Just 12 minutes, no sweeping conclusions, but a wonderful invitation to be a companion and caregiver on the final journey.
I’m a researcher – I don’t know how to measure wonder. I know what it feels like.
Just 12 minutes, no sweeping conclusions, but a wonderful invitation to be a companion and caregiver on the final journey.
I’m a researcher – I don’t know how to measure wonder. I know what it feels like.
I’ve been whining about the sorting of post-care-giving issues, haven’t I?
OK, here comes a celebration of the freedom that seeps back into life.
Today I’m roasting Hatch Chiles. Most people are all about pumpkin products as summer turns to autumn. But these beauties from New Mexico make the season for me. Wish I could share the aroma with you.
It is not a fast process, but I can take my time on a blessedly slow Saturday morning. Did I mention the aroma?
I’m not having to watch over my shoulder, or listen for booms and bangs, or make sure someone isn’t too close to the oven.
Because today I don’t have to.
Last night we had friends over for some prayer and Bible study, and we sat out on our recently cleaned deck because it was a lovely evening and because nobody had to stay in the house on safety patrol, or to administer meds, or clean up a bathroom, or or or or anything else.
Because we didn’t have to.
If you’re in the midst of care giving (as we were for more than two decades), savor your respite time. It is a break from what you’re in all the time, but it is also a taste of something that is coming.
Because what you’re doing today will not be forever.
The Book of Common Prayer captures what I’m trying to say, albeit in the cosmic sense,
Almighty God, who after the creation of the world didst rest
from all thy works and sanctify a day of rest for all thy
creatures: Grant that we, putting away all earthly anxieties,
may be duly prepared for the service of thy sanctuary, and
that our rest here upon earth may be a preparation for the
eternal rest promised to thy people in heaven; through Jesus
Christ our Lord. Amen.
We went to our son’s annual Individual Service Plan (ISP) meeting last week, the first since he moved into a group home. What the staff said made our hearts glow,
It’s been one of the best transitions we’ve ever seen. It was hard to think up things for the agenda.
It’s really been that good. He’s taken to the new arrangement and is healthy and happy.
Here on the empty nest home front, we went for some changes of our own. When we started this blog we put up our masthead picture of the backyard dog run. It was built by the previous owners. Our dog never took to it, whined and barked enough to bug the neighbors and became an inside pet.
Anyway, the old picture captured the increasingly weedy and decrepit dog run with a neighbor’s well groomed yard just over the fence. It evoked that care giving feeling that says, We’re all messed up while the world just beyond is going fine.
The old dog run got more and more weedy, run down, rabbit and who-knows-what-else infested over the years. We decided it was time for it to go.
In came a dumpster and out came a friend with sledgehammers and a power saw and assorted other demolitiony goodness.
And, voila, our yard is nice and orderly like the rest of the world. Guess we’re not caregivers no mo’.
Of course this blog has sounded off before about how we are dealing with all kinds of deferred maintenance on ourselves as individuals and as a couple.
There are good PTSD sites out there and this won’t try to do what is already being done better. It is enough to say that the fallout from care giving sticks around long after the work is done.
But doesn’t the yard look nice?
Leaf me alone is ethnic humor that could once pass between friends of different backgrounds. It was cool when my Mexican American friend used it 40 (are you kidding me? Forty?) years ago in our Army barracks in (then West) Germany (quite a history lesson here, eh, kids?)
When my friend John C. (whom I annoyed by calling him Juan Carlos) was having a bad day, he would exaggerate a stereotypical Chicano accent and tell the world, Leaf me alone, esay.
It’s Wednesday as I type this. Hump Day, midweek, and, deep down inside, a caregiver somewhere is screaming at the cosmos. Leaf me alone, esay.
My morning meditation turned up that very scream, aimed at no less than God, albeit in an ancient Hebrew version:
Take your affliction from me; I am worn down by the blows of your hand…Turn your gaze from me, that I may be glad again, before I go my way and am no more. (Psalm 39)
While our insides might scream Leaf me alone and Turn your gaze from me, family caregivers are good at smiling for the outside world and thanking people for well intended compliments like You must be a very special person for God to entrust you with this.
Some friends are perceptive enough to make a face and say, Man, I’d go crazy if I had to do that. Or, as one counselor told a family caregiver, You’re very skilled at living in hell.
I’ve noticed on doctor visits that the “depression inventory” forms the nurses sometimes require include feeling like you would be better off dead alongside the more direct any thoughts of harming yourself?
The former is more common. It’s not necessarily a threat of suicide but is an inner dialogue by which overwhelmed people say leaf me alone.
That doesn’t mean we’re just “venting.” It is horrible to be in the place where life (or at least our place in it) is no longer viewed as a gift to enjoy. Such thoughts can indicate the need for medical help, and we shouldn’t be ashamed of that. Care giving takes a toll.
No great advice for you here. You already know the responses… things like
I know – these things are hard to establish and maintain in many care giving situations. But they are the antidotes to Leaf me alone, which was funny the way my friend said it but not funny in care giving.
Back in my Army days in Germany, I was sitting with some friends in a restaurant bar. There was another American at another table, trying to pick up a German woman.
She didn’t speak much English, it was clear, so he attempted to connect by… getting louder. As if raising his voice could overcome their lack of common language.
I ran into a couple of interesting articles today, each about building connection with people in our care.
In Getting Into Their Heads, Carol Bradley Bursack encourages caregivers to refrain from arguing with those in our care who live with dementia. She encourages rolling with delusions where practical, building a bridge to the caree’s reality, in one case buying a particular school’s class ring for her dad, who believed he’d lost his (he’d never had one in the first place). She writes,
This is only one example of the effect of not arguing about “facts” with someone who has a different view of facts than you have. To someone with dementia, what they believe is just as true as what you and I believe to be true is to us.
She is quick to acknowledge that this is not always feasible, but still a tool to keep in our kit,
Sometimes…all we can do is try to comfort them and get them through to the next cycle. But why would we want to do that when we don’t have to? Isn’t it easier to agree that the sky is green that day than swear it’s blue? Who does it hurt?
A New York Times piece explores building social connection with people living with autism. The two professors who combined on it are concerned that people assume limitations rather than explore possibilities:
Insisting that autistic people behave in ways that they are unable to can lead to feelings of learned helplessness, self-defeating thoughts and behaviors and, eventually, social withdrawal. As an autistic participant in one study explained: “I have been endlessly criticized about how different I looked, criticized about all kinds of tiny differences in my behavior. There’s a point where you say, ‘To hell with it, it’s impossible to please you people.’”
The danger of being assumed to be socially uninterested is especially acute for the roughly one-third of autistic people who do not use spoken language reliably. Like other autistic people, they behave in ways that get misinterpreted, and they may not be able to correct the record.
For all of us, whether we are socially motivated at any given time depends on much more than our innate predisposition for sociability. It also depends on how we’ve been treated in the past; our ability to tune out distracting sights, sounds, smells, thoughts and feelings; and the attitudes and behaviors of potential social partners.
They are articulating what many agencies call Person Centered Care. We do well to learn the modes and means of social interaction that work for a particular person and build from there.
Our son with autism uses movie lines (especially lyrics from musicals) to reach out to others, and can be engaged in return by those who “learn his language.” He is capable of expressive and receptive social communication, but not always on our expected terms.
So, like the GI at the German table, don’t just raise your voice.
Well, unless the person in your care likes yelling.
Our son with autism has Seizure Disorder in his overall diagnostic and safety data. The seizures came on with puberty and were terrifying intrusions in his teen years.
Now he’s in his 20s and the seizures have faded but not gone away. They show up now and again with much less intensity. Well, for him. Not for us.
It used to be that a seizure knocked him out for a good 24 hours. He would sleep and snore or at least breathe heavily until a groggy reentry into our world. ‘Twas up to us to stay alert and watch over him.
Last night he was here for dinner and a small seizure broke through. He knew it was coming; he knelt on a big beanbag chair in our front room and hugged the dog, protecting himself from the risk of a fall. (Confused the heck out of the dog, though, as our son seldom interacts with the pets).
We thought, Wow, that’s sweet! He’s hugging the dog… Then we noticed his forearms were rigid and vibrating.
It ended quickly. We rolled him on his side on the beanbag chair but he was up and talking in a few minutes. He went on to have full dinner and a pleasant evening amusing himself and deflecting our efforts to engage him in anything that seems like work (that’s normal – a sign that he’s fine).
Today he was all smiles, had a big breakfast and is off to his day program.
We, in contrast, continue to recover. Neither of us slept well, as we hovered on the edge of sleep listening for sounds of another seizure. I took a sick day from work to recover.
It is good that he’s moved on to his group home, because we are so absolutely aging out as caregivers.
Today I feel for the folks who care for (and age with) their spouses, who don’t have group homes or agencies to take over the work. As one said,
They looked at my diet. They looked at my life style, my BMI and they are like “There is no reason for this!” I am almost diabetic and there is nothing to indicate WHY I should be – STRESS!!!!! That is one of the worst things on a body – my body can’t take much more STRESS! Despite the yoga, the chammomile, the meditation, the walking and support -being a caregiver is MONOTOMY PLUS and horribly stressful. There is no cure.
Pardon my language, but…
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.
I 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.
You’ve been practicing these habits for a long time and it will be hard work replacing them.
So said a good counselor after hearing another summary of my neurotic accommodations to life’s challenges.
While “normal” life invites us to try out personal training in dysfunctional thinking and behavior, care giving pretty much necessitates it.
Are you angry? Practice holding it in because if you get loud or take a tone it will upset the person in your care.
Are you a people pleaser with crummy boundaries? Keep pulling down your fences and pushing open your gates because you’re Just So Needed. Where will those loved ones be without your sacrificial efforts? I mean, the whole world might come off its axis if you stop. And It’s All Your Fault.
Are you the addictive type? Eat, drink, smoke or otherwise imbibe comfort, ‘cuz you ain’t gonna get it from healthy relationships (of which, it should be said over and over, you’re manifestly unworthy.)
A friend sent me this pro wrestling poster from our younger days. Pro wrestling is a good simile for what I’m talking about here. Yes, they train hard. But it is to produce a product that is fake.
Hey, it draws cheers from the crowd if you do it right. Even if all the pretense might leave you crippled.
My big discovery this week is that things are worse than I thought. Why do you try to play God and take the world on your shoulders?, I’ve been asked more than once about my care-giving-supplemented anti-health training.
But that would be easy to address, wouldn’t it? I mean, it’s a simple confession that my pride is taking on stuff beyond what a normal being can do, so the path of repentance is clear: identify the over-the-top stuff and leave it to God.
But what I realized this week is that I’m not playing God: I’m worshiping a false god, an idol.
Trying to make everybody happy and ensure good outcomes, the focus of my relentless training, IS NOT SOMETHING THE REAL GOD CLAIMS TO DO.
It is a fake god, a demon. I’m not stepping into the middle of the universe to play God, which reality quickly corrects. I’m wandering around in a phony universe, a simulation that maintains the lie and never delivers on what it promises and promises and promises.
Although a humiliating discovery, when I was able to express it I felt about 500 lbs. lighter. Some restoration of health and sanity is already underway.
I wish I could say that it was like an exorcism and now the idol is gone and I’m back to reality and can’t we all just get along? But there’s much more to do.
My working name for the idol is “FEAR.” Fear goes back a long way in my life, taking up residence (at least as far as I can consciously regress) in childhood trauma that I’m not going to dump here.
But it now pervades everything. It warps decisions, it mocks every thought and stalks every experience. It casts a smoggy haze over relationships. Decades of care giving, with all the could-go-wrongs and worries that accompany it, helped FEAR embed and enlarge in my soul.
So I need to change my exercise program. I need to pull down and smash the stones of which this great idol is built.
When people were dazzled by a great ancient temple, where political power and profit had displaced prayer and the presence of God, Jesus of Nazareth said, Yes, look at these great buildings. But they will be completely demolished. Not one stone will be left on top of another! (Mark 13:2, New Living Translation)
I’ve been repeating that – not one stone left on top of another – as the voice from the FEAR altar snarls in my consciousness. My resistance training now must be pushing and pulling down worries and expectations over which I have no control, and stepping up to action where I can be responsible. Saying NO more often. Speaking for myself instead of bouncing back what I think someone expects me to say.
I hope this reaches some folks at the start of their care giving years. Please, please, please: don’t smash yourself. Smash the stones that are piling up – the false expectations that ask you to do things that aren’t necessary and/or by which you hope to gain some kind of elusive approval from the universe.
Smash your idol before its temple gets built.
Amazon Prime Days are at hand, running from the afternoon of Monday, July 16th thru Tuesday the 17th.
If you’re shopping at Amazon consider snagging our book, which distills our care giving experience and hopefully offers an encouraging word or two for those in the stinky trenches.
Besides, the kid broke another VCR and… well, heck no, I’m probably NOT buying another such hard to get and pricey item for him. But maybe you can send us out to a nice dinner and drinks to assuage our frustrations.
Hope you’ll consider checking out the book – for you or a care giving family you know.
Not available for VCR, but there’s a free download for Kindle Unlimited.
Well, not literally. I’m not flipping the car or other antics described in the last post.
I guess it can’t be any other way. There is no magic cure for autism. You have to take in lots of advice and experiment with different approaches because what lifts the life of one autistic kid could be fruitless or even counterproductive with another.
The universal manual of “normal” parenting fails to help. Normal parenting is to yell if you spot an emergency in progress. But if we’d raised our voices and warned Joey, “Hey, put that down. You’ll put your eye out,” we’d be living with a Cyclops by now. You learn to use soft, reassuring tones to say, “Honey, you’re standing in front of an oncoming bus there. How about standing with Mommy instead?” You find yourself looking at the world upside down.
Care giving is a practice in which common sense and conventional wisdom take frequent beatings. Which is why I try to share some spiritual perspectives here from time to time. Misery loves company as it stands on its head, and it also cries out for help that can bring things into perspective.