Category Archives: Living with Brain Injury

One Year Later: Ray’s Brain Injury Recovery

As the posts regarding Ray’s recovery from brain injury, and our experience of the last year continue (a little slower than I’d hoped!), I know the burning question in the minds of many is, “But how is Ray doing, now?” The process of brain injury recovery is actually a three-year deal, so we’re only a third of the way in. Regardless, I find that I can only address his recovery in the context of how he was doing a year ago.

The family, on a long walk in Tuscaloosa last weekend.
The family, on a long walk in Tuscaloosa last weekend.

A few days after the heart attack, Ray’s neurologist predicted that  he might never walk or talk again, preparing us for a man who might very well spend the rest of his life in a semi-vegetative state. Thanksgiving weekend last year, I sat down with each of the older children individually, doing my best to answer the question that was most on their minds: “When is Daddy coming home?”

My answer, catered to the age and understanding of each child, was this: “Daddy may never come home. He may spend the rest of his life in a hospital bed, unable to care for himself.”

As the days went on, he began to speak and control his movements more. Most of the time, he was able to recognize me, and could tell us the names of our oldest two children, but he had no memory of having more than two kids, and – on more than one occasion – he mistook me for a doctor or some other hospital employee.

Taking a selfie with Boo
Taking a selfie with Boo

Much to the surprise of his doctors,  he was able to go to a full-blown rehab hospital on December 8th. I remember his first day there vividly, when his occupational therapist had to bodily lift him from his bed and into a wheelchair, which had supports on either side of his head and a strap that held him in the chair. She wheeled him into the bathroom, propped his arm on the counter, and placed a toothbrush in his hand. He gripped it with his fist and managed to stick it in his mouth, making a few vague motions back and forth in a sad mockery of brushing his teeth.

At the end of January, it was time for him to leave the rehab hospital, and, based on the recommendations of his team of doctors and therapists, we planned to send him to a secondary rehab facility (read: nursing home). This was due to the sheer reality of his remaining care needs, and the seemingly impossible task of a mother with five children, one of whom was still in diapers and not even walking yet, taking care of of a grown man with such immense needs.

Thankfully, those plans did not come to fruition. At the time, he needed 24/7 close supervision. Showers required my arms in a cage to prevent him from falling over. Nights called for caregiving chores I never expected to have to complete at the age of 41, and days weren’t much easier. He couldn’t walk more than a few steps without falling, but he didn’t know that. I’d get him seated on the couch, admonish him to stay there, and run to the bathroom. Moments later, the kids would yell, “Mommy, Daddy’s up!” He would either completely forget to use the walker at his side, or he would have hold of it, lifted completely off the floor, just carrying it along for the ride, while putting it to absolutely no use.

Now, just over one year into the recovery process, Ray’s balance is almost perfect. Falls remain a possibility, but only slightly more so than for you or me. He walks, showers, and shaves unaided. He makes the sandwiches for the kids’ lunches most days, and cleans up the kitchen after dinner every night. He helps with laundry and many other household tasks. In fact, he’s regained many of his former abilities. His math remains better than mine, and, while his day-to-day memory presents a challenge in many ways, he can actually remember many names, dates, and facts far better than I can. From blowing leaves, to chopping down trees, to replacing my car battery, I am consistently impressed with the many things he is able to do.

Brain injury is a tricky thing, though. I’ve heard it said that a brain-injured person might recover 90%, but it will be a very different 90%. Indeed, the Ray of December 2016 is very different from the Ray of November, 2015, and I’ve come to realize that, while I’ve neither divorced nor been widowed and remarried, the husband whom I

Getting lovin' from Little Man
Getting lovin’ from Little Man

kissed good morning today is not the same man I kissed goodnight on November 18th, 2015.

Both men were made to love and be loved, though. That’s what I will strive to continue to do, and we’re blessed with children and many family and friends who continue to offer their love and support as well. For all of you, we are very grateful.

 

One Year Later – The Spiritual Journey

Wow. It’s hard to believe, but tomorrow will mark the one year anniversary of Ray’s heart attack and subsequent brain injury.

My goal is to publish a series of posts in the next few days, chronicling at least a little bit of our journey. First, though, I want to share a little bit of the spiritual journey, and brag on our awesome God Almighty.

A few weeks after the life-changing event, I looked back at my prayer journal, to the last entry I’d made before the heart attack. On that day, I meditated on 1 Kings 17:8-16, which is the story of Elijah and the widow of Zarephath. I wrote,

Elijah asks the woman for water, something easy for her to give. She goes to get it, no big deal. Then he asks for bread, but she has only enough to serve herself and her son one last time. He assures her they’ll be provided for. She trusts him and gives him what he’s asked for. And God provides.

I then noted,

I’m giving God what’s easy.

What am I not giving God that’s not so easy?

To which I wrote down the questions to myself:

  • My fertility? [While we followed Church teachings, was God asking us to be more open to accepting another life?]
  • My time? [Was I being called to do more for God, but not doing it, because I didn’t trust God enough to provide the time to complete everything that needed to be done?]

Finally, I scrawled across the bottom:

What act of total trust is God asking of me?

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Little did I know at the time, but the act of trust that would soon be required was that of placing my husband, my children, and myself entirely  into God’s hands and trusting that he would provide for us all, just as he did for the widow.

As I’ve looked back on the past year, and especially those first few weeks, when Ray was so desperately ill, I have continued to be awed by the sense of peace and even joy that I experienced through the very worst of it, and I know that it’s because, like the widow of Zarephath, I trusted. I’ve done many things wrong in my life, but in the moment when I realized that my husband was not breathing, I trusted.

I trusted because of the many mornings I had spent reading and reflecting on God’s promise in scripture.

I trusted because of the countless hours I had spent meditating upon God’s promise revealed through the mysteries of the Rosary.

I trusted because of hours spent in Adoration, loving our Lord, asking him to make me his servant, and to help me to unite my crosses to his.

I trusted because of the graces received through the source and summit of our lives as Catholics, the Eucharist. And, just as we pray in the Anima Christi,

Soul of Christ, sanctify me
Body of Christ, save me
Blood of Christ, inebriate me
Water from Christ’s side, wash me
Passion of Christ, strengthen me
O good Jesus, hear me
Within Thy wounds hide me
Suffer me not to be separated from Thee
From the malicious enemy defend me
In the hour of my death call me
And bid me come unto Thee
That I may praise Thee with Thy saints
and with Thy angels
Forever and ever
Amen

They did, and He did.

He strengthened me, inebriated me, and hid me within his wounds. He gave me the peaceful reassurance that Ray was held within his loving hands, as well. He gave me the joy of knowing that, when we walk through the deepest of valleys, he is with us.

He gave me the joy of the Resurrection.

We’ve been through a lot this past year. But when I come back to this assurance, all I can think is,

My God, you are so good.

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To learn more about our family’s journey this past year, you might like to read:

My First Post After Ray’s Heart Attack

A Peace that Surpasses All Understanding

Ray’s Unexpected Homecoming

 

 

Stress, Neurotics, and a Plea for Help

(Please note: Any self-derision in this article is largely tongue-in-cheek. While I am critical of myself in an mostly almost entirely healthy way, I’m also well aware of God’s infinite love for me and the fact that he wants me to love me too. And I do! I’m only human, but also trying to do better.)

The Story I’m Hoping isn’t Prophetic

Ray’s neuropsychologist shared a true story today of a young caregiver husband who literally passed out from malnutrition, exhaustion, and stress, hitting his head and causing a concussion. I think I’m taking better care of myself than that, but sometimes I do wonder.

The Stressor

So, here’s one major cause of my current stress: keeping my house in “livable” status. Right now, as I write, I’ve finally achieved it. Unfortunately, it’s not likely to last beyond 7:05 tomorrow morning, at which point in time the breakfast-making and lunch-packing mess, plus a toddler pulling out every toy we own, will throw it back into make-me-want-to-puke-or-scream-or-cry-or-maybe-all-three status.

So, we’re in livable status for the moment, but here’s the problem. I’ve been going non-stop since I woke up early this morning, and I just finally got to sit down and “relax” (if writing a blog post counts for relaxation) at 10:30. Livable status was achieved at 10:29.

Further exacerbating said stress is the knowledge that we’re having company Friday night, and Friday day promises to be a crazy mess of two doctor’s appointments for Ray, early pickup for four kids, preschool pickup for the toddler, running two kids allover the city for outings, and – oh, yeah – parent teacher conferences.

The reality is that, by the time our company arrives around 6:30, I’ll be lucky to have that breakfast/lunch/toddler mess cleaned up, let alone have dinner ready to be served.

Yes, I know. I never should have scheduled all of this for the same day. But I like to think I’m SuperWoman… until it becomes so incredibly obvious that I’m not. In my defense, I invited our friends before I knew any of this other stuff was going to happen. I scheduled the doctor’s appointments because we’ve been trying to get in since March and this date opened up. And the kids’ activities were planned by the PTO only a few weeks ago, but since their whole class is going… how can I say no?

My Neurotic Move

So, anyways, I actually pulled the slightly totally neurotic move of cancelling the plans with our friends, largely due to the knowledge that I would be freaking out trying to get the house cleaned. There were other reasons, but when I stopped and was totally honest with myself, I realized that the desire for a “company ready” house was playing a rather large role in my decision.

I know. It’s terrible! I’m an idiot and a social moron. What was I thinking?

I’ve re-extended the invitation, but they may now think that I didn’t really want them to come, or that I’m completely psycho, or both. The former is definitely not the case. As for the latter, well… the jury’s out.

Help, Please!

Okay. So, here’s why I’m writing this post. There are some very wise women who read this blog, and, even if you don’t identify yourself as such, I’m sure you have words of wisdom to help me solve my dilemma. (The dilemma being how to stay on top of my house without working until 10:30 every night, not the dilemma of over-scheduling myself. We can deal with my SuperWoman complex another time.)

The kids are already helping, although I’m sure they could help more. They each have time allotted each night for helping around the house. One vacuums, another mops, one helps with laundry, and a fourth in the kitchen. However, they’re notoriously awful about picking up after themselves or the toddler… so I could use some help there. Seriously, this toddler stage nearly kills me every time.

Given all that, what magical tips do you have that will help an overworked momma stay on top of the never-ending household mess? I’m sure I’m not the only mom struggling with this, so you never know who will benefit from your wisdom. Organizational tips, time management strategies, positive self-talk, you name it.

Please, please, please share your thoughts in the comments below!

(I’d rather not pass out and suffer a concussion – or worse!)

Update with some good news – I think I have carpool arranged for the kids, so there’s one thing off my plate!

Homecoming!

Ray’s Home!

After eight weeks in Grand Rapids in neurological rehab, Ray has finally come home. Here’s a how it went down…

welcome home dad
Yes, one of these kids is not my own. 😉
We Had a Week that Could Have Been from that Fiery Place Below

First off, I’ve been suffering from a terrible cold that has only affected me (worn down as I am), and has made most of my nights sleepless due to uncontrollable coughing. I tried everything, but for two weeks straight I was lucky to get four hours of sleep each night.

I drove my sleepless self to Grand Rapids Sunday, so that I could
learn Ray’s routine and get the recommendations for his ongoing therapy. I returned home  Tuesday evening, and woke up Wednesday morning to two sick kids. Hand, Foot and Mouth Disease didn’t strike Boo too badly but it left Little Man beside himself.  My sweet little baby wouldn’t stop screeching, and wanted to be held constantly. He didn’t want to eat or drink. Nothing made him happy.

Wednesday night, a tree fell on the power line running to the house, and we had a partial electrical outage. No A/C. No oven. No big deal.

No well pump. Ergo, no running water.

No toilets.

No way.

Electrical Outages Can Actually Be A Blessing

kids in hottubWhen you are a single mom with five kids, two of whom are sick, a lack of electricity running you out of your house and into the arms of your loving mom and dad who happen to have a pool is actually a blessing.

Mom and I took turns attempting to keep Little Man happy, while the other kids swam and played. It made for a far better day Thursday than the one I had planned, which was filled with work and cleaning.

The Big Day

Friday, still sleep-deprived, I left early to make the four hour drive upray at going away party to Grand Rapids. Again. There was a farewell party for Ray, a few last minute details to cover, and his room to pack up. Then, I turned around and drove the four hours home, arriving in time for the steak dinner Ray’s mom had waiting for us.

Of course, Little Man wouldn’t stop screeching. I had to remove him from the house so Ray could enjoy his welcome home dinner. Brain injury and screeching babies do not agree with one another. But, my trip to Walgreens to get Epsom salts was rewarded with a half hour long happy bath time (overseen by Bonita while I ate my dinner), and a happy baby at the end of it all.

Praise God.

God is Good

If you recall, just before Ray went to Michigan, I was about to lose it. I have a few things on my plate these days, and helping Ray with his at-home therapy had fallen off the plate and landed – SPLAT! – on the floor. His time in Michigan was a much needed opportunity for him to get the services he needed, while giving me a break from the stress of my inadequacies. (I say that with total healthy self-love. None of us are perfect.) It was also a time for me to prepare mentally and spiritually for his homecoming, and to get used to the idea of living by a schedule… something I’ve always known the value of, and which is vital to the well-being of a brain injury survivor, but that I – quite frankly – totally suck at.

I prayed a novena of total surrender to Jesus, finishing on the day Ray came home. Undoubtedly the best thing I could have done, and I’m grateful that it appeared when it did, an answer to a prayer.

Two Days of Life on a Schedule

I can’t say we’re sticking to it 100%, but we’ve done pretty well. The most important part is keeping Ray active, and we’ve definitely done that. He would love to take a three to four hour nap every day, but the schedule “simply doesn’t allow it.”

Proof that Big Families are a Blessing

ray and z on bike rideHaving five kids and a brain injured husband can be difficult to navigate. Very. To begin with, brain injury does not get along well with noise, chaos, and craziness. Add to that the myriad of kids’ activities, competing wants and needs, and trying to meet them all as a “single parent,” and a big family could quickly be seen as a curse.

But, thanks be to God, this weekend we have seen the blessing of theray and ike doing legos big family. The kids have – unbeknownst to them – become Ray’s therapists. Dude took a bike ride with me and Daddy Saturday morning. Bear did Legos with him in the afternoon. Ray played Battleship with Bonita, and played games of pool with Dude and Bear at my parents later in the day. All excellent forms of physical, occupational,ray playing pool or cognitive therapy for Ray, and a great way to keep the kids busy, thinking, and off their devices.

Here’s praying that we can continue this into the week!

This is Not a Hot Mess Pity Party

So this was supposed to be the post that I had half-written last week, when I was writing the update on Ray’s recovery. But it’s funny how, in the blink of an eye, everything can change and the “I’m doing okay but dang this is a lonely business” post changes to an “I’m a hot mess and I can’t stop crying and there’s no way I can possibly do everything I’m supposed to do and I am having a hard time seeing the good things in life right now” pity party.

Let me start by saying that I think I’m past the hot mess pity party, or else I probably wouldn’t be writing this post. I hate whiners and, while I might whine to close friends and family, I do try to keep it off the internet for the world to read. So, while this might start out negative, I do promise to end on a positive.

IMG_9986.JPGSo here’s how it goes. Last Thursday, I’m coasting along, having had a remarkably good day on Wednesday. In fact, Wednesday night I posted on Facebook, reflecting that I had actually achieved all of my critical “to-do’s” for the day. Of course, when I realized that I had only slept 3.5 hours the night before, and I’d hired help for four hours, I joked that I could stay on top of my work load if I never slept and each day was a half hour longer. Anyways, it was Thursday and life seemed pretty good. Until Ray and I met with the neuropsychologist who coordinates his rehabilitative therapy.

And she told me I wasn’t doing enough.

Okay, okay, she didn’t use those words, exactly. She was very nice, really. But the bottom line is this: Even as I thought Ray was making such remarkable progress (and had just posted a blog post about it, for the love of all that’s good!), the therapists felt that he wasn’t making enough progress, and that it was because we haven’t been doing enough therapy at home.

Exit happy, “I’ve got this” Stephanie. Enter “You’ve got to be kidding me, how can I possibly do one more thing” hot mess disaster Stephanie.

I made it through the meeting. But for the next several hours the words kept playing through my head. I’m not doing enough.

I lost it when I was telling my sister about it. At Dude’s rugby game. For all the world (or at least all those rugby parents) to see.

I lost it again the next day when I called my mom and told her what had happened.

And I lost it again as I watched what seemed to be a pint of blood go down the drain because Ray had sliced his fingers while cutting steak (blood thinners really work).

Reality struck. I had everything under control in the way that a cartoon character carrying a giant stack of dishes has control of those plates. Add one tiny tea cup, a spoon, or – heck! – even just a napkin, and the illusion of control is destroyed.

I’ve told friends that my life right now isn’t much different from that of a single mother with five young children with lots of doctor’s appointments and mountain of long-term-disability/social-security paperwork and medical bills to wade through.

But, seriously? What woman can handle all of that?

Well. Here’s the answer. Not a one. At least, certainly not this one. The reality is that things are going to remain undone and priorities have to be set, and that when that mom is trying to do everything, she’s going to make herself – and most likely everyone around her – miserable.

But here’s where the hot mess pity party ends, and light streams through the clouds.

On Sunday morning, my daily devotional was all about the foundational importance of IMG_9989.JPGhumility. Without humility, we can not continue to grow in the faith. We will always hit a stopping point.

I’ve written before about my need for this virtue, and the opportunity for growth remains. Humility is the knowledge that, without God I can do nothing. When I try to do too much and fail, I come back to the knowledge that I’m trying to do these things on my own. Yes, I can do all things. But I must not forget the last part of the verse. Through Christ, who strengthens me.

And so my hot mess pity party of last weekend was a blessing in disguise. It got me back down on my knees in prayer where I belong. It helped me to refocus and reignite.

I can’t say that I won’t fall apart again, but, with God’s Grace, I will find the courage and strength to acknowledge my weakness, cling to Him, and allow Him to put me back together again.

A Long Overdue Update – Ray’s Recovery from Brain Injury

The crickets have been chirping over here at A Few Beads Short, which probably has many of you wondering how Ray is doing following his heart attack and brain injury (injuries, actually).

So here goes… Ray’s doing well. Like, really, miraculously, incredibly well. I have to remind myself of that IMG_2836every day, and look back at where he was on December 8th, when he first went to the rehab hospital and couldn’t even hold a tooth brush, or on his first day home when he didn’t know how to use his walker in the small confines of our home and preferred to navigate by literally bouncing off of the walls and furniture to keep himself from falling. Or, the days when he’d start confabulating (yes, that’s a word) long, drawn out stories that you knew were absolute B.S. from the moment they started but it was nearly impossible to stop him until he’d gone on and on and on for five minutes or more… without pause.

His balance is still a bit off which means his gait’s a little wide, but all in all he’s walking beautifully. The video below was taken when we were walking into some very fierce wind at the beach during spring break (yes, thank you God – and one sweet, generous friend – we got to go on spring break!).

He brushes his own teeth – without me even reminding him! – and takes his own shower without a shower seat, and without me needing to stand nearby constantly at the ready lest he lose his balance and fall. In fact, he’s quite self-sufficient in all personal care tasks. He just takes a lot longer to do them than he used to. He still confabulates occasionally, but the stories are becoming increasingly fewer and farther between, and – thank God – they’re getting shorter, or maybe I’m just becoming better at politely redirecting the conversation.

Ray’s generally been pretty upbeat and seemingly unbothered by his brain injury. Claudia L. Osborn shares her story of recovering from a brain injury in the book Over My Head, and describes herself as having a “goofy contentment.” I’d say that’s a very accurate summary. However, I think Ray’s beginning to evolve beyond contentment, and reality is setting in. As you can probably imagine, this is both a blessing and a curse. On the one hand, “goofy contentment” is clearly not normal or healthy. On the other hand, it’s made for a pretty happy-go-lucky Ray when it came to therapy, homework, and dealing with his new lifestyle. The absence of contentment may usher in a whole host of new challenges.

Weird things have changed. His sense of smell has been severely impacted, which is a huge blessing when I’m gassy but very sad when there are flowers to smell. Along with that, his sense of taste has changed entirely. We used to love to eat sushi together, and now he could take it or leave it. In fact, he’d probably rather leave it since chop sticks pose a serious challenge. He used to hate almond milk but now prefers it to cow’s milk. He used to be a stickler for praying before family meals but these days sits down and starts eating the moment the plate hits the table. He’s forgotten some basic table manners and social niceties. One moment, I can almost forget that anything’s changed. The next, he double dips his breadstick and I’m reminded how very different he’s become.

All in all, we’re still early stages, and his recovery is nothing short of miraculous. But, we have a very long way to go. Years and years, in fact. We’ve been told that he won’t work in 2016, and possibly not in 2017, either. He can’t drive, has periodic tunnel vision, appears to have forgotten our lives together, and really has little to no voluntary recall of memories beyond the very recent past.

I hope to write within the next few days about how I’m doing, but bear with me. To say that life is crazy right now doesn’t quite do it justice. For now, I’ll summarize it by saying that I try to remind myself constantly that his recovery is a miracle, and a gift from God. I know that God can and will use all things for his glory, and when I look back at the last six months, I can see how he has done that already, although I believe our story is far from over. But busy-ness detracts from Godliness, and the entire Engelman family could really use your prayers.

If this is your first time visiting the blog, and you’re wondering what on earth is going on, here are a few posts that will catch you up:

Ray had a heart attack and suffered a serious brain injury as a result. Here’s what I wrote the night after it all began.

Here’s how God blessed me (and us) abundantly with his presence, comfort and peace.

Oh yeah, I wrote this book and it was released in the midst of all this.

After nearly three months in the hospital, here’s how we wound up bringing Ray home when we thought we were taking him to a subacute rehab facility.

And it went like this.

Here’s how the baby that no one thought we should have saved his daddy’s life.

 

Being Home – The Good, the Bad, and the Ugly (A 7QT Post)

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It’s been two weeks now since Ray’s unexpected homecoming. There have been good times, there have been bad times, and there have been downright ugly times. Here are some highlights.

1. Good: I Can’t Even Keep Track of How Much Help We’ve Had

Seriously. I’ve said all along that about the only thing people aren’t doing for me is blowing my nose and wiping my… eh hmm. The boatloads of help have continued, and even increased, since Ray’s been home. Ray’s parents have spent a ton of time at the house helping keep him busy, safe, and therapied. (Yes, I’m allowed to make up new words.) A few courageous friends and family members have even come and stayed with him for short periods of time. Meals have been brought, grocery trips made, and kids have been occupied.

2. Good: My Kids Are Pretty Awesome

The kids have been an amazing help. Boo (our 5 year old) will act as Ray’s loving restraint device by sitting on his lap when I need to leave the room. The older ones will play games with him to keep him in one spot, and they’re generally very happy to help by bringing IMG_9075 isaac bday ray with girlsDaddy whatever he needs.

Ray’s reality is different from our own. Sometimes he sees things that aren’t there, and sometimes he doesn’t see things that are there. Ray will discipline the kids for things they didn’t do, or for failure to do things they were never told to do in the first place. He frequently calls them by the wrong name, or mistakes someone else’s child as one of our own.

This confounds the younger children, but the older two have responded remarkably well. Dude and Bonita will shrug these things off, tell him what he needs to hear at that moment, and, at times, even wink at Mommy as they’re doing it.

3. Bad: Lines Are Getting Blurred

As you might guess from #2, the children’s response is both a blessing, and a curse. The line between parent and child is, necessarily, blurred right now. This leads to children taking on responsibilities they should never have to bear. For example, Ray fell Thursday night, while in the living room with 12 year old Dude. Dude felt that it was all his fault, that he should have caught Daddy. Of course, you and I know that that would have been impossible, but Dude is still beating himself up over it, nonetheless.

The line of honesty and trust is being blurred, as well. Daddy tells some real whoppers, which is an inherent part of his diagnosis. Some of it is hallucination, and some of it is “confabulation.” The kids are learning, very quickly, not to believe anything Daddy says, and, at this point in time, I can only support them in that understanding. Parents should always advocate and support one another, presenting a “unified front” to their kids. Instead, in the Engelman household right now, the children and I have had to turn the tables and present a “unified front” to their father. It’s slippery territory.

4. Good: At Times, I Feel Like I’ve “Got This”

There have been moments, and even days, when dinner was on the table at a reasonable hour, the house was relatively neat and clean, and the laundry not atrociously overflowing. More importantly, Ray seemed to be benefitting from activities and love at home and the children and I have enjoyed having him here. In those moments, I’ve felt like I had things pretty well under control, even while recognizing that, yes, that was entirely due to God’s grace and the help and kindness of friends, family, and even strangers.

5. Ugly: There Have Been Times When I Totally Didn’t “Have This”

And then it all falls apart. Two kids throwing fits at the same time, lack of sleep due to a baby who wakes up three to four times a night and a husband who sometimes needs assistance at night, too. A messy house that eventually gets the better of me, Ray’s stressful showers that take up to an hour, trying to get anywhere on time being next to impossible… these things tend to add up and bring out the very worst in me.

6. Bad: Patience Remains a Virtue I Need to Work On

As you can guess from #5, and as I’ve discussed previously, patience is a virtue that I don’t possess in great quantities. As I mentioned during my radio interview Friday, I frequently think, this requires the patience of Job, and I don’t have the patience of Job.

Part of Ray’s injury has led him to a bit of an OCD personality, that requires prolonged tooth brushing and fixating on various other grooming needs. To make matters worse, I really need to be with him through much of this grooming to make sure that he is safe. Most of the time, I think I do pretty well with this, but when we’re on a schedule, having started well in advance of the necessary departure time, and grooming throws us fifteen to thirty minutes behind, my patience has been know to run out.

Obviously, I’m working on this, on changing the amount of time I allow to get to commitments, and the way we do things in general so that he can have the time he needs, but I’ve got a long way to go before I get it all figured out.

7. Good: We Have a Merciful God

What a blessing to be in the season of Lent, when I am reminded that we are called to take up our crosses and follow Christ. And, as I consider Christ on his way to Calvary, I am also reminded that he fell three times on that journey. Christ was perfect in every way, but his falling reminds me that I am not. I am human, and imperfect, and I will inevitably fall at times.

2016 is being celebrated within the Catholic Church as a “Jubilee Year of Mercy.” This is a time to remember God’s Mercy, through the gift of his son on the cross, through which all our sins are forgiven. It’s also a time for us to extend mercy to others, and even to ourselves.

As I fall, and get up, and fall, and get up again, I rejoice in the boundless mercy of our loving God, and seek to remind myself to be merciful in turn to Ray, to my children, and to myself.

 

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An Unexpected Homecoming

It’s been a long week. Last Saturday, Ray’s sister was visiting when he had a bout of “seizure like activity.” On Monday, just as I was getting ready to leave the rehab hospital to go pick up the kids, I noticed that Ray’s breathing was labored. One thing led to another, and it turned into another “seizure-like” episode. Next thing you know, we’re back at St. Vincent’s hospital for testing.

An echocardiogram, CT scan, EEG, and MRI later, we were all set to leave St. V’s Friday afternoon.

However, we could not return to the same acute rehab hospital we had come to know and love. The average stay there is 14 days. Ray had been there for 49, and the insurance wasn’t ready to pay for more. Tuesday had been set as his discharge day.

I had prayerfully considered bringing Ray home, but the doctors and family and friends strongly discouraged it. He is very impulsive, extremely shaky on his feet, and recognizes neither. He should use a walker or wheelchair, and needs a spotter, even with the walker. But he doesn’t remember that and, without a second thought, will hop out of bed, a chair, or even a wheelchair and eagerly want to help me, grab an imagined item, or go to the bathroom. How could a mother with five young children, including a baby, handle that? The answer is… she probably can’t. Plus, at a subacute rehab, he would receive two hours a day of therapy, whereas if he were at home he would only get three hours a couple days a week.

I toured three subacute facilities, and said I would cut off my right arm before putting him in two of them. However, there was a third that I was very comfortable with. Unfortunately, there was a mix-up and miscommunication, and that facility denied him admission. We were expecting to get that figured out early next week, so we decided to put him in one of the other cut-off-my-arm-subacutes in the meantime.

On the way to his new "home away from home"
On the way to his new “home away from home”

I figured he’d survive a few days in a poorly decorated geriatric facility, and then we’d get him to the better option.

We left the hospital around 4:30, and finally got to the new facility at five. After waiting 20 minutes for someone to bring a wheelchair, we were finally shown to his room. Walking through the halls, I was reminded of why I wanted to cut off an arm before sending him there, and when we walked into the vintage eighties room, boasting two beds with nasty, mismatched comforters and not much else, I wanted to cry. It was only for a few days, though, so I thought we could handle it.

But then I noticed that the bed had no rails. And the tech informed me that none of their beds had rails – that’s considered a restraint, and they can’t have restraints. So I asked about a bed alarm. And he said that, no, they didn’t have those, either. That was considered a restraint too.

And I said, “He can’t stay here.”

Which left only one option. Bring him home.

Thus, last night, with no planning and zero preparation, I finally brought Ray home, after

Home at last
Home at last

over two months of hospitalization. My full time job has now switched from hospital visitor, rehab supporter, and medical advocate. I am now 24/7 caregiver, not just to five kids, but to one adult man as well. Fortunately, I had been trained in walking with him, helping him to the bathroom, and transitioning from wheelchair to car. Unfortunately, we left the hospital with no training on his medications, no medical equipment, and a house that needs rearranged to fit our new needs.

It’s gonna be an interesting few days, but it’s good to have him home.