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.
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.
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.
I am a commuter these footloose and fancy free days. Yes, that’s sarcasm. Care giving rides with me all the time. It knows when I’ve been sleeping, it knows when I’m awake, it knows that I’m trending badly and never good enough… Whee! Everybody sing!
Still, the time in the car lets me enjoy reading, by which I mean listening to audio books.
I just finished Every Note Played by Lisa Genova.
This simultaneously brutal and beautiful novel is primarily a call to compassion for those suffering with ALS, commonly called Lou Gehrig’s Disease.
It’s also an honest and sympathetic portrayal of care giving.
The story follows world renowned concert pianist Richard as the disease takes control of his life.
At the same time, it gives voice to his decidedly estranged ex-wife Karina. As the disease progresses, it falls to her to become his primary care giver.
The fictional Karina will become an immediate confidant to any real life care giver who reads or hears the story. Like most of us, care giving falls in on her. Her life is taken over by ALS, too.
The author brings out the full range of care giving emotion. There are all of the bitter, ugly feelings and daydreams. There are also the splendid discoveries and inner healings that would never come without the demand to take care of another in ways above and beyond “normal.” There’s painful honesty about playing the victim and blaming others or an out-of-our-control illness for life choices we did have and failed to make – or made poorly.
The story also brings in the perspectives and significance of others called upon to care for Richard; there’s Bill, a home therapist who found his calling by caring for a partner with AIDS; Grace, Richard’s and Karina’s collegiate daughter who must slog through the fallout of their divorce to reconnect with her father; and an array of medical and therapeutic specialists whom the author imbues with distinct personalities and gifts that they bring to bear as Richard’s need escalates.
Genova does noble work in articulating, through Richard, the point of view of the person receiving care. There’s the flood of gratitude for what seem like minor gestures, and the cold indifference or flaming hostility to big ticket technology that can add convenience but deepen feelings of imprisonment and humiliation. There’s the need for power to make some choices, from the right music to play to life and death decisions about treatment options.
By exploring Richard the caree and Karina the primary care giver with depth and honesty, the story makes their struggle to be at peace credible, dramatic and moving. If your tear ducts still work, they will find opportunity to represent as this story unfolds.
My minor quibble with the book derives from its core strength. It is a detailed explanation of ALS in story form, but the quest to get in all the info about the disease sometimes overflows the narrative and comes out like a lecture. A chapter that mentions a palliative drug cocktail lists the specific medications at least three times by name. There’s an infrequent but noticeable tendency to wander away from expressing the disease through what Richard is experiencing, thinking and feeling to sentences that seem disembodied and didactic. The info is worthwhile, to be sure, but sometimes intrudes on the connection with the characters that is the heart of the book.
But taken as a whole it is an excellent novel. It is a story in which the heroes are the villains and vice versa. Richard and Karina are each, as Charles Lamb said of Coleridge, An Archangel a little damaged. Although their story is driven by ALS, their struggle will ring true for family caregivers in any setting.
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.
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.