InspirationU Blog

On Friday night, this very one, before the new moon and the eclipse show on Sunday; before your relaxing weekend, and after a week of stress or creativity or both, I want you to do something: Play a drum.

I'd love for you to haul out a drum or rattle or maraca if you have one, or a pot or pan and a wooden spoon, or an empty waist bin turned upside down and a stick or whatever you can fashion into a drum, and drum with me. I will be leading a New Moon drum circle in my small town of Anacortes, Washington State at 7:30. And it will be a family event at a place called the Center for Happiness--you are invited if you are near. Details below this note.

But I also invite you to drop what you are doing at 7:30 PM in your part of the world and play a drum beat with 2 intentions: To weed and seed. Farmers and gardeners around the world know that around the new moon, it is a good time to haul out weeds and to plant new seeds.

So here we  go:
I want you to close your eyes and list in your mind everything you would like to release  (habits, old stale thoughts, an energy, or even someTHINGs (weeds) and drum them out.  Then, when you feel complete, close your eyes and list out your intentions (seeds) for the next month: Ask: What are you creating? Have those creations in mind as drum, drum drum! Any rhythm wil do.  And if you feel like dancing a little as you drum, go for it!

Do this in your time zone, or synch up with mine when I drum at 7:30, Pacific Daylight Time. Lets all see what happens. Reports from your place on earth would be great.

So, you might be wondering: Why?
Well, I know the power of collective prayer, believe you me. I've recently seen the effects on our current situation and Jim's healing. Thank you!

Drumming is an ancient way to offer up a prayer.

So let's pray and weed out all those nasty thoughts of scarcity, greed, shoulds and oughts, and I don't have and stress and sadness...let it all go!

And let's seed intentions of goodness, compassion worldwide and in your own life, forgiveness, abundance for all, peace in your heart, peace in our collective hearts, your dreams  and desires and more....

Thanks drummers all! Brightest blessings to your corner of the world!
Elke

Friday, May 18th, 2012 @ 7:30 PM

New Moon Family Drum Circle
at the
 Anacortes Center for Happiness
619 Commercial Avenue
“The Ballroom”
Anacortes, WA 98221

Bring your  intentions, dreams drums and rattles if you have them, or borrow mine, and lets drum!
No experience needed.  Families welcome!

I am home on this Saturday morning catching up on paperwork. Meanwhile, Jim is out of the house, having walked to a local coffee-shop several blocks away to share some time with an old friend. Jim’s vision of community and home had always included the ability to walk to a coffee-shop, and after moving to this charming seaside town, here was the fulfillment of that dream . Nice, huh?

Wait, you are reading the above and you are thinking, “Come again? Jim walked several blocks…alone?” Yes. He did. And this is his second sojourn to Latte-land this week. He also has walked to our health-club about a 1/2 mile away, as well as daily trips to the library across the street. 10 weeks after his catastrophic stroke, the enormity of a decaf latte with a friend cannot be underestimated. It’s big.

My spirit rejoices, as well as the human. Yet….I do have to admit a certain trepidation still, much like the trepidation a parent has when their child goes off to school the first day, or when said child first moves out of the nest. I have come to expect some amount of anxiety, yet I am also trying my very best to not let cords of fear bind and immobilize me. One of the least discussed aspects of caregiving, in my mind, is the PTS (Post-Traumatic Stress) involved after the initial event is long over. And it needs to be discussed and worked with, because the effects of the stressful event can have long lasting consequences to the caregiver’s future health.

A few years ago, I was researching energy healing treatments and came upon a site explaining the German New Medicine, and the work of Dr. Ryke Geerd Hamer. Controversial to the max, yet so compelling, his research of thousands of cancer patients stemmed out of his own brush with cancer–emerging a mere three months after learning of his son being shot while on holiday, and subsequent death. Suspicious of the possible tie between the traumatic event and his illness, as well as his wife’s cancer-caused death shortly thereafter, he set about finding a link of some kind.

You can read about his results, research, application, treatment and so on at numerous sites, including this one: http://www.newmedicine.ca/german-new-medicine.php, but mainly I point to this intriguing causal link, the main theory behind his New Medicine (I marked the theory in bold):

“Dr. Hamer realized that his wife’s death and his own cancer had to be connected somehow with the tragic shooting and eventual death of their son, Dirk. As a medical doctor, scientific researcher and head internist of an oncology clinic in Munich, Dr. Hamer was in the position to be able to come to the conclusion that a physical event can create a biological conflict shock that manifests in a visible physical transformation in the brain, and leads to a measurable change in physical-nervous parameters and to the development of cancerous growths, ulcerations, necroses and functional disturbances in specific organs of the body.

“After twenty years of research and therapy with over 31,000 patients, Dr. Hamer finally established firmly, logically and empirically how biological conflict-shock results in a cold cancerous or necrotic phase and how, if the conflict is resolved, the cancerous or necrotic process is reversed to repair the damage and return the individual to health.”

I bring this up not to scare fellow caregivers onto thinking: “Oh my God, am I next? Am I going to get sick? ” I bring up possible consequences because caring people do not usually care for the one person in the equation who is holding it all together: the caregiver. And not many are talking about how to deal with the aftershock of the event or diagnosis, so I thought I would, and this is what I have to say:

1. Please do try your very best to take care of you.

Especially early on in this adventure, a lot of people said this to me, and I initially thought: “Yea right. And exactly how do I do this while I am putting out fires left and right?” Answer: There is no one answer. But for me, caring came in small moments:

In the hospital: Breathing exercises or brief meditations while he was  asleep.  Accepting the loving respite care of others, including entrusting the occasional nurses aid, while I took a short walk. Treating myself to an ice cream or good coffee or chocolate. Stretching. Napping when I could. Taking some vitamins, especially C and B vitamins. Taking Rescue Remedy, a Bach flower remedy. Allowing people to help in ways large and small: pay for a room nearby, bring non-hospital food, run errands when I could not be at home. Calling a friend and venting. Writing when I could.

At home: Continuing to meditate or have a spiritual moment when I can, including reading something devotional or inspirational, like the Daily Word from Unity. Walking, dancing, exercising released stress fast. Finding respite care–which wasn’t easy mind you, but so worth the effort. Tidying up my diet from the hospital habits of eating daily chocolate, but also allowing a nice glass of wine, a good cup of home-made coffee, an occasional treat. Napping when I could, resting as much as possible. Calling a friend and reporting in. Writing.

2. Acknowledge that you went through trauma too.
I’ve experienced  all sorts of trauma that colored my life long after the trauma was over. Violent assault, witnessing my husband die (twice!), witnessing violence and death of another, and more, they all contributed to who I am now as a person grateful to be alive and well. Yet the darker effects also color my life: tears, shaking, shock, feeling weak or ill–PTS strikes when I least expect it. And that is when I have to be tender with myself, let my self grieve or vent or just sit. I take time to remind myself: I’ve been through a trauma out of my control. But I am well in the moment. I can breathe in the moment. Life will go on somehow. Which brings me to…

3. FInd a way to release the stress of the trauma.
There are all sorts of therapies out there: Neuro-linguistic Programming (NLP), Emotional Freedom technique (EFT), Cognitive therapy, hypnosis, homeopathic medicine, energy medicine, and so on. How to sort out what works and what doesn’t is kind of squirrely. If you hear from a friend or trusted soul about a treatment that worked for them, give it a try. Yet, treatment alone is not the final answer when it comes to releasing the stress. That is when vigorous exercise or beating on a pillow or finding a place to yell and vent or telling my story to an understanding person or journaling or breathing exercises come into play. The stress is there, lurking like the  boiling lava under a volcano. Release needs to happen somehow: safely and incrementally so that there isn’t an utter meltdown of my system.

As per my usual posts, it is now a few days after the original start: Jim has taken more walks to a few more places. I am letting go my nervousness about his movement around town. And yet, I also had a sleepless night last night for not-entirely known reasons, so I am finishing this up after tossing and turning for a few hours. Life goes on and is improving day by day–miraculously so. Yet I know there is a ways to go in Jim’s–and my–healing trajectory. So I am willing myself to be patient with myself and with Jim.

I am taking a deep breath before I dive into the business of the day. A day that just might include a coffee break with Jim.

Be at peace within yourself, OK?
Elke

With brain injury, after the acute trauma has passed, there is no simple happy ending. Nope. Life is too messy, too colorful for just that.

There are days when I think, hmmm, things will get back to some kind of normal. Tonight, he took out a box of cans and bottles to the recycling bin. Today there was a romantic kiss in the tulips fields of our rural valley. We watched a movie tonight.

And then something happens: My love doesn’t recognize the street we’re walking on, even though it’s the same street we walked on minutes ago. He resoponds to a request with “OK,” then walks away without a word.  It takes us anywhere from 45 minutes to an hour to get him up and moving out the door to an appointment. He walks out the door to an unknown destination without telling me.

He is restless and physically strong, and so wants to keep on moving moving moving, and I cannot keep up with him. He is frustrated. I am frsutrated. We both want to move forward. We both want healing.

We come from two different worlds and perspectives: I see the outward expression of his inside-the-brain damage. I see the possible consequences if he is not kept safe.  He feels physical symptoms from the brain injury but does not always understand when he needs assistance. I suppose if he understands he needs no-one to help bathe him or dress him, he therefore is independent enough to be on his own. And as much as possible, I release him to his independence: a walk to the library across the street, a bit of time home alone as I run a quick errand–while I am nervous the whole 20 minutes or so.

Life’s complications continue unabated: There are messes like: The reams of paperwork submitted meant to find some care-giving relief have thus far failed to accomplish that goal. Our son has been helping the best he can, but will be moving soon, and I have been paying a little bit from the funds people generously collected for us. And if I cannot find coverage and company for my guy, I will not be able to work.

In the offing are un-attracitve realities of living in the modern world:  Foreclosure,  canceling my health insurance because I simply cannot afford it, and more. There are days when I long for simplicity, to just be and live and contribute to the planet as best I can with the gifts I have.

As a caregiver, I have one huge precious gift: The gift of my dear one’s life. But the privilege of relationship comes with a cost–well worth it, of course. I am a fairly smart woman, I will continue to figure this out. Jim is a smart guy, he will continue to heal.

Yet does the price of re-admission–his re-admission to life on earth–have to be so steep?

Caregivers of any one who have experienced death and rebirth are, for the most part, so thrilled to have the opportunity to care. But I want to state for all of us: We are also tired, tested, testy, and feel alone. In our lives, Jim and I are together again, and we are alone.

Alone together: the dance of life continues until life is no more. We’ll find out if it’s a happy ending or not by and by, I suppose.
Meanwhile, gratitude is here. Please understand that.

Kind blessings, Elke

Written at 3:33 AM Easter morning, 2012

Every night the world over, there are people who are  not sleeping when they ought to be, because they are worried.

They have loved ones whom they are caring for and for all sorts of traumatic reasons. They have new lives to figure out. They have bills to pay and no way to pay them. There is  little to no support for their care needs. Yet they have to get through, they just do. They have to bring their loved ones back to life.

They ask:
How do I do this? Why is life so complicated?
Who is my loved one now? Who am I now?
And: Where is everybody?

There are complications: There are other children to care for. or There might be elder parents AND a sibling or a spouse or a child to care for. Multiple care situations are not so unusual these days.

They may have a house that is about to go into foreclosure. or
They might be feeling not so well themselves.   or
How can they work? Should they work?

And once again: Where is everybody? Why am I so alone in this?

This is one hell of a club to belong to, and its ranks are increasing by the day….and sleepless night.

Sleepless Caregivers Club: I belong now.
And honestly? With all my spiritual knowledge, with all my trying to let go and let God, with all that I have experienced, I just cannot sleep. I lay awake, or sit awake or pace awake, asking most of the questions mentioned up there.

The current situation: Jim is doing pretty well, and has come to a place of some stabilty. I basically know who  and what level of brain injury I am working with. There is fogginess, then moments of grace, then back into the fog. He is often tired. He is more often restless like crazy. He wants back into a life of service, and does not know how to get there.

He needs 24 hour company, even though he believes this is not true.
And key decisions are all mine to make. It is too much to even ask him to choose either /or.

So as stable as it is, it is also a difficult time of sleepless wondering: What’s best now? What does he need? How do I keep him safe  without being a nag?

The complications:
Some of you may recall that almost exactly a year ago, I called a financial summit to state that our living expenses were far exceeding our income. Our home equity loan was maxed out. With assessments, community homeowner fees, insurance, lease fees for living on tribal land, and taxes, we were spending more than half our income on the house. This did not include utilities, or any other life expenses.

Advice was given: Foreclose on the house and walk away. Or do a “short sale and walk away. Declare bankruptcy and walk away.

But those options didn’t feel right somehow. So I crunched numbers, and we found new tenants to rent the house. We sold lots of our stuff, put the rest in storage, and left to tour the country in order to find an affordable new community to live in.

Great idea, and I am so glad we traveled. Made new friends and colleagues and learned a lot.

Got tired of the effort though, felt homesick for the Pacific Northwest and family and friends here, and came back to temporary lodgings.
We live now in the second temporary home. Owner has caregiving repsonsiblites of her own and desperately wants to sell it. We were helping her out by garden upkeep and keeping the place up.

And then I was thrust into the initiation that made me an official member of the Sleepless Caregivers Club. Jim’s damaged brain now  needs care and quiet, yet the right amount of stimulation and, well, you know the rest.

It is not working to be here in a very isolated area of the world, away from support.
Upon thinking long and hard, I’ve decided to move us to where there is plenty of support and a good community with good resources.
Anacortes is a wonderful town I have always loved. Went to find a home for us to move to in the walk-to-everything-zome. I figured, when Jim gets more and more independent, he can walk to whatever he needs.

Great plan. Visited the town, found a nice little house–and I mean little–right in the neighborhood I desried. The rent is on the outside of our budget: more than a third. And there is more downsizing to do…ugh.

And there is the LaConner house to deal with, with renters who are not keeping it up well. May even be running it down. Yet the bills are still there to pay, and the house is worth much less than what we are mortgaged for.

A full year after our choice to be creative and do something other than give up, I am ready to give up and give in. I literally do not know exactly what to do right now.
Hence this heinous club membership.

My compassion for the weary members of the Club is huge. I feel you out there. You don’t know what to do, and yet you think you must think of something–anything–to do.

So how about this: Lets take a collective breath. Than another one. Good.
Aw, damn. Its not doing me any good right now, that old trick.
But writing helps a little .
Knowing there are caring people who love me out there helps.
In the morning, I’ll see my sweetheart’s face. That is motivation enough.

But sometimes, one just has to be sleepless and in chaos.
And one is in good company. Caring company. We’ll figure it out somehow, won’t we?

blessings,
Elke

When one is volunteered into (read that as thrust into) the role of caregiver, one of the most exasperating challenges is decision making. There are so many rapid fire decisions at first: in the hospital, decisions of a life and death nature are thrown at one followed by decisions to control further damage, timing decisions, surgery or no, feeding tube or no, are the medications working or harming, and so on. With all the staccato incoming choices to make and hardly a breath in between, one’s mind goes into instant overwhelm. But as executive director in charge of, well, everything, what else can one do but decide, decide decide? Even the decisions which, in better times, are mundane take on huge significance: Should I rush to the bathroom while he sleeps? Should I nap now or fill out paperwork? He’s snoring again: does it mean anything? Whooboy.

When one is discharged from one “job-site” to the next at rehab, decisions do not go away. Since the one being cared for is progressing to life at home, decisions actually intensify in a way no-one can understand like other overwhelmed executive directors. As a caregiver exec, I ask: How long and how much and by the way the bills haven’t been paid in a month and does the social worker really get that he needs help and why is he acting that way should I tell someone and oh no our rental tenants called with a problem I cannot fix and who do I ask for help and oh no more paperwork to fill out where did I put that file and will I be able to work for pay again to pay these bills piling up and what does he need and is he ok and…?

After awhile, one is launched into either the big bad world or a world of opportunity: it’s the executive director’s choice.

So here we are. We are out of hospital, rehab, outpatient therapies and into our new lives. And in this new life, the decisions are mine to make–with input from Jim of course. Yet alas, a brain in healing mode makes decisions slowly or not at all. Even the either or question is out of the question for now. So I write list after list and tick things off.

The latest executive decision was regarding our living situation. It was time to choose what is best for Jim and what is most helpful to me. I chose community over beautiful view. I chose activity over quiet. I chose a small home over a place to spread out. I chose walking to everything over driving to everything.

Five days from now we move into a small house in the wonderful small town of Anacortes Washington. The house is in what I call the Walking Zone: spitting distance from a great library (Jim is really into libraries) and we can walk to grocery stores, health food, coffee shops ( for that all important decaf latte treat he seems to be obsessed with), rehab opportunities, a vibrant senior center (at 61, he can be a junior senior), a good hospital, swimming pool, gym, Zumba classes for me (hey I get something out of this too, right?) and a true working waterfront with shipbuilders and seafood processors and fishing and marinas. I am choosing to reach out to friends we’ve made over 20 years of living in close-by LaConner.

I feel like I am choosing life.

There are lots and lots of other worries on the plate, taxes and tenants and where is the rent money going to come from, etc. But for now, I will focus on our move, and put out other fires when I can.

For your information, and my joy, I will be working again in Anacortes: teaching, healing, and aura potratis. I will be writing, of course, as well as the most rewarding and challenging job I know: Executive Director in charge of New Life Creations, un-Incorporated.

Executive orders–well, make that requests–will be forthcoming in a separate email. Participate as you may. Meanwhile, may your decisions bring you to fulfillment of your dreams and goals.
Blessings,
Elke

Dear husband,

Welcome back from your 3 hospital stays. Welcome home from your journeys to other realms.  I am so glad you’re here, safe, under my watchful eye. And, to tell you the truth, I miss you.

I am in awe of you and your progress.

You, the man who was not to walk or talk now does both.

You, the spiritual teacher, are making it perfectly clear to the rest of us what true presence is all about. You are in the moment. You do not fuss too much about the future. And you honor the past in a sweet way, for instance: After the stroke, when folks from your past came to visit you in the hospital, I was astounded to see your remembrance of who they are, and in your quiet way, ask them about their lives. Though your life is more contained and a bit smaller now, you still have the where-with-all to reach out. To care.

Another example of this: We were sitting on the sofa, coffees in hand. I asked you a question I had not asked for a long time, “Is there anything you wish to ask of Spirit?” (our code-word for the Divine or God). Your answer: “Yes. I want to know what’s next?” And then you pointed to me. It seemed you were asking Spirit on my behalf, and about me. Very loving. The answer from Spirit, though, was about YOU. Spirit suggested that what  is next is your installation of new gifts you brought back from your trip to the brink. Once again in your lifetime, you journeyed to Heaven and decided to come back to Earth in order to serve and share your gifts.

So what can I say? It is beyond magnificent that you came back to serve, to teach, to learn, and install what you brought to your new life. As I said up there: I am in awe.

As well, I said this up there: I miss you. Mind you, the new you is so very very very welcome here. Yay! Yet I have my moments of grieving the old you. I miss our ease of communication, telling you something once, not having to repeat a number of times. I miss being your wife and lover…period. I am your caregiver now, and though there have been times in our life together when I cared for you when you were sick or recovering from surgeries, this is different and way more intense. The brain is a delicate and tricky thing to heal. I want to make the right choices and decisions and take the right actions. And I want to get this right, this giving-of-care is different–akin to bringing a  newborn home. Yes, I know you are fully grown. Yet you’re also new and wide open, and I am very protective of you. So the lover has taken a backseat to the caregiver, and that’s ok and appropriate, of course. And she’s in the backseat, not out of the car. But still…I miss her and she in turn misses her lover–you.

I miss the flow of our daily lives: We were instinctual with each other, as long-mated couples are. You knew my needs, knew my worries, knew my idiosyncrasies, my habits…and you knew how to be with all of these in a way no-one else can. I know you still have a sense of me, and care about me, but your focus is on you–and rightly so. You need to figure things out. You don’t have a flow yet. As you said to me today, you are walking in the fog, and things are shrouded. So you cannot be there for me the way you had been.  I’m just going to have to stand up straight and be strong yet flexible and be there for me the best I can. And I will seek out other ways to get the nurturance, the understanding I need. But there is a loneliness without you nothing can really fill.

I know you are new and different as well as the same sweet, brilliant guy I love. I love the new.
I miss the old, but like a person who has moved to a new neighborhood, and hasn’t made any friends yet, I will find new things to love and be joyful with in our new world together.

It’ll take time. It’ll take patience. It’ll take what we already have onboard: our love for each other.

Welcome back baby. And welcome to your new life. I love you.
Elke

This is the start of day 3 back at our temporary home by the sea, and I have fully entered the vortex of Jim’s healing care. Day one was spent in quiet panic on my part:  If left unattended, will he wander off to the often-busy street in front of our house? How much can I leave him alone? How do I get a shower in? How does he get a shower in?

That last one makes me smile a little: While at rehab, he insisted on showering alone, no help thanks, and proceeded to use a shampoo bottle as soap, plus managed to flood the floor of the bathroom. So….right now, I sent him to our shower and oops….be right back…need to check on the guy

OK, as per usual, its taken me some time to return to this missive. 2 days time, actually. The man is resting in the sunshine of the morning living room, and I finally, finally sent off a wad of paperwork necessary to apply for possible home health aid. The whirling vortex of “oh boy, what next? ” has settled down a bit. Jim doesn’t seem too keen to leave the house unattended, which is a relief. Yet he does wander aimlessly at times, until I stop him to ask: “Where are you going?” or “What are you doing?” So far the routine of the day has coffee and breakfast and reading the paper in the morning of days we do not have appointments, and then a walk is in there somewhere, and maybe “gardening.”

Ah you noted the quotation marks around the word gardening. Very perceptive of you. Our first excursion into the huge established garden was rather, er, problematic. You may recall that part of our agreement with our generous landladies was to keep up the garden in exchange for a lowered rent. His brain had retained the memory of his last garden outing. It was winter, time to trim up and clip off all the unnecessary or dead branches from the fruit trees, rose bushes and other bushes. And here is what actually happened: He wandered into yard, stopped by a cart with some small women-sized gloves, put them on. Picked up some shears in one hand,  picked up some small clippers in other hand. Wandered to center of garden. Stood for 10 minutes, looking very confused.

I tried to direct his actions, “Look, here are piles of your last trimmings–lets bring them to the stick pile”. He looked at me, shook his head no. “So much trimming to do!” and proceeded to a nearby bush that had already been properly trimmed. I grabbed his arm, tried to re-direct. He kept on clipping, and took off a few extra branches. Thankfully, this looks like a hardy plant, so it’ll turn out fine, but re-directing the man to something more useful is like redirecting a huge container ship in a harbor. It takes lots of time, and someone to act as the “tugboat,” steering him in a new direction.  Eventually, he settled into loading up the wheelbarrow with the already trimmed twigs, yet we ultimately had to give up entirely for the day because he got confused again, mid-task.

And so it goes: Every day presents new possibilities for learning, redirecting his brain, discovery. Small victories occur daily:  He showered by himself yesterday, and didn’t wear socks in the shower. Dressed himself too, and not with 3 pairs of pants and 3 shirts on…no, I think he actually had the correct pant-to-underwear-to shirt-ratio–but I restrained myself from peeking and counting.

As for me, the exhaustion isn’t as intense as even a few days ago. I am sleeping rather well in our own bed.  But I am dealing with frustration and lots of figuring out. For instance, rehab specialists of all kinds insisted that simplicity and order is best for brain injury healing. They strongly advised against clutter. Yet honestly, we had only been here less than two months before this adventure, and neither of us had the time to completely unpack our boxes of possessions. Therefore, there are places in the house where order would be great–such as the walk in closet near the bedroom–but instead there are unpacked boxes, and disarray from neglect and hurried searches for things I needed for him or me. Honestly it’s a bit of a mess. And I now have less time to straighten things out.

But as promised to so many of you, I will ask for help. Next week, a wonderful woman will be using her vacation days and flying out from her home in Chicago to help me organize a new life. I’d met June only once in my life during her aura portrait session with me. It must have had a powerful impact on her, enough so that a couple of years later, she and another long-time client put together the pay-it-forward fund so many of you  generously contributed to. And now, June is offering her executive assistance to connect the scattered dots of my semi-organized picture. As we spoke over the phone to plan this out, I stated how difficult it was for me to come up with everything I might need–I  mean surely I can clean the house, and cook and shop for us, and surely I can also keep up with bills and paperwork and organize Jim’s life and care and appointments and….?

There was a respectful pause on her part, and then June stated one of the more perfect analogies to the situation: “Elke, consider you have in front of you a 3000 piece puzzle that is your focus on Jim’s healing. Now also consider that while you are trying to put together this puzzle, you are also trying to organize, do daily chores, and so on and so forth. It is too much, my friend.”

Why yes it is. So help will be asked for, and accepted. June has put together a site that is up and running and will be filled out with more information as to how you can help us out: https://sites.google.com/site/volunteerforelkeandjim/home. Thank you in advance for any and all suggestions and responses. I am still in discovery….

I just peeked into the living room, where Jim has moved a chair into direct sunlight and is reading a book entitled, War of the Worldviews, co-authored by Deepak Chopra and physicist Leonard Molodinov. Honestly, I don’t know how many pages he has turned or read, yet it is a peaceful scene, and my still-brilliant man is in his sweet spot.

Be blessed in your sweet spot too, OK?
Elke

While Jim “meditates” (naps), I thought I’d put out a quick post:

We’re outta here!
We came home from inpatient rehabilitation yesterday evening after a flurry of last minute therapist’s assessments and “training” and advice. Good thing most of what they had to say was  written down because my head was in a whirl of overwhelm–and still continues to be so. They say that brain injury is the “hidden injury” in that a person looks “normal” after the trauma. And that is so true in the case of my Jim: When I woke this morning to his familiar face, I loved what I saw. And then the  day got going, and from the start, as he wandered with 3 pairs of pants in his hands, and one sock on his foot, and refused my help to get dressed,  I saw how much he has changed. It’s going to take a lot of time and patience to establish a “new normal.” Hooboy.

Yesterday, after we got out of the “popsicle” (his first words in hospital, remember? ), I drove to a store and pharmacy to pick up his meds and a few bits of groceries while he napped in the car. As I flew around the store, I felt guilty as if I were a neglectful mom who left her baby napping in the car. I kept running to the front of the store, peering out to the car to see his head tilted back in exhausted repose. Finally picking up the meds and checking out, I thought, ohmigod,ohmigod,ohmigod, I am not ready for this! But I have to be, there is no choice.

He awakened  from the car-nap, and said: “Walk! Lets walk!”, so I drove to a park with a lovely waterfront path and promenade, and we walked hand in hand like  the 2 old lovebirds we are. Not much seemed different for a while…and then a bicyclist yelled “On your left!” as he tried to pass us from behind, and Jim’s stroke-symptom of “left neglect” showed right up: He didn’t move, he didn’t notice someone passing on the left. It’s not that he can’t visually see out of his left eye, by the way. It’s just that this brain is not processing activity occurring on his leftside. So I moved to his left side, and gently nudged him out of the way. The bicyclist shot me an angry look as he passed. Guess I might have to get used to that.

And get used to people just thinking he is a guy with a brain that functions well. Outings of any kind will be restricted to simple activites: shopping after hours, therapy  and doc visits. I promised to take him to listen to a friend’s blue grass band at a local deli: his memory is quite good in some respects–he’s been talking about this since he was in the hospital. But I don’t know how it will go…I don’t know how any of this will go. It is wait and see, and adjust and see some more. And make mistakes, and see the consequences.

By the way, thanks to all of you who say: “Take good care of yourself” and “advise me to “Ask for help”  I appreciate those words, I really do.  Yet implementation is much more difficult than you can imagine: Do I shower when he naps? What is self care now? Who can I ask for help and for what? Really, I would love to ask for company to be with the guy, and I will….but it will take a person who knows how to be with a brain damaged person. Quiet. Present. Able to anticipate Jim’s confusion, and bring him some clarity. In other words, I don’t know who to ask for that kind of help yet. I’ll let you know.

There is a caregiver program I applied for, and it is in the works. But I was sent with no other avenues of that kind of help or relief…and I don’t know if we will “qualify” yet. So I am nervous, I am hopeful, I am….ya know, what I  really am right now is on ovewhelm. Which might be  true for a long long time.

He’s up and wandering…so gotta go.
love,
Elke

The dark gray Bellingham morning didn’t promote wakefulness. Jim slept 18 miles away in a semi-private room at St Joseph’s Inpatient rehabilitation center, and I pried my self loose from bed and one of the first good night’s rest in 17 days. I wandered around the house, trying to remember what I promised to bring to Jim for the day: Sunday paper was on the docket, as well as better coffee–I’m a coffee snob, and because the man is married to me he has become one too.

It’s the second full day at rehab, the place to transition back into life after brain damage renders life more challenging. All sorts of folks are here in all sorts of shape: in wheelchairs with bike helmets on, oxygen tanks follow a few, there are the newly adapted to a walker.

Physically,  my sweetheart is in pretty good shape. He walks slowly, but determinately, and is now sitting reading the Seattle and New York Times with me…this after riding a recumbent bike for 3 miles. He wore the physical therapist out, she joked. Yesterday one of the nurses asked, upon watching us sitting around a puzzle and drinking tea: “Who is the patient here? ” I took her seriously and pointed to Jim: “He is.” “Oh,” said she,  “I thought you were guests.” Nice compliment, but the fact is, Jim has significant brain injury that is showing up in ways that belie his physical appearance.

This morning, I arrived later than I wanted to, having completely forgotten daylight savings time. I entered his room as he was working on getting dressed with the assist of an occupational therapist. He was putting  hospital socks over his regular socks, and then sandals, then changed his mind and took off one sock, then looked confused then took off one shoe. I’m not sure what was going in there, but it is clear that there was some disconnect between the activity and the muddle in his mind. And so it went the rest of the day.

Eating is very determined, as if he hasn’t eaten in a long time. Impulsive behaviors spring up like this: eating is a focused task, and nothing will keep him from the food, so don’t try to interrupt with too much chatter. In fact, its best not to interrupt any of his activity with another activity–the word is perseverate: to “repeat or prolong an action, thought, or utterance after the stimulus that prompted it has ceased.” Meaning, if he was talking about the recent solar storm, and you’ve switched topics to what is for lunch, he’ll keep talking  about the solar flares and the aurora, and so on…long after the discussion is over. So I try to keep to one topic at a time, and give it lots of time.

Speaking of time; depending on the time of day and how tired his brain is, there is a timing delay for his responses to questions or comments–anywhere from 2 seconds to 30 or more seconds between my part  of the conversation and his, almost like an old timey long-distance phone delay. So patience is of essence, as well as presence.

Presence….some of you may remember the phrase, be here, now?  The phrase was also a title of a book penned by Ram Dass: the guy who experienced his own stroke a decade ago, yet continued to be a spiritual force for good. Jim too is a  spiritual teacher. His new way of speaking and acting has me being very present, and his soft voice has my attention–what did he say? I always want to know.

I admit there are times though, when I want JIm to be with me the way he used to be. I want long discussions, long walks, a glass of wine and dinner sitting on the sofa, where we’ve eaten dinner since our kids left the house. But instead, I have who Jim is now…and of course it is soooooo good that he is alive! I just miss the former, and I suppose he does too. We both are up for the new him though.

Right now, it is later in the day, and I see how tired he is–the left side of his mouth starts to droop, and a little bit of saliva escapes when he needs a rest. Time for me to go back home and do laundry, and maybe pay a bill or two. I haven’t even looked at the mail for  almost 3 weeks, yet life does go on.

I hesitate to leave though. Jim is looking fragile, and if I could crawl into his tiny bed in the semi-private room (read that as NO privacy whatsoever), I would . But there is something about making his own way at night. He is an independent kind of guy. So I leave him to the able care of the staff at the hospital, and I go home to an empty house.

My friends. thanks again for your compassion and care. You’ll never know how much that helps. Keep that energy  flowing, because love is all there is.
Elke

It should be the end of Jim’s 2 hospital stays. He’s restless and so am I.  But instead of planning our escape from the cardiology ward jail to rehab 2 hours away, we are playing the waiting game. In short, his prothrombin time or pro-time or International Normalized Ratio–INR– is not within a therapeutic range for a guy with an artificial heart valve. So it  could be dangerous to send him off this way: loose blood clots = high stroke risk.

Hurry up and wait, hurry up and wait, hurry hurry hurry, wait wait wait some more–such is the rhythm of hospital life. It’s either an emergency, or, once the emergency is passed, a wait for lab results, analysis, doctors orders, and now, escape and release. So we wait. Again.

I know it’s the safe thing to do. Since I will be his “personal transport” to rehab, if he had a stroke on the way there or anytime in the near future, it would be, er, not ideal.

Right now he is sitting next to me reading Ram Dass’s Still Here, an account of spiritual teacher Ram Dass’s stroke and life lessons on aging. Yes, Jim reads. The man who’s verbalization skill was in question started reading a few days ago. It started with one simple word:

Two days after he was airlifted here, I had a “night off” while his sister and our son held watch. Restless and agitated, I wandered the urban landscape in search of a clean shirt from a thrift store.  I held out a little challenge to the Universe: “OK, Universe, this sucks and you owe me at least one request: I want a blue shirt with some kind of inspiring design on it for under $10 please.”

What the heck, why not ask for something silly to lighten up a not-so silly situation? Among the chichi city shops was a cheap clothing oasis with nice looking “gently used” fashion. I wandered up to a rack and found a blue sweatshirt with the word LOVE emblazoned on the chest. Yep, that oughtta do it.

Next day I stood at the foot of his bed and and pointed to LOVE, and said,  “Hey honey, this is what I think of you!”   he peered through still unfocused eyes. “Love me?’ he murmured. I was over the moon: the man reads!

Later his nephew brought him a balloon with a picture of a goldfish with bubbles burbling out of its open mouth:  “Hope you’re feeling better.” He read the balloon right after nephew gave it to him and…he was off like a rocket reader.  I bought him the Sunday Seattle Times: ‘Oh goody, the funnies!” And now he reads Ram Dass, Popular science, Discovery magazine between naps and short walks around the floor, deep knee bends (his idea)…all waiting for the release to the hard work of rehab.

The rhythm of life as a hospital wife is ever changing, yet there are a few truths I’ve discovered:

* If you sleep elsewhere, be sure to arrive early if you want to see a doctor…especially if they also perform surgery. I’ve met with docs as early as 5:30 AM.

* You want time off? Good luck. But if you can get it,  it’ll probably be after-hours, since the parade of specialists and docs usually come  around during the day.

* You want someone you’ve been waiting for to stop by? Leave the room for a potty or coffee break. Works every time.

* Just as one would do with a newborn child, I try to sleep when he sleeps. And sleep is a relative term. “Rest” is more accurate; although I never feel rested. Sleeping in a hospital reclining chair is more like a series of 20 minute power naps.

But life is continuing, his health is emerging, and even though it feels a little like prison, it’s a prison with good company: my  wonder-guy Jim.

hospital lady in waiting,
Elke