Caregiver Health Risks

Not sure we needed research to tell us this but maybe it will awaken some compassion in others who haven’t walked down (yes DOWN, as in stumble, fall, get up, repeat) our path.

Caring for others ain’t good for your health.  And if you fit certain profiles you’re at greater risk:

Participants with emerging chronic health problems experienced the biggest declines in health, with rates of hypertension, arthritis and rheumatism, digestive diseases, chronic lung and heart diseases more than doubling.

Being older, female, not receiving a pension, not feeling financially adequate and having depressive symptoms and functional limitations at the start were also associated with worse health among caregivers at the final follow-up.

deadI don’t have most of those factors working against me but stress about not feeling financially adequate is kicking my posterior.  Well, that and turning 60.  I get short of breath and feel overall weakness after bouts of anxiety – it’s like I can feel my own death settling in.

So, you know the drill.  You go to a doctor or other professional or even a friend you perceive as wise and you lay it all out and the reply is,

Hey, take care of yourself.

Take time for you.

Exercise, diet, sleep.

And of course your anxiety goes back up because these are exactly the things that are getting wiped out of your life and why you asked for help in the first place.

I go to the Bible often because it’s not the pie in the sky that many assume it to be.  Much of it is written to and for people caught in rotten situations.  There’s precious little “here’s how to fix it” and much more empathy and simple encouragement to hang in there, because who you are and what you do has meaning.  Here’s a good bit:

“God opposes the proud but gives grace to the humble.” Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you. Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world.  And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. To him be the dominion forever and ever. Amen.  (1 Peter 5:5-11)

Yes – there are wretched things happening to you and to many folks just like you.

No – it won’t go on forever.

Yes – There are evil voices trying to talk you into despair.

No – those voices aren’t the final say.

Yes – there is divine power on your side.

The Greek word translated cast (cast your burdens) is a verb associated with throwing loads on pack animals.  Which is to say that when you pray – when you try to talk to the divine power about what you’re going through – you do NOT need to be elegant, gentle, proper, pious or whatever you think that talking to divine power entails.

Dump the load on God and insist – insist – that he carry what you can’t.

Did you catch the next line?  God will because he cares for you.

God can be the caregiver to caregivers.  Because the divine power does not get sick and die from taking care of us.  God has no risk factors.

Dress Rehearsal

With our son’s new life in a group home comes our reclaimed freedom to have company without having to provide tag team care giving.

In recent weeks we’ve welcomed an eclectic group of friends to come over for a Friday night Bible study.  We look into topics brainstormed by the group.

Last night we looked into death.

As you might imagine, that took us in a number of directions.  One point that seemed to resonate was that life is full of dress rehearsals for death.  We suffer losses, not only of people we love but also of dreams, relationships, health, money, fantasies and you-name-it.

Nothing is held permanently and nothing is 100% under our control – As he came from his mother’s womb he shall go again, naked as he came, and shall take nothing for his toil, which he may carry away in his hand.  (Ecclesiastes 5:15)  That death-like denuding goes on all the time, in the midst of life.

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Jared Cole photo from here.

 

For caregivers, it happens with a vengeance when we hear the diagnosis that turns us into, well, caregivers.  An envisioned future with a loved one dies and we die to the life we were living to that point.  The call to care giving is a blaring trumpet, announcing a cavalcade of casualties.

The Christian spiritual path is one that takes in such deaths as part of life, as dress rehearsals for the physical death that is the lot of all living beings.  I die every day!, flamed the Apostle Paul.  Yet he affirmed that this was not the final word, but always a preparation for a new and unexpected life to flower, 

You foolish person! What you sow does not come to life unless it dies.  And what you sow is not the body that is to be, but a bare kernel… (1 Corinthians 15:36)

And we can find that the dress rehearsals – those death-like losses life brings – can connect us to a death enacted for us, to empower and transform us in the here and now, not to endure losses with a stuff upper lip or daydream about a heavenly pie in the sky,  but to become life-giving blessings to those in our care; indeed to the whole creation,

I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.  (Galatians 2:20)

Let me say it again: the Christian life isn’t stiff upper lip or pie in the sky but, as one of our friends pointed out last night, passionate commitment to life with all its hurts

When Jesus saw her weeping, and the Jews who had come with her also weeping, he was deeply moved in his spirit and greatly troubled. And he said, “Where have you laid him?” They said to him, “Lord, come and see.” Jesus wept.  (John 11:33-35)

and a divine gift to help us move the world with love,

I tell you the truth, anyone who believes in me will do the same works I have done, and even greater works, because I am going to be with the Father.  (John 14:12)

Entertain the thought that care giving is one of these greater works that Jesus promises to load with heavenly power.

And keep rehearsing, even through the death scenes.

A different kind of death

The days after parents hear their child has a disability or special need can be difficult days… Most parents go through a mourning process. The expectations and dreams they may have had for their child die and new ones must take root.  (Sandra Peoples)

003Easter is about an empty tomb.  The expectation that “It’s all over, all is lost” gives way to new life so amazing that, at first, it’s beyond words,

And they went out and fled from the tomb, for trembling and astonishment had seized them, and they said nothing to anyone, for they were afraid.  (Mark 16:8)

May the surprise of Easter give you new hope – new LIFE – in place of whatever you’ve had to give up.  Don’t worry if you can’t hang words on it right away.  Just live it and the One who gives it will help you understand.

Killed by life

The idea of grieving the living isn’t new to me.  A grief counselor opened it up at an autism conference I attended years ago.  There are crossovers between disability and death – dreams are lost, so are familiar comforts and joys.

Today I bumped into a good article on this topic, from the American Academy of Bereavement.  In a 2015 piece entitled Unconventional Grief: Grieving Someone Alive, AAB shares good insight,

jesus-weptThis form of grief, just like grieving someone who is deceased, does not change the level of attachment to the person. Simply, this person is no longer acting how they were before and have had a dramatic shift in personality… Unlike when someone dies, you are unlikely to experience positive emotions while grieving someone alive. When someone passes, you are surrounded by the comfort of their loved ones and are often able to look at the joy of their life. This rarely happens with unconventional or ambiguous grief. Just like when someone dies, you are likely to be overcome with sadness. However, the reminder of your sadness is constant…

The article focuses on sudden change in an adult, such as drug addiction or the onset of mental illness.  For caregivers of children with developmental disabilities, the loss isn’t so much who the person used to be, but who you dreamed of them becoming.  There’s grief either way.

Read the whole thing.  There are some positive suggestions for the grieving caregiver, including this one which has been so true of living with our son’s autism,

Open yourself up to change. One of the hardest parts of grieving someone alive is that you are forced to accept a changed relationship that you do not want. It may be difficult for you to look on a loved one in a different life, but you may be able to experience a rewarding relationship with them in new ways than before. Focusing on finding joy in your new relationship will help keep your mental state positive rather than gloomy.

Finding joy in Joey-as-Joey, rather than as the Joey of our daydreams, has been an essential care giving tool and its own reward.

And Jesus opened his mouth and taught them, saying:  “Blessed are the poor in spirit, for theirs is the kingdom of heaven.  Blessed are those who mourn, for they shall be comforted.”  (Matthew 5:2-4)

 

Worth reading, discussing and doing

Forbes Magazine has a #LifeHacks piece called 4 Critical Things To Do Before Becoming A Caregiver.  It is concise – almost a simple checklist of ways to prepare “General, Legal, Medical and Financial” documents and plans before becoming a care giver to a family member.

Ideally, discussion and preparation should go on while the family is in good health.  Spouses should talk about plans as they age; extended families should talk things out with parents, grandparents or other aging loved ones.  Families like ours, engaged in long term care of a special needs child, need to get ahead of these matters as well.

Unfortunately, care giving falls into many lives without time to prepare, as the result of a catastrophic illness or accident.  This article will still serve as a valuable resource, even under difficult “catch up” conditions.

While the article does mention getting “Names and phone numbers of religious organization and points of contact,” we would amplify this to include discussion and documentation of funeral/burial wishes, whether religious or not.  Don’t underestimate the wear and tear on care givers and other survivors;

  • the unexpected cost of a funeral, often setting up stress between unexpected price and available budget, leading to guilt and family squabbling;
  • the bombardment of questions – “What music at the service?  Burial or cremation? Who is going to speak?” – that comes in right when survivors just want to be still, remember and grieve;
  • the challenge of providing an event for a large number of people, many of them strangers to the survivors, on short notice;
  • oh, so much more.

It is a great gift to the family to have talked out and written down the loved one’s wishes in advance.  Most funeral homes and many churches have worksheets that ask all of the relevant questions, and having these available at the time of death takes a great deal of strain off of those dealing with loss.

…when such a thing happens…

Everyone reading this book – indeed, every human being – needs to know that when such a thing happens, we are not alone.  Victor Lee Austin, Losing Susan, Brazos Press 2016.

If you are a family care giver, or if you know one, Victor’s book (and it really turns out to be his late wife Susan’s book just as much) can be at once a splash of cold water that wakes you up and a strong arm around you for comfort.

20170206_141154He tells the story of his wife’s long terminal illness and his efforts to care for her with great love and humility in a pure sense of that word, by simply being objective and not forcing any judgments.  Some questions are left hanging, and this book gets across how normal and necessary that is.  No tidy answers to the big questions, but great insight into family care giving and a gift of compassionate companionship for those who are caregivers.

Just as many combat veterans need others who’ve been in battle to process what’s happened in their lives, care givers will find in Victor and Losing Susan a level of understanding and acceptance that helps process uncomfortable emotions and experiences.

Reading this is a reminder that care giving thrusts orderly souls like Victor’s into chaos, free spirits into stifling routines, thoughtful people into impulsive action, rational people into irrational situations, spontaneous people into detailed planning, extroverts into isolation and introverts into a land of disintegrating boundaries.  And what’s worse is that this all involves the loss of the person most a part of us and most able to buffer us in life’s hardships.

As I read this book, I was struck by how much I would like to see couples read it while preparing for marriage.  God forbid that they should have to walk the same course as Victor and Susan, but they will walk some part of it.  This book, by telling a family story rather than framing a lecture, brings out the deep reality of

In the Name of God, I take you to be my wife (to be my husband), to have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, until we are parted by death. This is my solemn vow.  (Book of Common Prayer, 1979)

That kind of promise will take us into situations for which we are radically unprepared and, in all honesty, incompetent.  As Victor describes so well,

I never had any confidence about how much I should push or encourage her and how much I should step back and just let her be.

I’ve talked to a lot of people who have to care for others whom they love, and we always recognize this point of commonality.

This common lack is why care giving can’t be pulled off all on one’s own.  We need companions and, if we can recognize it, we need God’s grace.  Losing Susan is a voice for both.

“Could be worse”

That saying is too often dropped on a person when they are in pain.

I mean, how often does it really result in, Wow, you’re so right.  Because you said that, my hurt just went away and I feel all better!

Guys (literally, guys for this illustration), did that gorgeous stranger ever jump into your car because you yelled Hey, baby, you fine! out the window?

Could be worse is like that.  Tends to be counter productive.

I was musing on it last night.  My son with autism went with me to a fund raising dinner for a family who’d lost a young man in a construction accident.

joe-eating-ice-creamHere’s my son eating ice cream at the event.  He didn’t like the volume of the loud band, so we made a contribution, said a few passing hellos, ate and left.

I sat grieving the loss of social normalcy in our family.  We couldn’t visit with friends, ask if so-and-so was there or any other normal stuff because our son needs us close at hand and his needs control much of what we can and can’t do.  I was able to give the deceased’s mom a quick hug but couldn’t really spend time with the mourners.

And of course Could be worse played in my head, louder than the band.

Our son isn’t dead, after all.  We have him to enjoy in so many ways, even with all the crud that autism brings.

But one of the struggles for caregivers is prolonged grief…

Grief for lost dreams, when a child’s disability wipes out traditional expectations;

Grief for lost intimacy when a spouse’s or partner’s illness takes it away;

Grief for loss of golden years when something like Alzheimer’s annihilates connection and shared memories;

Grief for… fill in the blank with one of many living losses caregivers experience.

Sure, could be worse.  But it is real, even when one holds all the relative losses in perspective.

grief-meme

From lessonslearnedinlife.com

We’re all the wilderness together, as the old graveside prayer reminds us…

In the midst of life we are in death

Permanent Markers

After the death of her spouse, the woman who cared for him through his terminal illness wondered if she could still attend her caregiver support group.

Nobody in the group had to think twice – “Of course you can come here.  You’re always one of us.”

My wife and I wonder what life will be like once our son with autism moves into a group home.  I think it safe to say that he’s changed us both in some permanent ways; we’ll always be “care givers” even when not running around cleaning up messes and dealing with emergencies.

thomas-by-carravagio

Caravaggio’s rendering of Jesus’ appearance to Thomas – “And this one’s from washing bedding at 2 a.m.”

The Bible says that when Jesus rose from death, his great victory was not a complete makeover.  He carried the wounds of his execution.

Eight days later, his disciples were inside again, and Thomas was with them. Although the doors were locked, Jesus came and stood among them and said, “Peace be with you.” Then he said to Thomas, “Put your finger here, and see my hands; and put out your hand, and place it in my side. Do not disbelieve, but believe.” (John 20:26-27 ESV)

Care giving leaves marks on our souls, if not our bodies.  Some marks are wounds.  We tense up at certain sounds.  We continue to sleep with one eye open.

But other marks can make us glorious treasures to others.  Empathy.  Hard earned wisdom.  Humor.

We stay in the care giver club, not only to be cared for but to be good companions to those still giving care hands on.

Look on my works

People with autism perseverate.  They can grind you into powder repeating some word or phrase over and over.  I mean, for hours.

For them, it’s connection with the world.  For the world, or at least the caregiver in their little part of it, it is numbing at best and torture at worst.  Just say Soon there will be presents to my wife.  Especially after our son has plopped next to her and put himself on auto play for a few hours.

But then plenty of neurotypical people get pop tunes stuck in their heads.  OK, I do that, too.  Or some fish story we have to share again and again, no matter that our long suffering spouse has been there every time we shared it and is getting nauseous as we launch into it again.  Or a joke we think is the greatest of all time and have to keep telling, forgetting that the folks who are hearing it this time were the ones who heard it last week.

Sometimes something more highbrow gets lodged in my brain.  I hoard those to myself, but then I’m an introvert and I know that if I share my deep thoughts the listeners are likely extroverts who will let me speak a few sentences and then use something I said to shift the conversation to themselves.

OK, back to my top shelf perseverations.  A couple of days ago it was Percy Bysshe Shelley’s poem Ozymandias.  Here’s a recitation by Bryan Cranston, the Breaking Bad guy,

I even found an Islamic scholar upacking this famous Western poem for his students.

OK, OK, back to my thoughts.  Let me perseverate all over you.

I think the line Look on my Works, ye Mighty, and despair! is brilliant.  It is so loaded with irony and makes a gigantic philosophical, even theological point in just eight words.  Read with a mind to the king who commissioned his own statue, it means Ha ha ha, losers.  No matter how great your achievements, mine will make you feel puny.

But read from the narrator’s (and our) point of view, it says, All human accomplishments crumble into dust.  Stay humble.

So what’s that have to do with care giving?

We spend a good deal of time lamenting might-have-beens.  There are works we assumed would be monuments to our lives, but they seem to be pre-crumbled.

We are all too aware of dreams that we had to put on hold and which hung up on us rather than wait for us to get back to them.  Career development, travels for pleasure, even that movie matinee we had planned go away while we are tied up.

Even on our most chipper days, we know that those in our care are not living out our hopes and dreams for their lives, either.  I know some counselors who treat caregivers with the same techniques used for people grieving a death.  A life we anticipated was aborted by some syndrome, illness, genetic code or catastrophic accident.  Someone is there with us, but not the someone with whom we expected to share our lives.

What Ozymandias reminds me is that everything, even the achievements we admire, envy, covet and resent on everybody else’s happy Facebook, Instagram or whatever pages, are part of that colossal Wreck, boundless and bare.  The picture at the top of our blog?  Sure, our yard is ratty and the neighbor’s over the fence is paradise.  But in time The lone and level sands stretch far away for one and the other.

Which is an ass backwards way of saying that you are no less than anybody else as care giving pins you down and hems you in.  No, they won’t build a statue to you.  But the ones who get the statues don’t fare any better when all is said and done,

Man in his pomp yet without understanding is like the beasts that perish.  (Psalm 49:20 ESV)

And what you do as a care giver can be part of what will always be said and will never be “done,”

Love bears all things, believes all things, hopes all things, endures all things. Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. (1 Corinthians 13:7-8 ESV)