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Posts Tagged ‘trust’

It doesn’t matter your cultural or religious background–it doesn’t matter if you’re wealthy or just barely getting by, there are three concerns at the end of life most people share.

They’re heard by chaplains, hospice workers and volunteers, and by family members who gather around those they love and try to make the last weeks, days, and hours of a person’s life as comfortable and as meaningful as possible.

 

Here are the three biggest concerns at the end of life:

  • I don’t want to be a burden
  • I don’t want to be in pain
  • I don’t want to lose control over what’s done to me

I don’t want to be a burden.

As a speaker/facilitator in the field of caregiving, I hear this concern all the time–and it starts long before the end of life.

In fact, I heard it from my 25 year-old daughter. She said she’d rather go into a care facility when she’s older because she doesn’t want to be a burden. It’s a sad reflection on society to think that growing older or needing help to get around is equated with being a burden. (I didn’t teach her this, by the way :))

There’s a lot not being said here:

I don’t want to be dependent. I don’t want to be vulnerable.  I don’t like others telling me what to do. I don’t want to be in the way. I don’t want people to resent caring for me. I’ve dealt with the elderly and infirmed and I don’t want someone to have to do, to sacrifice what I did. I’m scared. I

But what if you’re not a burden?

What if caring for you is viewed as a privilege?

What if you plan enough ahead of time and arrange for the added/needed help so that family members do less physical work and can simply “be” with you–enjoy your company?

What if you do all that you can do now–health wise–to be strong and mobile and live longer in good health? (there are no guarantees on that one).

What if you have something valuable to offer–even in your last years and months?

What if even your dying is considered sacred and something to treasure?  (even if it is hard)

What if, by allowing us to witness your end of life, we learn how to handle our own?

Who else will teach us?

I don’t want to be in pain.

No one does. Certain diseases cause more pain than others.

I can’t promise you that you won’t be in pain.

I can’t promise you that the end will come quick or be sweet–or even meaningful in the sense that sometimes we romanticize certain events and imagine them in a glowing, fuzzy cinematic light with all of our loved ones gathered and all getting along and tears and smiles and kisses and we can be coherent and see them all and hold this wonderful moment for all eternity…and it isn’t always like that.

I can tell you that hospice in particular will do everything they can to keep you pain free.

Palliative care is better than ever–there are all over salves that numb you, take away the aches, meds to reduce fever and chills–but many of these medicines will gork you out. You may sleep a lot. You may not be fully aware of time or of your loved ones coming and going. You might be pain free, but there might be a trade off.

All I can say is that by knowing this now, you can come to some level of acceptance. That’s all I can offer you–or me. I can’t say how I’m going to go–whether it will be many years from now or any day.

I can’t say whether the end of my life will be peaceful or tragic. I just have to trust–and do all I can to attract peace.

But I do know that whatever I believe about the hereafter, eternity, heaven…it will be that I will not be in pain. I will be in peace. I will not carry the pains, hurts, and sorrows of this world onto the next. And that brings me comfort.

I don’t want to lose control over what’s done to me.

Isn’t it amazing that one of the last questions/concerns we have before we leave this earth is about trust?

This teaches me one thing–I better get to dealing with my trust issues now.

Trust is the underlying factor that determines the success of any relationship–marriage, friendships, communities–it all boils down to, “Can I trust you?”

The answer isn’t “Yes, I can,” or “No, I can’t.”

Trust isn’t about finding people who won’t ever let you down.

Trust is knowing they will–in some way or another–and being okay with that.

Loving them any way. Trusting any way.

Choosing and then living in trust. Not trust in others. Perhaps it’s trust in yourself.

Trust that you’ll be okay. Trust that you don’t always have to be in control.

It’s also about trust in something bigger than you–in God, faith, the universe, the good–whatever you choose to call it. Trusting that goodness will come your way. Trusting that the universe is out to help you.

In the end, we all know that death will come. Perhaps there will be pain. Perhaps I won’t be able to say when it will happen, where I’ll be, who will be around me, what care I will or won’t get. And that somehow I can still believe that it will be all be okay.

 

But there is one more lesson here…

There is a lot you can say about the end of your life–but you better say it now. Talk to your loved ones. Write your ethical will. Fill out that living will. Say what it is you want. Appoint that guardian or family member to speak for you when or if you can’t.

Say all the I love you’s now. Go on those dream trips. Make memories. Laugh, cry, make love, sing, dance.

You want to not be a burden?

Start now. Invest in your relationships. Call your loved ones and listen to their day to day problems. Spoil them with your time. Go for walks and hold hands. Tell them how very proud you are of them, of the kind, good people they’ve become–then they won’t think you’re a burden.

You want not to be in pain?

Don’t dwell on pain now–physical or emotional. Live “pain-free” by practicing forgiveness, letting go and laying old issues down. Pain thrives off tenseness, tightness, and focus. Pain therapists use many techniques to help their clients manage pain–laughter therapy, engaging the mind on something bigger, more interesting, acupuncture, yoga…by letting go of pain today, we don’t attract it tomorrow.

You want to not be hung up on control?

Start trusting today. Take a risk. Fail. Laugh it off and try again. When you feel like a knotted fist inside your gut, recognize it and choose to trust. Give someone a chance. Give them a second chance. Give yourself a chance. The person we least trust is ourselves. We mistrust our own goodness. We are our own worst critiques, our own biggest doubters. Start with small affirmations–say them out loud in the car or in front of the mirror:

“I trust my own good heart.”

The biggest concerns of life are no surprise–they’re our biggest concerns every day–when you come to think about it. Every day, we’re given a chance to face our fears–to see our own good–and the goodness around us.

If you’re a caregiver, and you’re with a loved one who is coming toward the end, reassure them–let them know repeatedly that they are loved, that you will do all they can to make sure they’re not in pain, that you will honor their wishes, you will be there–steadfast. They will not be alone. Each time you say this to someone else, you say it to yourself.

I know as a caregiver this time is scary.

You don’t know how. Perhaps this is the first time you’ve faced death in an intimate way–with a family member this close. I was just like you–my dad died in hospital–and I was facing the death of my mother in my own home. I worried if I’d be okay–if I could handle it–emotionally.

IYou will find your strength and resolve.

You will keep your loved one safe–and honor their life and their death.

You will give them the dignity they deserve.

Even though you may feel like running, you will be brave. You will be there for your loved one–and it will change how you perceive life–and death.

~Carol D. O’Dell

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

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Do you feel like running away?

You may have restless caregiver syndrome.

What’s that, you ask?

I may have made up the term, but I certainly experienced it firsthand.

Have you seen the commercials for restless leg syndrome?

They’re kind of quirky, and I’m not saying that it’s not a serious disorder, but it’s presented in a way that makes my own legs twitch! Nothing like an idea planted in your brain.

But that’s exactly what I felt like some days as I cared for my mom who had Alzheimer’s and Parkinson’s. I just couldn’t sit still. I wanted to run, to stay busy, to go, go, go.

I guess I was scared.

I was scared my mother would consume me.

I was scared that this was going to be my life from now on, and that by accepting it now, I was accepting it forever.

I was scared that if I sat still, thought too long, I’d realize it was a mistake, that this wasn’t what I wanted to do. I was scared I’d grow old and not have the life, the adventures, the memories and journeys I’d always dreamed of.

Restless caregiver syndrome happens off and on in the caregiving process. It occurs when you’ve given up your old life in order to care for your loved one. It’s also compounded by a sandwich generation lifestyle where everyone wants something from you all the time. And, if you’re female, you may be dealing with the oh so lovely change of life–men-o-pause. And, on top of that, you’re probably a boomer and thinking about your own future, i.e. finances, career, retirement, aging, etc.

You became a caregiver because your loved one needed you. You did it believing it was the right thing to do. You told yourself there were some benefits—getting out of a dead-end job, able to spend more time at home, maybe take better care of your own health, or begin that second career you’ve always dreamed of.

Only…

Caregiving isn’t quite what you’d thought it’d be. You’re bored. Stressed. Unmotivated. Overwhelmed by all the stuff there is to do, and how little you feel you get done. You have time (sometimes) but no focus, no initiative.

Your loved one certainly needs your assistance, but you didn’t plan on becoming someone’s personal butler, driver, maid, and cook. They also seem to enjoy your being at your beck and call—or they’re miserable, fussy, or constantly apologizing. You didn’t think all this emotional baggage would come in tow.

You‘re consumed by caregiving even when you’re not caregiving.

You’re fumbling in your own life. Directionless. How long can this go on? The years stretch out in front of you like a vast desert. Some days, sure, you feel on top of your game, but there’s also an underlying sense of sadness. You know where this is going to end.

A restlessness has built up inside you. You gotta get out. You can’t sit in that living room chair one more minute. You can’t scramble one more egg. But you’re stuck.

How to Combat Restless Caregiver Syndrome:

·       Play a game with yourself: if you were under house arrest, but you weren’t caregiving, what would you do? What resources do you have right at home?

·       If someone gave you three years to reinvent yourself, what would you do? Learn a new language? Take some classes and become a computer whiz? Sell your handmade jewelry online?

·       Create a structure you can live with. You call the shots. You decide when dinner is, you decide the med routine. If you want your loved one to go to bed at 7pm so you can have the night to yourself, then arrange it. Create boundaries you can honor that make your life easier.

·       Start planning for time off. Check into respite care; hire a CNA for $20.00 an hour. It may take you a while to get all this in order, but do your homework, find someone you feel your loved one is safe with, and start taking regular breaks.

·       Don’t use your take out for anything that you aren’t dying to do. Go for a mountain hike, antique shopping, to the local pub to watch a football game—anything that will make you feel as if you’ve truly taken a break. No errands. No combining. Time off is time for you.

·       Create a room—your bedroom, a spare office, part of the garage that is just for you. Make it your haven. Put a cooler in there with drinks, stock a mini-bar, and collect magazines only you like— and go there — alone. Your family and loved ones will respect what you respect—and they will run rough-shod over you if you let them.

·       Call a friend and vent for 10 minutes. Set the timer and then just go for it. After that, tell your friend to forbid you from any further complaining for the day. Complaining and whining and griping are good, but not when it’s a toilet bowl that never flushes. I mean that visual to be disgusting so that you’d STOP. Incessant thinking is unhealthy.

·       Use your fidgetiness and wear yourself out. Do something physical—put all your anger and edginess into it. Clean out the frig, scrub the bathroom tiles and get out the gunk around the shower door. Use your restlessness.

·       Find a safety valve. If you’re really about to blow your top, how can you get away? Do you have an emergency person? Can you take them to adult day care? Are they okay for a couple of hours alone if you really couldn’t take it anymore? Have a plan B—because sometimes, it all gets to be too much.

·       If you have siblings and you’ve been carrying this burden alone—then make the call and insist they help out in some way. Even if it’s paying for home help, then that’s a help. Don’t let resentment and exhaustion build up. Tell them how hard it is. Insist you get a weekend off every few months—and a week or two of vacation time a year. You only get what you ask for, so ask!

·       Don’t be a perfectionist and think everything has to be exactly right and exactly your way. If you do, you’ll be a slave to the mundane. Choose a few things to do well, and a few things to do lousy. Nobody ever died because the forks were sticking up in the dishwasher.

·       If your loved one is being ugly, then get in the car and leave. Even driving around the block helps. I used to walk out back, down the embankment out at the river—and scream. So what if the neighbors heard! Better they hear me scream than gunshotsJ They’re adults and can be alone for 5 minutes and they need to be taught that you will not be mistreated. Make that point clear.

You get what you allow.

Sometimes, you’re just going to feel restless as caregiver. You’re going to want to run, to scream, to change your name to Flo and become a waitress on some seaside pier restaurant (my fantasy, not yours necessarily).

When you feel like running, then run. Get out as much as you can. Even if it’s just out the front door and around the block. Hide, sneak out, stay in bed an extra half hour, stand in your shower until the water turns cold. Do what your gut is telling you to do–at least in some small way. If you let off the pressure valve, then maybe, maybe the whole thing won’t blow.

Trust yourself. Trust your journey and this process.

Later, there will come a time when you might not be able to “run,” so do it now. Trust that you will come back.

After your loved one passes, you’ll go through this all over again—there’ll be days when you just can’t be at home. It’s a part of the grieving process. There’ll be other days, or weeks that you can’t make yourself leave. Home feels safe.

Again, trust yourself. Trust that your body, your soul, and your heart knows how to heal itself.

~Carol D. O’Dell

Family Advisor at Caring.com

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon

www.mothering-mother.com

www.opentohope.com

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