The Siren's Call

Every time Dave leaves the house, I insist that he take his cell phone with him.  It isn't really so that I can get him to pick up a gallon of milk at the last minute, or ask how is day went.  After all, he doesn't really understand well without facial cues ever since his stroke.  No, I just want to check and make certain he is ok.

Especially when he is driving the kids around, I get a bit paranoid.  OK, so it's been, what four-and-a-half years since his stroke?  I have to have some credit - he did get into one car accident with Rowan in the backseat.  He said he was distracted because she was fussy at the time, hence missed the guy right in front of him who stopped at a red light.  That sort of distraction was a result of the stroke - he was concentrating so hard on what she was saying and wanting, and having a hard time hearing it (he has greater trouble understanding high-pitched voices, like a little girl whining, or my mother laughing).  And right after his initial stroke, he had a series of TIA's while we were driving around to his therapy appointments.  Kinda scary, even when you know what it is.

So just a few minutes ago, I heard a siren whizz past the house, coming from the direction that my husband and daughter travelled just a short while ago.  I thought, "No problem, they are headed away from where he is."  Then I saw the State Police Helicopter circle overhead.  Not good.  He landed at a nearby church.  Really not good.  They only land around here when there has been a horrible car accident, and the occupants need to be medivacked into University of Maryland Shock Trauma.  A fine facility, mind you, just not where I want my husband and daughter to be.

So is this where they are?  Probably not.  After all, these fears are mostly my paranoia.  But we just received 23" of snow, the roads are still being cleared, and Dave did not take his cell phone with him.  I have to swallow the fear until he returns.  And let me tell you, if he has hurt my daughter in any way.....

Handling Finances

Sometimes this topic makes me feel all grown-up, sometimes it just makes me want to cry.

Before Dave's stroke, he handled the major financial decisions around. He decided that we could afford the house we have, the cars we buy, etc. I ran the business. It was a good split, since we trusted each other. Even now, we are still affording the house we have, all of it, even though Dave no longer works. The cars are paid off, with one exception. And he had the foresight 20 years ago to start paying into a long-term disability plan. All good decisions, even now.

Now - well, the one car that is not paid off is one that I ok'd the purchase of. Will it be paid off? Yes eventually. In six more years. I don't like having a loan that is that long. But that is how we are able to afford a car that can hold six cars seats and pull the business trailer in a pinch.

The pool finally gave up the ghost. I can't just let it sit there, not with all our kids running around. It needs to be fixed or filled in, both of which costs about the same, and both of which is more than what I have available on my credit cards.

We are looking at the house, and trying to figure out where four kids will sleep, even if/when my parents are out of the house for good. Some walls need to be rearranged to make this happen. Does it need to be done now? No. But, construction costs are the cheapest they have been in years, and if/when the housing market recovers, it will only go up.

But I don't like making the decisions. Dave was always the good ones at this type of decision. Shoot, I'm the one telling him that we shouldn't go see a movie until I can get discount tickets on eBay. Who am I to be looking at spending incredible amounts of money that we would have to draw from the equity on our house?

I'm putting on a good front to the contracters I need to talk to, but right now, I keep repeating to myself, "There's no place like home, there's no place like home." Thing is, when I open my eyes, I'm still in OZ.

Maybe he is just being a guy....

I have almost decided that Dave did not have a stroke. He is just being a guy, and figured out how to get away with it.

Other people periodically ask me about Dave, and in my lower moments, I commiserate about how it gets tiring to have to remind him to flush the toilet, brush his teeth, feed the kids, go to the doctor's office. What I invariably get from everyone is, "Oh, my husband is like that, too!"

Then there are the times like today. We were at our daughter's pre-K, and they were having their Easter party, since next week is Spring Break. I asked Dave to get the camera out of the trunk of the car so we could take pictures.

"At home?"
"No, in the trunk of the car."
"In the back room at home?"
"No, in the trunk of the car."
"The car at home?"
"No, the car here. The trunk of the car here." (Gesturing towards the parking lot.)
"That car? Our car?"
"Yes. That car. In the trunk. In the back." (Gesture towards the car, then behind me as I pantomine driving the car. The kids are starting to think this is a great game.)
"Where in car."
"In the trunk. There is a basket." (I indicate a round basket with my hands, then pretend to pick it up by the handles and carry it.)
"In our car?"
"Yes. Our car. There. In the trunk. You will see it on top of the basket." (I use our sign for "look", then indicate a basket again.)

The kids are getting ready for an Easter Egg Hunt. The 3-year olds completely get the basket idea. Basket. Car. Right.

So, he goes out to the car. I can see through the window. He spends 10 minutes checking the back seat, moving papers, looking under the seat. He finally opens the trunk, immediately sees the camera, and comes back inside.

I don't want to hear how your husband is "just like that".

End of year worries

With the end of the year coming up, my mind keeps racing over some of the "problems" I'm facing.

First of all, Dave and I always kept enough life insurance on ourselves such that if one of us were to pass away, the house would be paid for. Well, neither of us passed away. Dave's company carried his life insurance for a bit, buy once they terminated him, we no longer had the option. Now, I can't imagine that he would qualify for any kind of life insurance, anywhere. He is only 43, and uninsurable.

Couple that with the recent realization I have been having that yes, we survived this stroke. But, Dave is six years older than me, has already had one stroke, is a bit overweight, and is a diet-controlled diabetic. Now, I realize that many stroke patients live for years, if not decades, without another incident. Dave's great-aunt was like that - she had a stroke in her 50's, and lived well into her 80's. But one day, it hit me like a runaway train - statistically speaking, Dave is going to predecease me, and it could quite likely be sooner rather than later.

Then there was the Christmas party that his stroke club/support group had the other day. I and our daughter were invited, and I figured it would be fun to get away from the business and the house for a few hours. Instead, I found myself looking at all these stroke patients, working so hard to overcome their individual obstacles, seeing how it has affected more than one life in so many cases - and I saw clearly that the problems we are having now, we will continue to have for years to come. I hope it is not being too selfish, but I felt a great wave of self-pity for most of that party, and kept trying to hide my tears.

Well, I just wanted to get that down on paper, and there it is. Now that it is off my mind, I can get back to work. Merry Christmas, one and all.

Who is my husband?

It is really late, and I am really tired, and that is when I have thoughts like these:

I get soooo frustrated, just as much as my husband, but for different reasons. I need to know that things will be ok. I need to know what mannerisms are my husband, and which are "just the stroke talking". Is he being obstinate? Is he punishing me because I can still talk?

That last sounds bad. He does not physically hurt me. But, for all the times I have had to push him to do his homework, for all the times we have had long discussions, only to find out that he said the complete opposite of what he intended all the way through, for all the times he has told me that he will do something, then magically "forget" five minutes later..... It is all very tiring, and even after two years, I find myself crying while he is asleep, wondering when I will be able to trust him enough where I don't have to double-check his every move.

I think back to when his stroke first occurred. One of the few times I was home that month, I jumped online and looked for an online support group. I found one - I don't remember the name, but is was for young stroke patients, and it was riddled with spammers. I posted to one of the groups that had recent activity from real stroke victims, and posted a plea. "I am five months pregnant, I feel all alone, my husband just had a stroke, I don't know if he will be alive tomorrow, I need to know everything will be ok."

I'm still looking for an answer.

Caring for a Young Stroke Patient

My husband had a stroke on the morning of July 4, 2005. He was the ripe old age of 42 when it occurred. Not the youngest person to have had a stroke, certainly. However, when you go to therapy sessions, the average age of the other stroke victims is 70-80.

I was six months pregnant when this occurred. Our daughter is now almost 2 years old - Rowan Ann Titus, aka The RAT, or Princess. She has certainly be the love of our life, and I don't know if I could make it without her to brighten my day.

When Dave had his stroke, I spent the following month next to his bedside in the hospital room. It is a long story - check out myaphasia.com for details. The nurses were all real nice about it. My midwives were at the same hospital, so the nurses made certain I made an extra appointment to see them, to make certain I was handling the stress ok.

I remember how stressful it was back then - we had moved to the country, I felt all alone, and I have yet to find a caregiver support group. Still, I felt that as soon as Dave returned home, we could start the road to recovery, and we would be a happy family unit again.

Not quite so.

Dave has an extreme case of Aphasia - it affects his ability to read, write, hear, and talk. At one point early in his stroke, he could not understand anyone, or speak, or write, or, well, you get the point. Dave was a computer programmer, close to earning a six-figure salary. That was gone overnight, and it looks as though he will not return to his programming, ever. How can you program, if you cannot write?

In brief, that is our story. I am finding that, two years later, we are still having problems and hardships. I decided to start this blog so that other people who are suddenly thrust into the roll of a caregiver may realize that they are not alone. With luck, this blog may turn into our own little support group....