A Love that Lets Go

So important to honor the dignity of those in our care, even if that presents difficulties all around.

BeautyBeyondBones

I’ve spent a lot of time recently in my own head. Today marks the three month mark since my mom’s stroke, and there have been a lot of ups and a lot of downs.

And I’m learning a lot.

And honestly, I’m learning a lot about God’s love for us.

We’ve reached the stage in my mom’s recovery where…there’s a frustration within her about how things aren’t back to normal. And a gripping desperation for autonomy.

And I’m going to be really honest, being in my position, as her grown daughter, having come home to be her “sidekick” as I call it – there’s a really delicate balance of how much help is too much help. I want to assist her so that life runs smoothly, but I don’t want her to feel like a child or that I’m belitting her or discrediting her capabilities or contributions. And I’m finding…

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The Ravenous Bugblatter Beast of Traal, (not) at your service

I am reblogging this one. My wife spotted it as one of those “Facebook Memories” from 2013. In this piece, I note my own need for boundaries. I neglected this and in 2015 was laid out by anxiety and depression. 2016 was a year of healing and growth for me. Please, if you detect your own stress points as a caregiver, seek help. Pain is an important warning. God bless you.

Sometimes Care Giving Stinks

“…avoid the gaze of the Ravenous Bugblatter Beast of Traal (such a mind-bogglingly stupid animal, it assumes that if you can’t see it, it can’t see you)…” Douglas Adams, The Hitchhiker’s Guide to the Galaxy

I (Tim) made a mind-bogglingly stupid move this week. I was out grabbing lunch, when I noticed someone I knew at one of the tables. He was engaged in a conversation and didn’t see me. And I used that as an opportunity to scuttle to another part of the place where a wall would be between us. If I couldn’t see him, he couldn’t see me.

Now, this guy is pleasant. Funny, interesting, a good guy. But I didn’t want to interact. Not so much as to go by and say a quick “Hey.”

One of care giving’s side effects is to send my introversion off the charts. When I’m not doing all…

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Breaking the Stigma of Mental Illness – Yom Kippur 5777

Compelling thoughts and a prayer at the end that includes caregivers. Your compassion for those in your care is precious.

Rebyehoshua

There is a town in Belgium called Geel (Hyale), with a remarkable 700 year old custom of compassion.

Its origin lies in a legend about a seventh century Irish princess named Dymphna.  When Dymphna’s mother died, her father went mad, insisting on marrying her.  Dymphna fled to the continent.  When he caught up to her in Geel, he beheaded her.  Dymphna was sainted, and pilgrims began visiting the site of her martyrdom in search of miraculous cures, especially for mental illness.

A church was built in 1349, and later, an annex to house the visitors.  Eventually, the townspeople began to welcome the mentally ill relatives of pilgrims into their homes as “boarders.”  For the townspeople, it was an act of charity to open up their homes.  “Boarders” stay with their hosts for long periods of time, as many as fifty, or even 80 years, becoming part of the family.

At…

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Here a Friend, There a Happiness

Caregivers are “Blooming Idiots” who tend and nurture while being sliced and diced by thorns. Beauty grows no other way.

Raising 5 Kids With Disabilities and Remaining Sane Blog

two-friends-hugging-clipart-2-girls-hugging-as-best-friends

My daughter, Marie, was severely abused as a toddler and young child. She came to live with us at the age of 7 after being found wandering the streets barefoot at 2 am carrying her infant brother looking for formula for him. The effects of the abuse were immediately apparent. She couldn’t stand to be touched, and would cower under the table if she felt threatened. She was angry all of the time and refused all attempts at affection. (When she was with us for a few years, she finally allowed me to give her a “fist bump” as a way of showing my love for her, a love she certainly did not reciprocate because she didn’t know what love was.)

Posttraumatic stress episodes were explosive and frequent, and required restraints and hospitalization. She had superhuman strength while in the throws of PTSD, as I am sure the EMTs and…

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Traumatic stress with no “post”?

The Rev. Nigel Mumford is a former British Royal Marine.  His experiences under fire in Northern Ireland contributed to Post Traumatic Stress (I prefer to drop the “D” of “Disorder,” since being truamatized is what naturally follows from trauma).

I just read his book After the Trauma the Battle Begins.  His work in healing prayer ministry has a special focus on combat veterans, but he has a broad awareness of those suffering from PTS (emphasis added):

Can the war veteran, the victim of abuse, or the caregiver reach a point of overload?  Of these three, the caregiver is perhaps the most likely to be affected by compassion fatigue.  Listening to their stories, over and over again, I have heard the cry of caregivers who became saturated with the trauma of those for whom they are tasked to care.

Dali_The_Persistence_of_Memory

The Persistence of Memory, Salvador Dali

The stress of caregiving can be a rolling trauma with no “post” about it.  In my conversations with other care givers – which include talking to myself – I hear plenty of

My life’s been ruined.

Nothing gets better.

I even hear

I wish I were dead.

Care givers can be immersed in the trauma of a loved one for decades.  The condition of the person in their care gets into and changes – if not completely takes over – every aspect of their life together.  This coming week our son’s daily program will expand so that Melissa gains a few hours of afternoon respite, but that won’t suddenly erase the exhaustion of the last several months, which are woven into the preceding twenty two years…

It is hard to know how to deal with such traumatic stress, since it is unrelenting.  Many of us joke about going to the doctor and hearing things like, “Well, you have to take care of yourself” and “Do some things to reduce your stress,” after which we go right back to immersion in situations that overwhelm any “self” we once had.

The Rev. Mumford’s book is self published, and a bit of a stream of consciousness in places.  It’s also overtly Christian in approach.  So it won’t be every reader’s cup of tea.

But it is a kind and compassionate book.  Sometimes the experience of another person recognizing, understanding and caring about what we experience goes a long way.

Here’s A Prayer for a Sufferer of PTS that he offers toward the end of it.  It is focused on returning military personnel, but it might resonate in your soul:

Oh God what is going on in my mind?  I have seen too much.  I have experienced such a trauma.  Please help me – and rewire my brain, train my brain to live at home and not in combat anymore.  Help me with the memories and the shame of reaction to an action that I was trained to react to save my life and the lives of others.  Please help me in the flight/fight caveman instinct that saved my life and the lives of others but now is floating around in my mind, not really understanding what to do.  Jesus my very being is so wounded help me to focus on your wounds.  PLEASE carry me through this that I might know that I might know that I might know that you are slowly healing me from the inside out.  Jesus I put my hand in yours and, even though I might struggle with trust, I trust you.  You know me.  You know when I suffer.  You know when I wake up at night from yet another “Sit rep” [situation report].  You know my wound, physical and emotional.  Please help me.  Bring people into my life on my side that can help me to heal.  Help me Jesus to know that part of my mind as I ask you to sort me out.  PLEASE put your hands on the flywheel [the runaway emotional and physiological reactions to stress triggers] and heal me.  Thank you Jesus.  Amen.

 

Hello Fellow Care Givers

Welcome to the Holiday Progressive Blog Party, sponsored by caregiving.com ! As a way of saying “Welcome and Hello” to visitors here, we’ve reblogged the very first intro post from our blog, which appeared in 2012.

Visit all of the participating blogs this week.

Sometimes Care Giving Stinks

If you are reading this, you are probably a care giver or you care about someone who is.  And “stinks” probably got your attention.

We are a  family of people giving and getting care.  We won’t bore you with all the details now.  They will come out as we post stuff here.

We’ll be sharing stories and thoughts that help us give and receive care.

We want to mix hope, tenderness and an occasional laugh with tales of frustration, hard work and bodily waste.

We will look forward to your comments.  Hopefully, we can grow into sources of wisdom, comfort and encouragement for one another.  The things you share will likely inspire some of what we write here.

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Thanksgiving Dinner Plans

Health limitations, sensory issues, simple childlike stubborness… for any number of reasons, feeding those in our care is at once simple and aggravating.

Aggravating because we go to much trouble to spread a table with stuff they’ll ignore… simple because we know there’s just one that has to be served.

Saw this on the Autism With a Side of Fries Facebook page.  It’s right on target

Thanksgiving Food

Our man Joey likes a corn casserole that Melissa makes.  That’s all he needs on Thanksgiving.  He eats a bunch of that and goes off to watch movies.  He’ll even eat it for a couple of days of leftovers, just like the rest of us do with all the other Turkey Day fare.

For the first time in a bunch of years, we are not cooking Thanksgiving dinner.  Some wonderful friends invited us over and I (Tim), before any debate could ensue, said “Yes!  Absolutely!  Thanks be to God!”

But we ARE making the corn casserole to bring with… Joey wouldn’t have it any other way.

Just found out that Melissa needs a medical procedure on Wednesday… so today we have to figure out how to work in cooking the casserole between that and my work schedule.  But there will be corn casserole, dammit!

Language skills

No, not for them, silly.  For us.

There’s plenty of quality stuff out there about building up the language skills of people who live with autism.  But what about those of us who live with them and care for them?

Living with our son is like taking several years of foreign language in school.  You autism for dummiesbecome proficient – you think.  Then you travel to the country where it’s spoken and you run into regional dialects and accents.  Yes, you learned the formal language.  But you can’t communicate with the natives.

So today Joey threw open our bedroom door at zero dark thirty.  Haloed by blinding light from the hallway behind him, he said, Mom has to clean up the floor.  In my understanding of his language, that means

a) I’m asking for Mom because she will be patient and tender whereas dad is a grumpy jerk and will upset me;

b) I had a bathroom accident.

Being a chivalrous kinda guy, I tried to let Mom sleep.  I rolled out of bed and into the hallway, my arm flailing for a switch to swat off the light.

I endeavored to be patient and tender in my affect beyond that.

Sure enough, there was a towel on the bathroom floor.  Joey will drop a towel, like a football ref throwing a penalty flag, on an “accident.”  But the towel was dry.  There was no accident.  He’d just put it there to keep his feet warmer on this cold morning.

Joey, where is clean up the floor?  (See, I’m pretty good at his language).

It’s clean up the floor for the bed?  (He inflects statements as questions when responding to questions.  I hope you’re taking notes).

Now my patient and tender was just about to leave the building.  Had he wet the bed?  He hasn’t had a bed accident in ages.  Grabbing up piss soaked bedding and doing loads of laundry on a cold dark morning did not appeal.  Remember, friends, this is all unfolding before I’ve had even a whiff of coffee.

But the bed was dry.  The blankets were dry.  What the…?

It seems that the fitted sheet hand come undone at one corner. That’s right, in his language clean up the floor is now a regional colloquialism for the bed’s unmade.

The stuff they don’t teach you in care giving school.  Sigh.

 

Dementia Talk

If marvel at the many crossover issues between autism and dementia care giving. Communication is, in both cases, difficult and frustrating for both parties. But there are ways to build a bridge. Good article with some ideas here.

Joyous Paradox: Elders, Care, Love

Editor’s note: What’s the most popular post on Joyous Paradox, my elder-care blog? How to Say Hello to Someone with Alzheimer’s Diseaseranks way at the top. As a professional caregiver, I’ve had the privilege of working with many folks with dementia over the years. I learn more about the nuances of human communication with every encounter. In the coming months, I’ll be sharing tips for strengthening our bonds with those affected by memory disorders. Let’s begin the conversation with a superb overview of dementia communication strategies from England’s National Health Service. — MAB

Communicating with people with dementia

Grandmother and Grandchild by Lovis Corinth, German, 1919 Grandmother and Grandchild by Lovis Corinth, German, 1919, via Wikimedia Commons.

Dementia is a progressive illness that, over time, will affect a person’s ability to remember and understand basic everyday facts, such as names, dates and places.

Dementia will gradually affect the way a person communicates. Their ability to present rational ideas and to reason…

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