Wednesday, August 29, 2012

Blank Slate

It's been 19 months, 3 weeks and 3 days since my husband had a stroke. 

You would think that we would have some things figured out, like maybe he would be returning to work. Or that I would be handling things better. Or that life would be returning to “normal”, or at the very least we would be creating a new normal.

Instead, what is facing us is pretty much a blank slate. At this point our future seems the most undefined it's ever been. Last year at this time, I was working full-time. Al was still going to therapy. He was getting the help he needed and I was making the money, doing the chores, paying the bills, getting the kids to and from school, ordering pizza for dinner so often that the pizza place just answered by saying, “the usual?” At least I felt like we were making progress. I assumed things would be “better” in a year.

One year later. It feels like nothing has changed. But it certainly has. I am only working part-time now, which is a great help to my sanity. I honestly don't know how other moms work 40 hours a week manage to survive.  I was a wreck after one year of it. Of course, I did have the added fact that my husband was rendered disabled by a stupid CVA. I guess that might have added some stress. (ya think???) But I've never been very good at handling a lot at one time. I feel as if my brain came with limited juggling ability from the get-go. Maybe it's because I have serious ADD (self-diagnosed, but I KNOW I have it) and refuse to be medicated for it because I'm already a walking drug factory. The pharmacy people know me by name, too.

I can't complain too much, though: we had a great summer. It just went too fast. We had a 2-week vacation to Mackinaw City and Mackinac Island, and the Upper Peninsula of Michigan where my parents live. As soon as we returned, my in-laws flew my husband to their home in Venice, Florida. It was a nice break for my husband to get out of his dull routine, and a nice break for us (shhh, don't tell him I said that.) The purpose for his visit was that his parents had contacted a variety of people to give a “second opinion” of sorts on his progress. They had Al visit with a physical therapist, an orthotist from Hanger, a podiatrist (to help him with some recurring foot issues that have resulted from his AFO), and even an acupuncturist to try to re-awaken his face. In addition to seeking outside input, they also did some intensive home therapy with him on a daily basis, helping him into their pool and making him ride a stationary bike.

During that time, his therapy group met, via phone call, with his company to determine whether he would be truly able to return to his previous position as IT Administrator at Lear. They emailed him in Florida stating that their final recommendation would be that he not return to his position at Lear, since Lear cannot accommodate him on a part-time schedule, and since his position required a lot of physical activity: going up and down several steps, several times aday, walking over moving lines, carrying computer equipment, working in a fast paced environment rushing to the floor when emergencies are at stake.

OK. Fine. I completely understand, and I know there are agencies out there that can help a disabled man find a decent job, since he still has quite a sharp mind, and he has a lot of experience, both in networking, as well as with his MSW. What I don't understand is the snail's pace at which all people involved seemed to move. We had met with his PM&R doctor several times in early spring and made it abundantly clear that our goal was to get him back to work, even though her very first words to him were “Well, you don't have to go back to work.” What a very bizarre thing for a doctor to say to a man in his 30's with a family to provide for. She might just as well have said, “Just accept your fate, stay at home and collect disability.” The last time we met with her, which was in May, she agreed to contact our therapy group to get the ball rolling on Al's return to work. She said, “Maybe you can go back as soon as next week.” In retrospect, this convinces me that she has no clue what it takes to get a disabled person back into his job. A few weeks later, we met with Al's OT, who said she would hand our case over to yet another OT who specialized in back-to-work transitions. Granted, we had a 2-week vacation in there, and then my husband left for Florida for 6 weeks. Not much time for them to meet with him, but then to have an email finally saying it's a no-go seemed just a little too curt for my tastes. I guess I just wonder why no one came to this conclusion months ago, since we had actually had meetings with HR at Al's company and made it clear to them that he wouldn't be able to return full-time, at least not for the first several months. It seems they could have simply closed the door then.

All of this to say, here we are, staring at sort of a blank slate. It's clear that Al should continue some sort of therapy, as he has not had any voluntary movement return to his lower left arm, but he is able to move some muscles in his upper arm. With the electro-stim sleeve and continued therapy, we are still holding out for the best possible scenario, which is for him to completely regain the use of his hand.  As for his leg, the PT in Florida, as well as the PT's here, have agreed that all of the muscles in his left leg actually work; it's just a matter of training them and strengthening them in the right way. This is obviously very encouraging, but therapy is very helpful for him to learn exercises that will continue to target the muscles that need training.

But we have already been through 2 therapy groups and 2 physiatrist / PM&R docs, and we are ready to move on to #3 in both. Before I go on further, is it just me, or should a physiatrist be active in helping to orchestrate therapy, treatment, and even back-to-work goals? Because my experience so far is that we've met with the docs we've had, maybe once every month to six weeks, and they haven't necessarily helped us draft a plan, something we can see and actively follow.  I wonder if I'm just living in a fantasy world.  Please share your thoughts / experiences if you have any with PM&R docs.

So, we feel like we're starting from scratch, although my dear hubby is definitely further along than he was a year ago – more movement, better balance, more independence, etc. But it's a tough spot for a young father of 4 to be in – wondering if, when, and how he will return to work. And a mother of 4, and caregiver to her dear hubby, not able to work full-time, given my other responsibilities.  And I hardly feel like I can come to grips with what all of this means for our family, even though I've 19 months to digest it all.

I feel a bit sheepish to add this as an afterthought, but I am full of faith. I DO believe that God has a plan for us, and that He will be faithful to lay it out before us, and continue to provide for us as He has done for the 15 years of our marriage, and throughout this whole stroke ordeal, and for all of our lives. It's just that I'm kind of a perfectionistic control-freak, and I don't like not knowing what's going on. My husband on the other hand, is a bit more challenged, I think, to believe that any good will come of all this. It's hard for him to see how he will ever provide for his family again, and it's hard for me to convince him that “In all things God works for the good of those who love him, who have been called according to his purpose.” (Rom. 8:28)

However, our kids are sweet and loving, and they pray over Daddy faithfully, and they love his kooky sense of humor. He already has a lot going for him – a good relationship with his kids, great Christian friends who help in every way they can, a fabulously capable wife (ha ha, that's a bit of a joke, since some days I can barely remember who I am and what I'm doing), and above all a God who has never abandoned nor forsaken him.

In writing this, I am renewed in my belief in that last statement – that God will never forsake us.

Romans 8:31-39: “What, then, shall we say in response to these things? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? Who will bring any charge against those whom God has chosen? It is God who justifies. Who then is the one who condemns? No one. Christ Jesus who died —more than that, who was raised to life —is at the right hand of God and is also interceding for us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written:
“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”

Sorry it's been a long post, but I'm trying to catch up on all that I've missed writing about!

Saturday, August 11, 2012

Things are Looking Up

So, after my Debbie Downer post from a few days ago, I should really share about some of the exciting changes that are happening.

Some time in the spring, Al started to go to therapy less frequently because our insurance only covers 60 units of therapy per year.  His therapy group (he goes to Origami in Mason, MI) wanted him to save some of that therapy for when he returned to work so that an occupational therapist specializing in return to work could accompany him.  So, we spoke with our PM&R doctor, and she said she would get the ball rolling.   That was at the end of April, maybe beginning of May.  We heard NOTHING from her or from Origami until almost the end of June.  The OT specialist at Origami finally emailed Al and said she had spoken with Lear, Al's employer, and they were all to sit down together on July 13 for a meeting.

We went on vacation on June 24, and we were gone for 2 week, with the plan that Al would attend this meeting when we returned.  During our vacation, we got a message from Al's parents, who live in Florida, saying they had consulted some different therapists and doctors, and they wanted to fly him down to have a different set of eyes look at him to see how they could better tweak his rehabilitation.  We were planning to return home on July 8; they were poised to reserve a flight for him on July 9!  Talk about sudden!

After a short discussion, it really seemed like a good idea to me.  I haven't been the best at chronicling Al's day to day recovery, mostly because there hasn't been much, but also because I work during the school year and it's hard to get to blogging!  Suffice it to say that, since Al wasn't going to therapy regularly and had not yet returned to work.  He was stagnating in a major way, and he was becoming very depressed.  I figured that a new environment, new opinions about his health, and basically some time away would do him good.

When he first arrived in Florida, he was complaining about the heat.  It made me laugh because his parents have a gorgeous new house with a/c of course and a walk-out lanai that leads right to their pool.  What was even funnier is that it was hotter here in Michigan than it was in Florida.  His parents live on the gulf, so I'm sure they have their share of humidity, but what I think most people don't realize is that Michigan is extremely humid, too.  Lansing is in a basin that used to be primarily swamp land.  When you get some heavy humidity, you simply step outside and get drenched.

Anyway, Al has been through many appointments and day-in, day-out home therapy at the hands of his parents.   They get him into the pool every day so that he can do some weightless exercises.  They put the electrostim sleeve on him every day (which we had taken a break from because it was so tedious and didn't seem to be doing anything), and they are trying different techniques to conquer the tone and spasticity that works so darn hard against his best efforts to move his arm.

He has also been to a podiatrist to fix some problems with his toes that have arisen from wearing a brace all day, every day.  He has had his AFO re-built a number of times since the material they usually use isn't strong enough to keep his foot from rolling.  He's popped the bolts out several times just by walking.  His parents have sought the aid of a therapist who has come to the house to work with him one-on-one.  And he has even received acupuncture in his face to help it to re-awaken.  

All in all, my hubs has been gone almost 5 weeks, and it will be 6 total when he returns on August 21. 

The next step for us once he returns is to find yet another PM&R doctor, since the 2 we've seen haven't been on top of the case as much as we'd like them to be.  We will also have to decide about where to continue rehab since he has 30 units left for the year.

It's so hard when you are thrown into something like this, and you don't really know who is going to offer you the best help.  And once you find out that a provider isn't pulling his/her weight, you've lost several months of potential treatment or advice.  

But I'm grateful for this 6 weeks of intense therapy in Florida.  Hopefully it will be a jumpstart to a great new wave of progress!

Tuesday, August 7, 2012

The Pain of a Stroke

I can't say that I know what it feels like to have a stroke. Except that it must just feel like everything on the affected side is asleep and it frustrates the heck out of him after a year and a half that he still can't move his body the way he wants to.

What I can say is that I feel like my heart is being broken over and over again.

Because I am selfish.

I want my needs met by my husband.

And there is no way he can meet my needs the way he used to. I feel like the Lord has given me a breakthrough this summer; that He helped me to realize that I was relying too much on my husband to meet all of my emotional needs. And when he had the stroke, he couldn't do that any more. I think God led me to finally let go this summer. And now I'm grieving a unique kind of loss – the loss of my husband. He isn't dead. He is still mentally aware and intelligent. But something emotional is gone, and I don't think we will get it back. Now it's the “acceptance” time for grief.

So I guess I'm the one on the road to recovery now. It has really been a freeing time. A time for me to realize how much more I need to rely on the Lord than on anyone else in this world. A time for me to recognize that I can get through this with His help. A time to understand that I am much more capable than I used to think I was.

The tears are fewer and farther between now. I love my husband and I'm committed to him forever. But losing an emotional component of our relationship has been more challenging than losing anything physical.