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Archive for the ‘breaking point’ Category

I always say in my talks that my mother was a dictator in search of a country. She had no problem ordering me–and everyone else around. She was an “old school” Grande Dame who was comfortable ruling the roost, bellowing out orders, and using just about any manipulative tactic known to womankind to get people to do it “her way” (Lord, bless her–that’s the southern way to say something bad about somebody and for it to be okay) Caregiving my mom was an extreme challenge in finding my balance and keeping the ship of our lives on proper course. Even with Alzheimer’ s and Parkinson’s, my mother had a bigger-than-life persona and I had to learn how to be strong–and loving–at the same time.

I’m not alone. I know lots of caregivers who struggle with feeling intimidated.

I know  a woman whose husband is in a wheelchair (due to a car accident) and can’t talk or eat (he has a feeding tube) and still, he controls the entire house–with his eyes and body language. He fusses (moans, turns away, scowls) and his wife and their aides scramble to please him, and do all they can to placate him. They also avoid him as much as possible because no one enjoys his company. That’s a lot of power–without ever having to speak a word!

Even though my mom was a force to be reckoned with, I had to learn how to make decisions and follow through even when she disagreed. Some days were better than others. Some days she was in a foul mood. Some days I was the fussy one.

I had to break it down to 5 minute increments. I used to put a band-aid on my finger–something to “fiddle” with that kept reminding me not to get sucked into the argument, latest demand, or fall down the sink hole of her emotions.

3 Tips to Break the Intimidation Cycle:

  • Pick your battles, but once you pick one–follow through. Once you establish a new edict, you have to, have to, have to stick with it. “Intimidators”  look for chinks in the armor–and will attack with twice as much arsenal as before!
  • Do what’s right–and best for everyone. As a caregiver, you don’t have the luxury of thinking about just one person. If you’re a part of the sandwich generation or have a multigenerational household, you have to consider the other members of your family.  Doing “what’s best for all” is a way to measure and balance your decisions, and it’s also something to fall back on or “blame” for what you have to do. Consider yourself the general of a vast army, and it’s your job to look at the big picture–and to come out of the war as victor and with the least casualties.
  • Dig deep. Do lots of self talks. When you feel yourself slipping, second-guessing, cowering…leave the room and go take three deep breaths. Even if they’re yelling at you not to leave the room, leave anyway.  Be alone for a minutes and let the fear, hostility, anxiousness leave your body. Remember the overall plan, what’ s best–and go back in when you’re ready.
  • BONUS TIP: Are you a people pleaser–times ten?  We’d (I throw myself in this category) rather keep the peace than speak up, but when we stuff our emotions, they tend to come out in other ways–depression, overeating, apathy, anxiety. Ask yourself what you’re afraid of? Will they be mad at you? Is that so bad? Let them have their own emotions and that you don’t have to get sucked in. Once they learn they can’t manipulate you, they may give up–but it won’t matter what they do once you find your own quiet center.

Being an “intimidator” or being intimidated isn’t a healthy basis for a relationship. Breaking the cycle takes awareness and consistency. But I’m here to tell you that it is possible–to relearn how to talk with and treat each other. In small, but significant ways, we can change. But the only person we need to worry about changing–is ourselves.

Carol O’Dell

Author, Mothering Mother

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“You’re in a bad mood.” I could see it on my mother’s face the moment she woke up.

As a caregiver, my mother and I took turns being in a bad mood. It’s a miserable existence when two people play off each other’s negativity. My mother had Alzheimer’s and Parkinson’s and some days, it was just too much for her to work at being happy. Is it work? Is happy all it’s cracked up to be? It’s not about being happy or giddy, it’s more about being okay with where you life is–acceptance–and then being on the look-out for the good that comes with your situation.

My mom wasn’t the only one that could turn into a Gloomy Gus. I had my own issues to contend with–raising three teenage daughters isn’t the world’s easiest job, and it’s easy to let depression seep in the cracks of your life when you’re caregiving and dealing with end-of-life concerns.

It’s usually the head and heart stuff that turns your insides into knots. I’d mull over a past hurt (my mother should have been archeologist, the way she could dig up the past!) or I’d project into the future and create disastrous scenarios. Ridiculous, I know, but our minds are like a team of horses, if you don’t reign it in, it goes anywhere it wants to, which is usually a bad-thought neighborhood.

In time, I learned that if my mom and I were going to live together again, and if she was going to have to do the tango with two formidable diseases, then we had better get our act together.

Here are a few tips I learned to coax either of us out of a bad mood:

  • Lovingly disengage. Just because my mom wanted to declare it the end-of-the world-all-is-lost-day, I didn’t have to raise the flag. I could take one step back and acknowledge that yes, today was a challenging day for her, but the best thing I could do for both of us was to stay on a steady course.
  • Ignore the whining and grumpiness. I’ve learned something about emotions by observing my long and illustrious marriage–sometimes we push someone else’s buttons so they will either get mad, yell or cry–and then we feed off the release of their emotions. I’m not kidding! Anyone who’s been in a long-term relationship will attest to this phenomena. So the best thing to do is to click into high gear and simply not go there. After a time of it not working, the emotional fire won’t have any oxygen to keep going.
  • Conversely, if you haven’t had a heart to heart talk lately, then it may be time. But cut to the chase. Ask if they’re scared. Ask if they’re lonely. Tell them you are. At first, they’ll most likely scramble. We’d rather pick at each other than look at the truth, but by you admitting your emotions, they’ll gain permission to consider their own.
  • Put on some music or a funny video! Music is simply amazing when it comes to altering our moods. Within minutes, we breathe differently, our heart rate alters, and we start having different thoughts. Turn on some Bach or Count Basie to drown out a fussy moment. Even if they complain and say turn it down, don’t turn it off.
  • Coax, flirt, play, tease your way out a challenging moment. Remember how to cheer up a toddler? Get their favorite stuffed toy, a cookie and a snuggly blanket? Do you think we ever grow up from needing a few creature comforts? We don’t. With a bit of gentle play, a time of wooing, an offer of a gift, we can cause a shift in someone’s day. Come on girls, you know what I mean here–we’ve been cheering up our guys for years. Guys, there is nothing in the world like flowers and chocolate. It works–for moms and girlfriends. Even for dads. Remember what they like. There’s nothing as wonderful as someone who knows you.

When all else fails, choose to be grateful for even days like this. Gratitude can be broken down into bite-size pieces. Today, a flock a sea birds took off over my house. It sounded like angel’s wings–and took my breath to see such magnificence. they just kept coming, bird after bird, their long necks (egrets and spoonbills) stretched against a blue sky. Whatever happens today, I have my birds to remember.

Not all of your day may go so great, but be on the look out for your birds–for something that startles you and takes your breath.

Helping someone get out of bad mood is an art, part play, and part having a plan. The up-side is that you can’t help lift someone else out of the doldrums without giving yourself a boost at the same time.

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“You want to see my new girlfriend?” My friend’s husband teased his wife one day as I was visiting her in the hospital. He is her caregiver, her husband, her lover, her muse and mentor  of 40 years, and her illness had put a real strain on their relationship. 

He pulls out his wallet, takes out a picture and shows it to her. I can tell it’s a joke because he’s grinning from ear-to-ear. She breaks out in laughter despite her pain. They show me the picture.

It was a picture he had taken of his hand!

My friend was in the hospital–that time for close to three weeks. She has a chronic disease that has attacked her intestines. Her husband had sold his business and they had rearranged their life to accommodate this hostile addition to their family–illness.

Both of them had visions of their golden years–traveling in their RV, grandchildren, financial security, and lots and lots of leisure and fun. Hospitals, drugs, and pain was not what either had in mind.

To say that their sex life diminished is an understatement.

To say that sex doesn’t matter in the face of disease and pain is to not look at the whole situation. Sex does matter. It’s the one thing couples do together that they don’t “do” with anyone else. It’s a glue, a bond, a secret language, a healer of life’s wounds…to simply and biologically state it, sex is a needed release.

More magazine has an interesting article in September 09’s issue on this very subject. They state that 75% of all marriages that are dealing with chronic illness long-term end in divorce.

These aren’t shallow people. This isn’t Jon and Kate splashing their news on the headlines (not that they’re shallow, marriage is tough and I hurt for them and their children). These are quiet, hard working, family oriented people who  face surmounting, mind-boggling stress, heartbreak, financial ruin, unbelievable and unrelenting pain. And the one thing that can combat all this–their marriage and the healing powers of sex and intimacy–are taken from them.

How do couples get through caregiving and the strains it places on their marriage?

I observed my couple friends and this is what I’ve gathered.

You readjust.

You let go of what you thought life would be.

You dig deep to find your integrity.

 You find joy in the smallest of things. You find purpose as a caregiver.

You use your anger not at each other like weapons of mass destruction, but together, to get things done, to let off steam, to keep from going crazy…and you turn that anger into humor–maybe a little sick and twisted–but it keeps it from turning toxic inside you.

You do what you have to do to get by–and it’s nobody’s business. How you define sex may be different than other couples, and how and when you’re intimate may not fit the national average.

You get strong and tough and tender and real all at the same time.

I have no big answers here. It’s too complex and too gritty to give you bullet points–as if you could fire them on target and make it all instantly go away. What I have gathered from my friends and others I’ve seen going through years of what illness can do to a relationship is that the ones that make it create this circle of energy around themselves. They are one.

Couples who face caregiving challenges together have come through the fire, and on the surface, no, life didn’t turn out like they thought it would–but in many ways, it’s better. I witnessed it in my parent’s marriage.  The unity, the simplicity, the bond they have, they earned. You can see it in their eyes, they familiar gestures of thoughtfulness, the resolve in their voice. They have something profound.

~Carol O’Dell

Author, Mothering Mother

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Caregiving kicks up family igivssues. It just does. We can think we’re over them. We made amends. Asked forgiveness-forgave–and then we find ourselves back in that vortex of anger and hurt. Are we truly able to let go of a grudge?

We don’t like to admit it, but we like our addictions, and yes, a grudge (hurt) can become an addiction of sorts. We grow accustomed to, feel comfortable and safe with our dramas. Why? Because people fear the unknown. Even when the known isn’t so great.

Grudges. We all have them. Hurts from the past. Times our moms or dads weren’t there for us. Times when our siblings belittled us, took something we wanted for their own. Some wounds are profound. Some of us have been molested, raped, endured physical or verbal abuse. It’s not that we’re trying to be difficult. These are valid. They were and in many ways are knife slashes to our soul. And when it comes time to be a caregiver, these grievances resurface and can get in the way–not only of giving care, if we choose to–but get in the way of our own personal growth and healing.

5  Keys to Letting Go of a Grudge:

  1. Admit you have one.
  2. Admit you’re tired of having one.
  3. Stop negative words from coming out of your mouth–mid-word.
  4. Crowd out those hurtful thoughts. When you catch yourself mulling over the hurts of the past–crowd it out with something else–music, go-online and read some jokes, or call an upbeat friend.
  5. Give your grudge a ceremony. Create a campfire and write your hurts on paper and then burn them, or write them on rocks and place them in a rock garden, do something that signifies that you’re letting go of this hurt–and when you start to say or think about that grudge, remind yourself of that ceremony and tell yourself it’s a done deal. That’s why weddings and funerals are a part of so many cultures–they signifiy new beginnings and bitter-sweet ends.

I was watching the film, What the Bleep Do We Know,and I was reminded by one of their neuro-scientists about the power of our frontal lobes. Human beings have a highly developed frontal region, and this region is our seat of reason. We can decide, change our minds, examine, ponder, and observe–all from this vantage point. If our frontal lobes have been damaged, our ability to decide–anything–whether we’d like toast or a biscuit for breakfast is hampered, if not downright halted. 

Deciding what to do with a grudge is a choice.

Have you ever had something, thoughts that consumed you for years–that are no longer a part of your every day life? That means you’ve moved on–and if you did it once–you can do it again. Somehow, you started to choose to view that hurt (grudge) differently. It lost its “umph” as my mother used to say when a Sprite no longer held a zing.

Grudge sounds so negative–sounds like drudge or dredge. Let’s just call it a hurt we’ve been holding onto for a while. I’m not belittling what has happened to you. I have had some pretty decent size  traumas in my life, so I’m not immune to this topic. I take it very serious. It took me years, years to deal with my hurts. Did you know that sociologist’s have found that it takes about 15 years to work through the issues that come with severe traumas such as dealing with a suicide, murder or rape? That’s a lot of time, but if you’ve ever experienced any of these, you know the physical and psychological toll it took on you.

Why do some people absorb their pain, use it in some  way for the good, incorporate it into their being, and in essence, “move on” when others seem stuck in anger, regret, and seething pain for the rest of their lives?

I don’t know the answer to that.  I don’t think it’s because one person is better or stronger than the other.  I do believe it’s in part, a choice–even when they don’t realize it. I think it’s because the light bulb (understanding, revalation) hasn’t been turned on–yet. It’s part of their journey, and I love the saying, “If I’d-a known better, I’d-a done better.”

But I do know that people are capable of change–great change. Sometimes the shackles that had us so pinned down one day simply fall to the ground. 

For me, I think I wore out my anger and hurt. I got  sick and tired of being sick and tired as Oprah says. My angry, pitiful story of how I was hurt was no longer a story I wanted to tell. I started to observe that people didn’t want to be around me when I was complaining. I could taste my own toxins and I was turned off by what was rolling around in my thoughts and falling off my tongue. 

I began to want to be well. I started by controlling what came out of my mouth. Not easy. Lots of start-overs.  I wrote down my hurts, said a prayer, sometimes burned them on pieces of paper, ready every self-help book under the sun. My awareness and desire to change was at least a start.

There were times when caring for my adoptive mother (who had Alzheimer’s and Parkinson’s) was difficult. Buttons got pushed and at times, I felt right back in that quagmire of the anger and pain I thought I had dealt with years ago.  But I found that I chose not to stay there, in my complaining, nasty, negative self. I didn’t want my grudge any more. I didn’t identify with that part of my past. It wasn’t that “we,” my mother and me were completely fixed and all was magically erased–it wasn’t, and I didn’t want it to be. I could accept who we were, what we had done to ourselves and each other, and I could see that we were no longer those two same people.

If you’re reading this, then maybe you’re ready to let go of some of that back of the closet crap you thought for some reason you had to hold onto.

It’s a new day when our grudges no longer bring us comfort. A new self is emerging.

~Carol O’Dell

Author, Mothering Mother

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I have a magnet on my back door that reads, “Cherish this moment. This moment IS your life.”

As caregivers, we sometimes think we’re living for our loved ones. We’ve put our life “on hold,” and as soon as they’re better, or after that die, we’ll get our life back. Not a great way to look at caregiving–or your life. No wonder we feel resentment. No wonder we’re always agitated, gripey, or zone out–we’re constantly saying (whether we realize it or not, we’re giving out the message),  “I don’t want to be here.”

But what if “here” is all you’ve got? All you’re ever going to get?

Remember that great line in the movie As Good As It Gets?”

 Melvin Udall, played by Jack Nicholson is plagued so badly with OCD that his life is nothing but self-imposed rules. He can’t allow people or love into his life because they’ll make a mess, cause him to step on a crack in the sidewalk, or mess up his arrangement of silverware. He falls in love with a waitress who has a “messy” life. Not enough money, a sick child, living with her mom and waitressing for a living. (The quotes are so, so good from this movie, check out a few here)

After almost losing the love of his life because he’s so darn difficult, he decides he’s got to get better, he’s got to get help. He barges into his psychiatrist’s office and demands to be seen. He looks around and sees an office full of scared and miserable people. People waiting for their life to start. Waiting for their OCD to go away. Waiting.

He can’t wait any longer.

He blurts, “Wake up, people. What if this is as good as it gets?!”

So I ask you, what if your life right now, today, is as good as it gets?

Are you going to give up, go to bed and pull the covers over your head? Forever? No, you’re going to make it work. Sadly, the end of Alzheimer’s and Parkinson’s is death. So yes, there’s a way out, just not a good one. But death is the way out for all of us, so don’t let that get you down.

I love a little book that came out a few years ago, “Do One Thing Different” and the concept really stuck with me. When you’re caregiving, much of your life is structured around meds, treatments, and rehab, so jumping into a full exercise routine or enrolling full-time in college really isn’t an option. But you can change one thing. One thing that takes, oh, ten minutes a day–or less. Don’t tell me you don’t have ten minutes. Everybody wastes ten minutes–on tv, over-cleaning, or chowing down on something that’s not even all that tasty.

For me, I’m concentrating on my waist. Sounds silly, but according to many health experts, your waist circumference determines how healthy you are. Women need to be under 35, and men under 40. Those are pretty generous numbers, (American size), and I’m fortunate to have a pear shape, but I figure that instead of going for a total body makeover I’d never achieve, I’d spend ten minutes a day doing exercises that focus just on my waist. Ten minutes. I’m not going crazy and saying I’m going to workout 2 hours a day when I’m know good and well  that’ll last about 2 days. I can coax myself into ten minutes working out in front of the tv instead of sitting in front of the tv.

The other thing I’m focusing on is brushing up on my Spanish. I may be spending time in South America this fall, and although I don’t want to fork out $400 for Rosetta Stone, I went online and found several YouTube and iTunes Spanish lessons for free. I’m also going to a used bookstore in town, trading in some old books and buying some children’s books in Spanish to read. So the way I look at it, these two small items allow me to exercise my body and my mind with little or no cash outlay needed.

When do I say, “That will have to wait until after my caregiving years are over.”

Really? Is there some small way you could jump start process?

Remember, everything that has come into creation was once just a thought. Jack Canfield wrote an amazing book, “The Success Principles,”in which he describes years ago when he was only hoping to be a sought after speaker and author how he wanted to go to Australia to speak. He had never been asked to speak internationally, so it was unlikely he’d get a call from “down under.” So he went to a travel store and bought a poster of Sydney’s famous opera house and hung it in his office. Within a year, he was speaking in Australia.

Take it down to your level. Maybe you’re dreaming of a vacation. Take out that seashell you picked up a few years ago and put it on your kitchen counter–just as reminder–and a way to lay claim to your own future. Check out a book from the library about where you’d like to go, or visit an online forum where other travelers have been there and suggest places to go and see. Daydreaming is great way to get your mind off the daily caregiving stress.

I know you can’t just get in your car and drive away (although that was one of my favorite fantasies–I was going to drive to Key West, and still might!) But you can start with one small change. Don’t put your entire life on hold–it won’t even make you a better caregiver, just a fussier one.

I hope you’ll take me up and drop me a line at writecarol@comcast.net or leave a comment and share what one small change you’ve made.

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Alzheimer’s is one insideous octopus of a disease. It does one thing to one person and something totally different to another.

Some individuals become docile, too docile. They stop talking, and pretty much stop moving. For others, Alzheimer’s turns them into a fidget machine. They pace incessantly, talk, babble, rant, need next to no sleep, and when forced to sit, their knee jiggles non-stop. Others are paranoid and will lash out at anyone who tries to touch them–it’s as if their brain–and body–is on fire.

And for some, Alzheimer’s makes them anxious, mean, and violent. There’s no other way to  put it.

They curse when before the disease they were  practically saints. They use vile language that would shock and embarrass a sailor, and their eyes look as if they could kill you in your sleep. For many, their violence is more of a protective mechanism.  They may thrash, hit, try to bite if they feel cornered, yell, cry. It’s more exhausting and embarrassing than harmful. They act like really big two year old.

In all of these cases, Alzeimer’s effects each brain differently. You  have to think of it as a chemical reaction, not a persoanl decision.

And then,there are the truly violent . Their rage is unpredictable and unprovoked. They slap, bite, kick, pinch, and for a few, and surprisingly, they possess the power to break bones, knock someone down, and are truly dangerous.Many are placed in care facilities because their families can’t handle it. Their families don’t visit as often because they’re scared. They feel as if their loved one is dead to them, and yet they struggle with guilt every single day. It’s an awful existance for everyone involved.

It’s that interum time that I’m addressing–when you’re starting to notice some anger–gritting teeth, cursing, grabbing your wrist really hard, knowing you against the wall–and you don’t know how far this will go. You make excuses. You provoked it. You shouldn’t have confronted them. They’re not taking their meds. It only happened once…these are just a few excuses we create to “protect” our loved one.

I urge you to speak to your doctor now.

For some, an added medication that stabalizes their mood (and yes, it may make them lethargic) can curtail their violence. It doesn’t work with everyone, but if you catch it early, it just might work.

For many, particularly spouses, you hide these changes in behavior  from your children, your neighbors, your friends.

You stop having people over. You wear long sleeves to cover bruises.

You’re afraid all the time. More afraid they’ll take your husband or wife away than that you’ll be hurt.

You can handle that–but the guilt, the shame, the thought of being separated is what keeps you silent.

You grieve the death of your marriage, of the life you had–and yet, you can tell no one what you’re going through.

You don’t want anyone to “see” your husband, your wife this way. You want to preserve their dignity.

I understand. I did this with (or for)  my mom. I shielded her from the world. I didn’t let people know how chaotic, out of control, scary and heartbreaking it really was. I let her dig her fingernails into my arm and scream at me, her eyes so wild I didn’t even recognize my mother any more. If I would do this for my mother, I can truly understand how a husband or wife would be wiling to do even more.

But here’s what I came to realize:

This is a disease. No one will judge you or your spouse–and if they do it’s because they don’t understand what’s happening. 

Your loved one can not  help this. This isn’t their “inner self” or what they’ve been thinking all along. You didn’t contribute to this either. It just is.

It really is nobody’s business and you don’t have to share it with everyone, but having at least one confidence, one dear friend or your clergy can help lighten your heart.

You know those statistics about caregiver stress and how many caregivers die before their loved one? They’re talking about you!

You’ fall into that category big time. All this stress could lead to depression, heart disease, obesity, and strokes–and you know your loved one wouldn’t want this for you.

You are not alone.

According to a recent study conducted by the Journal of the American Medical Association s of resident-to-resident violence in Massachusetts nursing homes and dementia special-care units, researchers found that about 25 percent of the dementia population in a care facility had violent tendencies. More and more law suits are cropping up because staff and patients are being attacked, and resulting in physical injuries such as fractures, dislocations, and lacerations.

Sometimes, you just can’t do it anymore. You feel that you’re in a living hell.

This is a truly dangerous state and you have to ask for help.

With guidance, you can find a good care facility that has a low patient to care staff ratio and administers the proper medications needed to lessen the violent outbursts. I know you don’t want to “dope” your loved one. But you can’t continue to be hurt, or risk that for others.

This disease can get really ugly, and if you’re in this situation, I am so, so sorry–but please, don’t suffer alone.

That’s not love, and your loved one wouldn’t want this for you.

Screw what your family would think, what they neighbors will think. Protect yourself and know that asking for help is the right thing to do.

I can’t promise you that you and your spouse can stay together–in the house. I can’t promise you that this is going to all magically get better.

Sometimes we really do have to grieve and let go–knowing that you’ll never get back what you had.

But I promise that while it’s going to be hard–and lonely—and you’ll probably feel guilty–after a time, things will get better.

Your loved one’s care might be better managed with help. And although your life won’t be the same, it can be good. A new good. A different good.

If you’re experiencing Alzheimer’s, Lewy Body or dementia related behavioral changes (violence or otherwise), please consider calling the Alzheimer’s Association National Hot line. It’s confidential and you can speak to someone who really cares. The number is: tel: 1.800.272.3900

~Carol O’Dell, author of Mothering Mother

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For many of us, caregiving a spouse is in our future. We like to not think about it, or at least imagine that it’s a long, long time from now. For many, it’s a daily reality.

According to the Family Caregiving Alliance, there is a much higher likelihood of receiving care from a spouse than from an adult child. 
Nearly one-quarter (22%) of caregivers who are themselves 65+ are caring for a spouse. Personally, I think it’s higher than that.
And it’s not all the women who are doing the caregiving. 
I know lots of men who are caring for their wives through cancer, MS, heart disease and dementia.
 These men have my full respect. The ones I’ve met are kind, thoughtful, and are trying to very hard to give their wives the best of care. I’m sure there are many who are not like this, but I do have to pay homage to the ones who are.

So why does caregiving my spouse scare the bejezus out of me and most everybody else?

 Because my husband is my strength, my rock, the person I can rail against, nag, complain about–but would never want to do without.

Even when he gets the flu, I’m a wreck. I’m projecting into the future, seeing him years from now, weak, and me trying to care for him.

He’s 9 inches taller than me and about 60 pounds heavier than me, and the few times he’s had minor surgery, I’ve seen how difficult it is.

But that’s not it.  We’d find a way to make it work.

It’s not that it’ll be hard, exhausting, or challenging. I cared for my mom through Parkinson’s and Alzheimer’s. I’m no wimp.

So just why is it so hard to care give a spouse?

I’ll just vent and you pick the one that best fits you:

(some of them don’t paint me in a good light, but I’m being a guinea pig here so that we can all identify with our less than admirable selves)

I don’t want to become his “”mother.” (By that, I mean I want to remain his wife, lover, and friend).

I don’t want to be stuck by his side 24/7–I’m very independent.

I don’t want him to be weak–for me, or him. He’ll hate that.

If you’re sick, then I have to be well? What if I get sick?

Who am I now? How do I define myself?

I don’t want him to order me around all the time–and he will. I don’t want to fight all the time.

I don’t want to cry all the time either.

I don’t want him saying “thank you” a gazillion times a day and feeling guilty.

I don’t want it to be over.

I don’t want to watch him /her  slowly die.

I don’t think I can manage our life and home without him.

I don’t want the fun times to be over–the trips, the banter, the ordinary days.

I don’t want our world to grow small, isolated, and lonely.

I don’t want our world to revolve around doctors and medicine.

I don’t want that time to come when I can’t make him smile.

****

This just starts the list. No one wants any of these things. But until we can admit them, I’m not sure we can move on.

I know that the next step is to take this list and turn it into a WANT list, find the good in whatever life throws me.

I was at a talk for Community Hospice on Saturday at the Mary Singleton Senior Center in Jacksonville, Florida and I told this crazy story about a time when my husband passed out at an amusement park. He said he was dizzy, grabbed his neck and fell stiff as a board onto the gravel road.

I was freaked. I thought he died. And you want to know that first fleeting thought?
“You…(I’ll leave out the colorful phrase), you have died–died and left me to raise three kids? Alone?

I then began to pound on his chest (not CPR, even though I was trained) and yell in his face “Help!” What? As if HE could help us? I did it over and over.

Thank goodness, he started to come to, and then I had another thought…”He’s a narcoleptic! He’s going to be conking out all the time!”

I swear, I followed him, walking three feet behind him like some antiquated Japanese woman (did they ever really do that???) for the next two years.

As if I could catch him.

***

That true, but embarrassing example is a light hearted version of what wives and husbands feel everywhere.

Deep inside we’re all screaming, “Don’t leave me here without you!”

Spousal caregiving kicks up a lot of emotions. Some sweet and sentimental, some down right  self-serving. 

The only thing I can offer is:

  • Talk, talk often. Get used to this conversation so that if something awful happens, you’ll have practiced. Kid around, make jokes, talk about the “what ifs.” Nothing is as scary as an unsaid fear.
  • Tell your loved ones how you want to be cared for. Please, for your family and spouse, sign a living will. They are so, so easy. Go to The Five Wishes and request one or print one out. Don’t make your family guess and then fight or feel guilty because they didn’t know what you wanted–or they all heard something different.
  • Have health insurance, life insurance and long term disability or care insurance. I know the economy is tough, but try to keep these, or seek a governmental equivalent (for health insurance if you qualify). Murphy (as in Murphy’s Law) likes to strike the second you’re unprotected, and caregiving is tough enough without adding the stress of finances.  

If You’re Already Caregiving:

  • Be present. Each day is precious. Even if it’s hard, chaotic, or near the end, it’s a privilege.
  • Keep your blinders on when you need to. There’s a time to think about the future, and a time when this moment, this hour, is all you can deal with. When times get rough, make your life simple, quiet, and don’t go to all those scary places. It’s not the time.
  • Never stop being a spouse. I know that caregiving is a lot of “doing.” Meds, baths, physical therapy, doctor appointments, home health aids…after a while you can forget you’re a married couple. Never ever forget that this is the person you said ” I do” with. At times we have to force ourselves to step out of “Nurse Nightingale (or Nurse Ratchett’s) position and step back into that role that no one, no one but you can fulfill. You’re his sweetheart. You’re her sweetheart.
  • Give  up being perfect. It’s exhausting and impossible. It’s the quirks, the foibles, and the fights that define us. Do the best you can. Forgive yourself when you lose your temper, forget something important, or just can’t do it all. Look yourself in the mirror each night and say out loud, “You did well today. I’m proud of you.”
  • Trust that as grueling and dark as it is, you will find the strength, you will find your way through spousal caregiving. Somehow.

***

At the end of my talk, the very sweet woman had me sign her book. She could hardly talk, she was crying so. Her husband of 54 years has Alzheimer’s. I held her and cried too. I try to give tips and I try to encourage, but I can never convey how deeply I care. Your stories touch my heart, and sometimes, all the advice in the world won’t be enough. 

Caregiving a spouse is so hard. Why? Simple. Because we love them.

~Carol O’Dell, author of Mothering Mother

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