Feeds:
Posts
Comments

Archive for the ‘caregiver stress’ Category

I have several friends who have recently loss their spouses or a parent, and at the end of an oftentimes long, exhausting, and heartbreaking journey, they find themselves stepping into the role of a caregiver once again. Most of us have more than one parent. We have in-laws. We have other family members who a struggling with everything from cancer to mental illness–and disease and the aging process doesn’t care whether you feel like caregiving. It doesn’t take into account that you just spent the last two years in and out of hospitals, rehab, physical therapy and all the less than fun but necessary activities that engulf your life. Caregiving can show up in your life (and probably will) at the most inopportune time.

What do you do?
Do you say no to a loved one who may have little, if any, options? Do you (can you) say, “no thanks,” I’m still grieving/need to take care of my own health/financial needs right now/I’m an completely bone dry and have nothing to give???

No. You probably don’t say, “Caregiving again? I’ll pass.”
Before you jump into caregiving again headfirst, I ask you to take a deep breath.
Now, plan.
You’ve learned a thing or two.
You know all too well just how sucked in you’re about to be.
You know all too well the wild world of prescription screw-ups, back-to-back doctor visits, 2am ER stints, botched lab results, infuriating insurance issues, and the dreaded orange vinyl chair hospital nights that somehow lead to hospital weeks.
So use what you know.
You might need to and want to say yes, but do you have to say yes to everything?
Do you have to move in/or they move in with you?
Are you prone to ignoring your own health/financial/relationship needs?
Are you afraid of what’s going to happen to you and your life if caregiving takes yet two, three more years of your life?

Don’t get me wrong–I am a 100% advocate of caring for our loved ones.
I firmly believe that family (for the most part–there are always exceptions) should care for family and then that care ripples out from there–church, friends, extended family members, hired or volunteer care) as needed. I ache at the thought of family members who simply can’t be bothered to miss a day of work, or can’t give up a weekend to make sure that their loved one’s legitimate needs are met. As a caregiver inspirational blogger and speaker I’ve heard lots of folks who have sisters/brothers adult children and others who refuse to contribute to family care, but I also see folks who give too much, who never say no, not even to a demanding, dramatic person who expects to be the center of everyone’s universe.

What I’m speaking of is to glean from the wisdom that comes by experience.
Reflect back on your previous caregiving time.
When did you give too much?
When did you ignore your own health issues, relationship or career issues?
Does that continue to effect your life?
Do you have a plan for meeting your own needs while caring for others?
Are there things/people you lost you can’t get back?
Did you care-give at times when it wasn’t truly needed to the extent that you gave?
Are you now able to speak up when you need to?
Can you step back and look at the whole picture–and count “you” into the equation?
Can you say no when you need to and not fall into a quagmire of guilt?

Honestly, being a caregiver the second time around can be a good thing.
How, you ask?
You’re stronger.
You’re not flung here and there by drama and trauma.
You don’t think doctors and medical personnel are demi-gods that can never be wrong and should never be confronted or disagreed with.
You know that you have to step back when you feel so drained that resentment, anger, and exhaustion threaten to strip you of all reason and ability to care for anyone, particularly, yourself.

Caregiving the second time comes with the quiet realization that (in some situations) your loved one will die.
It’s tough to say that word, die, but that’s what we do. All of us. Someday.
So, caregiving…again, means that you’re not so scared.
You make this time mean something.
You can’t keep them alive, you know that this time, but you can make life sweet.
You can provide companionship.
You can be their advocate, their voice.
You can honor their wishes.
You can make sure they get the pain medications they need.
You can be present when it’s time.

I wish, for you, that if you’re just getting out of a caregiving situation, that you would have a break. That you’d get to attend to your own life for a little while–and even have some fun–but we don’t always get to decide when caregiving will circle back around. But I do know that you have changed–so trust that you will know what to do.

Advertisements

Read Full Post »

We don’t tend to talk about our love lives and caregiving in the same conversation. Why? Does sex go out the “caregiving window?” Do you stop desiring your partner when you enter into the caregiving role? Many do. It’s not that we don’t still love each other. We may recommit our hearts  and lives even more when our loved one needs us–but needing and wanting are two different animals and you don’t necessarily have to stop being a sexual creature just because you’ve aged, have a disease, or find yourself caring for someone.

I recently watched this AMAZING TED video titled, “The Secret to Desire in a Long-Term Relationship.” presented by Ms. Peres bas traveled the world studying erotic intelligence. Ms. Perel talks about the dilemma modern couples face–marrying for love (as opposed to a mere societal contract) and living a very long time together–all while supposedly enjoying security as well as hot sex.

There is no caretaking in desire. Wanting is desire. Neediness is not attractive. Ms. Perel reminds us that anything that reminds us of parenting i.e. (taking care of someone) is a turn-off, as it should be. We need our parents. We want (or desire) our mates.

What’s a caregiver to do?

Nothing saps your desire as much as exhaustion and worry, sleep deprivation, a counter lined with pills, a hospital bed in the middle of the living room, care assistants traipsing in and our of our houses, or a long stint in rehab. We think that sex has to take the back seat when someone is sick, aging, or has entered into the dying process.

But it’s part of who we are. Sex is mystical. It’s a binding agent in our relationships. It’s a way to express not only joy and playfulness, but it’s also a healing force–physically and emotionally.

I faced this issue (sort of) while caring for my mother who was living with us (hubby, kids, and me). She needed 24/7 care for Parkinson’s, heart disease and dementia. She was demanding (to say the least), fearful, as well as in need of real hands-on care. Not exactly the ingredients needed to get in the  mood. I found myself compartmentalizing who I was at any given moment. I’d slip out of caregiving mode and into mothering mode when one of my children needed me to help them study for a big test, or to take photos of them before they went on a special date. I’d slip off that role and step into being my husband’s lover as I slid the bathroom door shut, turned on some sultry music and stepped into the shower for a few minutes of “alone time.” Twenty minutes later and I’m back in the kitchen, dressed, and cutting my mother’s pills up for the week.

I had to learn how to shut down one part of me and slip on another.

What made that challenging was stepping out of the lingering emotions–resentment (can’t I just have 30 minutes to myself?) guilt (I know she needs me, but my girls need me, too), worry (I’m so afraid they’re going to put her back in the hospital–and they’re going to push for exploratory surgery and not only will that not fix anything, but there goes my life for how many weeks!)

How do you still tap into your love life even while caregiving?

Here’s a few things I learned:

  • Stop trying to be everything to everybody. It’s impossible. There will be gaping holes I can’t ever fill.
  • Decide not to always be available. Shut the door. Go to my room. Shut the door. Lock it if I have to.
  • Time for me–first. I learned to not bolt out of the bedroom in the morning. If my family made it through the night (or even part of the night, in my mom’s case), then they could go 30 more minutes without me. Having time to shower, dress, journal or stretch before I hit the caregiving concrete really helped me separate them–from me.
  • Don’t get lazy. Kiss good morning or good bye. Say thank you. Make the effort to smile. Learn to be a good conversationalist. Sit next to each other on the couch instead your own recliners. Spritz on his favorite perfume–not because you’re  going somewhere–just because he likes it.
  • Create sexy moments–and a moment may be all there is. Duck into the pantry for a steamy kiss, grab his butt while he’s in the fridge, flirt by text, tousle his hair at the breakfast table. You may not have the time or energy to do any more than that–but “that” can be really good.
  • Slip in and out of roles–as I mentioned above, turn off–and on–who you are. Do this for yourself. Learn to turn OFF caregiving. Go back, just for a few moments, just to be their daughter, or wife.
  • Be playful. Desire is loose. It thrives on spontaneity. So if you feel yourself always clenching, always on alert, stop. Do some stretches. Visualize your favorite memories–of a perfect spot on a beach, of a time when you two felt the magic. Put on some music. Smile, even if you have to take it. Recognize when you’re being too serious for your own good–and figure out how to get back to some of that joy and ease.
  • Ask for what you need. Ask him to rub your shoulders. Ask if he’d go for a five minute walk with you. Ask if he’d hold you when you’re feeling sad or vulnerable. Use your words and believe that you deserve all good things.
  • Whether you have someone in your life right now or not–make the time and space to nurture your own sensuality.  Figure out what that means to you, but bottom line is  to make time for you, make space for just you, give yourself permission to give yourself pleasure (I’ll leave that up for interpretation) whether that’s sexual in nature or involves a few minutes alone with a Dove chocolate bar while listening to Andre Bochelli serenade you in the laundry room.

How does nurturing your love life make you a better caregiver?

It fills up the well of your soul.

It gets us in touch with our physical and soul-full selves.

It infuses us for energy, joy, and even relaxation.

It reminds us we are indeed, still alive.

I hope you’ll be brave enough to enter into this conversation–with yourself first, with your partner, and I’d love it if you’d leave a comment!

It’s time we started talking about what we long for…and a warm, fun, play-filled, healing, tender or rompous (yes, I made up that word) love life is just the beginning…

Read Full Post »

“Why haven’t you called?” “I want to be independent and live by myself.” “You’ll miss me when I’m gone.” The push-pull of caregiving can send you into an emotional whiplash. Yet, it’s what we do–as family. We send mix messages. Caregivers feel guilty that they’re not doing enough, and then get whapped with “Back off, I don’t want you all up in my business!” What’s a caregiver to do?

It’s tough, but the healthiest thing a caregiver can do is to stay present in their own lives and refuse to get tangled in the emotional web of someone else’s volatile unpredictability. What would you do for your loved one if you could step away from the guilt, resentment, worry, and fear?

Some of us are afraid we’d just walk away. Some of us can’t even begin to imagine a life without these negative feelings driving us. Most of us forget to start and end our day with a sense of calm presence realizing that the only person we can truly give anything to–is ourselves. Until our own cups are full we have nothing true and good to give.

We can’t drive a car without gas. It simply can’t be done (not counting electric, of course, and even they need charging regularly). When our tanks are empty we’re stuck. In the end, we sputter, panic, and then find ourselves stranded on the side of the road. That’s what it’s like when we continue to give and give without adequate sleep, without renewing our joy, without taking care of our own health. We sputter just before we burn out.

Most of us enter adulthood with a complete set of emotional baggage. Our parents got us to do what they wanted mostly by fear tactics: stay in bed or the boogie monster will get you, make good grades or you’ll be grounded, don’t get pregnant or you’ll be disgraced…from little things to big we learned to live in fear. Fear of failing, fear of displeasing those we love. It may have worked (temporarily), but there’s a price to pay for living in that much fear. We either cower or rebel. Or…we learn to stand up for ourselves.

The challenge is to stand up and say loud and clear, “Wait a minute…wait just one darn minute. I’m tired of being afraid all the time. I’m tired of trying to please everybody else, even when it’s not good for me.”

And that may be the irony that comes with caregiving. It gives us yet one more chance to grow up. To really grow up. We no longer need to cower or rebel. We can speak in love, and stand in our own truth. We choose to no longer be controlled by fear. We can love because we choose to. We can give, and at times, even sacrifice our time, money, and energy for the good of someone else, but it’s with clarity and choice, and often short-term that we step into that place of sacrificial love.

We learn to say no. We learn to stay present in our own lives first. We learn to allow someone else to feel anything they want to feel without dragging us into their vortex.

It’s one of the last and greatest gifts our parents/loved ones can give us. The opportunity to revisit old issues with new eyes.

Read Full Post »

Sometimes there’s no way around it. You have to keep going. Your loved one needs you and maybe you’re the only one or the main one. You may spend weeks beside their hospital bed or have to drive or fly back and forth if you’re a long distance caregiver. You’re beyond exhaustion and see no way out.  No wonder it leads to caregiver burnout.

That’s where I am right now. Run down, sore throat, desperately needing to listen to what my body is screaming at me, “I need a &#_%&ing break!”

I hope to share a few things I’ve learned that you might be able to use in order to get your through a rough time–and I plan on taking my own advice!

The Mind-Body Connection:

  • Pace yourself. Is this as bad as it can get? If not, and I hate to say this, prepare for more. Realize that you have to have some reserve for whatever is up ahead.
  • Take off your cape. Your super-caregiver cape, that is. Admit you can’t do it all. Go to bed. Call it a day. Trust that your loved one will be okay for a few hours while you get the rest you so desperately need.
  • Let good enough be good enough. When the circuit breakers start popping (that’s what I call it when things start falling apart) then it ‘s time to let a few things go. Don’t change the sheets in the middle of the night, just put a clean one under them, switch to paper plates and cups and let the rest of the dishes pile up for a few days–it’s not the end of the world. Nap instead of clean. Do a quick baby towelette wipe instead of a bath. Let some things slide.
  • Ask your body to go just a little more. Ask it out loud. If you really have to get through a few more days, then ask. Ask it to go without sleep, without healthy nourishment, without down time–but then promise you’ll make up for it. Promise–and be specific–that rest is indeed coming.
  • Thank your body for all it’s done. Treat it well when you can. Give it some crisp fresh veggies, a healthy smoothie,  a second nap. Rub your own aching muscles with some essential oils and thank those corn and bunion tired old feet for all they do for you.
  • Ask your body and your spirit to rebound after a traumatic time. If you’ve really been through it lately, ask gently for your body to regenerate itself. That’s what it’s made to do–to regenerate, to create new cells, new blood, and start over. But who wants to do all that if you’re never appreciated, if you’re not asked to. If it’s just assumed that you will? Ask.
  • Try what I call my “three-day cure.” That’s when I go nowhere for three whole days. I lay low. Do only what feels right–and sometimes that’s being couch bound for longer than I expected, but when I do this I find that eventually joy and energy will return.

I hope these ideas help.

Now, I’m asking my body to go once again, but I’m promising that after this one last thing, we get to rest. I heard that instead of blaming everything and everybody else that we have to realize that we do more damage to our own souls when we don’t keep our word, when we let ourselves down, than when anybody else does. I truly believe that. It’s time to honor my own word. How can I ever care for anyone else if that care, that filling, that nurturing doesn’t start with me?

It’s up to me to keep my promise.

Read Full Post »

YES!

Sleep and laughter are perhaps the most healing gifts the good Lord gave us–and it’s the first to go when caregiver stress mounts an assault on your life. You have to fight to protect these two gifts. You have to buy a lock for your bedroom door, take out the TV, turn off your cell phone and not take it into the bedroom with you, refuse to fall for the drama and schemes that your loved ones pull to get you out of bed. It’s not going to be easy….they’re tricksy!

My mother treated the night like we were at the Indy 500. The later it got, the more riled up she got! She’d turn on the lights, bang the cabinet doors, call my name and knock on the door. I had to show her that I wasn’t going to cater to her 24/7. I wish I could tell you that this worked. My mom had Alzheimer’s and sundowners and over time, I had no choice but to get up and deal with the chaos. I had to practically strip her room bare (she seemed to gain super-human strength in the middle of the night and could overturn her nightstand, rip all of her clothes off of hangers and empty her drawers into a pile in the middle of the floor).

If you’re reading this and your loved one isn’t doing these things (yet) this probably scares you. All I can say is that Alzheimer’s takes you and your loved one to some pretty bizarre places. You’ll experience things you never even thought of! And yes, at times, it’s scary.

But at some point you stop being scared. They’re still your mama, your daddy. And caregiving makes you brave. It toughens you up. You face your monsters and you realize that you either stand up and take control or realize you’ll be bullied from here on out. So you deal. You get strong. You love and you hold your temper even when provoked and even when you don’t get any kindness back. You make tough decisions. You do what’s best.

And you laugh. You laugh so you won’t cry. You laugh and cry all in the same breath. You realize that life is precious, and sweetness still abounds, and that the crazy stuff might just be the good stuff. You laugh because none of it makes sense. You laugh so you can let go, so you can feel, so you can hope again.

So right now, look up a joke, or call the funniest person you know and tell them you need cheering up. Vent, share your crazy-awful, silly, you-would-never-believe-what-mama/daddy/husband/partner just said or did….You laugh because it’s the only antidote to grief or sorrow there is.

Laughter and sleep–ain’t nothin’ better…

Take both–or either–any way and any time you can get them.

~Carol O’Dell

Author, Mothering Mother, available on Amazon 

Read Full Post »

“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.

Read Full Post »

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. 

 

 

Read Full Post »

Older Posts »