Coping Posts

Why Caregivers Want to Give Up

Why Caregivers Want to Give Up

Yesterday I presented a workshop on Family Caregivers for Seniors with Dementia. The participants were health care professionals, looking for a better understanding of the caregiver’s position and perspective.

I was impressed with their openness to understanding, their desire to find ways to support caregivers in their jobs, and to relieve the caregiver burden.

For some, the information I provided was new understanding. Some hadn’t considered, for instance, why an adult daughter visited her father just once a month at his nursing home. Perhaps, I suggested, he had molested her as a child. Her attention to his needs was actually going above and beyond.  Some didn’t grasp the difference between their 9 – 5 efforts to put supports in place, and the caregiver’s 24/7 responsibility. But they listened. They were attentive. I was encouraged!

This morning I came across a blog post,”How to Unplug from Caregiving.” A possible resource? On opening it I had to shake my head. In preparation to taking time away, these were the recommended steps.

  1. Recognize you deserve a break.
  2. Plan, plan, plan
  3. Make sure they have their medication.
  4. Stock up on staples.
  5. Prepare meals ahead of time.
  6. Discuss laundry.
  7. Get them an alarm.
  8. Don’t forget the outside.
  9. Make a list and check it as often as you need to.

The plan is, unfortunately, appropriate. But it sorrows me to know that many caregivers need to prepare to this degree so they can take a few days off and hope – not trust, but hope – they won’t return to a crisis.

The truth is, such preparation is often more than a caregiver can handle. Maintaining the status quo is the best they can do.

There have been great strides in recognizing family caregivers and the impact their contribution has on their lives, their families, their jobs, and society as a whole – both positive and negative. Yes, we’re on the right track, but we have a long ways to go.

Do you know a caregiver who could use a break? Maybe you could provide the care – for a few hours, or even a few days. What a gift that would be.

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I’m Not Needed

I’m Not Needed

Wanted, yes. Valued, definitely. But am I needed?

In 1999 I was busy. Active in my community, working, volunteering, and given the stress I often felt, integral to much of it.

Ah yes. Stress. How would I get it all done? Who was going to help? Couldn’t someone else step up for a change? If I didn’t manage the task, what a mess we’d have. My multiple commitments were at times heavy. At times I desired release. But who would do it if I didn’t?

Then the calendar turned. May 24, 1999. The phone call. Our daughter. In an accident. Catastrophic injury. Intensive Care. Life-long disability. Rehabilitation.

24321290_665ceba5be_nIn a heartbeat, I leapt off my Carousel-of-Busy-ness and was dragged into a Medical-House-of-Horror.

4107321232_fa168c6e39_nI couldn’t keep a leg in both places. After a few sad efforts, I dropped my commitments like discarded candy wrappers and immersed myself in what would become our family’s new normal.

Life eventually settled down. A day came when I went back and visited my land of Busy-ness. What ill effects had occurred when I made my unexpected exit, dropping responsibilities and commitments in my wake?

Ill effects? Not a lot. The committees and organizations were still happily humming along. People had filled the gaps I left, and with just a few ripples.

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I’m not sure if that was good or not.

It did impress me, though. We are not the centre of anything. We are valued parts, but not pivotal. God will always catch up any loose threads we leave accidentally, on purpose, or because he’s pulled us out. If something is in his plan, he’ll attend to it, with or without us.

For me, it was an object lesson in wearing the yoke with Jesus. If I can’t pull or carry the weight, he can, he will. I do not need to stress about anything!

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” Matthew 11:28-30

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Why God’s to Blame

Why God’s to Blame

God made the mess. Now I have to fix it!

A friend called me in tears. His son, just three years old, had pulled a hot pot of tea off the table, spilling the scalding liquid on his bare feet. Now, in order to prevent debilitating scars, dead tissue had to be removed daily – a frightening, painful experience for little Jake. Each day my friend held his son in his arms as staff in the burn unit debrided the wound. Each day this father subjected his little boy to a frightening, painful experience. Dad knew the life-long ramifications if the treatment wasn’t done.

“I would do anything to take his place,” this father sobbed. “What I don’t understand is that when each treatment is over, Jake snuggles even closer into my shoulder. He still trusts me, even after I’ve allowed him to be subjected to such pain.”15953607370_326beb5686_n

Debriding a little kid’s burns, pulling away that which could cripple the child for life, is the father’s job.

Trusting Daddy, even when he doesn’t understand, is the child’s job.

Children seem more willing to accept this than adults are.

The devil, the world, our natural sinful self try to break our trust in God through lies, temptation, and subtle coercion. We buy into the pretence that we deserve health, wealth, and happiness.

These lies lure us as a hunter lures a deer – tricking her into thinking this is someone who cares, who wants to give her what she desires.

Not so, God, though. No subtlety, no trickery from Him. He doesn’t mince words.

You will have trials and tribulation.

You will be rejected.

There will be pain.

It won’t be fair.

His ways are not our ways.

When it comes to the big things, the serious things, the life-altering things, like little Jake, we probably won’t be able to understand. We’ll simply have to trust.

Trials can be like a rider breaking a horse. The rider knows what he wants for the horse, what he can give the horse once the horse submits.

But the horse has no idea. Until he gives in, subjects his own will to this force that keeps challenging him, the horse can’t know the depth of relationship, care and provision that will come when he chooses to trust the master.

God doesn’t force himself on us the way a rider does with an unbroken horse. But he does make us aware.

Are you refusing to be broken? Being broken? Or are you riding into the sunset with your Master?

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The Real Reason Caregivers Burn Out

The Real Reason Caregivers Burn Out

It wasn’t that she didn’t want to care for Charles anymore. The simple fact was that she no longer could. Her mental state, her exhaustion, her ability to think and make decisions was so far gone that she was no longer an effective caregiver and advocate for her husband. If she killed herself, someone would be appointed who could take appropriate care of the man she’d loved for over 50 years. It was the only option she could find.

Diane Akerman makes an interesting point in discussing her work with a suicide hotline.

Choice is a signature of our species. We choose to live, sometimes we choose our own death, but most of the time we make choices just to prove choice is possible. Above all else, we value the right to choose one’s destiny.

I considered this idea in relation to the caregiver-recipient dynamic.

As a caregiver, I tried to do everything my mother requested. Without naming it, I was acting on the belief that it was my responsibility to share with her my mental capacity so she could maintain her right to make choices.

While manageable in the short term, this philosophy wasn’t sustainable over time.

Sacrificial giving is appropriate on an occasional basis. Ongoing giving must be done out of our abundance.

Stress is defined as the state in which demand exceeds resources.

Without support in maintaining a balanced focus, a tipping point will come in the caregiver/recipient relationship where all choice has been given to the recipient, and the caregiver no longer has energy or ability to assess whether ‘no’ is an appropriate response. The caregiver has lost choice in her own life, and now is as vulnerable as the one she cares for, perhaps even more so.

Yes, caregivers need rest, need breaks, need services. But more importantly, they need choice.

Ask a caregiver, “What are your options?” If they cite barriers to every possible change, they’re not being difficult. They’ve lost the ability to choose.  it’s time to step in.
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Caregiver Balance – Is it possible?

Since my book, The Reluctant Caregiver, came out, I’ve been in contact with numerous caregivers. One aspect of their stories continues to trouble me.

Caregiver Balance Self-care

Balance

* BILL: Bill’s wife has quit her job to stay home and care for Bill’s father. Bill works extra hours, but it’s not enough to meet their expenses. Dad’s needs are increasing, and Bill’s wife is finding his care too much for her. Their marriage is in trouble, but Bill can’t bear the thought of putting his father in a home.

* RIANNE: Rianne home-schools her three children. When her widowed mother had a stroke, the family assumed Rianne and her husband would take Mom in. Her brother and two sisters, who work full time, feel Rianne is best situated to provide the care Mom needs. Rianne is adamant that her role as home-schooling mother can’t be stretched to encompass caregiving. Mom is to be discharged in a few weeks. The stalemate continues.

Caregiving, self-care* CLINT & CATHY: Clint and Cathy, brother and sister in their 60’s, found a decent nursing home for their father, and ensure his bills are covered. They are regularly criticized by other relatives because they visit Dad rarely, even though they live in the same town. As a result, their relationship with extended family is rapidly deteriorating. Clint and Cathy have chosen not to share the fact that their father brutalized them as children.

* BARBARA: Barb is reading up on assisted suicide and right-to-die laws as she feels her own terminal illness progress. Beyond her physical suffering is Barb’s fear that her family will be crushed under the burden of her care, but the idea of going into a home sets her into a state of panic.

* ALF: Alf’s children watch their dad’s health deteriorate as he refuses to accept help in caring for his wife who has dementia. Mom’s inability to now manage her diabetes is further escalating her needs, putting even more pressure on Dad.caregiver, balance, self-care

* MICHAEL: Michael’s children can’t believe their dad has taken steps to place Mom in a home. They’re now trying amongst themselves to figure out an alternative plan. Can they share Mom’s care, having her come to their homes on a rotating basis instead? Should they take out a loan and add a room onto one of their homes so she can live there? If they do that, whose home will be renovated? How will they cover the loan?

An Impossible Situation

Those who find themselves in the role of caregiver are often compelled to go to extremes. One denies or ignores the needs of their family member. Some expect another to provide the needed care. One family is torn apart, another is drawn together. Some go to the point of bankrupting themselves emotionally, physically, or financially, and can’t allow a change in the current situation.

Is balance possible?

If you’ve found balance, please share your story. Others need to hear it.

* Names, of course, have been changed.

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