The Fight Of My Life: Living with Traumatic Brain Injury

Day 3 with Dad

noreply@blogger.com (ResilientHeart) — Sat, 18 May 2013 16:16:00 +0000

Day 3 with Dad (Friday, April 19, 2013)

I wish I had happier news that Dad had turned the corner and things looked up, but that was not to be.

Reluctant Heart had promised to meet with Richard, Dad, and I FIRST thing this morning to decide on Hospice; he chose not to show up until late morning. He told us he wasn’t ready for Dad to go, I was standing by Dad’s side, holding his hand, looking at his unresponsive body and said, “But Dad is.”

Richard spoke up stressing the need to honor what Dad wanted; it was not up to us to decide. Richard shared about how his own brother denied their Mother her wishes, and when she was in her final days garnered all her strength up and asked him, “Why are you doing this to me?”

Reluctant Heart grew defensive saying Richard wasn’t part of our family and didn’t know our Dad the way we do, Dad has always bounced back. As he got up from his chair, Reluctant Heart said, “I’m not going to play God” he said my name, and then murmured the decision was now ENTIRELY mine…OMG

I was asked to wait until Reluctant Heart talked to our uncle who was planning on arriving in 6 days to see Dad, and before he left he started crying, I started crying and I agreed to wait.
But I knew.

I had stayed in Dad’s hospital room overnight, listening to the gurgling in his throat, hearing the painful coughing. They were pumping him full of fluids his body could not process and then tried to drain it out of him. He was swollen, unresponsive, unmistakably suffering. They’d already taken 15 pounds of fluid from him his last hospital visit. This is the very definition of insanity; doing the same thing over and over again hoping the results will be different.

I knew.

I knew.

What was I waiting for?

The pain of letting go and the fear of the unknown were entirely overshadowed by the pain of watching him suffer. Who was I to ask him to stay because I wasn’t ready or couldn’t let him go? The piercing truth I told Rebel Heart over the phone prior to our arrival rang in my head like church bells; we’d never be ready.

Not too long after Reluctant Heart left, I asked the nurse if we could initiate Hospice. A dear lady from Hospice met with Richard and I, gave us all the time in the world to ask questions, discuss it, make sure. I looked at the Healthcare Power of Attorney and I was able to make the decision with my brother, or, by myself.

I knew it was the right thing to do. I’d weighed it in my heart for years. We had our miracle five years ago when Dad wasn’t supposed to have survived his heart problems. But he did…at such a painful, painful price…and maybe, just maybe, because of the suffering I’ve had with TBI could I see the invisible struggle he was living in at 90 years of age.

Dad was moved to Hospice the same day, they had a bed available (one out of only have 15 beds), they are the only Hospice for two of the largest counties in Washington State.

This Hospice was the same place I’d taken a pivotal, healing, grief recovery class at many years ago. That healing is a foundational part of my life to this day. I had the benefit of unshakable, peaceful knowledge; they would take excellent care of Dad.

Knowing Dad was moving to Hospice, Richard and I left the hospital so I could shower, nap, eat and then return to the hospital for his move.

I awoke from the first good rest I’d had in weeks to a terrible, terrible voice mail from our uncle. “I’ve gone to great lengths to get out of Boston, please don’t kill my brother before I get there.” Yes. He said that. It’s still on my voice mail.

I know about the Boston bombings. I cried, I was horrified, as was the rest of the world, but, the hospice worker yesterday told us Dad was living his final days…how is it right of me to ask Dad to continue to suffer, go against his legal wishes, because this doesn’t fit into his travel plans? Wow. I traveled from Montana as soon as I could and even with that, I knew Dad could have died before I got there. If so, the poor planning would have been on me.

Dad's doctor had actually signed the release papers yesterday (Thursday), I didn’t know that. They knew. Dad’s sister knew. As God as my witness, I was not killing Dad. It was in God’s hands in accordance to Dad’s wishes. I knew no other way of honoring him than doing that which hurt us the most.

Who was I to tell Dad to stay and suffer because I couldn’t let him go?

I didn’t know how many hours or days Dad had left; neither the doctors nor I had the insight on which to rely. We took it one step at a time, one painful breath at a time.

My conscience was clear, but feared a war was about to start…

That voice mail sent me into a crying spree I couldn’t stop. As if I wasn’t already feeling the weight of the world…

Days 1 and 2 with Dad

noreply@blogger.com (ResilientHeart) — Sun, 12 May 2013 22:53:00 +0000

Day 1 with Dad (Wednesday, April 17, 2013)

I was relieved and glad to get to see Dad myself, there was no peace of mind like it.

Dad has been through a lot, his eyes were not shiny blue as we knew them to be. They were overcast and that may have been due to head trauma from the seizures. Dad knew I was there, I watched his breathing change as did his eyes. He was still in there, just unable to talk.

Wiping drool from his mouth I watched him mouth ‘thank you.’ I also watched as the nurse put a tube in his throat to clear out the phlegm, I could tell it was painful to him because how he moved his legs inward as if to cringe. I watched as he moved his weak right arm upward after the nurse had turned away, I mentioned it to her. She asked if his face itched and she scratched it for him and adjusted the tubes. She asked if that was better and he seemed settled.

I called his Sister, who had been a nurse in WWII, because she wanted to say her good-bye to him. My Reluctant Heart brother didn't want to do it, couldn't do it, or whatever. I didn't either, but did it anyway…definitely one of those difficult life moments. Dad showed no signs of response at my holding the phone up to his ear so she could speak.

I knew he was still in there. It was wait and see.

Dad’s doctor called me this morning saying today’s EEG showed no change from yesterday. He said we should initiate hospice anyway, and I received a call from hospice, Reluctant Heart and I will sign papers tomorrow (Thursday at 3pm). Dad will stay at hospital until a bed is available at hospice.

They’ll move Dad tonight, around 11pm to another floor, his care will be less intense because he’s at that stage where he doesn’t need intensive care.

As long as life holds him here, I’ll fight for him. When it’s his time, I will help him go.

-------------------------------------------------

Day 2 with Dad (Thursday, April 18, 2013)

Rough day with Dad, he was clearly in pain when coughing and is extremely weak. No real change, we opted out of another EEG after meeting the rep from hospice this afternoon…he asked in a far kinder way than I can remember…would having the test results change any of the outcome for Dad? Probably not. The hospice rep also said in his opinion, Dad is in his final days.

So we sort of decided on Hospice. This is the most difficult decision. Ever. Reluctant Heart brother needed time overnight to decide but most likely will be agreeing to send him to hospice first thing in the morning. I know it’s not the end of the world, it just feels that way. Reluctant Heart brother said he’d call Dad's brother tonight. I asked Richard what he would do and he said we have to go back to what Dad asked for in his Living Will/Advanced Healthcare Directives.

My heart and mind are heavy. It's hard for me to breathe, I wonder if they can put me on oxygen and sedate me!

Richard and I were in the room alone with Dad after our meeting with hospice rep and I asked if I could have a few moments with Dad alone. I told Dad we’re going to help him, if it’s his time to go, we will help him go. If not, then I’ll fight for him, after all, we are a stubborn lot! I said just think of who you’ll get to see if it is your time (probably stupid of me in retrospect!) I said other things I can’t recall right now…I started crying, and he started crying. This was the SECOND time I saw him cry today, the first was when he was coughing hard, but this time he opened his eyes ever so slightly.
Exhausted as I was, I stayed overnight in Dad's hospital room. I told him I’d be there whether it’s his time to go or stay, and, I told him it’d be okay for him to let go. We’ll be okay…

Hospice care removes all life support and offers small doses of morphine, so he will not be in pain. I so wish God would just let him pass away in his sleep. This is the most difficult thing I’ve ever experienced. I’m taking my phone and charger to plug in overnight, I doubt I’ll be getting much sleep. Hospice allows family to be there 24/7 from what I understand. Gulp…

The decision has been made, in my book, we just have to honor it and follow through.

Calgon, take me away…

Ready to Write

noreply@blogger.com (ResilientHeart) — Fri, 10 May 2013 02:21:00 +0000

A lot has happened since I last wrote.

Dad had been in and out of the hospital well over one month after he celebrated his 90^th birthday. My brother (Reluctant Heart) called with updates; I took frantic notes just as I’d done in the past.

This time, in addition to his existing major health issues like Congenital Heart Failure, Dementia, Incontinence, and everything else he’d come to live with in the past, a terrifying new landscape emerged: C. Diff, Pneumonia - and then - Seizures.

I spoke with Dad’s Neurologist; there was no sign of stroke, no fluid on the brain and no way to measure the damage done to Dad’s brain. They ran several EEG’s, there was little, if any, change. The only other thing they could do to find the cause (for someone Dad's age and with Dementia) would be a spinal tap. I could not agree to make Dad go through that painful procedure.

I grew restless. Reluctant Heart brother sounded hopeful over the phone since Dad rebounded after his first seizure, but that was it. The seizure activity grew to where he could no longer talk on the phone. I couldn’t stand it. I had to go see for myself, especially with a heart and mind deeply etched with devastating Brain Injury experience, I was on high alert.

I couldn’t sleep.

I paced.

I stared out the window. A lot.

Who was I kidding?

I wasn’t doing a darn bit of good here, I was already there; I might as well just get my body there too! I took my Sister-in-Law’s Mom’s advice to heart about being helpful from a distance and thought she was right, but the inner message was unmistakable and unrelenting, I HAD to go. No reason or excuse could override this crystal clear, deep sense of knowing.

Shortly before we left, my Rebel Heart brother had me on speakerphone in Dad’s hospital room, I told Dad I didn’t know how or when, but I’m on my way, I have to be there. My brother said Dad coughed and opened his eyes a little; we believed Dad knew what I’d said.

I told Richard I needed to go, he could stay and care for the animals, but I have to go NOW. He said whenever I want to go, we’d go. I looked at the calendar, with appointments scheduled for the next couple of weeks and thought quietly about logistics. Easy. I’ll just postpone all my appointments to the first week in May. Done.

Remarkable speed and focus getting the house prepared were on our side, we had a mission, and there was no way Richard would let me drive it alone. Wise man! :) Richard asked a friend to look after the cats and horses, he told us to not worry about the animals…that was such a huge gift.

I called Dad’s Assisted Living facility since my Reluctant Heart brother told me he read that they allow family members to stay overnight for free. I spoke with the Executive Director was gracious, kind, and understanding. He welcomed us to stay and even have meals there if we wanted.

Instead of us heading out the weekend of April 20^th, we left abruptly Wednesday, April 17^th around 3:30 am! The 12-hour drive was quite uneventful, for which I’m grateful. A distinct lack of excitement was quite a nice respite.

We went straight to the hospital, I was eager to see Dad and completely unafraid of what I might see…

(To be continued…a lot happened over the last few weeks and I want to be sure to honor the insight, truth, and beauty in this story by allowing this message to unfold in its own time. Thank you in advance for your patience.) :)

In the Waiting

noreply@blogger.com (ResilientHeart) — Mon, 15 Apr 2013 15:53:00 +0000

Dad is still in the hospital and we are waiting, just waiting. Over the weekend I re-read Dad's Living Will/Advanced Health Care Directives. I cried. Last time I read it, I got choked up and put it away. There is no putting it away until I can handle it, ready or not, the time might just be now.

Should he be deemed terminal or comatose by two physicians, Dad wishes for no food or fluids to be administered. At this point, the legal determination has not been made as we waited over the weekend for his regular doctor to return.

Right now we're paying $150 a day to keep Dad's private room at rehab, and, we'll still be paying his rent at his assisted living community until direction is found soon. This is clearly just for a season. Fortunately Dad has good health coverage through his previous employer and that will help only with the hospital bills. That's a huge godsend. Everything else is out of Dad's pocket.

Dad's doctor over the weekend told me they have given Dad some fluids, not much. They have not given him any nutrition at this point. The Cardiologist signed off, Dad's heart is STILL good.

So we wait.

My Sister-in-Law's Mom called, I have not spoken with her in years. She has dealt this kind of stuff with her own family and is now taking care of their elderly neighbor. She walked me through some of this journey and suggested I ask the doctors for clear instructions about what the next step will be.

She did well to calm my fears and guilt about not being there. Up to that point I was ready to bolt (fight or flight). She said sometimes we can be of better use where we are. That sunk in. I am the one on the paperwork end of things, and would need to take my computer, all Dad's files, find some place to stay out there, deal with the traffic, the difficult emotional side of this and still try to function well with a TBI.

She helped me see the benefit of those who are in this line of work of elder care and hospice to allow them to do the loving and caring support they're called to do. It was a very beneficial hour conversation from someone I would actually listen to, who doesn't tell you what to do, and, she is probably one of the sweetest and yet most authentic, people I've ever met.

She also mentioned how at the beginning of each day we get a budget of energy to work with. I laughed and said, "Welcome to my world!" I told her I still have about 4 good hours to get everything done I need to in each day. Just hearing these words from someone who relates helped to melt the jagged edge of guilt, helplessness, regret, and self-imposed pressure. Her husband had a TBI years ago, shortly after my TBI...he and I used to compare notes about this crazy new invisible world we lived in.

She also spoke of the difficulty of maintaining two separate households, two separate bill paying systems, dealing with mail, and all the paperwork. It is a lot to handle.

So for now, I stay. I am the hospital point of contact now, my Dad's ex-wife was removed as she's sick with Shingles and doesn't need that stress and overwhelm of being the first person called.

Naturally, it is difficult to take care of myself at this time, I am trying though, TBI requires high maintenance anyway. There's a lot to this situation I cannot change, so rest when I can, but also, I don't feel bad for not being able to. It's hard to sleep anyway, but with this, even more so. I've spent an inordinate amount of time staring wide-eyed at my digital clock watching the minutes tick away.

The opportunity to catch up with naps during the day hasn't quite been there. I lie down out of exhaustion, but the phone rings and I can't ignore it. I know this, too, is for a season and I'm okay with it.

This all feels overwhelming, scary, it brings up a lot of issues laid to rest and yet we have to just wait. I try to learn to let the feelings stay, to accept the discomfort. This is just not meant to be an easy process and I am even okay with that...and trying to be okay with the waiting.

I know, without the shadow of a doubt, I don't want to die like this. I don't want to put anyone I know through this, the anguish is huge, nearly unbearable at times.

It's Fried-day!

noreply@blogger.com (ResilientHeart) — Fri, 12 Apr 2013 19:12:00 +0000

It has been a long week with Dad going from rehab back to the hospital to rehab and back to the hospital again. As of this moment, he has been in ER all morning, having just gone back to rehab yesterday afternoon! I spoke with his nurse just about an hour ago.

It’s seizures again (not sure why he’s having seizures only at rehab and not at the hospital), no one knows what’s causing them. Dad is able to move all extremities, open his eyes, but he is not responding to questions.

He is very restless when he does wake, he’s on Valium and is sleepy, but when he wakes, he tries putting his feet off the side of the bed and starts pulling at things. They expect to move him out of the ER sometime today, they’ve run all sorts of tests and everything is normal or in the good range.

Reluctant Heart brother has needed to call the Attorney to update Dad’s Will and documents for quite a long time, despite serious urgings. Of the four of us adult children it goes without saying, we know three of the four of us have Dad’s best interests at heart. Rebel Heart is the one outstanding…so, we will see how this plays out.

I emailed the Attorney letting him know what’s going on with Dad. I asked if Dad’s current will would be void because Dad wrote on it, dated it and initialed it but never made legal changes, he said a judge would have to decide that. But, in the event it is invalid, state laws mandate the estate would then pass to his children. That was a welcome relief…hopefully meaning Rebel Heart won’t have need to sue.

Myself, I’ve had a huge headache all week. I spent a little time Saturday in the garden. That was all it took, I was in bed all day with several ice packs and finally took something for it when it refused to lessen on its own. Saw the Doctor on Tuesday to re-do the saddle-less stirrups Cervical cell swab (the tests came back inconclusive last time…damn it! Once is enough!)

I asked my Doctor about my neck and we looked into my file which showed I did have an MRI done last year? The Neurologist believes it’s TMJ so, first is Physical Therapy. I’ll be starting next week and then go back to see my Doc in two months. My Doctor said she could give me a shot to get me out of this flare up, I declined.

The MRI I had in 2009 I do not remember that Neurologist telling me about TMJ so I’m curious. According to last year’s test, there is significant malformation like Arthritis. Hmm….not so sure. I often have excruciating pain when I bend over like when I clean the kitty litter boxes or garden. Wowza! But I never have jaw pain at all. We’ll see.

I haven’t done much else than make phone calls, pay Dad’s bills, and get buried in paperwork. But, there was something neat that happened yesterday. A little Pine Siskin hit the window, Richard went out and saved it from the kitty, held it and put some water on its beak. It drank the drops of water but didn’t move much.

We were afraid it has broken a wing. Only in t-shirt, jeans and socks, Richard said he was going back in the house so handed birdie sunshine to me. I held it real still, talked to it and was a wind breaker since it’s been cold and windy. I tried putting him/her down once but it looked like the little fella was shaking, so went back to holding him/her.

I watched as those tiny eyelids slowly closed as the birdie slept in my hands, what a huge message of trust. It was quite beautiful. They say a bird in the hand is worth two in the bush, but I’d say a trusting bird in the hand is pretty priceless! I thought of how important rest is to any living thing that has faced trauma.

After some time the little bird woke and was much more alert, I lifted my hand into the warmth of the sunshine and waited. He/she climbed up the incline of my fingers and flew away. To be connected to life like that is a rarity in this shut-in world of mine. Definitely a highlight of my day/week.
How are things in your worlds???

Of Dreams and Nightmares

noreply@blogger.com (ResilientHeart) — Fri, 05 Apr 2013 03:22:00 +0000

I decided against leaving this event, or events, to the ages; nothing is quite as unsettling as nightmares based in reality. I wasn’t sure I would want to remember. But then, I thought if this happened to someone else, what would I say, how would I encourage them?

If this had happened to someone else I would say that this is triggered by dealing with Dad’s affairs and being forced to work with (or whatever…) my family. Sigh. Indeed, it is true.

I have three older brothers, all of us adopted. When people would say I was the ‘Princess’ and they protected me, I’d laugh and say, “No, I learned how to fight.”

The youngest brother, 18 months older than I, I’ll call Rebel Heart. The middle brother, 8 years older than me I’ll name Religious Heart, and the eldest brother, 9 years older, I’ll title Reluctant Heart.
In this mix of differing personalities and experiences, Rebel Heart was the one I dreamed about last night where, in back to back nightmares, I was trying to get away from him, as happened in reality, my life was at stake.

In real life, he was Dr. Jekyl and Mr. Hyde personified a hundred times over, kind when he wanted something and nothing short of a monster when angry. It was one of these enraged times I yelled back at him, “Go ahead.”
“Go ahead and what?”
“Kill me. You know you want to.”

It is a strange, bewildering place to grow up with a violent human being with whom you’d once been so closed to that people thought we were twins. To what extent does someone ‘get over’ acts of blatant cruelty? I wonder if there is indeed healing for some things in life.

So, dealing with Dad’s health and affairs a LOT of stuff is bound to come up. Dad and I have NEVER been close, I can’t say he’s ever had friends, but, Rebel Heart and him are quite a dynamic duo of toxic abuser and enabler, even with my Dad at 90-years-old. Personally I can’t relate to living in anything but being terrified all the time.

When I was in junior college I would get up before everyone, go to school and hang out in the Student Union Building, go to classes and then stay at the campus library until it closed around 9 or 10 pm. Home was anything but.

Twenty years later, I’m still running away from him, just in my nightmares that are always just as violent and disturbing. I struggle with a lot of feelings especially when Dad did nothing to protect me but acted like a hapless victim too…so somehow that made it sickly alright and allowed it to perpetuate.

I find it ironic my Dad’s life is in my hands, and that when he suffers I can’t sleep at night. Weird, huh. He never lost sleep over anything in my life. Ever.

These feelings, so many things bubbling to the surface. It is grief. It is unresolved pain. And perhaps, there are lessons to be learned and wisdom to be gained. Perhaps I can look at them as Pema Chodron suggested to a childhood friend of hers, that when she dreamed of monsters, she was able to look at them instead of being chased by them.

Perhaps, by abiding with the nightmares and not trying to shove the emotions back down in deep storage, maybe I’ll grow a little stronger…

There is still something deeply disturbing about growing up with someone close to you who is capable of cruelty to animals and humans.

If I were on the outside and a friend was sharing this experience, I’d tell her how remarkable it was she survived it all, didn’t commit suicide and didn’t go the route of causing other people harm.

And, I’d say, it was probably her own natural instinct of self-preservation that made her get sick every holiday season the family would get together. That’s a hell of a lot to go through and then have to act like some god-damned floorroom-shiny-Christian-we’re-perfect-there’s-nothing-wrong-with-us ‘family.’

I’d say good for her for never giving up, for discovering her own Resilient Heart in the harshest of circumstances.

Amazing Video!!

noreply@blogger.com (ResilientHeart) — Thu, 04 Apr 2013 22:18:00 +0000

I tried to re-blog this from http://lifewithheadinjury.com/2013/04/04/amazing-video/ here, but seems I can only re-blog directly via WordPress. Please share! :)

http://resilientheart.wordpress.com/2013/04/04/amazing-video/

Spring

noreply@blogger.com (ResilientHeart) — Mon, 01 Apr 2013 03:35:00 +0000

I was born in the spring and seem to be re-born each and every spring…especially since TBI. The depression and sensitivity to darker weather, isolation, inactivity, quietness all seem to leave me wanting to do absolutely nothing and not caring about much. As if in my own cocoon or hibernation, I see winter as something to be endured rather than enjoyed.

This is what the First Day of Spring looks like on my calendar.

This spring, the Robins and Pine Siskins have returned, we’ve had an addition of the Redpoles and Red-Winged Blackbirds, to our year-round friends, the Red-Breasted and White-Breasted Nuthatches, Black-capped and Mountain Chickadees, Downy and Hairy Woodpeckers.

Pre-TBI I enjoyed birds, but post-TBI, being more of a shut-in, I look for them and welcome them back as happy, feathered friends.

Their songs, at times, are loud! The bird bath has thawed, it was cleaned and refilled yesterday and the flying circus has begun!

I have also seen our first butterfly of the season and my crocuses are out! The first two years out here my crocuses would bloom, we’d get snow and they’d be flat as pancakes, so much for the joy of spring lasting.

From a dark and dormant season, there is rebirth. Amazing how the earth has its seasons that do not need mankind’s assistance!

Death has been a topic on my mind lately, with my kitty, Tux, and my 90-year-old Dad. I think of what Will Smith said, that there is life, there is death, and there is always rebirth…

Dad at Hospital Again

noreply@blogger.com (ResilientHeart) — Sun, 31 Mar 2013 14:38:00 +0000

Got the call from my oldest brother last night at 11:50 MT, saying he was on the way to pick up ex-step mom, Dad had been taken by ambulance to the Emergency Room for seizures. They called back around 2:20 this morning saying that Dad has been stabilized and we'll know more later.

Dad and Our Indomitable Spirits

noreply@blogger.com (ResilientHeart) — Thu, 28 Mar 2013 01:32:00 +0000

My Dad has been moved from the hospital to the rehab center (he went to the same rehab last year when fluid built up in his lungs then too).

Something really sweet happened at rehab. The same lady, Vicki, who had worked with Dad last year, was walking by his room and saw him. She went in, hugged him and told him how much she’d missed him, she even showed him and my ex-Step Mom photos she’d taken of him on her cell phone last year.

One of the photos was a really nice picture of Dad in his wheelchair in a rose garden. He remembers that trip to the rose garden to this very day! I remember him talking about it, it is certainly a deeply planted memory (terrible pun intended!)

Vicki said she’d ask her supervisor to see if she can work with Dad again.

It’s interesting what the mind remembers, but really, I think there are parts of our spirits that are untouched by age or trauma. This is one more confirmation for my theory!

Spoke Briefly with Dad

noreply@blogger.com (ResilientHeart) — Sun, 24 Mar 2013 20:32:00 +0000

I called Dad around 10:30 this morning, after a couple of rings, he answered his hospital room phone. It was good to hear his voice, it was raspy as my brother told me, he was quite tired and he didn’t talk long.

But here is the thing: I noticed it last weekend when we spoke last weekend, his words were slurred. Slurred speech always means stroke from what I’ve learned over the last ten years.

I mentioned this to my oldest brother who stopped by to see him briefly yesterday and he said Dad has an infection, and between the low sodium and too much fluid in his body, that’s probably all it is.

That doesn’t sit right with me. I saw it and heard it in my Grandmother’s voice years ago and wish I knew then what I know now. It’s frightening for the person it’s happening to and it’s alienating because we don’t understand what they’re saying. Regretfully, I was uncomfortable in her presence back then and didn’t know what to do.

I found my notes from last year when Dad was admitted to the hospital, his speech was not slurred. So it’s a mystery that only time will tell. From the information I’m looking at on Dementia here: http://www.dementiacarecentral.com/node/540, slurred speech is not part of the disease.

I am concerned for Dad, if he needs additional care, which costs exponentially more. It is staggering the cost of healthcare for seniors. And, I’ll admit, it’s heartbreaking to see someone who worked so hard and saved all his life, served two tours of duty in WWII, spend his whole life savings on medical bills.

(Sigh.)

Update on Dad

noreply@blogger.com (ResilientHeart) — Sun, 24 Mar 2013 03:10:00 +0000

Wow, talk about a long, long day.

Here is what I know: Dad is going to be in ICU a couple of days, I don’t have any specifics other than they have him on oxygen, he’s tired, and I’m told looks pretty good (all things considered.)

He was too tired to talk on the phone to my brother when he called earlier, ex-Step Mom suggested I call in the morning.

Life is such a remarkable gift we take for granted.

Oh yes. The ladies at the Assisted Living Community all hovered around ex-Step Mom asking about him. Now that’s got to help him feel good!

Life and love. All that matters.

I’m grateful for your being here, dear readers. Probably more than you know.

Kind of a mess today...

noreply@blogger.com (ResilientHeart) — Sat, 23 Mar 2013 19:37:00 +0000

This morning started with a voice mail message from Dad’s Assisted Living Community nurse requesting permission to call 9-11 for him. The flurry of phone calls began and my typical screwed up TBI brain struggled to communicate over the phone. Kind of goofy, I know I need to act NOW but figure I’ll have the words to say when I need them. Not.

At any rate, I’d have to imagine hospitals and nurses are quite accustomed to people in shock and can’t talk right, so I’m probably in good company.

Pacing seems to help my mind get itself together, so I walk up and down the hallway. I look out the window thinking I’ve been here not too long ago feeling this same, emotionally raw, way…when we first came to discover Dad would need Assisted Living. I look at the birds and tell myself to focus, I am lost in the moment. I am lost.

All I know is he’s getting tests run, and when they know more, so will I. I wrote frantic notes trying to glean all the details I possibly can, I then email one brother.

I look online for helpful information about the stages of Dementia and my heart is wobbly, needing to be strong, focused, calm, and decisive, I’m just kind of a mess right now. I feel if I know what’s coming, what to expect I’ll be able to handle it better. I am seeking solidity, security when in reality there is none to be had.

I wrestle with my flight instinct, telling myself I need to be ready at a moment’s notice to go back home (with dread). Can I let it go? Can I let go of all of it? Everything that has transpired in the past and just live within this very moment? I must. Time passes far too quickly as it is inside of this Brain Injured world of mine.

I’d already been thinking of what would have to be done to plan for a funeral, but damn it, are we ever fully prepared when the time comes? I’m sure some folks are.

Ironically I had just gotten all Dad’s paperwork sent in for his taxes last week (that was a HUGE, huge, huge accomplishment), and, I only just sent Dad’s Last Will and documents to his attorney yesterday, as he didn’t prepare the originals nor had copies.

I think of loss and grief. I think of the ‘between a rock and a hard place’ in these moments. It’s painful to see someone suffer and struggle, it is painful to think of our own loss…but the pain of watching someone suffering trumps my grief. No contest.

I think of the brevity of life, how in a split second your entire life can change and it’s all out of our control. I think of all the things we believe, or are taught to believe, so we can somehow have the illusion of controlling our destiny, but strongly doubt it in my own heart of hearts. All too often the very ones telling us what to believe aren’t necessarily doing it from a place of humility and unconditional friendliness or love. They have an agenda of their own, their own ego to feed, security to seek, and there’s all too often a financial gain in there somewhere too.

I suppose that’s what Brain Injury has taught me…and I’m sure it’s the same for each individual who has had a life experience that didn’t fit the textbook definition of how life is ‘supposed to be.’ These are the moments that define us, that make us who we are…they reveal our character, ‘good’ or ‘bad’.
I get a little weepy, I go get some water, look outside at the birds and squirrels. They do not future trip, they live in the moment, they do not prematurely grieve. I remind myself to do the same, to breathe in and out. Deeply.

It is a beautiful, bright sunny day here. The temp is barely 32 degrees Fahrenheit, just above freezing. I watch some birds trying to drink from the mostly frozen stone bowl, others drink at the heated water bowl.

Back at my computer, I sit in scared silence. I quietly wonder, as I peruse the information online, is this what I will be experiencing, if indeed, multiple TBIs cause Alzheimers/Dementia plus the genetic link I already have? I am 45-years-old, my Dad is 90 and I can relate to him in startling understanding from my own personal experience.

Just barely above freezing…that’s where I need to be too…to function well, to be fully present, in this fiercely cold, swirling heart storm.

Amy Grant's Beautiful Quote about Dementia

noreply@blogger.com (ResilientHeart) — Thu, 21 Mar 2013 17:19:00 +0000

I came across a quote I wrote down on a tiny piece of paper while waiting at the Doctor's office last year. I started to type it up to keep here on my computer but thought it was a keeper meant to be shared. :)

Here is the quote from the People Magazine article, Amy Grant said in, “Taking Care of My Dad”:

"A friend told me, 'This is the last great lesson your parents will teach you.' That changed everything. I've learned even tough situations are beautiful."

I love the wisdom and heart of this article because it not only deals with Dementia, but applies to a lot of other situations like TBI where we no longer have a map to go by.

I hope you read the inspiring article. It is a refreshing perspective of faith, empathy, compassion, acceptance, and living in the moment. Yep, it's a keeper meant to be shared. :)

Google Reader Shutting Down July 1, 2013

noreply@blogger.com (ResilientHeart) — Wed, 20 Mar 2013 15:45:00 +0000

I have to admit, I never got used to using Google's Reader and it appears I'm not alone. As of July 1, the Reader will be discontinued as a part of Google's 'Spring cleaning' which began in 2011.

Click here for the CNN article.

If you'd like to create an archive of your Google products, go to: https://www.google.com/takeout/

Please don't be alarmed by my (or anyone else) unsubscribing to your Blogger blog(s). By planning ahead I (we) won't miss out on posts. Yeah! :)

This blog is still available via email subscription (see "FOLLOW BY EMAIL" directly below the "The Fight Of My Life: Living with Traumatic Brain Injury A Candid Conversation: When Disability Strikes" banner).

On a side note, I have often wondered if Google will stop supporting Blogger too...we shall see. At any rate, this blog will remain, as will the mirror blog on WordPress.

Thanks for being here, dear reader! :)

Kitty Update: 3 Vet Visits in 3 Days

noreply@blogger.com (ResilientHeart) — Wed, 20 Mar 2013 02:06:00 +0000

Phew! Thursday, Friday were local vet visits for subcutaneous fluids, and, yesterday, fluids and acupuncture 65 miles away. OMG, stressed and exhausted!

All in all, Tux was pretty good about the shots. I wish I could say I did as well, LOL! Thursday the Vet took Tux without us being in the room and came right back out with her saying she did well. Friday the Vet asked if I wanted to see how it's done so we could do it at home. Sure.

OMG. I swear, my mind says I can do this for her, I can give her the shot, but then the blood rushes from my face and I feel faint. Maybe not so much of a gallant pet owner...

Here's kind of an odd thing about heading to Friday's appointment. Richard had the chainsaw in the back of our vehicle since he'd been working in the yard. I took it out and put it in the basement. I know, I know. How inconvenient of me to move it. Three car accidents and I'm pretty pathetic how concerned I was for Tux and said I didn't feel like I wanted to be skewered that day. Anything not secured in a moving vehicle becomes potentially dangerous projectile.

So, here we go, driving to the Vet's office in town and not even five minutes into the trip and a woman CLEARLY does not see us and ends up in the space where we were driving, Richard had to swerve to miss her. I just kept saying OMG! OMG! OMG!

Richard said he believes it to be the wife of someone who is often drunk...my anger rises for many reasons. I don't care WTF someone does to mess up their own life, but I get pissed when people are reckless with other people's lives. Grrrrrr! To know this and not tell a cop? WTF?

Anyway, I am grateful all Vet visits were safely traveled to and from. :)

I'll email the Vet to see how often we should get Tux subcutaneous fluids, and maybe I can try it at home. We'll see! Our regular Vet yesterday shared she had two dear cat owners who got all geared up to do the shots at home and when the time came, they just couldn't do it. So, for three times a week for a year + they brought their cat to the in for fluids. It's okay, there is that as another option. Of course doing it at home is far more affordable, but we'll see.

We also got some new Kidney Disease kitty food from other manufacturers, and, we bought items at Costco yesterday so I can try a raw foods diet for her. That can be high maintenance, because I did that part-time for my dog who died from Cancer, but it's quite miraculous what we can do when death is knocking at the door.

I feel responsible for my dog's Cancer and my cat's borderline Kidney Disease. Why? Because we had pets growing up and they, all, but one, died of old age. One cat lived to be 19-years-old and we only fed him Meow Mix! So, I'm curious about what can be done to extend one's life as long as a really good quality of life remains.

It has been a long day, I woke at 3am to the sounds of Tux hurling so we're still on kitty watch and probably will be until her final breath.

I know we all die eventually, that's not where my heart breaks. My heart breaks because of the years lost to TBI. Tux may have lived 14 years already, but to my mind, it only feels like 4 because 10 of it was my living with a Brain Injury. I have often said my memories are stolen before they even happen.

I think it would really break people's hearts to know the anguish we suffer every day of our lives. Seriously. We are living within every human being's number one fear: of losing our mental capacities. Let that sink in to where it feels uncomfortable. Then, magnify that by 365 days, years, decades...

I no longer hold any judgment towards those tortured souls who chose suicide. They weren't weak in the end. They were as strong as they could be with the light they'd been given in the first place. I'll never advocate suicide or believe it solves anything...

And here's the other thing. Whether it's TBI or whatever disability, animals know us, they accept us, and they become fixtures in our routines. Remove them and you're not just removing a 'pet'. These are foundational friends in fur, parts of our lives that cannot be replaced. So yeah, it's a pretty big deal...especially when faithful friends are in such short supply post-TBI because I'm a lot rougher around the edges than I used to be (and wish I wasn't.)

Sorry for the rambling, hopefully this post makes sense! I did want to update before the day ends and more details fade. Thanks for being here, dear readers and friends. :)

Direction Received

noreply@blogger.com (ResilientHeart) — Thu, 14 Mar 2013 21:26:00 +0000

I am really grateful I chose to email my vet instead of trying to communicating over the phone…especially since she’s out of the office the rest of this week!

She asked a few questions I’d not thought of and I had to refer to my notes, she had me check Tux’s gums for moisture as they should be slimy and not sticky. I’m happy to report slime!

She suggested taking Tux, who, by her definition is borderline, not in full blown Kidney Disease, to the local vet and get subcutaneous fluids administered TODAY. She also suggested bringing Tux in next week for acupuncture and she’ll show us how to administer the fluids at home. She says a lot of people opt to do this themselves and it really is an easy thing to do.

Before I made the calls to schedule Tux, I knew I needed to rest before making phone calls. Oh my gosh, I slept for a solid hour and I slept hard. Phew! LOL, and then I had a little caffeine to engage my -we-need-to-talk-cohesively-on-the-phone-brain!

So, Tux is going to the local vet this afternoon for subcutaneous fluids and Monday afternoon to our normal vet. She said she doesn’t believe blood work would be necessary, but if Tux is having trouble keeping weight on she would not sedate her because of issues metabolizing medication. She said it’s counter intuitive to get the information we need but hurt Tux to get it.

I asked our vet about starting Tux on a raw foods diet or trying another commercial brand of Kidney Disease kitty food since Tux is refusing what we’ve giving her now. (Tux is preferring the turkey breast and chicken broth, but there’s no weight gain there or sustaining nutrition.).

The vet said she recommends the diet in Dr. Pitcairn’s book for kitties with K/D. I did a raw foods diet for my dog with Cancer and believe that made a huge change for her. Really, I do have to wonder if we think we can ever beat nature with something man-made…

Anyway, I’m able to breathe a sigh of relief for now and know we have a supported path and wanted everyone here to know too. I know it’s no cure, but if I can help Tux live well for as long as she has on this earth, that’s a success in my book. I can’t express how grateful I am for your loving kindness, words of comfort, and support.

You, my friends, are rock stars!

And I’m grateful to be at a place in life I can afford to pursue care for Tux. That is one thing I deeply regretted with my dog who had Cancer. OMG! I was already broke and then add the cost of the surgery, wow, huge debt and then I could afford no further treatment. How heartbreaking is that, to want to do more, to know more is within reach, but be unable to afford it?

A piercing heartbreak can open one’s heart to compassion. We have better healthcare for our animals than people have for their beloved friends and families in their own countries. Now that’s something heartbreaking for sure, and perhaps, something to pray about too.

Waiting for Direction

noreply@blogger.com (ResilientHeart) — Thu, 14 Mar 2013 16:41:00 +0000

It took me two days to write an email to my vet but sent it this morning and just called the office to let them know to expect it. I figure it's far easier for me to communicate this way rather than try to remember everything I need to, and, keep myself from crying!

I've asked for the vet's advice and put it writing I'd prefer she be sedated if we need to take blood. It felt good to get that communicated. I also needed to know if what we're feeding Tux right now is okay long-term or are we causing kidney damage.

Tux seems to be doing okay so far living off of sliced turkey and chicken broth. She's got a little spunk back, but she's still quite tired and sleeps most of the day. She did allow me to love on her last night while she was lying in our bed. I'd just been praying for her, sending her light and love, and she looked up at me. So sweet. I've not heard her purr much lately, it is nice to hear.

She now has a heated lap blanket under her blanket on the bed so she can be warm and comfortable. All my energy is going toward helping her feel as good as is humanly possible.

Crying. Wow, sometimes I cannot stop! But then, I remember how much I bawled and cried when my dog was diagnosed with Cancer, my gosh, heartbreaking. Is it better to know the end is coming or not? I do not have a conclusion for myself at this point.

I did go back and look at some photos I took of Tux years ago and I heard a voice in my head say, "You did have time with her, you just don't remember." Kind of a sad revelation, but true.

As the case was with my dog, I never wanted her to go either, but I'll tell you straight up, I'd rather suffer with the loneliness of life without her than to see her struggle or suffer. There is a time, I believe, as they grow closer to death that they stop being themselves and start just surviving.

I have seen Tux with that faraway look and I wonder if the kitty angels are calling her, or helping her get ready to go. Well, I'm off again, I don't know for how long this time.

Hugs dear friends. :) Thanks for being here.

Time, TBI & Death

noreply@blogger.com (ResilientHeart) — Mon, 11 Mar 2013 03:51:00 +0000

I hate death. No. Really. I do. I have not been on speaking terms with death since my Mom passed away when I was just 16, and she was in her early 50’s.

My kitty with Kidney Disease had a very, very rough day yesterday. She started vomiting in the morning and anything she consumed, even water, got tossed up. I couldn’t be strong for one more moment and started crying in the afternoon wondering what to do. Vets aren’t open around here on weekends; would we have to take her 65-miles away to an emergency vet?

I needed time to figure out what to do, Richard was out working and I needed direction. For me, it came in the instructions from a naturopath Veterinarian whose book is often referred to when dealing with cat or dog issues. It was one of the first books I purchased an updated copy of as soon as I could after selling the house. It’s “Doctor Pitcairn’s New Complete Guide to Natural Health for Dogs and Cats”.

This is another area where Brain Injury kicks my ass (sorry for being blunt or crude.) But I HATE that I struggle to come up with not only a solution but try to look back at precursors that may have caused her to get sick in the first place. It’s in these moments of desperation that the voice of doubt rears its ugly head and says maybe I’m not fit to own animals in the first place…

Then there’s the anger. Angry at my Brain Injury, angry at God asking him why in the hell do people and animals have to die anyway?

I digress. Back to the book. It talks about giving chicken broth and I thought, “Great! I can boil some frozen chicken and she can drink the broth.” Nope. We are out of frozen chicken so, looked at the container of organic chicken broth. I’ve always been hesitant because it’s not 100% chicken broth, it’s close at 98%, but am deeply concerned when it comes to moments like these where I need to help her and not be a hindrance.

I warmed up the broth as the book suggests, and added water (my own idea), and she drank it. Next came the waiting game of seeing if she could keep that down. Success! Then we tried pieces of turkey breast we get from Costco, and waited, waited, and waited. Success!

She did climb into bed again last night as she’s done most every day of her life, she settled down on my sweatshirt at the edge of the bed and quickly fell asleep. She must have been absolutely exhausted. I did not sleep much last night, waking at every sound. I’m suddenly brought out of the fog of Brain Injury to notice every detail, taking note of when she eats and uses the litter box. This is how I used to be without Brain Injury…

I am in a quandary and most likely will take her to the vet 65 miles away when I can get her in. Here’s the hesitance: she gets great care, she does well with the acupuncture, but they take her blood every 4 months and it’s of great difficulty each time. I can’t stand or sit there while they fish around after shaving her neck. Richard can’t stand it either, so it’s not just me. I’m hoping I can ask them if they can sedate her this time…LOL…and maybe ME TOO!

I really hate TBI too, for moments like this when I feel like the wind is knocked out of me and I have to do my absolute utmost for her. She’s been the sweetest of kitty friends. But I hate TBI because time passes and I have no concept of it. It’s heartbreaking that 10 of the 14 years I’ve had Tux I have had a Brain Injury. It feels like I’ve had no time with her at all. I felt the exact same way when my dog got sick and later had to be put down in 2009.

I can look at the notes on my paper where I wrote Tux’s birth year, the math I’ve done showing me it’s been 14 years, but it doesn’t feel like that long. I don’t know if any time with animals is ever quite long enough.

With all this I completely forgot about setting the clocks forward. Completely! I had it marked on the calendar but that was overridden in my brain. I’m glad Richard had the wherewithal to start off by resetting the clock on the toaster oven. I was really out of it…it usually takes me a while to adjust to the time change anyway.

I’ve wanted to stuff all these emotions away where they can be stowed for later…but later is now. I have to ventilate or I will be unable to make wise decisions when the time comes.

Sometimes I really wish I wasn’t such a mush ball with a wobbly heart when it comes to issues with pets. Egads, even writing this is making me cry, guess there’s still more heart to be ventilated. I have to be as prepared as I possibly can…and do the right thing.

I loved Tux even before we met! At that time Richard and I were together, he came home and said someone he knows has a really sweet little black and white kitten with a little white on her chest. I said I’d take her and I’ll call her Tux! She is pretty much the embodiment of sweet kittiness.

For now, she is eating and keeping things down. She has a buffet of food to choose from, this is exactly what I did for my dog with Cancer. I know in my heart of hearts it doesn’t matter if I hate death, or am angry about my TBI and time.

What I learned from walking my dog through Cancer is as long as life holds her here, I will fight with everything I’ve got to keep her alive and well, but when her time comes to go, I will help her go.

But that still doesn’t mean I’ll be on speaking terms with death anytime soon!

This Beautiful Community

noreply@blogger.com (ResilientHeart) — Mon, 04 Mar 2013 18:51:00 +0000

I had heard of this community’s generosity last year at a doctor’s appointment. The nurse and I were talking and she said this community raised a hefty sum of money for a woman who needed a specialized wheelchair. No one is wealthy, that’s just what they do here, she added.

This past Friday, Richard and I attended a dinner and auction for a local gentleman who has terminal Cancer. Neither he, nor I, knew this man. I guess because my life is so limited to the insides of these four walls, I saw everything through the eyes of wonder. I could feel the powerful energy in the room. It was a mix of warmth, respect, compassion, and the highest, most sincere, form of love…and the divine.

After the dinner, a couple folks spoke of this man who was seated at the back of the room in his wheelchair. As they began to speak, their eyes teared up, as did most. (I’m getting tears again just writing this!) The gentleman in the wheelchair was honored with a plaque for having volunteered and served this community. Thunderous applause and cheers erupted throughout the room, but he is loved for who he is and simply because he is a part of the community.

The auctioneer then took over and said that oftentimes with a diagnosis such as Cancer, the first thing that happens is you go broke. In his earnest and forthright manner he suggested we do what we always do to help one of our own. He said he’s seen this happen times before, where there’s a need, the community responds. Much like a rock tossed into a pond, the reach goes farther and farther out into the community.

Friends, family, and members of the community had all donated special items. There were some store bought treasures, a lot of gift cards, but most were heart- and hand-made. Those gifted with the talent of sewing made beautiful, one-of-a-kind quilts, wall hangings, and table runners. Artists donated sketches, prints, and paintings. The talented bakers of the community made pies, cakes, scones, and cinnamon rolls.

Sweet sale!

[The child you see in this photo is an auction helper, further up the aisle, you'll see a teenager carrying a pie. That ONE pie sold for over $100! We were really tempted to buy some cinnamon rolls from a wonderful baker, but the prices shot up out of our price range fast!]

I happened to sit next to a woman who has (or had been) the gentleman’s neighbor. She spared no expense in her bidding, it was incredible. The gentleman had written a book and some were being auctioned off, she bought one for well over a hundred dollars. Get this…she already has the book he signed and gave to her shortly after it was published!

Heart and hands

[The mirror you see in this photo was made by the gentleman pictured in it. I'm really happy this photo turned out. He takes vintage circular cut barn wood, stains it, embellishes it with vintage tack he's restored, and makes these remarkably beautiful one-of-a-kind frames for pictures or mirrors. This one needed two adults to display it, another hand-made treasure to last generations.]

I didn’t want to leave but with it was loud! A lot of stimuli all at once, people talking while the auction is going on, babies crying, lots of movement. The trip back home was pretty quiet, my brain was so fried, but I was happy, inspired, touched, and peaceful.

Part of my tears were/are for the fact I needed a fundraiser to help me keep my home years ago. It took everything I had to ask friends and family, I wrote to every non-profit organization in the U.S. that I could think of, I also wrote every Brain Injury Association in the U.S. I wrote Oprah, I wrote Dr. Phil, even President Obama. Nothing.

I clearly did not have the support this man has. How does one do that? To hear of another person’s struggle or suffering and do nothing but find creative ways to justify apathy and inactivity, or, as was most often the case, not respond at all? I don’t want to be like that.

To do that would be to miss out on a truly remarkable piece of life…

Will You Send Your Love?

noreply@blogger.com (ResilientHeart) — Fri, 01 Mar 2013 05:04:00 +0000

If you pray, pray. If you send intentions, intend away. Energy? Warm thoughts? Anything positive, and if you feel so moved, please do.

I had a different post in mind but it got derailed after reading an e-friend’s blog and feeling her heart.

I guess because I’ve been to that dark place I know some of the territory and it breaks my heart to see/read of others struggling…and sit by doing nothing.

I admire her courage to persevere and be able to write about her journey.

Please send her your love, prayers, etc., without strings…and no advice. She hasn’t asked this of me and she doesn’t know I’m asking this of you, the universe, etc.

http://thinking-about-leaving.blogspot.com/

A Little Black and Blue Heart

noreply@blogger.com (ResilientHeart) — Thu, 21 Feb 2013 01:32:00 +0000

I’ve not written for a while because I’ve been a little under the weather since December, and Richard can attest, I’ve not had a lot of words often to even speak. Just what I needed to feel just a little bit more isolated from the rest of the world. Ah, to just ‘be’ with suffering? Egads, I don’t do that well. I’m never quite sure just where to rest my mind: do I long for better days or try to accept this is the best it is going to be.

So I tend to not write on my darker days, heck, I’m lucky if I can even get out of bed. I figure it’s a good day when I can do dishes and go outside and muck. That’s definitely a different life than most folks I know.

More often than not Richard has been taking over my chores in addition to his own chores plus his work. I don’t do being inactive well. I still have a hearty sense I need to contribute to this world, no matter how small it gets.

Outside of physically not feeling well, there was a moment days ago where Richard said we should talk about what I would do if he wasn’t here (not leaving, just death). I fell to pieces. I tried not to, but the tears just came as the seemingly mighty floodgates failed and I quickly melted into a puddle. The fear, the anxiety, of living in the survival mode all came to surface. I SO don’t want to go back there!!!

He said he thought I’d do fine here, because people would help me out. I sobbed and asked, “But what about when they get worn out?” It’s been a sad truth for me to learn personally that people can help for a season (or promise to help, LOL!) but ongoing help is too much to ask. I thought of how expensive it would be to hire help…no way I could maintain this place alone.

I was re-living what I’d been through and it was all far too painful, but the truth of the matter is, there needs to be some planning for the future. I want to do better, I want to be independent, to not a burden more than anything. It is a drain to be in my shoes and I hate the idea of pulling others under too.

After our short conversation/sob session, Richard went to sleep, I continued tearing up. It was true, we do have to plan, as he said, while I’m still cognizant. Yup, pretty dim future if I end up with Dementia/Alzheimer’s due to TBI. This still brings tears to my eyes, so, on to the next heart ventilation:

The other thing that surprisingly caught my heart off guard was I chose to donate a couple of items to A Legacy of Legends auction earlier this month. It was held in Los Vegas, and I knew I’d probably never get to go another horse clinic, let alone a huge gathering like this one so thought I’d send a couple items. No big deal. That’s what I thought…

At first, it felt GREAT to give something back to this type of horsemanship that has changed my life and makes me so happy! But something shifted, maybe I had more dreams about horse clinics, I do not know. Maybe it was getting to see photos from the event, I may never know. At any rate, I cried.

There are waves of grief and loss that are all too much a part of this path. I can do well if I put blinders on and try to ignore what I’m missing out on. This is the horsemanship that makes my eyes light up and blissfully happy inside. To miss these events is hard, really hard! I miss it all so terribly…I cannot tell you how much I’ve missed going to clinics the last 10 years. That alone is enough to make me cry!

I thought maybe it I tried harder I could be well enough to go, but that’s probably not a reality. Heck, even when Richard and I just go to town to shop I am ALWAYS down and out with a headache and need to sleep for at least a day following.

And, my Dad’s 90th birthday is coming up, I was asked in a voice mail if we’d be there. I haven’t had the courage to return the call. I know there’s no way I could make it, if I could I would. Travel this time of the year is sketchy anyway due to weather, maybe we can plan a trip for Father’s Day instead. For now, I have to get appointments with my doctor to find out what else is going on with me besides typical TBI stuff.

I’m hoping that by letting these hurts out I can once again pick up the pieces, try to do the good where ever I can, and find some peace along the way.

Thanks for listening.

Why I HATE Talking on the Phone!

noreply@blogger.com (ResilientHeart) — Thu, 31 Jan 2013 21:05:00 +0000

I just got off the phone inquiring about feed prices, a HUGE stress because my brain processes things like an old 386 computer! It's a far stretch for me to look back when I used to answer phones and made calls for a living, when it took little or no effort...

So my question I'm putting out to the world is: Can I, in the lowest possible percentile for processing speed, do anything to increase it? Any rehab experts out there, or other TBIers in my shoes?

I'd sure love to get better at this because at the rate I'm going, I suck at it! LOL! No really, I do! I may be able to ask the question, but unable to process the answer. It's another reason I don't do online chat, it goes too fast for me to keep up.

Or, as was the unfortunate case this morning, I had a call supposedly from my health insurer, they asked for my address and then hung up or disconnected, but there was no call back. Uh, yeah, I don't think it was a real call either, they called at 8:15 this morning which is unusual, all of it is unsettling to say the least.

So I just called my health insurance and made a complete fool out of myself because I could not remember my mailing address, OMG, to confirm my identity! My brain remembered part of my mailing address from three years ago and got stuck in a "I don't know" loop. This is why I hate talking on the phone, I invariably make a fool out of myself and can't seem to make my brain to behave!! [Heavy sigh].

OMG, Calgon, take me away! And this was after I went through the self-talk of "I hate talking on the phone" to making myself believe "I love talking on the phone."

Not only do I feel like the Alpha Dork, I think I just proved it beyond the shadow of a doubt...again...

Back in the Techno Groove!

noreply@blogger.com (ResilientHeart) — Tue, 29 Jan 2013 05:03:00 +0000

Hello lovely readers!

I've been absent from technology as my computer went from clunking along to kaput. Oh my gosh, life without technology...I know it exists, but that's my brain in that electronic device! And to be 65 miles away from the nearest tech, well, we knew it would take a while!

Time away from the 'noise' of the Internet, email, Facebook, Twitter, etc., was actually pretty nice once I got used it. Yes. I said nice. And yes, I do love technology!

I had some nagging questions running through my mind: is the computer a tool, a distraction, an addiction...or, was it all three?

Does Facebook, Twitter, PinInterest help me connect with people? Maybe a better question to ask is whether I missed social networking sites? No, I did not. At all! I missed email and really, really missed reading blogs. OMG, unintentional technology detox! :)

Because the energy I have each day is so limited I really have to focus on the life in front of me. Am I getting my chores done each day? How am I doing with self-care? Am I maintaining healthy habits? Exercise? De-cluttering? Uncle, Uncle, I give, I give!

I love the Internet, I love technology, but overload is overload. It's kind of like having to watch the commercials during a TV show. You may not wish to watch it or even care about what they're selling, but you're a captive audience if you remain passive. When I had TV, I used to mute the commercials and close my eyes (too much visual stimuli).

When it comes to social media sites for this Brain Injured chick, all I can envision is the chaotic floor of the New York Stock Exchange where everyone is trying to yell louder than the other. Anyone else feel the same?

I don't need that kind of noise, negativity, or really unimportant events/details being magnified out of proportion. I don't need that stuff in my head. Each little bit slows me down and takes precious brain bucks.

I will continue to blog until divine direction leads otherwise, I want to continue to use my life and story to help others. Clearly 'social media' for me, anyway, is anything but.

Another insightful moment happened over breakfast one morning last week. Two lovely white-haired ladies were talking and I overheard one say, "I don't have time to learn Facebook, I'd rather be out socializing." Wise words! And as of yet, we have no data supporting social media actually increases our lifespan as getting out and socializing does. :)

I jokingly emailed a friend telling her I've yet to have had a life-changing spiritual discovery or a-ha moment on a social networking site!

What really clinched the self-inventory was receiving the Costco Connection in today's mail. This article "Stop Being Rude" (farthest right hand column) hit me right between the eyes, see what I mean in point 2?!

Happy New Year Everyone!!

noreply@blogger.com (ResilientHeart) — Mon, 31 Dec 2012 20:18:00 +0000

Last Post for 2012

I’ve been hoping to post before now but fatigue recovery (and perpetual brain fog) has dominated my life for now, and, a trip to the doctor on Saturday for chest pains (no worries, it was an esophageal spasm) set me back a bit. So, I write with a head full of fog before too much more time passes.

That’s just the goofy thing about TBI, something we’re not exactly even close to being at our best but still have to get things done all the same. Please pardon the fog…

Looking back at 2012

I think of Dad moving from his home to rehab center to assisted living, and my becoming Power of Attorney, taking over his finances. It’s pretty overwhelming to say the least. To step back in to family issues is quite odd. Sometimes distance can be a good thing. :) This is one of those big life lessons, whether we feel we’re ready to step up to it or not isn’t an option. Apparently we are ready or at least seem ready, or we wouldn’t be chosen. :)

I think of having to wear glasses now, yes, I turned 45 this year and my eyes are showing their age too.

This has been a year of unrest when it comes to my own personal religion, faith, and beliefs. It is almost laughable the conversation and questions inside my head. I’m no longer able to follow any faith blindly. I’d imagine this is a good thing, although it is strangely uncomfortable not being so certain or sure of what I used to believe or what we hear about today. I’m searching for timeless universal truths.

I think about gratitude, for what remains. Yes, I still live as a shut-in and activities are strategically planned so I can participate as much as possible without harming myself. But the Internet continues to be a lifeline to the world outside of these walls and I am ever grateful for that. I am thankful for each and everyone one of you. :) Yes, you!

Looking toward 2013

I’ve never been one for New Year’s resolutions since I believe change is a daily choice, here are some things I’m looking forward to/have in mind for this coming year:

To continue to give/receive encouragement, strength, comfort, and humor as I’ve received, and try to help myself have more fun as TBI can be both strenuous and serious.

Dad will turn 90! Remarkable!

Assistive Technology – I currently own a TracFone since I do not talk on the phone much at all these days, but I’ve been wanting a device similar to a smartphone to help me be better organized, track things better, and simply manage life a bit better. I’m saving up for an mp3 player that will have capacity for those lovely little apps we all hear about. This way, I get the benefit of the apps without a contract I could not afford or would use to its full capacity since I don’t talk on the phone much. (TracFone out here has no smartphones in our area as of yet.)

I look forward to being more organized and continue to declutter.

With our economy being what it is, and my medical costing more, this will be a far frugal year for sure. The good thing about being a human animal, what we cannot change we can adapt to. :)

I am wishing you and your loved ones a beautiful, enjoyable, content, and hopefully humor-able year. We’re all in this together. Thank you for being here, for making a world of difference in my life.

Blessings, Love & Peace,
RH