Difficult Seasons

Life can be hard, and it can be unfair.  And in such situations, people are capable of amazing things.

Like the 19 year old man I heard about.  He was the caregiver as his mom died, making all of the difficult decisions, making all of the arrangements.  While working full time.  Helped by his friends in sitting by the bedside.  And now the guardian for his younger siblings.

While part of the “helicopter generation,” he’s really not.

May God meet his every need and reward him richly in this life and the next for his example of love and devotion.

Grieving

Ever heard words like these coming out of your mouth about someone you need to care for?

Statements of disbelief (denial):  I really don’t believe she’s suffering from dementia.  If they’d just do this procedure, she would be fine.  He doesn’t really need skilled nursing care.  This isn’t going to affect my ability to have a normal life.

Statements of Anger:  I can’t believe the doctor didn’t get it all while he was in there!  Those people just aren’t doing their jobs.  If  God really loved me, He would fix this right now.

Statements of Longing or Bargaining:  I wish I could just sit down and talk to her like before her Alzheimer’s  got so bad.  If we could just find some doctors that really understood, everything would be fine like before.  I miss being able to just take off and leave town on a whim.

Statements describing depression:  I haven’t slept all night in three weeks.  I’m sleeping all the time, and I’m still exhausted.  I’m eating all the time.  I can’t eat — I’m not hungry.  I cry at the drop of a hat.

Statements of acceptance:  We’ve made plans for help with dad’s care to allow us take care of ourselves.  Mom’s condition isn’t going to improve, but we are working with her to find ways to improve the quality of her life.  There have been some definite changes in dad’s condition and we’re getting help for them.

These are statements that can describe the emotions of grief. In fact, they’re common statements I’ve heard from care givers I’ve worked with.  And I’ve made several of them myself in times of loss.

When your parent, spouse, child, or friend loses their health, their independence, and/or their ability to care for themselves, the person and everyone that loves him enters grief.

As a care giver, you’re certainly grieving their loss of ability to care for themselves.  But you’re also grieving the fact that you’ve lost at least part of your independence and freedom and taken on additional responsibilities and duties.

Grief is the normal reaction during such life changes.  In fact, it’s the healthy reaction, one given to us by God.  Grief helps us hold on to what’s been lost until we’re ready to move on.  And it helps us heal.

Tell me about your experiences with grief during care giving in the comments.  It’ll help us all.

Photo Credit:  Brian Leon

Dad

Suddenly, often without warning, the need to become a care giver for a loved one happens. One night  everything is normal, and the next morning life becomes chaotic.

In my case, it happened three years ago.  Eloise and I had  gone over to spend the night with Dad in Marble Falls and then bring him back to Houston Saturday morning for a couple of weeks of visiting.

Friday night he was fine.  Saturday morning he wasn’t.  I found him on the floor, banged up from falling, and barely able to get up and dress. Enter chaos.  What should I do.

Dad had always been self-sufficient, the care giver for his mom, then his sister, and then for my mom.  Now he suddenly needed me to take care of him.  The first stop was obviously an ER visit to find out what was going on.

At the ER it was determined that his condition was due to a combination of prescription medications:  a sleeping pill, an antidepressant, and a muscle relaxer. The doctor recommendations were to stop the medications, let him get  some rest, and move him into an assisted living facility.

Suddenly needing to tell Dad what he should do was my job.  I had never told my dad what to do.  My head was swimming with how to tell him, how to convince him.  What kind of options were there?  Would he be agreeable?  Would I know what was the right thing to do?  Would I be able to do it?

The next weeks and months were chaotic.

A couple of days after returning to Houston, Dad decided he was okay and going back to Marble Falls.  We talked, and I suggested that he talk to his wife, who was living in another city with her son recovering from Ovarian Cancer surgery.  She pretty much told him that it was her house and he couldn’t live there without her — she took on the role of enforcer so I didn’t have to.

He agreed, and we got him settled in a combination independent/assisted living facility.  While things settled down with time, there were still unexpected periods of chaos.  A couple of times he decided to move back to Marble Falls, but didn’t.  We worked through issues with insurance and dealt with health issues.

But gradually things settled into a new normal. Dad began to accept that he would not be able to move back to Marble Falls, and that his wife would not survive her cancer.  It was hard for him to accept, and to adjust to, but he did.  And he gradually began to develop more independence, and my role diminished.

We’re still father/son, but more importantly, we’ve developed an adult/adult relationship where I’m more his advisor than his care giver.

But I still vividly remember the chaos.  And realize that it could return at any moment.

Any time we encounter change — and becoming a care giver is definitely a change — we go through a change process.

Here’s a simple diagram I’ve adapted to help explain the process we go through.

The Change Process of a Difficult Season

We’re happily going along in normality when an event comes along — in this case becoming a care giver — and everything changes.

Suddenly things become chaotic. The emotions of grief show up because we’ve lost our old normal.

Sometimes we’re in denial or disbelief, sometimes we find that we are angry, other times we are filled with longing for the way things used to be, and then we’ll find ourselves feeling quite depressed.  And off and on, we’ll be accepting of the changes that have occurred.  Actually, we’ll generally feel all of these emotions at the same time, but one will tend to be stronger on any given day than the others.

And guess what?  Everyone touched by the change is going through the same stuff.  Except on any given day, different people may be in different places emotionally.  It’s true for the caregiver’s family, and it’s also true for the care receiver.

Just understanding that the chaos is normal and that the grief emotions are normal helps. It provides a framework for naming what you’re feeling.

How long will this last? It depends.  How big is the change?  How disruptive is it?  How serious is what’s caused the change?  How long is the caregiving responsibility going to last.  How difficult is it to achieve a stable caregiving arrangement?

What you can be certain of is that the time of chaos will end, and you’ll emerge into a time of new normal. You don’t go back to the old normal because it doesn’t exist any more.  You bring your new experiences with you into the new normal.

Four years ago we were visiting with Dad when a change event happened and I became his care giver.  We’ll talk about that next.

In the Fall of 2005, my daughter Sara and I taught a five-week class at church for family caregivers.  What we certainly didn’t expect is that the class would spawn a community that continues to meet weekly three and a half years later.

Family members providing care for other family members affects almost everyone at some point in their lives.  Folks who have attended our group have been or are caregivers for parents, spouses, siblings, grandchildren and great grandchildren.

The causes for caregiving have spanned a wide range:  aging; dimentia; cancer, stroke,  and other chronic diseases; mental illness; and physical handicaps.  And frequently, the caregiver has also had to deal with the death of the loved one they were providing care for.

As we’ve met together in community, we’ve discovered that most of the basic principles of caregiving are universal, whatever the age of the person we’re providing care for, no matter what the nature of the need that requires caregiving is.

Today I’m kicking off a series of posts to talk about these caregiving principles, about the things that we’ve learned together in our group.  Along the way I’ll tell some stories, as well as discuss the principles.   Whether you’re currently a caregiver or just know that you will be in that position at some point, I think you’ll find them useful, and something you may want to share with other caregivers you know.

As a preview, I’m reminded as I write how important we’ve found being in community with other caregivers is.  In fact, of the more than 100 folks who have come in and out of our group, almost all express at some point how good it is to find other people that know how they feel as a caregiver.

Care giving isolates us.  We don’t know if what we’re experiencing and feeling is normal.  We only know it’s stressful, and often painful.

But being in community helps.  Community provides us information we can use, provides us emotional and spiritual support, and allows for ongoing learning.  If you’re a caregiver, or know someone who is, find or help them find a support group to meet with regularly.

Or better yet, start one.  It’s a huge blessing for everyone involved.