The Song That Never Ends

In discussions I have had with other people about my blog I have heard from more than one source something along the lines of, “the story isn’t done yet.” Hearing this always sends a variety of thoughts and feelings through my mind. How can they tell the story isn’t done yet? When will the story be done (how long, O Lord)? What will that look like? Are they expecting a happy ending? Is there something else I am supposed to do, or learn, or share? What haven’t I said that is worth saying?In a sense this story won’t have an end until Strokeman and I are on the other side of the Jordan. However, most of the time the above mentioned statement comes about in a discussion of perhaps turning my blog into a book. If that is the goal, then at some point I have to be able to say with some satisfaction to the reader, “the end”. So the question comes, again: What will that look like? I don’t know yet. And I can’t spend a lot of time agonizing over it, because chances are really good that this will never be turned into a book. As I have often stated, I don’t have the discipline for that. But if, by some miracle I do end up writing a book, it would do me well to consider what things would need to be included in its pages.

I know for certain I would want to discuss the expectations for recovery of a stroke survivor. When you are in those first days, they will tell you that the first 6 weeks are crucial to optimal recovery. As soon as you can start healing the parts of the brain and body that are healable, you need to. The quicker you can start the hard work of building new pathways around dead spots in the brain, the better. Then they tell you that the first 6 months are very important. This is the time when therapy is most effective. Some recovery can be expected after that point, but it will be slower and in much smaller increments, and only as a result of tenacity on the part of the survivor. By a year, the survivor is pretty much as far as he is going to get, and not much else is to be expected. This is the wisdom of the medical staff and their research. And I am sure that there is much truth to be found in it.

There were others who said that they knew of stroke survivors that didn’t reach their full potential for two years (but implied that by that time full function was achieved). In the books I read by survivors, they kept saying not to give up, because as long as you are willing to work, you will gain ground. Some of them reported still seeing improvement 5 and 10 years from the time of the stroke. And who am I to doubt their stories?

And then there is Strokeman and his woman. And what of us? Well, I can say that there are many many things that play into recovery from a trauma of this kind. I think over all health before the stroke is important. I think that family support is important. I think that personality is important: personality of the survivor, of the caregiver, of the therapists, of the doctor, it all plays into it. If I had it to do over again (please, God, forbid!), I would take this into account far more than I did the first time around. I would look for a facility that had the ability to best serve the personality of the patient. My man is a stubborn man, and a cautious man, and with the stroke these things were only enhanced. He became bullheaded about the strangest things, and fearful about everything. I guess I expected the staff to be able to see that and work with it, and they didn’t. By the time I had figured it out, it was too late – the insurance had deemed him past the point of effective treatment.  The therapists had given up. The doctor said, “It’s been 18 months, what more do you expect?” So, I would say, as crucial as the time frame is, the people involved are also very important.

Another thing that plays into recovery is the side of the brain effected by the stroke. All those success books by stroke survivors? They are written by people effected in the left side of the brain. OK, I don’t know for sure that all of them are, but the ones I ran across were. It isn’t that a left sided stroke doesn’t have it’s problems; often they lose their ability to speak, or communicate at all. Often they lose the use of their dominant hand. They are often so eager to get better that they take unnecessary risks. But they do tend to be motivated to get their lives back. The right side of the brain houses  a different set of issues. When this side is affected, the survivor tends to be less motivated, and more fearful. I don’t understand the science behind it, but my daughter-in-law who knows about these things has confirmed to me that there is an element of truth in my observations.

My experience has been that the progress was excruciatingly slow from the beginning. Strokeman seems to have come into the world of recovery kicking and screaming. He wants things to be just so, and if they aren’t, all bets are off. It is no wonder that the therapists and doctors all gave up. He was not an eager student. He didn’t want to do his homework, and he wasn’t too interested in making us all proud. If the truth be known, I give up on him at least once a week. And then…and then… I will see him try something, or accomplish something, or say, “I can do it” and I realize we aren’t quite done. We are a month and a half past the two year point and in that 45 days he has:

1. stopped waking me up in the middle of the night to help him with his urinal.

2. started pulling his shorts up and down (but still not willing to pull them over his feet)

3. learned to clean his entire body in the shower, except for his right armpit and his hair.

4. started blow drying his own hair.

5. started swimming on his back without the aid of two noodles (still wearing a flotation belt)

6. started scooting his wheelchair back from the table, locking both wheels, standing up, and walking to the bed without assistance.

7. started walking a full lap in the pool without holding on to anything.

There are other things, cognitive things, that have improved as well.

Does he still prefer to spend most of the day in bed? Yes. Did he accuse me of receiving texts from boys half my age and “exposing my breasts in public” (I know, I had to have that one explained as well – I take my bra off in my own house, when the boys are not home, after about 8:00 in the evening – stone me.)  Does he still obsess over his bowel movements? Yes. But we are making tiny little strides on a fairly regular basis. It ebbs and flows, but the trend is ever so slightly upward. Sometimes it is because of a ton of hard work, and sometimes it just seems to be because of a fearfully wonderfully made body healing over time. So I can say definitively that changes can take place at least for two years, one month and 19 days past the stroke. I can also say definitively that this happens on its own time frame, and no one can predict it.

So what am I saying here? Keep expecting improvement? Set your sights low and your hopes high? I don’t know what to tell you – which is the point. Neither does anyone else. I guess what I am saying is that experts, on their best days, are making educated guesses. They don’t know. So my advice would be to listen, ask questions, follow directions, and use your intuition. They know what studies have shown to work most of the time. The don’t really know what will work for your loved one. In fact, you know your loved one the best, so you might actually have some wisdom to bring to the table here. Don’t fret if your journey doesn’t stay on their time table, it’s an average, so most people fall on one side or the other.

I guess I am also saying that as a caregiver you do not have to accept other people’s expectations of what should be important to you or to your survivor. Honestly, as much emphasis as they put on Strokeman being able to put his own clothes on, and as much fretting as I did over the fact that he wasn’t interested in learning this: There are other things that are far more important to me, and to him. Whether or not it should be important, the survivor is going to decide, and in the case of my stubborn man, aint nobody gonna change that decision for him. Sooner or later you have to cut your losses and move on.

Expectations are dangerous things. If you try too hard to live up to them, you may find yourself endlessly frustrated and discouraged. Take a deep breath, have your version of my coffee fix, and pray for patience and wisdom to just get through this day without killing someone (intentionally or inadvertently). Let the expectations bother someone else.

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4 Responses to The Song That Never Ends

  1. Cindy V says:

    Just got to this today & want to ponder it a bit before responding, not that I found anything amiss. Just that there is much here to consider, especially in the last two paragraphs.

  2. tinuviel says:

    Amen to your words about expectations. How much sleep (and possibly hair) have I lost because of concern for others’ expectations of me and which ways I’m not up to snuff right now?

    No advice or wisdom for you hear, but I am still praying for Strokeman’s healing and your strength and grace for today. The Lord who healed a man paralyzed for 38 years doesn’t seem overly concerned about other people’s timetables, even though any truth in the timetables comes from Him in the first place.

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