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The first month after your loved one dies is perhaps one of the scariest,

most dreaded times in a person’s life.

Losing a spouse, a parent, a child is devastating. But somehow, you will get through.

I know you don’t think you will.

But there’s this little thing called breathing. Your body does it whether you want it to or not.

Your heart can be breaking, your gut wrenched, and you can feel as if you will truly lose your mind–and your body will continue to take its next breath. There will be times when you don’t want to breathe. You don’t want to live–the pain is so intense. Just let your body get your through for now.

It’s a divine design–to keep our heart and lungs on automatic.

I’m sure I would have either forgotten or opted not to breathe, not to allow my heart to pump if I had any say in the matter. But this sheer involuntary response is the only way to go on during those early days of grief.

Death comes in many forms–by way of an accident, or after a long agonizing illness–it’s never easy.

Even when you’ve been caregiving for years and you know your loved one is no longer suffering, almost everyone has a difficult time letting go.

Why? Why is it so difficult to watch death take those we love–even after pain and suffering, and even old age?

I believe because there’s something in us that deeply believes in the eternal.

Our brains do not compute that life is simply cut off. I’m not basing this on any particular religion or theology–I’m basing this on biology–we cannot comprehend that someone we know and love was here yesterday–and is not here today. Those who look at this purely scientific would say that it’s mere habit–but something in me feels that it’s more.

Why, after practicing a lifetime of faith, and believing with all our hearts that we will see our loved one again–is it still so hard to stand next to their lifeless, breathless body and kiss them goodbye?

The same reason a toddler cries for his/her mother. We don’t like separation.

And those early days of separation are very, very difficult.

What’s it like? That first month?

Experiencing a death of someone we love–at any age, and for any reason, usually means that we go into shock. Not only have I experienced the death of several loved ones, like you, I have many family and friends who have also experience grief and loss.

By looking at these first few days and weeks, we can begin to see a pattern–in ourselves and others. It’s less scary to know that we’re not alone, and that our bizarre thoughts and actions are something others experience as well.

What is shock?

It’s our body’s response to trauma or pain.

Physically, speaking, shock is when the body isn’t getting enough oxygen. It can occur after an injury when the body shuts down (the blood stays close to the heart to preserve life at its core level–or it can occur after a severe emotional trauma.

WebMD desribes shock as this:

  1. A sudden physical or biochemical disturbance that results in inadequate blood flow and oxygenation of an animal’s vital organs.
  2. A state of profound mental and physical depression consequent to severe physical injury or to emotional disturbance.

If you’ve ever experienced shock (yourself or by witnessing it in another person), one of its prime characteristics is that you’re probably not reacting to pain (physically or emotionally) as you would expect.

Car accident victims can walk around with a head wound or internal injury–and only after minutes or even hours does the body “compute” the damage and begin to react. This may give the person time to rescue a child or get out of a fire.

Emotional trauma shock can present with similar symptoms–the person may talk or act rather normal, even when you would expect them to cry or scream or fall apart. They might eventually do all those things–but it may be weeks or months later. The mind has the ability to stay “in shock” much longer than the body–and it will usually only allow the person to really feel and experience the deepest levels of grief when it’s safe.

The movie, Reign Over Me is a great example of emotional shock.

Adam Sandlerplays a man who lost his wife and children during 9/11. He spends years in “shock,” and the exploration of how this man deals with grief in an unconventional way–and the arguments that the social and mental health community make to try to “fix” him, is interesting.

Every person’s journey with grief and loss is different. Honor yours.

Trust your gut, your shock will get you through.

During the first month you might: (no two people are the same)

  • Be able to plan an elaborate funeral or memorial service
  • Hold yourself together–be courteous, thoughtful and polite
  • Look healthy and strong
  • Go back to work days or weeks after your loved one passes
  • Feel euphoric–an urgency to get on with life
  • Plan a trip, go shopping, or other ordinary things
  • Go off with friends and do things you haven’t been able to do in a long time

But…if you observe grief and shock a little closer, you’ll notice things aren’t quite what they appear on the surface.

You might also:

  • Feel high strung, nervous, agitated
  • Can’t pay attention, get bored or antsy with people
  • Suffer from insomnia
  • Have a panic or anxiety attack when you’re out in public
  • Zone out and not remember where you are
  • Feel guilty and think you caused your loved one to die (by taking them to the hospital, or not taking them, or a myriad of other decisions you had to make)
  • Forget things–your keys locked in the car, your wallet at the gas station
  • Avoid falling apart or crying because you may feel like once you start, you won’t be able to stop
  • Have nightmares, even scary dreams of your loved one coming back alive–but not alive
  • Become obsessed with something–putting your affairs in order, doing something your loved one nagged you about but you put off–but now you’re doing it to excess
  • Do something, anything to feel alive–gamble, go to Vegas, visit online chat rooms, shop too much, eat too much
  • You may start to snap at people–or cling–can’t let yourself be alone
  • Your emotional pendulum keeps swinging wider and wider

Practical Things You Typically Do The First Month:

  • File for and receive the death certificate (that’s tough)
  • Contact your life insurance
  • Decide when or if to go back to work
  • Comfort others around you–children, friends, even when you don’t feel like it
  • Cancel credit cards and put your house or car in your name only
  • Pay the bills associated with your loved one’s passing–funeral expenses, etc.
  • Decide to buy or sell certain items
  • Figure out how to pay the bills or deal with repairs–whatever your spouse/loved one did that you now must do
  • Catch up with your lfe–if your loved one was ill, there may be many things that need your attention now
  • Write thank you notes and figure out how to handle your relationships with this new change

Emotionally You’ll Have To:

  • Make calls and let businesses know your loved one has passed
  • Talk to many family and friends–and some of them will be awkward and say the “wrong” thing
  • Walk back in your house, your bedroom, drive his car–feel his/her presence and be faced with your loss
  • Sleep in the bed he’s/she’s no longer in
  • Deal with clothes, cars and other personal items–even if you don’t start sorting and deciding what you keep, they are with you–in your house and your life
  • Allow your brain and heart to assimilate that your loved one’s not here for you to call–to talk to
  • Wake up and think he’s/she’s still there
  • Feel alone and lost even when you’re busy
  • Figure out who you are now and what to do with your time and energy
  • Think about that “first” that is to come–first birthday without him, holiday without her–and make a plan
  • Literally survive the best you can

For most people, the first month is a blur.

At times, you’re in bone crushing grief alternting with an odd euphoric gotta-get-out feeling.

You can bite someone’s head off or not even care if the shoes on your feet were on fire.

There’s a lot to do, and that list of wrapping things up and starting anew at least keeps your keep moving. The good news is: you probably won’t remember most of this.

Shock does a whammy on the brain. You may feel like you’ve put your skin on inside out–and your nerve endings are exploding–but later, there will be many things you can’t recall.

Your body is protecting you. Let it. J

As crazy, lost, alone, scattered, numb, and frantic as you feel in those first months, know that as hard as it is to believe, it won’t last forever.

Just breathe.

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

www.caroldodell.com

Carol is a family advisor at www.Caring.com

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There’s a new kind of caregiver out there.

She (or he) is a savvy caregiver, isn’t a martyr, and doesn’t look defeated (all the time).

She (I use the feminine pronoun to apply to everyone) has her act together (in some respects) and isn’t going to let her life and her plans be completely derailed–and yet she loves her family, her elders, her children, and embraces the fact that she’s an integral part of their life.

How does she do it all?

It’s not about being perfect.

In part, it’s about being prepared, looking at the big picture, and then breaking down the day-to-day components into manageable bites.

It’s also about choosing to care-give.

This isn’t a passive thing–and yes, it may have come to you sideways, unexpected or by default, but you didn’t have to say yes. Everyday people place their family members in care facilities, sometimes out of necessity and sometimes by refusing to give them any level of care.

Realize that you are choosing to care-give. That sense of choice also provides you with purpose and direction. It means you’re not a victim.

Preparedness (Boy Scouts, move over) and How to Care-give Not to Kill Yourself

  • She’s (the healthy caregiver) gathered the necessary info and has it at her fingertips–Living Wills (The Five Wishes is the one I highly suggest) DNR orders, if necessary, insurance info and numbers, notes made about recent doctor appts. or hospitalizations, and medicine info.
  • She uses her calendar and to-do lists efficiently, but she’s not a robot. Some days you chuck it all and love on the person who needs it the most (that may be yourself).
  • She has her down days, her pajama days, and she knows that balance isn’t about doing a little every day–sometimes there are seasons–seasons of quiet, seasons of chaos, and seasons of grief.
  • She’s learned not to let every little thing rial her. She’s experienced enough in life to know what’s worth freaking out about (which is very little) and what isn’t (which is most everything else).
  • She listens, repeats back what is said (to a loved one or to a doctor) so that she understands clearly. She takes notes if it’s important or could be necessary later.
  • She can shut it all off and be a woman, get a mani-pedi, be silly and play Prince in the car and sing to the top of her lungs. She doesn’t get sucked into being an elder or being a teen just because she happens to spend a lot of time with either (or both).
  • She prioritizes. Sometimes a home-cooked meal is soothing and rattles her nerves. Sometimes it’s pizza night. She laid down the “shoulda’s, woulda’s, and coulda’s.”
  • She has a great support team–friends to call and gripe to, a gynecologist or family doctor who’s looking out for her, knows the stress she’s under and can monitor her well-being. She relies on her faith, her heart, her circle of support and doesn’t try to go it alone. She considers herself a part of a team and shows a heart of gratitude.
  • She asks for and accepts help. She isn’t interested in being super woman or perfectionist woman. She’s willing to get help and seeks out competent care.
  • She knows she’s vulnerable to stress, so she’s devised a meditation time and exercise time she can manage–it may be only a few minutes a day, but it keeps her sane.  She’s found her own spirituality.
  • She continues to improve her own life–she takes an on line class, a yoga class, is learning how to knit–something that keeps her mind active and learning.
  • She utilizes the internet, finds help, information, and forums that help support her and her caregiving experience.
  • She can see past tomorrow–she knows that caregiving isn’t forever–and she has her own personal plan to move on with her life.
  • She gives herself permission to “lose it” every once in a while–sometimes things just go in the crapper and that isn’t a reflection of her, it’s just life. If she bites someone’s head off, forgets an appointment, bounces a check, she admits her faux pas and lets it go.
  • She values her marriage/intimate relationship and allows sex and intimacy to heal her. Even when she’s exhausted, she finds and asks for ways to connect.
  • She enjoys caregiving–even with all its craziness, caring for a loved one is a privilege. She finds ways to incorporate everyday pleasures to share with her care partner–bird watching from a bedroom window, stopping for ice cream on the way back from the doctor.
  • She takes the time to hold hands.
  • She’s strong enough to make the touch choices, to not be popular, to figure out how to get a doctor, care staff to understand where she’s coming from–and she’s brave enough to know that when death comes, she may be asked to make critical end-of-life decisions, decisions others may disagree with.
  • She’s not afraid of Alzheimer’s or Parkinsons and doesn’t give up in the cruel face of whatever disease her loved ones face. If they forget who she is, she’ll remember for them. If they become uncontrollable, she gets help and doesn’t take it personal.
  • She knows that she may not always be able to do this–and she’s explored other options. She isn’t going to wreck her health or her marriage. She’s planning for those changes now.
  • She knows that caregiving will take her to the bitter edge, and she’s got to figure out how regain the parts of her that get lost in the mix. She knows how hard this is, or will become, but there’s a thread that’s pulling her along, a thread will lead her out and will allow her to continue her journey once caregiving is over.

The new kind of caregiver isn’t a super-mom or super-daughter (or super-son).

They’re real people loving their families. It’s realistic. It’s not martyristic.

The world may not understand the “sacrifices” as some might call them that caregivers (plain ole’ family) makes, but those who have been there understand the love and loyalty that comes in tow.

You don’t do all these things at once, so don’t try to measure up.

You don’t do them to impress anybody.

This is survival. This is how to care-give and not kill yourself in the process.

~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

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If you’ve ever had a bladder infection (the common name for UTIs), then you know how very painful they can be.

If you haven’t, let me describe one for you:

Many times, you don’t realize right off what’s wrong.

You’re edgier than normal. You feel “different down there,” but you’re not sure. Then, you get the frequent urinating thing. Every two minutes.

It begins to be painful, sometimes there’s nothing to urinate but you feel ike you have to. I mean you have to like someone’s holding your foot and you’ve got to jump off a cliff.

You start drinking water like crazy thinking you can dilute it. You hear cranberry juice or pills help, so you run out and buy some and chug down a quart.

No matter what else you think you have to accomplish, you can’t.

You can’t think straight. There are no other thoughts but those of pain. Your lower abdomen aches. You wet your pants, you can’t help it, and you cry as you’re doing it.

You’re in absolute agony, and if you had a gun and could drive yourself to the pharmacy, you would hold it up—for meds. For relief. I’m not kidding.

Even after you get the meds, it takes hours, if not days. You can run a fever. You snap at everybody, if you can even answer them. You find yourself running your fingers through your hair over and over. You avoid everyone.

This is a bladder infection.

The medical world acts like it isn’t a big deal, but I swear, if you had to live this way, and live with this undiagnosed, you might kill someone. They act like the second you get antibiotics it instantaneously goes away. But the overuse of antibiotics carry a consequence, according to the AMA.

Doctors and nurses pooh-pooh you if you’re young.

They think you’re amorous, having too much sex. Wink, wink. While that can be one cause, it’s not the only cause.

Women suffer greatly from UTIs (more than men, in general) in part due to their anatomy—a short urethra. Yeah, blame us.

But I know there are other reasons. Nerves, for one. I always get a bladder infection when something big is about to happen—buying a house, passing a big test. And yes, I’m amorous (and monogamous). That’s a good thing.

UTIs are also serious and can be life threatening if left untreated.

But what would a UTI be like if you couldn’t communicate?

If you had ALS or Alzheimer’s, or some other impairment that kept you from realizing exactly what was going on? What if you didn’t want to tell your daughter, or your nurse that you wet yourself again and again? Would you be shamed? Who wants to change multiple sheets or panties?

Urinary tract infections in the elderly are very, very common.

Particularly in women, and even more so for those who live in a care facility.

And they often go untreated.

Why?

Too many to care for, perhaps. The elder’s inability to describe what’s happening.

UTIs in the elderly or in people with Alzheimer’s can affect not only their health, but can also lead to significant behavioral changes. In fact, if your loved one’s behavior has changed recently, even if they’re male, you should consider the possibility that they could have a UTI.

Just as with me, agitation or nervousness is a big indicator.

The person is concentrating to deal with the pain—there’s nothing left for niceties. Check to see if they’re running a low grade fever, if they’ve soiled their underwear, if they’re more disoriented than usual.  

Elders with Alzheimer’s or Parkinson’s, or other neurological disorders may not remember to urinate—even their bodies and muscles begin to forget, to give off the proper signals, and this leads to a tract infection.

 

Those who have diabetes are also having a higher risk of a UTI because of changes in the immune system. Any disorder that suppresses the immune system raises the risk of a urinary infection.

 

If your male elder has an enlarged prostrate, that can impede urinary flow and cause an infection. So can a kidney stone.

 

People who are catheterized or have tubes placed into the bladder are more prone to urinary tract infection. (This is the highest group of all)

 

Caregivers, You Need to Know the Most Common Urinary Tract Infection Indications:

·       Frequent urination along with the feeling of having to urinate even though there may be very little urine to pass.

·       Nocturia: Need to urinate during the night.

·       Urethritis: Discomfort or pain at the urethral meatus or a burning sensation throughout the urethra with urination (dysuria).

·       Pain in the midline suprapubic region also known as flank pain and is also associated with kidney infections.

·       Pyuria: Pus in the urine or discharge from the urethra.

·       Hematuria: Blood in urine.

·       Pyrexia: Mild fever

·       Cloudy and foul-smelling urine

·       Increased confusion and associated falls are common for elderly patients with UTI.

·       Some urinary tract infections are asymptomatic and difficult to detect.

·       Protein found in the urine.

·        

Kidney Infection Indications:

*                All of the above symptoms plus:  

·       Emesis: Vomiting.

·        Back, side (flank) or groin pain.

·       Abdominal pain or pressure.

·       Shaking chills and high spiking fever.

·       Night sweats.

·       Extreme fatigue.

 

Testing for UTIs is usually a mid-flow urine test, and trust me, that can difficult in and of itself when dealing with an elder loved one.

The treatment for UTIs is antibiotics, but antibiotics have become overused and may not always be effective. Be sure to retest. Elderly individuals, both men and women, are more likely to harbor bacteria in their genitourinary system at any time, which means it just comes with old(er) age.

 

Care facilities are a medical necessity in many families lives for many reasons, but there is a higher incidence in care homes for UTIs. If you can care for your loved one at home for as long as possible and utilize the many community resources available to you—and keep your elder on a consistent routine, your elder is better off.

 

 

But I know how hard this is. I cared for my mother at home for the last three years of her life, and I do know there comes a time when you can’t do any more than you’ve already done.

 

By at least being aware of UTIs and how they present themselves, you can keep your loved one from suffering from this very painful and frustrating ailment.

 

Don’t let your elder suffer in silence.

 

~Carol D. O’Dell is the 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

www.kunati.com Publisher

 

 

Helpful Websites:

Alzheimer’s TreatmentsLatest news on drugs and treatment- from the Alzheimer’s Association.www.alz.org/treat

Alzheimer’s StagesUnderstand The Stages Of Alzheimers See Our Alzheimer’s Stages Site.Understanding-AlzheimersDisease.com

Alzheimers Nutrition TipsStrategies for Managing Mealtime Family Caregiving Advice & CDswww.LightBridgeHealthcare.com

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This June, my mother will celebrate her sixth anniversary “on the other side.”

I can hardly believe it’s been that long. I spent the first year in grief and rebuilding my life.

That’s normal, and you can’t rush it or fix it. It was more like two years, and that’s also “normal.”

That’s how long it takes to assimilate a death, process your emotions, and begin to incorporate your loved one into your being. Of course, averages are just numbers and each person’s process if different, but you really shouldn’t expect much from yourself during those first two years–at least that long. 

For me, that time was a mix of guilt, regret, longing, lostness, mania, and vacillating between lethargy and intensity. To the outside world, I might not have looked like I skipped a beat, but what choice did I have?

I was a sand-gener–I had daughters to finish raising, to get into college. I returned to college myself, lost 30 pounds, stayed married, wrote my book, wrote short stories, essays and articles–I looked busy. I was busy. But there was a whole lot going on under the surface.

But only in retrospect can we see the bigger picture.

Now, I can look back and see where I’ve been and what I’ve learned.

It’s a laundry list and I can’t say when I learned what.

There’s no order, only this is what I know–about caregiving, life, death, mothers, daughters, families, faith, and surviving.

What I Learned:

  • I’m glad I didn’t know what was ahead–if I did, I would have never gone on this journey. 
  • Believe that caregiving has come into your life to heal you, show you things about yourself, give you a chance to work on old issues–and that in the end, you’ll emerge a better person.  
  • To accept myself and my mother and our relationship “as is.” It’s okay not to try and fix things.
  • Forgiveness are like small pebbles you pick up along the way–nothing big and monumental–just a gathering of what I choose to keep–and what I leave behind.
  • Doctors and nurses aren’t gods and I don’t have to do everything they say. I can speak up, ask for somehting different. I know my loved one much better than they do–and I have to make–and live with my decisions.
  • For the most part, going into the hospital in those last few years only made things worse. It wore me out, and there is a time to just accept that your loved one’s health is falling apart and let it.
  • Live with the chaos, the dishes, the laundry–sleep whenever I can–there are times to just get by.
  • Stop worrying about what my relatives or our neighbors think. Unless you’ve been a caregiver, youy can’t fathom what this is like.
  • To ask for more and more and more help. I tried to do too much alone and on my own.
  • Trust that I will bounce back from caregiving. Don’t drive my health to the absolute bitter edge (just almost), but then reclaim my health, my life, and my sanity and move on.
  • Guilt and resentment take up too much time and energy–stop giving my power away by mulling on things I can’t change.
  • You might not want to piss off all your doctors and nurses because you might eventually need them–so be savvy about how you deal with them.
  • If you’re forced choosing between your health, your marriage, your sanity, your children–and your elder–then choose your life to put first. Not theirs. As cold as that sounds, life moves forward. This doesn’t mean you ditch them on the side of the road, but in your mind and heart, put your life first.
  • Don’t just tolerate things you can’t stand. Stop being passive agressive and complaining about it later. Do something about it. Pitch a fit. Tell off your sibling. Fire a home health aide. Scream for help. Be a bitch. It probably isn’t the first time–nor will it be your last. You get what you tolerate, so stop tolerating so much. (I’m talking to myself, here)
  • No matter how religious a person may have been in their life, it doesn’t mean they aren’t fearful of death. Fear, or lack of, has more to do with a person’s psychological make up, and a way they’ve practiced seeing and responding to life–and this will determine how they handle death.
  • Realize that those last few years, months, or weeks may be more about semantics–that their spirit has already left this earth and the shell, their body, just hasn’t left yet. Be okay with taking care of that shell–but don’t make it hard, and don’t over think.
  • Understand that anger is sometimes a useful emotion–it’s a way we protect ourselves, but there’s also a time to lay anger down.
  • Laugh whenver you can–at whatever you can. Be irreverent, be snarky, other than downright cruelty, laughter is so good for you that you need to see the humor and crazyness of your situation.
  • For the most part, go with your gut. Do what feels most natural, particularly after your loved one passes and you’re grieving. Sleep, eat, cry, run a marathon, join thepeace corp–whatever is driving you, let it drive you–it’s part of your journey, and other than truly dangerous behavoir, you can’t screw up, so go for it.
  • You feel really lost after losing your mother. You wonder who you are without them to help define you. Later, you might even feel free-er, less confined.
  • Missing someone hurts, but sometimes it’s good to hurt.
  • It may take a few years, but eventually, let go of the exhaustion, resentment, guilt, and begin to enjoy your new relationship with your loved one. People “on the other side” still teach us, guide us, speak to us–and realize that they are now a part of who you are. You carry them with you.
  • Understand that you may have to care give again–a spouse, another parent, a sibling, who knows? Begin to think–how would you do it different?

Here I am, almost to June. Six years ago I was at my mother’s bedside.

It was grueling, and the weeks were dribbling by.

It rained every day, and my mother was in a coma. It felt like she’d never die. That may sound cruel, but I was beyond all human niceties. It also felt like I’d never live. Practically speaking, I knew I couldn’t fix Alzheimer’s. I knew her living would keep her in a place of perpetual lostness, and I didn’t want that for either of us.

I hated everybody–hospice, me, my mother–and then I let go and just allowed.

The barometric pressure felt off the chart. ‘

Death had to come, but when? Mother had quit eating and drinking, and I let her. That was an excruciating decision, but I chose to let her leave this world. I chose not to intebate her, to do a feeding tube. I knew that this decision would be one I would have to bear alone. I would have to sit there, every minute and see the ramifications of my choice. I did, and as hard as it was, as many times as I wanted to panic, jump up, run out, beg for intervention, I didn’t. I stayed firm.

My world grew calm, my movements quiet. We waited.

And here I am–six years forward. Blogging. I had no idea I would wind up blogging every day. I doubt I even knew what a blog was at the time.

My book, Mothering Mother has been out a year. I’ve talked to hundreds and hundreds and hundreds of caregivers. I’ve been featured on CNN and other tv and radio programs. I’ve written a novel about Vincent Van Gogh, and finished my prequel, Said Child. I graduated from Jacksonville University and danced at my daughter’s wedding, and buried our beagle. Life is full. It swells and ebbs.

What I’ve learned is to accept each day, the power of now. Each season. To be alive with what is given to me at the time. To realize I’m not so much in control as I am in the flow. I am a part of what is happening, not orchestrating it.

Caregiving gave my life a deeper meaning. It revealed things about me, how I think, how I handle life–things I’m proud of and things I’d like to address.

One thing for sure, caregiving changes you in ways you can’t imagine.  

~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

Publisher: www.kunati.com

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We always think that happiness is “out there.”

When I get a new job, when I take vacation, when I lose 30 pounds, when…

Happiness is not that hard. We make it hard. Happiness is having new eyes. A fresh perspective.

After I moved my mother in with us to care for her, (she had Parkinson’s and Alzheimer’s), she used to tell everybody–the postman, the grocery clerk, the pastor, the lawn guy, that she had given up everything to move in with me–her house, her car, her friends, her life.

Apparently she thought I had given up nothing.

I would stand next to her and smile and let her have her moment, get the sympathy she thought she deserved although most people had no idea what to say.

It reminded me of a precocious two-year old I knew who would run in from playing with a tiny scratch on her arm and pronounce to the entire room, “LOOK AT WHAT HAS HAPPENED TO ME!”

There were times as a caregiver (and other times in my life) that I wanted to do that, pronounce it to the world.

But somewhere along in my early adult life (after years of anger and hurt about being adopted and other very painful issues) I got tired of my own whining. I simply wore it out. I was tired of being known as the girl with the problems.

I decided to be the happiest person I knew.

Not a sappy Pollyanna happy type you just want to slap, but deep-down easy, not in your face joy.

It hasn’t been a linear path getting here, but I am pretty darn happy.

One day, while caring for my mom, she toodled into the kitchen, slapped her hand down on the counter and pronounced, “I’m not happy!”

As if I could bop her over the head with my fairy wand and “Voila!” instant happiness.

I looked at her, my mother who truly was a happy (in a self-centered, domineering, the entire world is here to serve me kind of way) person. It just wasn’t easy, and life isn’t always easy. She didn’t like having to leave her friends and move in with me. Her body was giving out and Parkinson’s had taken its toll, also, Alzheimer’s and depression are linked. Most days, she couldn’t toodle into my kitchen. She didn’t like that I had to divide my time away from her to take care of my children and my marriage. She didn’t like that her life was playing out and that sooner, rather than later, she’d die.

But I couldn’t fix any of that.

I just looked at her with this dawning revelation.

If only one of us could be happy, then I’d choose me.

Kind of the life raft theory. Who do you kick off the boat?

The one who most likely won’t make it any way.

Sounds terrible, I know, and I had truly, truly, truly tried to make her happy–and more than that, I had tried to take care of her, keep her safe, keep her alive.

But if the people around you simply choose not to be happy, then realize you can choose otherwise.

Choose joy.

My life is far, far from perfect, and I’ve been kicked in the teethquite a few times, but this morning, I rode my bike for five miles with my ipod on singing my heart out.

I have a new CD–Grey’s Anatomy’s Third Season, and I love the compilation of songs and artists. I belt it out, make figure 8s and circles with my wheels, and dance on the bike (be-boppin’ up and down) and I don’t care what anybody thinks.

Why should I? In the first place, hardly anyone’s home at 10am, and most people I know aren’t happy–or at least they don’t act happy, so why should I care if I’m known as the crazy bicycle singer?

My kids think I’m nuts, but they’re used to me by now.

My morning coffee, my journal, my glider, the sun, my bike, my ipod, my afternoon dark chocolate fix–the warm, strong hug of my husband–these are what I call give me my “happy fix.” They bring me immense daily joy. They cost very little, and I try not to run out or get so busy and stressed that I don’t do these things I love, the very things that sustain me.

Caregiving was grueling at times, and the end was really, really tough–but it taught me to love, to give, to stretch beyond myself, and it was for a season.

Since my mother’s passing, I’ve learned that life is pretty darn short and I better snatch all the sweetness and joy I can. Parts of my life are still crappy, and I’m not always this giddy–I tend to be more so in the spring and summer, so if I’m getting on your last nerve–sorry.

What I hope for you today is based off something I read this morning in Alan Cohen’s Daily Devotional book, A Deep Breath of Life,

April 14th entry:

I used to think I was a perfectionist.

I was constantly finding flaws and errors other people overlooked. If there were many aspects of a job that was done well, I would point out the one area that wasn’t.

But now I realize I was an imperfectionist.

If I was a perfectionist, I would have found perfection everywhere I looked.

***

That BLEW ME AWAY. I hope it did you too.

I plan to become a happyologist.

~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

 

 

 

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In most families, there is a primary caregiver no matter how many siblings there are. Some try to divvy up the responsibilities, but it’s rarely equal distribution because of differing people’s lives—jobs, distance, abilities, etc. In many families, one sibling gets the brunt of the responsibility.

 

And even if you agreed to it, over time, resentment can build.

 

I know of so many families who are torn apart because of this very issue.

Why won’t they help out?

 

Here are a few reasons why siblings won’t participate: they live further away, they can’t (or won’t) quit their job or cut back on hours to help, they have other responsibilities such as children and already feel overwhelmed, they say you’re controlling and they’ve just given up, they’re scared and don’t know how to help and think you’re more qualified/competent, they’re lazy, selfish and just don’t want to be bothered (or so it seems).  

 

While any or all of those above reasons may apply, you still need—and deserve help.

 

Where are you? 

 

  • How do I get my sibling to help?
  • My sibling refuses to help and I’m mad as hell.
  • My parents still favor the uninvolved sibling over me.
  • My siblings say I’m controlling and they don’t like my decisions, but they’re not involved enough to help me work it out.
  • My loved one is gone and I can’t get over this hurt and resentment. our relationship is ruined.

 

 

How do I get my sibling to help?

 

 

SAY you need help. Be specific.

Ask them to do one thing at a time.

Tell them this isn’t fair and that distance, fear, raising a family isn’t an excuse and there are still ways to pitch in.

Give them one “job” at a time, it gives them something to focus on.

Use your controlled anger to INSIST they find a way to help out—monetarily, by hiring help, by buying groceries or your parent’s meds—anything tangible is a start.

 

Or, realize your anger is only hurting you and learn to accept them “as is.” Consider your role as a caregiver while exhausting and frustrating, a privilege, and those who choose not to participate are missing out on something really profound.

 

My sibling won’t help, and I’m mad as hell.

 

Use your anger and say loud and clear what you need, or use it as energy (jet fuel) to do all you need to do in order to survive. But know that at some point, you will need to let it go. Anger is jet fuel, but if you drink it, consume it, steep in it, it will poison you. Do you really want to spend your precious time on earth mad as hell? This isn’t what caregiving is meant to do. It’s meant to heal, teach, and guide us.

 

My parent favors my other sibling.

 

There’s a scene in Meet Joe Black that I love. The man who the devil is going to take is having a lavish, over the top birthday party given to him by one of his two daughters. It’s clearly obvious throughout the film that he favors his other daughter—the one not giving him the party.  He asks his daughter (party giver) why she loves him so much?

 

She answers: “Everyone has a favorite, and you happen to be mine.”

She had made peace with this. She loved freely and easily and didn’t demand exact reciprocal love. She gave it as a gift.

 

Can you imagine loving that freely?

With no expectation—or need to have it returned to you in exact measured form? We have no control over what others do or feel, but we do have control over our own choices. I so hope I can get to this place.

 

My siblings say I’m controlling…

 

Are you? You probably are. I haven’t met a caregiver who isn’t—including myself. You have to be, look what you’re doing? It’s a bowl full of fishing hooks and if you try to pull apart if you became controlling because they wouldn’t help—or if you were controlling and bossy all your life—well, it’s a useless argument. Let them know that yes, someone has to be in control, and it’s kind of fallen to you—but you will listen.

You do want (and need) to value their input even though there will be times that you may need to feel you have to override that if it’s something you have to deal with and no one else is around. Also realize that you may have overstepped your bounds, you may be really bossy and fussy, and want it all done your way—and you may need to listen to at least some of what they have to say—and try.

 

I know you don’t want to hear this, that after all you’ve done you feel like I’m beating up on your too. Just realize I am you. I was that bossy control freak caregiver. And in some ways, I make no apologies—it got me through—and I truly didn’t have anyone rushing down to help me take care of my mom, but…I still had things to learn, and I needed to tone it down at times—and listen.

 

My loved one is gone now, and I still can’t get over the hurt and resentment…

 

Ask yourself why you need to hold on to this. Why does it matter any more? Can you not move on because it would be admitting that mom, dad, spouse, sister is truly gone? Are you obsessing about how everyone just left you, abandoned you, and how wrong that was, how cold that was, how you almost killed yourself and they did very, precious little…

My sibling is selfish, lazy and just doesn’t care.

I suspect this is the case–for a very select few. If it is, then let it go. Love them “as is” and perhaps even love them from afar. You can’t fix every relationship. They have to own their part. Concentrate on you, on getting help and resources you need. There are church groups, community organizations, senior resources that can help tremendously–and they want to. You want help from people who willingly give it. Let’s face it, there are a few totally self-centered folks out there who won’t even extend a hand for their own family. Sad, but true. You can’t let that eat you alive.

 

Do you really want to spend your whole life in this vortex?

 

Even if you sever ties, it’s not enough if you haven’t let go of the resentments. I know people who haven’t seen their sibling for years and years and yet when they talk about their rift, you’d think it happened that morning.

 

I’m telling you, it’s not good for you. It’s not worth it. And it’s no way to honor the passing of your loved one.

 

Even if you don’t have to see them—ever again (not that I’m recommending this), I promise you, this won’t go away unless you make conscious decision. Whatever juices you’re stewing in—resentment, anger, hurt, you will eventually absorb, and it will eventually become a part of who you are on a cellular level.  

 

Let the bitter thoughts go. Move on. Fill your life with new and good people and new journeys. Wish your siblings well. Understand they were scared, lost, felt awkward, missed an opportunity. Feel sorry for them, if you need to. They’re the ones that missed out on all you’ve learned, how much you’ve grown.

 

Also know that people change. I know of siblings who missed out on one parent’s care—for a variety of reasons—but then put in time and half on the next parent—or with another sibling—or a neighbor.

This isn’t tit-for-tat. Stop looking for payment or recognition—I hope you get it, and I hope you put up a big fuss and get others involved—as much for them as for you.

I hate to harp on the law of attraction thing, but it makes sense here: the more you focus on what you don’t have–in this case help from your siblings–the more you get just that. No help from your siblings.

But I also hope that you can love them beyond their limitations and fears. It doesn’t mean they’re not good people. That’s not our place to judge, and who knows what small act of kindness they do, what ways they reach out to others.

 

By loving them when they don’t deserve it, we bring out the best in ourselves and act the most like our creator. I know there are countless times in my life when I’ve screwed up, missed the moment, acted stubborn, selfish, and was no where near the person I aspire to be.

 

We all need a little mercy.

 

~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

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The latest stats released by the Alzheimer’s Association paint a grim picture.

USA Today reported that ten million are expected to get Alzheimer’s over the next 2 decades.

Most boomers I know are a bit stunned. 1 in 8 will get Alzheimer’s.

I started bunching people I know in eights. Terrible, I know.

My husband has 8 siblings. Which one?

I mentally grouped my friends and imagined myself visiting them, trying to rouse the remnants of our relationship.

It was so much easier in my imagination for it to be somebody else other than me!

I felt like those people in the Titanic lifeboats. The boat’s too heavy, who’s going to get the ole’ heave ho! We always kid about poor Leo’s icy fingers being pried off one by one. My husband says he can see me doing that. I tell him I’ll sing him a Celine Delion song and wave to him as he sinks to the bottom of the Atlantic. Just kidding.

I walked around for days living too far into the future, speculating too much about whether or not I’d be the one in eight.

Then, I remembered the quote:

“To tell a man his future is to condemn him to one.”

That’s kind of what this news did. Maybe it didn’t mean to.

I assume their reasons for imparting this knowledge was to spar research, educate the masses, but I wonder if they know what they’ve done?

It doesn’t take long for the rebellious inner child to stand up and yell, “Hell no!” I’m not going without a fight.

I’ve already seen Alzheimer’s up close and personal with my mom. She had Parkinson’s for 15 years and Alzheimer’s for at least the last three years of her life. That’s when I brought her into my home, so I know how brutal it can get. What I’m not willing to face is a two, three, four decade old bully poking at me, taunting me, telling me over and over he’s gonna get me in the end.

Are you worried about getting Alzheimer’s too?

One thing I’ve done is to go ahead and play my own devil’s advocate.

So what if I get it? What will life be like?

Many scenarios here: I could be mean and belligerent. Doesn’t sound half bad, I’m kind of tired of being nice all the time.

If I just had one day where I told people what I really think…

It could be scary. That’s what I don’t want. To be on the edge. Nervous, agitated, restless to no end. Paranoid. Angry beyond consoling. To that, I say, drug me. Drug me in a stupor if you have to. By then, I promise you, I’ll have had a good life, and if it’s too awful for me or for you, then I give you permission to gork me out of my…mind. If the last couple of years are a throw away then so be it. If it’s painful to watch, then don’t.

Go live a big, bold, purpose-filled life. That’s the best way I can think of being honored.

I’ve told this to my husband and my girls and it’s going in the “important drawer.”

If you love me, then do something meaningful with your life–in my honor, if it makes you feel better.

But, if I’m just in la-la land, rambling around in the past, and I’m rather amiable, then let me enjoy it.

Don’t remind me who’s dead or that I’m nearly there myself. I don’t expect you to play along and mess up the delicate balance of reality you’ve scrambled for–just make me comfortable. If I think I’m sixteen, or twenty four, or forty-four, then let me enjoy it.

I learned the hard way with my mom that most people fear Alzheimer’s (both as caregivers and for themselves) because they can’t control it. It scares them, rattles their nerves. Their loved one acting “not like themselves,” angry, sexually explicit, fussy, playing in feces–it unnerves people. Is it really all that bad? My brain went kaflooey. It’s not a reflection of the kind of person I chose to be–we are in fact, what we choose. It’s not a reflection of our relationship or of you. It just happens.

Brains go haywire and you can’t control it any more than you can control your dreams, your nightmares, and all those random blips that you dare never admit or mention to anybody. It’s just random electrical spasms of disconnected thoughts and of all the other thoughts you’ve suppressed. We all have it inside us, don’t kid yourself. We have to eventually make peace with our humanity, and our lack of humanity.

We have to make peace with this base self, animalistic, driven, insatiable self.

This isn’t even the bad part.

Alzheimer’s does a lot more to the body and mind than simply making a person different or moody or playing in their poop. You think that’s your biggest hurdle at the time, it’s not.

The forgetting grows like a fertilized weed and it begins to invade a different part of the brain and a person’s life: recognizing not only those they love but even themselves and what it means to be here, recognizing objects like what to do with a spoon, what to do with the food someone placed in your mouth, or when your body forgets to take its next breath.

 That’s when you wish for your fiesty loved one to return to you–memory intact or not. We have to come to terms with this too, and this is much harder and deeper. This is when chaos collapses in on itself. This is when as a loved one, you get quiet. You stop talking about it all, complaining. You’ve shed so many tears you don’t have any left. 

This is Alzheimer’s.

I kidded with my girls on Easter Sunday. I told them if I have mild dementia or Alzheimer’s, that I want a dress-up box–with a fireman’s hat like I had as a child, and French beret (we always had a dress-up box when they were little) I want a boa, and lots of make up, and a yellow rain slicker and golashes. I want a cat, I’ve always had a kitty. I want paints and crafty things. I want my room filled with Van Goghs. I want to work in a garden. I want to dance. A lot. I want loud music and me in my boa and fireman hat clutching a bouquet of forget-me-nots and a kitty in a windowsill looking thoroughly disgusted with it all.

We laughed. They said they would. Then they argued as to who would get me. They said they all took their turns with Nanny (my mother). I told them if I had known that would do them in, (trust me, I was the primary caregiver, not them), then I’d have let her fend for herself (joke, we’re quite a facetious bunch).

Each of my daughters have their attributes. At my youngest daughter’s house, I’ll be a fashionista–coach purses and Italian scarves. She promised me we’d make tents in the living room out of sheets and blankets.

At my middle daughter’s house, she’ll clean out my ears and under my nails. My clothes will be folded neatly–neater than they’ve ever been folded. We’ll color a lot there, and I’ll finally be on time wherever she takes me.

My oldest daughter will feed me anything I want. She’s a candy-aholic. We’ll stay in our pjs and watch movies, and she will kick butt with doctors, let me tell you.

While all this is “play talk,” it’s a good way for families to start easing into the more serious conversations.

I do this on purpose. To open the doors. To make everything not seem so ominous.

We all have living wills. We kid about what we want, but we also have the serious stuff in writing–about sustaining life, feeding tubes, and issues no person should have to make for another.

Am I worried about getting Alzheimer’s? Sure, but I fight it.

Are you? It’s only natural, but I hope you find your own ways to work through some of the fears.

I hope you turn the light on the bully monster in the closet and let him know you don’t plan on being intimidated for the rest of your life.

As I’ve mentioned in other blogs, I know what to do to prevent it as best I can–but life’s still a crap shoot.

I think I’m better off concentrating on having some big adventures, some wild tales and daring feats.

If I’m going to eventually forget everything, I plan on having a lot to forget.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

www.kunati.com

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