Reluctant Caregiver 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.

file1251238100316

A Different Kind of Dementia

A Different Kind of Dementia

When my mother began showing signs of dementia I read up on it as much as possible. Back then, everything I found was about Alzheimer’s. Mom clearly didn’t have that, so I didn’t know where to turn. Today I know that the Alzheimer’s Society supports people with any kind of dementia (of which there are a number), so if the symptoms below ring a bell for yourself or someone you know, contact the Alzheimer’s Society in your area for information and direction.

DEMENTIA WITH LEWY BODIES

Dementia with Lewy Bodies (DLB) accounts for up to 20 per cent of all dementia cases. As well as cognitive symptoms such as memory loss, confusion and changes in alertness, people with DLB also experience some challenging non-cognitive symptoms. These include vivid hallucinations, disturbed sleep, depression and problems with walking. The non-cognitive symptoms are common and can be extremely distressing for people with the condition and those who care for them.

dementia_s9_lewy_bodyCurrent treatments for the non-cognitive symptoms of Dementia with Lew Bodies are extremely limited. Research shows that, on average, people with DLB have a lower quality of life than people with other forms of dementia and are more likely to enter nursing sooner. Health and social care for people with DLB is therefore more expensive, with one study finding care costs to be over twice those for Alzheimer’s disease.

EARLY ONSET DEMENTIA

EOD, also called Younger Onset Dementia, is the term used for individuals who are diagnosed before the age of 65. Studies show that about 1 person in every 1,000 under the age of 65 develops dementia, some as young as 40.

A diagnosis does not mean the end of life as the person knows it. With education for those involved, adjustments in work schedules, and adequate support life can continue to be meaningful.

THE PURPLE ANGELS – AWARENESS

Purple Angel

Norm McNamara was diagnosed with EOD several years ago.Since that time he has spearheaded an awareness campaign called The Purple Angels, which has spread from the UK to other countries. And he does this with EOD.

WHAT DOES THE FUTURE LOOK LIKE?

If dementia has not yet touched your family or someone you know, you can be sure it will, one day. Lets begin with awareness. Lets form the belief that people with dementia can often remain independent and productive for a period after diagnosis. Lets educate ourselves so we can support their caregivers in constructive ways, and build future communities and programs with dementia supports in mind.  Each of us reading this now, may one day need those supports, so lets act today.

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.

happy face

 

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

yoke

photo credit: Bienen via photopin (license)
photo credit: DSCN10905 via photopin (license)
photo credit: how many channels does it get? via photopin (license)

The Mistaken Goals of Caregivers

The Mistaken Goals of Caregivers

How do caregivers define success?

In a recent interview, author Louise Penny said of her husband, a doctor who now suffers from dementia, “I only want him safe, healthy and happy.”

The problem is that ‘safe’ means restricting the person from doing things they can no longer manage. Dementia may already be causing frustration, depression, anger, and sometimes aggression towards their caregiver. Adding in such restriction can only exacerbate the situation. As a result, ‘happy’ goes by the wayside. Without the peace that comes from happiness, or at least general contentment, health is often impacted as well.

‘Safe’ seems to be the only condition a caregiver can control, but are the repercussions worth it?

When Mom was in Assisted Living, my brother and I were called in by the manager.

“Your mother is going to the bank across the street and taking out large amounts of cash. She carries it loose in her purse, and walks up and down Whyte Avenue that way. It’s not safe!”

Caregiver, Dementia, Elder AbuseMom always took out $2000 in cash to manage her household bills. Memory was driving her to carry on this practice. If we tried to restrict her, she wouldn’t understand. She would, however, find reference to financial elder abuse in her brain, something she’d read up on a lot when her dementia took her into a paranoid stage. Past experience told us that if we interfered, Mom would become obsessed with how to report us. Trust would be lost, and she would refuse our help.

We decided, rightly or wrongly, not to interfere. I trusted that God could keep her safe. A few months later her dementia had progressed to where she could no longer manage the process of navigating the way to the bank. In the meantime, she was able to carry on as her brain demanded.

What do you think? Is the expectation of a “safe, healthy and happy” recipient a reasonable measure of success for a caregiver? If not, what should the goal of the caregiver be?

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.
photo credit: neonow via photopin cc