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Posts Tagged ‘caregiver stress’

Caregivers need to talk to other caregivers because no one else can truly understand what they face day in and day out. I recently spoke to a group of caregivers at Christ Episcopal University and every one of them needed to be there–for different reasons. Some needed to vent. Others had questions about Alzheimer’s behavior, about forgiving the past, about grief. Some just needed to be in a safe place where they felt accepted, understood, and didn’t have to hide just had  crazy/bad/bleak/or weird their lives had become. No one but another caregiver knows about caregiver stress and how it can build and build. Not their doctor, their less involved siblings, not even their pastor or their therapist–unless they happen to be caregiving, too.

Sadly, our friendships oftentimes suffer in our caregiving years. We’re not exactly great company–sleep deprived, fussy (I was, I can’t speak for you), and a little self-absorbed (in other words, we need to do a lot of venting). It’s important to preserve those long-term friendships and one of the best ways to do that is by not exploding/emoting all over non-caregivers–at least not at volcanic/molten lava proportions. Other caregivers will get when you’re having a “crap day,” I used to call them, and be more patient and relating to your tears, screams and whines.

It’s easier now than ever for caregivers to connect. In the past five years there’s been a boom of care related online forums. What’s great about these is that they’re 24/7.  Caregivers need that. Not only are they up at the most ungodly of hours, that’s usually when they’re the most ticked off, stressed out, and pushed beyond all human endurance. That’s when they need the anonymity and immediacy a forum provides.

Today, I’ll be sharing with caregivers over at Caring.com. I’ve written their Family Advisor column for years and now I am a contributing editor to their home-care newsletters. We’ll be talking about caring for our parents, and since it’s close to Mother’s Day, I’m sure the conversations will gravitate toward our mothers, their care, and our complex and so important relationships with them.

Feel free to join us if you are happening to read this:

It runs May 11th, 2012 from 1-3 Pacific Time under the Caring for a Parent forum, and will also be on Facebook:

http://www.facebook.com/events/342572865796240/

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“I get tired of being told to take care of myself. Yeah, I know I should, but it’s just not that easy.”

It’s not like you haven’t thought of sleeping eight continuous hours, or that you haven’t thought of making an appointment to get your teeth cleaned, or signing up for yoga or join the Y. It’s just that a few things keep getting in the way….

Your loved one gets on a coughing jag from 2-4 a.m. You’ve been in hospital land for like, three weeks. You’re sick of going to doctors so you don’t relish the thought of making an appointment for yourself. And you know you should want to but the idea of getting into gym clothes and working out is about as appealing as a proctology exam.

I got whapped back into caring for a caregiver this week. We’re in the hospital with my two-week old granddaughter who needed heart surgery. I’m on vigil, side-by-side with my daughter and son-in law. I’m back in the world of vinyl sleeping chairs, Bunn-o-matic coffee and powdered cream, monitors, IVs, and waiting for rounds. It’s oh so familiar.

As the 2nd in line (caregiver of a caregiver) I have just the slightest shift in perspective. After a week or full-out trauma and eating only cafeteria food knowing we could be here a month, I can now begin to make a plan. I went to the store and bought us salads, carrots, grapes and apples–and 100 calorie snack packs for the middle of the night, help relieve the stress munchies.

I’m taking the stairs instead of the elevator several times a day (we’re on the tenth floor). I’m avoiding anything fried but am allowing for the occasional cookie and hot tea snack. I try to go for several long walks around the University of Florida/Shands campus a day. I’ve thought about doing some lunges and push-ups but I haven’t actually done it yet:) We’re all to worried to think much about our own bodies, but it really won’t do anyone any good if we just lose it on a giant box of Krispy Kremes.

Bottom line, no one likes to be told what to do.

Telling a caregiver to take care of themselves might get you hurt, or a nasty look at the very least. Buy them a cup of their favorite hot tea.  Give them a gift card for a massage. Tell them a funny joke so they’ll chuckle the rest of the day. Give them a loofah and some body salts.

Put your heart where your mouth is.

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Imagine a battlefield. People are wounded. Some are screaming in pain. Others are close to death. It’s easy to freak-out, but as a caregiver in the midst of your own war zone, you can’t afford to panic. You are the triage nurse. You have to float above the scene and figure out how to not only care for one, but manage many. This doesn’t mean you don’t care, that you don’t wish you could stop right there and cry or scream or freeze and go numb. You can’t. Not now. Not yet.

You may not recognize that you’re living in a state of panic (or drama) because it’s been so long that it’s your new norm. You do what’s right in front of you. The person who screams the loudest, demands the most gets your attention first. The one who needs an MRI, a refill on meds, is in the hospital can pull all your thoughts and energy toward them. The problem is, someone else, the person who is quiet, who is suffering emotionally, who isn’t “in your face” may be the one who is in the most danger. Being in a sandwich generation is common, and it’s so, so hard to choose between your child and an aging parent–and every day, every situation is slightly different.

Maybe it’s your marriage that’s taking the brunt of all your caregiving. Maybe it’s your child or grandchild who needs your guidance. Or maybe it’s you and your health who has stepped aside too many times, who doesn’t want to bring attention to the fact that you’re cramming painkillers (think about that word for a moment) because your back is in spasms. Ignoring and/or denying what’s right in front of you is easy when you tell yourself you don’t have time to do it all, but there are things you’ll never get back (your years with your child, your health can’t always recover).

If you’ve ever watched a great medical show you know how the scene plays out–the one who is in charge–who makes the tough decisions is why in the end everyone gets cared for. They slice through the noise, through the fights, the family members pitching fits, and they zero in one what has to get done first. It’s their ability to detach that makes them so effective.

There’s nothing like a cool head in a chaotic situation.

Here’s a short caregiving triage checklist:

  • Recognize the situation
  • Prioritize what needs to get done/who needs your initial attention
  • Make a plan
  • Get others to help
  • Recognize that you won’t catch everything and accept that
  • Don’t get sucked into one person’s drama
  • Don’t be afraid to be vulnerable
  • Remember that sometimes all you can offer is connection–holding hands, a comforting word
  • When it’s over, assess and process–it’s important that you do feel, you do acknowledge what you and others have gone through

It may sound cold–when it’s your mother, your partner, your child, but it’s not. Everyone will feel safer and calmer when you’re not in caregiver freak-out mode. We don’t always have the luxury of falling apart right on the spot, but it’s important to step away–into your closet, in the privacy of your car–and feel what you’re going through. To feel your losses, your fears, to find someone you can confide in, and to let go and let it all out. Choose those moments and take them. Holding it together all the time is beyond exhausting and all those emotions (worry, guilt, resentment, fear) will leak out in the most inappropriate ways–so when the initial full-blown crisis begins to subside a bit, step out and give yourself permission to feel. 

 

 

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It’s 2am and you’re in the ER. Your mother has fractured her pelvis. You get the diagnosis your husband has cancer. Your dad has wandered off and you can’t find him–nobody has to tell you he has Alzheimer’s–you already know. Any of these circumstances can throw you to the deep end of the caregiver freak-out pool. I know what it looks like and feels like. You feel numb and alert at the same time. You eyes get this wild look. A thousand thoughts and feelings bombard you and you can’t turn them off. Your life–as it was five minutes ago–is over.

I don’t think caregiver freak-out can be avoided. Bad things happen. Accidents, diseases, falls…life is a landmine. How we react is in large part biological. We go into a kind of shock. Adrenaline floods our systems. Our brains are on fire with everything from confusion to regret. The cocktail of panic, dread, worry, tenderness and loss  is part of our jouney.

The problem is, you can’t (or rather shouldn’t) stay in caregiver freak-out.

You’ll make yourself sick–and you won’t be any good to anyone.

Yet how do you break the cycle?

You’re stuck at the hospital or rehab for weeks on end. Your loved one may need tests or surgeries. You have to call everyone you know and give them “the news,” replaying all the details again and again. You face more changes. Perhaps it’s a wheelchair, or a care facility, or they need to move in with you. Family members come together to figure out what to do.

Your world has changed. You used to get up and go to work or run your errands. Now you make doctor appointments, set up physical therapy visits, get to know your pharmacist on a first-name basis. You’re buying bedpans and meal supplements. Your loved one is in pain or they’re confused and no matter what you do you can’t seem to get it all done, relieve the pain, or comfort the one you love.

You live in a perpetual state of sorrow and dread. Your spouse, your parent, your family member or dear friend is sick, really sick. They’re going to die. You can’t bring yourself to sit five seconds with that thought. You don’t know how to be with someone who is dying. You don’t know what it will be like. There’s so much you don’t know so you stay busy. Crazy busy. And although you never say it aloud something in you believes that if you do enough, care enough, try hard enough..you can prevent what’s to come.

So you take up residence in caregiver freak-out land.

You didn’t realize you changed your zip code, but you did.

Your world, your thoughts, your body and spirit barely resemble who you were. You’ve thrown everything and I mean everything you’ve got into caregiving.

But there’s a whisper behind you. You’re running scared.

I know this because I lived this. My mother had Parkinson’s and Alzheimer’s and heart disease and I was her only child. She needed me and I did everything I could to make her feel safe, to comfort her, to outrun death. I know that awful feeling and I’m not going to offer three tips or anything like that. I hope to share in the next few blogs that is is possible to slowly but not easily possible to move past this initial phase–and why it’s  a little like moving into a nuclear missile testing site–perhaps not the safest address in town.

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Boomers and caregiving: Pass the joy with a side of stress. Rita Wilson spoke on the Today Show this morning  about her bountiful life–a mother in her 90’s, teens at home, being a new grandmother, and writing a new column over at Huffington Post/Huff Post 50 about women 50 and over. Her days (like most boomer’s days) sound like there’s more people to love and care for than any super-hero boomer woman can manage.

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

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

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

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

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

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

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

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

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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Caregiving and romance doesn’t seem to go hand-in-hand, but in many ways, it’s the epitome of real love. To care for a spouse, to set aside other aspects of your life and even your marriage to care for an aging or ill parent or child, is about grown up love–the kind that gives, and at times, the kind that sacrifices. Keeping love alive isn’t always easy under the best of life’s busy circumstances, and caregivers even have added stress, but it’s so worth the challenge.

Love Do’s:

Number one goal: Survive. We call ourselves “Team O’Dell.” Some days we felt like a black-ops team whose goal was to get through the dangerous landmines of caregiving and raising teens without committing kamikaze. Wasn’t easy, but I liked the idea of the two of us on a covert mission. However you do it, stay united.

Do keep a bigger vision in focus: Your marriage, your health, your sanity, your humor, your passion–keep that visionary “finish line” ribbon in site. No matter what happens, how long or how hard caregiving gets, the goal is survive–and even thrive.

Do practice good manners. Kisses hello and goodbye, thank you for the hot tea, opening the door for your lady–treat each other like you would on your first date. Why? Because in honoring someone else, we honor ourselves and our relationship. It takes a bit of discipline at first and then it’s easy–and really helps to smooth things over on tough days.

Do compliment each other. Tell your loved one how brave they are. How compassionate they are. How funny they are. Caregivers (for the most part) don’t feel attractive, don’t feel perky or sexy, so remind them they are. Nothing is sexier than someone who knows how to love.  Compliments never get old–not when they’re genuine.

Do look for moments of connection. Forget going on a two-week vacation for now–don’t even torture yourself with the idea. You may not even be able to go on a two hour dinner date, much less a weekend getaway–so grab a kiss in the garage, dance to your favorite song in the kitchen, or better yet–start each day with a shower together! (that was the one place my mother respected my privacy–I think she was part-cat and was afraid to get wet!)

Do celebrate every chance you get. See some gorgeous wildflowers in bloom on the side of the road? Stop and grab a handful. Buy her a mini cupcake and stick a candle in it as a “you survived another week” celebration. Celebrating isnt about fancy gifts, it’s about taking notice.

Do say thank you often. Every day, in fact. Consider a gratitude board where everyone writes what they’re thankful for–a great kitchen or laundry room addition. Use a bit of irony: “I’m thankful I didn’t pull all my hair out today–or I’m thankful I didn’t rip that doctor’s nose off when he trated me so condescendingly.” Not all gratitude has to sound like a Hallmark card.

Do invest in your emotional and relationship bank account. The caregiving years may be a time for withdrawals more than deposits. That’s okay. Know that your relationship is strong enough to go on auto-pilot for awhile.

Do give mercy cards. Your spouse snapped at you for no reason? Don’t snap back–offer a mercy card instead. Sometimes we need to let something go, look over it, and realize they’re under so much stress that just need someone to cut them some slack.

Do stand up to your spouse when you need to. The other side of mercy is a showdown, and sometimes that’s just what’s needed. If you spouse is being an ass, pull him or her aside privately and tell them the strong truth. Sometimes it’s the cold-water thrown in your face that gets your attention.

Do use the ole’ good cop-bad cop routine if you have to. Let your spouse use you as an excuse if they need to. Sometimes we need to blame someone else–it’s okay–use every tactic you need to. In times of war the rules change. In times of caregiving, the rules change.

Do know and expect that the love and energy you give out will come back to you. Demand it back. Fully expect that your health and your relationship will rebound. We’re actually hardwired with tremendous reserves for time of great stress or need. That’s why we have such amazing brain and muscle reserve. When you need it, it’s there–but be prepared for the adrenaline dump that comes after it.

Do know how to pace yourself and take needed breaks. You can deplete those reserves–and then you have nothing left and your health can be in serious jeopardy. A six week hospital stint, a month of all-nighters–and before you know it, you are completely shot. Have you ever seen some daredevil on television do something so reckless that it’s just plain stupid? Don’t be a daredevil with your health (mental or physical) for anyone else. If you go past that, its dangerous ground. Accept that there’s is a limit to what you can do.

Do consider each other a source of strength. The arms of you spouse or partner should be the safest place on earth. Create a haven for each other.

Do know that caregiving will end–and yes, eventually it will circle back and begin again. So when caregiving comes to an end, grive, reocver and then…live, celebrate, play, work–fill your life in a million meaningful ways. It takes some time to get back to feeling connected with the rest of humanity, but it will come. We’re meant to be fully engaged on this big blue ball–so when you can, while you can, go make memories, do some good out there, learn, explore, give back, kick up your heels and make some noise!

Keeping love alive is crucial but it isn’t going to be easy.

Whether it’s Valentine’s Day or any ole day, you’ve got to have some fight and some passion in your relationship. Being a caregiver isn’t about squelching all the other parts of you–it’s about weaving them in anytime and anyway you can. Be willing to invest and preserve your relationships and be determined that caregiving won’t take you down for the count. Caregiving is yet another thing you can look back on and realize that ironically it made you strong and it’s a part of who the two of you are.

Life is precious and caregiving seasons come and go. When it’s time to play, to travel, to really get out there–do it with all you’ve got!

In the words of my daddy, “Be good and take care of each other.”

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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A friend of mine told me that she confronted her mom about her memory loss and told her she was concerned it might be dementia or Alzheimer’s. Like many caregivers her hope was that she could convince her mom to visit a neurologist. Instead, her mom got furious and now won’t talk to her. My friend is devastated. She wonders if she stepped over the line, if she should have just made up another excuse to get her to the doctor, or if she should have just let it go. Now, there’s nothing but silence.

Being shut out of a loved one’s life really hurts. You question everything you said or did. You feel rejected when all you wanted to do was to help. What do you do now?

There’s no one right answer. Every family is different.

Suggestions for getting past the hurt: 

  • Give it some time–many people come around after their hurt and anger has subsided.
  • After a cooling off period, act like nothing has happened.
  • Try reasoning with them and assure them that avoiding the matter only makes it worse–and it might be a medication interaction or something else, but it’s best to know and be proactive.
  • Pull the “big guns” and insist the two of you go to the doctor–some people respond to a firm hand.
  • Try a bribe–is there something they’ve been wanting to do? For you to take them to see their sister, or take them to play the slots? Use whatever helps them safe face.
  • Send gifts and cards and lure them back. Be the bigger one and realize that you’re their lifeline and they need you right now–and if they want to “feel”  or “look” in charge, then let them.
  • Get someone else who’s on their good side to take them. They may not want to give into you, but they may go with their sister or best friend.
  • Leapfrog over a diagnosis and start dealing with the day-to-day concerns and issues you can do something about.

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In the meantime, keep a journal. Make a note of any excuse, lie, avoidance, any times of confusion or bizarre findings such as the keys in the freezer, when they got lost coming home from the corner bank, or when they mentioned visiting a long deceased relative. As a caregiver you need to know what you’re dealing with and how often it’s happening.

Realize that a diagnosis isn’t going to do much–not in practical ways.

There’s no cure for dementia or Alzheimer’s and that the meds only work during the early phases of the disease and the medications only work on about half the people taking it, only slows the progression of the disease and typically only helps for about a year. But if your loved one is experiencing paranoia, anger issues, or anxiety, then ask about medications that can help these very real and very frustrating conditions.

If you suspect your loved one has memory loss then they probably do. so start working on practical aides (notes around the house, home monitoring, safety precautions such as a medical alert bracelet, and home help or live-in assistance, just to name a few).

Alzheimer’s and dementia certainly has its challenges, especially emotional ones. As the caregiver you have to be the bigger person. You have to do what’s right and not think about your feelings. Step over the hurt and find a way to reconnect.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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