll never function again. You will.

If you truly can’t let yourself fall apart now, then set a date–in the future–and give yourself permission to fall apart then. Eventually, you’ll need to cry and scream, and beat something. You’ll need to curse, or sob, or fall to the ground. This is all a part of grief, and grief starts long before the last breath.

Losing a loved one is about the hardest thing you’ll ever do and the emotions that come with it are some of the hardest, strongest, saddest, awful-est time you’ll ever go through. But you will.

You will keep breathing. Your heart will keep beating, unfair as it is. You will.

But for today, be present.

If you have only days, weeks, or months left, then gather and treasure every sweet moment you have–

Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

Kunati Publishers, www.kunati.com/motheringmother-memoir-by-car/ – 95k

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Caregivers,

Do you have a place to go?

A sanctuary?

If not, it may be a big part as to why you’re stressed and resentful.

Caregiving invades your space, your head, your time–you don’t always get to say when you’re needed.

I pulled many a “late night shift” with my mom.

My mother had Alzheimer’s and Parkinson’s and not only did she have Sundowning, a condition in which people with Alzheimer’s get more aggitated and have more energy as the sun goes down–and on into the night, but she simply didn’t need much sleep–or her body wouldn’t let her sleep. (Here’s a post I wrote about my experience with sundowning).

It’s not like we could make it up during the day.

I was dragging. That made me miserable, fussy, and I tended to overeat. Why? Because studies have now shown that obesity is linked with lack of sleep. We tend to munch all day because it gives us something to do, causes our brains to perk up, and since sugar is almost always involved, we’re pumping ourselves up like we’re climbing the highest point of a rollercoaster–and then plummeting to exhaustion.

Maybe what you need isn’t to just lie down. 

It’s a renewal of your spirit you’re hungry and longing for.

You don’t have to be religious to need a sanctuary.

I love that I happen to live in a bird sanctuary area–the Timucuan Preserve. I love the thought that animals are held as sacred and that an area is designated for them.

But shouldn’t we humans create our own sanctuaries? What exactly is a sanctuary?

The word, “sanctuary” means:

Source: Webster’s Revised Unabridged Dictionary (1913) –The spelling has changed since then.

Sanctuary\Sanc"tu*a*ry\, n.; pl. Sanctuaries. [OE. seintuarie, OF. saintuaire, F. sanctuaire, fr. L. sanctuarium, from sanctus sacred, holy. See Saint.]
   A sacred place; a consecrated spot; a holy and inviolable
   site.
Two of the definitions include:
c) A house consecrated to the worship of God; a place where
       divine service is performed; a church, temple, or other
       place of worship. A place to keep sacred objects.
   (d) A sacred and inviolable asylum; a place of refuge and
       protection; shelter; refuge; protection.
Operative words: Refuge. Sacred. Shelter. Protection.

How to Create a Sanctuary:

What is sacred or holy to you?

  • Gather a few objects–a photo, seashells, stones, your mother’s broach, your dad’s pocket watch, your baby picture.
  • Grab a basket or a box and walk around your home and hard. Gather anything that interests you. Your sacred objects will change over time. Just get it rolling for now.

Find a place:

  • Where in your home or yard feels “safe?”
  • Where can you have some privacy? Where can you relax?
  • Place a table, a desk, a chair, a cover at this place. If it’s outside then create a box of your sacred items that you can carry out with you.
  • You might also want to include a journal and pen, micro-cassette recorder, a drawing pad, candles, a rosary–any object that helps you figure out life.
  • Go frivolous~ don’t think a sanctuary is all serious! Take your ipod along. Dance! Paint your toenails and read a magazine! Navel gaze. You may just need some extended down time–staring into space.
  • There are no rules. Do what you feel like doing. We’re taught not to trust our feelings. That if we got to do what we felt like, we’d all be drug addicts, cheaters who eat nothing but Oreos. Trust yourself. Do what feels right. Sleep. Stare. Rant. Cry. Sleep some more.
  • Your sanctuary is off limits to everyone else. Make your boundaries. No interruptions. No phone calls. Unless there’s blood and lots of it–you are not to be called away from your most important work–taking care of you.
  • You’ll be surprised, but your family and friends will respect your space–if you do. This is a great example for your children.
  • Don’t expect “results.”
  • This isn’t a magic box. It’s a place to rest or even to rejuvinate. Recenter. Calm down. Work things out. Place no expectations. This isn’t like Weight Watchers for the soul. You don’t have to weigh in and measure if you’ve gained or lost since last week. Just be.
  • You may need to use your sanctuary to work out your anger, hurt, and resentment. One thing I do when I’m really upset is to write it all down on scraps of paper, say it outloud, and then burn it. It helps to watch your anger turn to ash.

Pick a Sanctuary Location:

  • Some people like clearing out a closet and placing a chair, pillows, and a small table and light in their “prayer closet.” Oprah recently featured a sanctuary closet that was really decked out. 
  • Others like to go outside–they hide away in the nook of the yard and get the benefit of nature to heal them.
  • One friend keeps her “special box” she calls it in the car. She literally walks out the door and goes and sits in her car. Her family is less likely to find her there and she feels safe and cocooned. She can scream, cry or laugh in her sound-proof sanctuary.
  • For some, it’s in the bathroom. They retreat eat night to the tub–they keep candles, soaps, and a journal on hand. They know that being naked will most likely keep people away! Hey! Whatever works!
  • Be like my cat and change your sanctuary every once in a while.

Cats are great to observe. They seem to make their spots seem sacred. My cat picks a spot and goes there after breakfast each morning. He gives himself a luxurious bath, folds in his little paws and I swear, if cats could pray, I’d think he was praying. Then, he takes a nap.

This week, his spot is under my birth grandmother’s rocking chair in my bedroom. He tends to pick a spot and goes there for 3-4 weeks before picking another spot. Recently, it’s been in the back of my closet–that’s when he doesn’t want to be found. A few weeks ago, it was on a chair next to the dining room windows so he could enjoy the sun. I knew where he was, but he’s also quiet and hidden away enough to not invite attention. Smart cat.

What Do I Do in My Sanctuary?

First, let’s address what you DON’T do.

  • You don’t take care of anybody but you.
  • You don’t stay busy just to avoid what’s bothering you.
  • You don’t have your thoughts constantly interrupted with the chatter of life.
  • You don’t allow yourself to be bombarded with the demands of every day life.

This is What You DO:

Rest. Think. Imagine. Work out hurts. Cry. Zone out. Learn (maybe take a book?) Find your joy.

If it feels odd at first because you’ve never done anything like this, then let it feel odd. Your sanctuary practice will be even more necessary at the end of your loved one’s life–and especially during your time of grief. Create this space now so that you’ll have a place to run to when you really need it.

Like my cat, I change my locale every once in a while.

Right now, it’s on my back porch on my parent’s glider (they had it since I was adopted in 1965). I have a stack of books on one arm, and I recently bought a big cushion–in case I get sleepy. About 9am you’ll find me there with my 2nd cup of coffee, my journal, a few magazines, a no doubt, a couple of dogs by my feet.

I’m a Guy and This Sounds Lame:

Does it?

My daddy had a sanctuary. He called it a garage. He built it himself. He left for his garage every morning after breakfast (he was retired at this point) and after his game shows. He putzed, worked on a broken lamp, put in a small bathroom. He listened to talk radio. For the most part, he was alone–although a few friends would come and visit. Mama and I came down but never really stayed long. It felt like we were intruding.

He’d come back to the house with a smile. He’d had his time to himself. He smelled of sawdust and linseed oil–and peanuts and Coke he kept in a cooler to sustain him throughout the day. He came back relaxed because he allowed himself this break. He didn’t have to listen to Mama nag or me talk incessantly. He came back ready to be a dad and husband. Smart man.

Caregiving stress is a real issue with real ramifications to your health and realtionships. Sometimes we unknowingly contribute to our own stress by always being on call. Sometimes it’s a power thing we’re unaware of, sometimes it’s fear, sometimes it’s just a plain ole’ bad habit we can’t figure out how to break.

You need a sanctuary–caregiving or not.

You need to know that the world won’t fall apart because you take a half an hour and pull inward.

Like Daddy, you’ll come back refreshed.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

Kunati Publishers, www.kunati.com/mothering

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