Intensive Rehab (4 Month Update)

November 9, 2010 by  
Filed under Our Recovery Journal

Imagine being woken up and finding yourself in a boot camp environment.  The day in front of you consists of training exercises that will make you stronger, faster, and better.  The mentality of life is a group mentality, for your entire day consists of following the orders of a variety of drill instructors.

Now imagine that you cannot get yourself out of bed.  You try to lift your legs over the edge… they stubbornly refuse to move.  Even pulling the bed sheets off is a difficult task.  What used to be automatic is now a step-by-step process.  Complete focus is needed to move the hand into position, grasp the sheets, and then pull them to the side.  The person that woke you up is wearing hospital scrubs.  They help you out of bed and into your clothes.

The rest of the day is wrought with difficulty.  Even simple tasks such as lifting and walking require complete concentration.  Once a great reader, you have been knocked down to the most basic rung of the literacy ladder.  The simplest words and phrases escape you.  Even the finding the word that goes with a simple picture has become quite a challenge.

You now live away from home in a hospital room.  Family members come and go throughout the day.  They come to share in meals and to encourage you during your drills.  The world feels like a harsh place… you are a shell of your former self.  You feel worthless, frustrated, and mad.  In the evening, the drills end and you are wheeled back into your room.  It is chillingly quiet other than the occasional noise of someone walking down the hall.  You wonder why this happened.  What could you have done to have deserved this fate?

Your family tells you that there has been a trauma.  You have suffered a brain injury that caused some damage.  Things will get better if you are willing to work hard today.  The expectations are high here.  You are an intensive rehabilitation patient.

 

The Bigger Picture

Many victims of traumatic brain injury eventually come home and are able to live independently, but no matter how good the recovery life is always different from that point on.  The differences may include small, almost imperceptible changes like having trouble remembering what you are doing or bringing a coffee mug all the way up to your lips and having trouble drinking perfectly.

In many cases, the limitations are far greater… some patients never regain the ability to stand up or walk again.  It is common for a patient to need so much attention that the home isn’t even a suitable place for them to live, in which case life commences in a nursing home.  Probably the worst scenario is where the person never completely recovers their personality, resulting in a situation where even the family feels like their loved one just isn’t the same person anymore.

Once Jessica’s condition was stabilized and it was clear she would survive, any of the above results became a possibility. Although she has a way to go in her physical and mental recovery, right now we are looking at a good result… her personality has returned to the extent that we know she is the same person that we all remember and love.

Acute inpatient rehab lasts an average of 2-3 weeks. Obviously some cases are more complex and intense than others, allowing for the patient to stay longer. However, a stay in a rehab facility is meant to be more of a “boot camp” where the focus is on rehabbing for most of the day and then resting for the remainder of the day.  Progress is monitored with the specificity of a number cruncher at a big bank or insurance company.  Every “i” is dotted and every “t” is crossed during therapy.  The paperwork must demonstrate meaningful progress each week for the patient to be awarded an additional week in the rehab facility.

 

Ebbs and Flows in Recovery

It seems that each new placement elicits in an initial surge in her physical recovery, but as she becomes acclimated to her new surroundings the gains slow down or even stall.  Her initial trauma affected many parts of her brain and body.  Her deficits are greater than most.  Consequently, she has more room for improvement.  This has resulted in a longer stay than the average patient.  As I write this, she is now beginning her fifth week of inpatient therapy.

The encouragement and support provided to her is a great help, but no amount of hope can push her to make gains as quickly as we would want.  Each morning we encourage her success during the seven hours of therapy that lie ahead.  Wading through the waters of recovery requires more positivity than anything our family has ever tackled.  Her progress is held in check by the strong currents of these waters… soreness, boredom, doubt, and exhaustion all swirl around her path as she progresses through each day and attempts to remain strong and positive.

These currents hold her in check much more than I would like or desire, and they may even be so strong that they lower our expectations of continuing progress.  My own personal expectations may have been deflated by the fact that I had seen Jess make some big gains in walking right off the bat, then plateau for a week or more.

Between the lives of the kids and myself, we generally spend only a few hours with her each day.  While it is impossible to quantify how much our presence improves her attitude (or distracts her during workouts), I would like to spend as much time there as possible.  I try to make it for at least one meal and for the therapies immediately before or after.  It makes sense to spend as much time with her as possible in order to keep fingers on the pulse of her recovery.  We are looking for any positive steps that we can point out and use as encouragement.

It has now been over a week since I last saw her walk, and I naturally expected her to remain on the plateau she had been on.  What a nice surprise it was to see her walk again and do it so much better than she had last week.  Instead of needing the “maximum assistance” of leaning on a helper and having her leg advanced for her, Jess can now walk with the “moderate assistance” of doing most of the balancing herself and having a spotter initiate the movement in the right leg.

As far as her thinking goes, progress seems so slow that it’s hard to tell whether she is even making any gains.  Progress notes and occasional videos detail steady progress, but in casual conversation and simple brain exercises that progress is difficult to track.  In high school, Jessica was a superstar student.  Anything less than an “A” was a disappointment.  At this rate in the recovery, it will be a long, long time before she gets anywhere near being an “A” student.

 

Preparing for the Next Step

It has now been four months since Jessica’s initial trauma. About two months ago, Jess developed the self-awareness to realize where she was and what was going on.  Since that time, she has eagerly anticipated the day that she could move back home.  Her last move to inpatient rehab was really tough for her.  She understood that another hospital placement meant one more chapter in her recovery story where she would be away from home.

Although Jessica’s recovery is far from over, her days in the rehab unit are numbered.  She will (finally) be moving home very soon.

Jess will have to complete further therapy in the home or outpatient setting.  Considering the amount of physical, mental, and emotional recovering left to do, therapy will likely continue for a long time.  In fact, overcoming functional difficulties will be something she will deal with for the rest of her life.

We spent the weekend preparing the house for Jessica’s eventual return home.  Since stairs are so difficult, our bedroom will be relocated to the downstairs living room.  Furniture will be moved and the first floor opened up.  Jessica will have an easier time getting around the house and accessing everything that remains in our new minimalist design.

 

New Perspectives on Rehab & New Perspectives on Life

Initially, I imagined recovery to be like a good fiction novel where the plot built up to a climax (rehab) where Jessica would be “almost whole” and then be able to live as she had before. Instead it will be like a marathon, including outpatient rehab and/or in-home care for a long time. Results will come in small chunks and each small gain will require a lot of hard work on her part. My hope is that Jessica’s motivation will increase as she sees seizes opportunities to put her own stamp back onto our home.  There are so many individual tasks she can perform to become a productive mother again.

Jessica’s condition dictates how I update friends and family.  When things are at their worst, texts might go out every few hours.  Once things stabilized notifications might change to once or twice per week.  As a patient begins to show signs that they are returning to a normal life, updates are needed less and less frequently.

These updates began soon after the delivery and subsequent amniotic embolism.  Changes in condition were noted approximately every week or so in the early going, extending to every other week as her condition stabilized. At this point, Jessica remains beholden to her medications, but has gotten beyond being “hooked up” to anything.  Her stability has lessened the need for frequent updates, and we excited to announce that updates will only be needed monthly.

With time, Jessica’s effort, and your thoughts and prayers my hope is that there will eventually be no need to write them at all.  In the meantime, Jess will continue working hard and relearning as many skills as possible.  It is our hope that she will improve to the point that she is proud of her effectiveness as a wife and mother.

 

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Comments

2 Responses to “Intensive Rehab (4 Month Update)”
  1. Angie says:

    Thank you so much for sharing this story. My husband had a stroke 3 weeks ago….actually a cluster of 5 clots. We took him to the Emergency Room,and they actually sent him home because he had a normal CT scan. He was finally directly admitted after seeing his family doctor the next day. MRI showed a cluster of 5 clots. He has been in an inpatient Rehab facility for two weeks now. The is by far the most frustrating thing I have ever been through – so I can only imagine how it is for him. He is 56 years old, and I know he feels like a baby again. He can’t do much for himself right now. He is very depressed. His right side is affected….not much movement in his arm at all. He is getting better with walking – but it will be a long time until he can walk on this own. He has a hard time expressing himself…very frustrating for all of us. I try to take one minute at a time. If I think too far ahead, I panic. I worry every day that the insurance company will say they are done paying and that he may have to continue his therapy at a nursing home. After reading your story, I have hope that he WILL get better. Slowly but surely. Life will be different and we will have to find a new normal, but it will still be good!

  2. jturka says:

    Don’t ever give up, Angie. There is no doubt that the results of a stroke saddle the victim with physical, mental, and emotional difficulty. The gains can come at the most unexpected times, so do everything you can not to let frustration overwhelm him. The human mind and body are incredibly resilient.

    There is nothing wrong with a stint in a nursing home. I highly recommend researching them now if you have any free time, because inpatient rehab is a week-to-week proposition. Jessica spent a month in a skilled nursing facility and she made great progress there. For that placement (and all hospital placements) I recommend scheduling visitors as often as possible. It will help distract his mind and will send a message to the staff that this patient is important to a lot of people.

    I wish you the best,
    Jason

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