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Posts Tagged ‘caregiving’

Give a Caregiver a Hug

Monday, April 14th, 2014

Adult caregiving hijacks your life. None of us agree to do it because it sounds like fun. But when a loved one needs it, we step up.  Ongoing, it’s a daunting job; at times, it’s downright harrowing.  Once you are in the middle of it, reality warps.

An article published by the American Medical Association reported, “One of society’s greatest assets is the many family members who provide care to ill or disabled relatives.”  One study estimated there were over 15 million American adults serving as unpaid caregivers—in 1998.  And yet, the needs of those doing it remain unnoticed.

Last week in a single four-hour stretch, I spoke with three different women friends, each up to their ears in challenges related to caregiving for aging loved ones.  Each had taken on the caregiving role in addition to the ample responsibilities they still held as professionals.

The first was weathering a major health scare with the man in her life. She had taken him in when he got sick and then became his advocate through all the tests and procedures.  She was struggling to find the right boundaries in what she did for him.

The second needed to find a way to convince her parents to let the housekeepers, who were provided as part of their assisted living rent, into the apartment to clean.  Her folks said there was no need.  But she could smell their unit when she got off the elevator.  She’d been cleaning every time she visited and worrying in the interim that they might get evicted.

The third has been spending her own money for a caregiver for her husband, so she can continue to work as a college professor.  He has a non-Alzheimer’s version of dementia.  She has power of attorney and pays his bills.   His funds could easily cover the cost of the caregiver, but she thought she had to pay for it herself because he would have refused to let her spend money for that if he could still think.  Reality tilts in odd ways when you’ve been a caregiver for long enough.

It’s easy to think it would be different if you had to do it.  That you would draw clear boundaries and insist things be done your way.  But that’s the cruelest part of the caregiver role.  When it gets intense, you don’t realize the boundaries are out of whack or that what you’re doing doesn’t make good sense in the broader scheme.

It’s a lot like the classic experiment with frogs.  They did a study where researchers put a frog in hot water.  It jumped out to safety immediately.  But if the water was cool when the frog was put in and was heated gradually, the frog kept swimming until the water was so hot the frog died.

We do the frog-in-slowly-warmed-water thing as caregivers.  As the disease progresses beyond what we can really handle, we just keep going.  Our own lives evaporate.  We think we are doing fine when we’re not.

Three years ago, I became caregiver to my boyfriend when he was diagnosed with non-Hodgkin’s lymphoma.  Every day there was a new problem, and always one with which I had zero experience.  With each new side effect, I had to figure out something new that was needed to keep him safe and, hopefully, comfortable.  The volume of work was massive, and the possibility I might hurt him by not doing the right thing was terrifying.  Yet when friends asked me how I was doing, I’d say “Fine.”  I wasn’t being a stoic angel of mercy.  I was too worn out emotionally to find more honest words.

In an ideal world, unpaid caregivers would have mandatory breaks.  No one’s going to legislate that.  So it’s up to the rest of us to make a difference.  If you know someone who’s caregiving, do what you can to provide support.  A hug is a good start.  But then offer to do something specific.

I am all too guilty of saying “Call if you need anything” and leaving it at that.  For a long-term caregiver, there’s not enough mental juice available to convert those words to something useful.  “Would you like me to clean the kitchen?”  Or “Why don’t I sit with Aunt Irma for the afternoon so you can get away?” works better.

Caregiving is hard duty.  If we all remember this and offer support in all the ways we can, we can keep each other from ending up in need of care ourselves because we carried too big a load alone for too long.


Bless the Caregivers

Friday, September 6th, 2013

The next time you’re stuck in traffic, say a little prayer for caregivers.  You probably know some personally, but even if you don’t, every one of them needs all the help they can get.  Caregiving is an impossible role.

When children are first born, taking care of them is pretty daunting.  You don’t know what they need–or want.  You don’t know how to do whatever it is that they are wailing for.  You are sleep deprived and shackled to someone else’s needs all day every day.

This is what it’s like to be a caregiver.  Except babies grow up.  When you are caring for someone as they advance into feebleness, usually because of some physical condition, you don’t have a timeline that reassures you things are going to get better.  To the contrary, in typical caregiving situations, things are growing progressively worse.

Babies will cuddle and coo to make you feel all the strain is worthwhile.  That’s not what happens with end-of-life caregiving.  Often, instead of gratitude, a caregiver gets sworn at and cursed out because of the nature of the decline.

Even in the simpler cases, where someone you love has a grave illness and you’ve stepped in to help on a temporary basis, you have no idea how long it’s going to take for that person to get well enough to take care of themselves.  And while you are doing that noble work, your own life is quite literally hijacked.  Plans you made get turned on end.  Projects you had planned to work on gather cobwebs and dust.  You cook what the patient needs not what keeps you healthy.  Even going out for a walk is not feasible.

Instead your focus becomes someone else’s needs.  And that someone, who used to care for you in many cases, is so far into the difficulty that they don’t even know what they are asking of you.  Often, a loved one does this work without relief.  It seems so trivial, this loss of identity–at least if you’re not the one experiencing.  But being sucked into someone else’s illness and decline drains your own energy and joy in life with alarming speed.

Right now I can name five friends currently caught in this kind of caregiving.  Two have husbands with Lewy Body Dementia (a form of decline that puts Alzheimers to shame in terms of the amount of “on call” attention the person demands).  One has a husband with a mystery malady that’s caused him to lose 75 pounds–and this man was not overweight to begin with.  One is caring for her mother as she deals with terminal cancer–and the mother/daughter bond has not been that loving one we all wish we had.  And one is dealing with a stroke-incapacitated alcoholic husband with dementia who could just as easily start the house on fire as take a nap.

This kind of caregiving takes an incredible toll.  You don’t know what’s going to happen next but whatever it is will not be fun.  Every new turn in the patient’s health creates a new sense of being inadequate.  So often you have no idea what to do–but you know you have to do something.

You end up on a first name basis with nurses and pharmacists, social workers, and therapists of all sorts.  You’ve memorized what is and isn’t covered under current health care arrangements.  And still you are caught by surprise.  Again.  And again.  And just when you think you are done for the day and are starting to unwind from the tightness of what’s being expected of you, all hell breaks lose and you’re in the emergency room until three in the morning.

Caregiving is hero’s work.  They need more support than they get from the community.  A lot more.  So at a minimum,  if you a lucky enough to be out and about all by yourself, doing what you want and having a lovely day, say a prayer for the caregivers.  Even if you are having a crappy day and are trying to please the boss from hell, put in a good word for those doing the caregiving work.  There is none harder.

They give so much and no one even notices.


Living a Hijacked Life

Wednesday, April 24th, 2013

Unless you are a complete loner, at some point, your life is going to be hijacked. It may come gradually, like when you learn you are going to be a parent. It may come with great celebration, like when your daughter gets engaged and you become enmeshed in wedding planning. It may come suddenly, like when someone you love has a medical emergency.

I am submerged in the third of the above-mentioned scenarios.  My boyfriend fell playing tennis last week and broke his wrist in “several” places.  He will have surgery later this week, after which he will be in a cast for three months, maybe more.  For the foreseeable future, he will need me to drive him to his appointments, tie his shoes, and yes, cut his meat.

And that means, of course, that the things I was going to do in my own life are going to get at least postponed and more often erased.  It also means that when his needs veer in an unanticipated direction, what  I’ve committed to for myself gets cancelled on short notice.  I’ve been down this road with this man before. It really does feel like a hijacking.

I was raised in a family that values helping.  I do like to make a positive difference in others’ lives.  But I will not pretend I’m delighted with this turn of events.  I’ve been riding shotgun on his cancer detour for the last two years.  Before that, there were other situations where he needed my help  because of health challenges.  Just how often am I supposed to let this guy’s problems take over my life?  Am I enabling a “drama queen” with all this helping?

He was not looking for this kind of attention when I met him, I am certain of that.  He still does all he can on his own and tries to help with chores even with one arm wrapped in fiberglass.  So no, I don’t think this is a situation that demands the tough love of walking away.  It’s life–at it’s most maddening.  My life.  And his life.  Intertwined as they should be when you are blessed to have in your life people you care about and spend a lot of time with.

When things happen to me more than once, I see them as lessons I didn’t learn well the first time.  This is one of those situations.  Maybe you can learn from me.  So what’s to learn (and do/no do) when your life gets hijacked?

  • Forego the martyr routine.  It’s highly over-rated.  Sure, you can’t do what you had wanted to do with your time.  But you still need to take care of yourself along with meeting the other person’s needs.  If you literally have no time to lavish on yourself, you can still maintain your posture and make an effort to breath deeply.  Maybe a 5-minute meditation or a 20-minute nap is feasible.  I do laps around the hospital when I end up waiting there.  Find the things you can do for yourself and do them.  You are the only person who can totally deny yourself what you need.  Don’t.
  • Expect whoever has stolen your life to do as much as he/she can for themselves. That gives them as much dignity and sense of worth as possible and you a breather.  It’s tempting to scurry around trying to make everything right for that person, but that doesn’t serve either of you as well.  Even with children, this is the case.  A newborn is helpless and pretty demanding.  But babies who have alone time (in an infant-safe place, of course) learn faster than those whose parents haul them around and entertain them every waking minute.
  • Find the balance points.  If you are doing all the giving in this context, look for receiving in other contexts.  Maybe you get to watch the TV show you want together instead of letting him have his preference.  Maybe what you have for dinner is your preference instead of his (or hers).  This feels “wrong” because so much of the focus is on the “sick person” but trying to balance things where you can does a lot to forestall resentment and burnout.

When a loved one hijacks your life, respect your own feelings about that.  Yes, you want to give the care that’s needed.  No, it’s not automatically what you want to do at a specific moment.  When it isn’t, feeling frustrated or just plain angry is normal.  Find safe ways to channel that away.  (I yell in the shower and also find moving dirt in the garden helps.)

And see it for the gift it is. Yes, your life has been hijacked.  That means someone trusts you enough to ask your help.  You are a good person.  But please, be good to yourself, too.