Stress Posts

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 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

Caregiving and Parasites

How much care should a Care-Getter get 

‘Til a Care-Giver can’t give care?

Caregiving Burnout

Forgive the offensive analogy that follows, but it’s the only accurate way to describe what I’m trying to get across.

Consider the flower and the bee. They represent a mutualistic or symbiotic relationship where two organisms of different species work together, each benefiting from the relationship.

Now think of a flea and a dog. They represent a parasitic relationship in which one organism lives off of another, harming it and possibly causing death.

Caregiving within a family evolves when a relationship changes from mutualistic to parasitic. Through no fault of their own, one member shifts from contributing to needing. In Alzheimer’s or dementia, the change is gradual. Other conditions, like a stroke, make it sudden and immediate.

In either case, one living being has now become the parasite, and the other the host. (As I said, forgive the harsh terms, but bear with me.)

The difference between the human and the animal world is that regardless of the shift in relationship, the one in need and the one filling that need are equally worthy of help, support and protection.

Our view must be that of two vulnerable individuals. The caregiver is now potentially at risk, just as the receiver is.

Know this. Where chronic conditions exist, the receiver’s condition will not improve. Neither is it stable. Simply put, Grandpa’s dementia, as it was when you visited last summer, is worse 6 months later. Grandma is working harder now to provide for his needs. By next summer, it’s going to be even more intense. What to do?

Caregiver Burnout

Plan.

Be ready to step in and provide hands on help; be it your own time and energy, or arranging for hired help,

Don’t brush aside comments warning that the caregiver/receiver relationship is breaking down. “Sometimes he pushes me.” or, “I get so angry I want to smash things.”

Talk. Come to an understanding before that critical turning point occurs. Formulating a sensitive plan of action can’t be done easily in a moment of crisis.  With the caregiver, or at least with other invested family members, come to a consensus as to what will take place, and what indicators will show that yes, the time is now.

That time may not come at all, but if it comes tomorrow, next week, or next year, you’ll be ready to act rather than react.

What kinds of plans has your family made? What plans do you wish you’d made before it was too late?

How to Kill off our Primary Caregivers Pt 2

Thirteen hard questions that need to be asked, if you’re brave enough to hear the answers.

medium_6377110851 (1)

Last week I talked about our unbalanced view of primary caregivers. This week let’s ask the hard questions.

(Just to be clear, Caregiver and Recipient, are headings for a multitude of situations covering mental and physical issues, adults and children. Keep an open mind, and revise the questions accordingly.)

In our example, Mom has Alzheimer’s.

Ask Dad:

  1. Can she prepare her own food? Use the oven, microwave, kettle safely?
  2. Can she eat on her own?
  3. Can she dress herself?
  4. Can she manage her own hygiene (washing, bathing, toileting)?
  5. How much supervision does Mom need during the day? During the night?
  6. Are you able to go out and run errands without her?
  7. If you take her out, does she behave appropriately?
  8. Is her behaviour sometimes aggressive? Does she throw things or break things? Does she strike out at you? Does she swear, make accusations, threats?
  9. How safe is she? Does she turn on the tap and walk away? Turn on the stove and forget about it? Unlock the door? Try to drive the car? Go outside not dressed for the weather?
  10. Does she wander away from the house without telling you? During the day? During the night?
  11. Does she hop the bus without telling you she’s gone out, where she’s going, when she’ll be back?
  12. Does she demand to go to work? Go home? Go anywhere, and insist you take her?
  13. Is her behaviour unpredictable? Are you constantly on the alert to avert a problem before it happens?

If Dad answers, “Well, sometimes”, take that as often.

Never say, “You should…  ”

Instead, ask, “In a fantasy world, what would help look like?”

Make a plan that Dad says will help. Make it your task to arrange that help in the form of family, friends, or funding to hire what’s needed. Review and revise the plan on a regular basis.

Lets stop  placing the caregiver second to a disease or condition that cannot be stopped. Lets care for the caregiver to the same degree as the recipient. Lets start today.
photo credit: fairfaxcounty via photopin cc

Fisticuffs versus Home Care

Dear MLA,

Here in Edmonton, AB we are spending tax dollars on expensive hospital and nursing home beds to as private Home Care agencies focus on minimizing services, and paying low wages and no mileage to their staff.

Our family’s story.

Before Christmas 2013 Dad, 92, fell getting out of the shower. Mom, 72, tried to help him and fell as well. Both injured their backs. Dad spent a week in hospital. Mom had to take the last of her  RRSP funds for treatment. (She had done this the year before, to cover back treatment cost.  Counted as added income, their rent subsidy was reduced.)

Mom was fearful of bringing Dad home. She knew she couldn’t care for him. The hospital social worker was adamant. Home Care would begin that same day.

In reality, a case manager came to interview them. The following Monday their case went to review. The review committee approved 2 showers a week for each, house cleaning once a week for a limited time, and someone to help Dad with crushing his pills. They would provide a pole for the shower.

When supports finally began, they were sporadic. Mom continued to provide care for Dad, her back getting worse, her stress mounting, and their relationship struggling. The shower pole never arrived. They were told the right one couldn’t be found.

In February Dad and Mom were sent to the Glenrose Geriatric in-patient program for 3 weeks.(Cost covered by AHS)  They learned strategies to build strength, they worked hard. Dad learned he needed to thicken his liquids to prevent choking. When they returned home, his frustration increased, Mom’s stress rose, and he refused to attend to his dietary needs. He went back to regular food and drink. He choked regularly.  Mom became more and more worried. Home care supports were reduced to 1 shower a week for Dad, if they showed up. The rest were pulled. Mom was on her own, in pain herself, and unable to convince Dad to eat properly.

In April Dad was ambulanced to hospital, diagnosed with pneumonia due to aspirating food. It was clear to all of us that without increased, reliable home care, Mom could not care for Dad any longer. Three weeks later a nursing home bed came open and Dad was sent there this week to free up the hospital bed while he waits for an opening in the facility of his choice (an expected 6 month wait.)

Dad moved in Thursday, May 8th. Mom stayed the day, but went home in extreme back pain. The next morning she received a phone call. Dad’s roommate had attacked him the night before. They nearly came to blows. The roommate remained escalated, Dad left the room (in his bare feet and pyjamas, without his walker) to escape. There was only one other bed open in the facility, so Dad was moved to the locked dementia unit. (His mental capacity is normal.)

Mom broke down. She spent the morning sobbing out of fear for her husband, and guilt for not being able to care for him at home. She is also aware that she can no longer stay in their apartment and will have to move as soon as possible. We don’t know what income she will be left with, but she will be destitute once the $1500-$1700 is taken for Dad’s monthly nursing home rent.

Our understanding is that someone was ready to move into the dementia unit bed that Dad is now occupying. That family has been told they have to wait longer. The open bed with the aggressive roommate will have to stay empty until they can find a place for that gentleman. His family must deal with their distress as well. The staff are caught in a hopeless situation as they don’t have the resources to keep residents safe. We were thankful they managed to find an alternative for Dad, given the lack of choices.

In the end, Dad could still be at home. Mom could, with adequate home care, have her husband with her. She wouldn’t be sitting by his bed day after day, aggravating the injury to her back. Their combined income would remain adequate for them to carry on. Our family wouldn’t be fearful and distressed, waiting for the next crisis.

All for want of an aggressive, reliable, well funded Home Care plan subject to measurable outcomes. I suggest Alberta Health needs to rethink their position, and soon. Variations of this story is being repeated in many families across the province. Please help us care for our seniors without such strain on our medical system.

Sincerely,

Bobbi Junior

cc

Gene Zwozdesky: MLA Edmonton-Mill Creek

John Cabral: Alberta Senior’s Health Advocate

Fred Horne: Alberta Minister of Health

Dave Quest: Associate Minister of Seniors

Blog post: www.bobbijunior.com