Getting Started

Finally....I go back to work next week, and we're starting to get somewhere at KU Med. He had an appointment today, and because he had been feeling nauseous when we left this morning, had not eaten anything. Since he was not feeling well at the appointment and complaining of pain and discomfort, they were able to schedule and conduct a CT scan while we were there. After such a long wait the last time we were there, it was nice that this clicked along the way it did. He was able to go from the doctor's appointment straight to radiology for the test.

He also got a couple of prescriptions to hopefully calm any spasms down to see if that's the cause of the pain. My concern, and evidently Terry's too, is that the pain is increasing. It's frustrating because while we are starting the process with this department at KU Med, they are starting from scratch. We've already scratched....we need to do something different and outside the box where diagnostics are concerned. I thought we had articulated that from the beginning, but I suppose each physician feels the need to validate for himself.

I'm still encouraged he's not been sick enough to require hospitalization while I've been off. I really can't figure that one out. He's obviously not felt well almost every morning, and that's been apparent. So what is the difference with whether this goes full blown or dies down mid-morning, as it has done? I have no clue...the only other variable may be the weather has been so cold that it may have diminished the impact of the changes in weather that typically have filled his sinuses and drained down his throat. Without that additional trigger, he may keep from sliding into a full day or more of vomiting.

I wish I could figure it out, so we could stop it from getting to that point. It's hard to keep something from happening if you don't know how it starts. At least we're finally getting down that road to figuring it out....

Happy Anniversary??

This is one of those days that I'm not sure how to handle. Today is the 10th anniversary of Terry's heart attack, and the event that changed our lives forever. I know that on more than one level I'm surprised we have made it to this point, because I'm not sure I really ever believed he'd still be here for Molly's high school graduation. And while we're not technically there, we're close enough that she knows her dad has always been there for her, and has seen her major moments in life so far.

But it's hard to know whether to recognize and celebrate the accomplishment of having made it the ten years, or just let the day go in peace. I'm the only one who recognized the date, anyway, so maybe it's just my own thoughts crashing in on the day. I just don't know how anyone else could have forgotten it....it is forever seared in my consciousness...

Speaking with Mom this morning about Grandma's worsening health caused us to have a conversation on death and dying. While we all know that at 90 Grandma has had a long life, and we know that 10 years post heart attack is almost a miracle for Terry giving the severity of the heart attack and resulting damage, in many ways it doesn't make it that much easier to accept that at any point one or both of them could be gone. Mom is struggling with whether she forces the issue of Grandma going to the hospital and I have struggled for the past 10 years with watching Terry's negative health behaviors. It was a difficult conversation, because we both were forced to face what we are feeling, which may or may not be compatible with what our loved ones are feeling.

Mom's situation is a little different than mine in that Grandma flat out refuses to consider going to the hospital. In her mind, she's tired of all of this, and not being able to breathe well, and while I won't say she has given up, to a certain degree it seems she has. Her siblings and cousins and many friends have all gone now, and I can't imagine how alone that could make one feel. But the hard part for Mom is knowing that even though for the past 8 years Mom has had her living with her, now, when her health is turning for the worst, that love and concern doesn't help Grandma in any way that she can articulate. She is at a place where our love for her is no longer enough to motivate her to want to keep trying to feel better. She wants to let go, and we need to figure out how we can let that happen.

With Terry, while he is willing to go to the hospital when necessary, he will not make that decision for himself. He wants me to take control and make the decisions, but that seems to be the only time he's willing to follow what I say. One of the observations I have had being home with him for the past 6 weeks so far is how much sugar he consumes. It's really staggering. He won't follow doctors' orders; won't take prescribed medications; won't follow a healthy diet, and I'm supposed to be okay with that. Where do his rights as an individual to live his life on his terms end and mine as a concerned spouse/caregiver begin? It's a slippery slope we never quite get figured out.

It's unfortunate for Mom and me that one of our connecting threads right now is that we are both caregivers to loved ones who are not making decisions in the best interests of their own health, and we know that we are going to lose them...it would be so much better if we did this one at a time to allow the other to be support, but we do have our own support group, I suppose. At least we each know there's someone out there who really knows what we're going through. There is much comfort in that knowledge.

So for everyone else, it's Thursday. For me, it's an anniversary we don't really recognize. Happy Anniversary to me...

Am I Making a Difference?

The time I've taken off from work was to help focus on Terry's health and get it straightened out. After more than five years of vomiting and forcing limitations regarding what we can plan to do and what we can actually do, we need to get this resolved...for all of our sakes.

But even above and beyond that, I knew I also needed a break from my life as I knew it. Work began to feel like a no win situation. For too long it felt like I was shortchanging my family for my job or my job for my family. You can have only one or two major demands in your life that you can commit to, without everything else suffering. Given a demanding job, Terry's health, my health, the loss of my two dads, getting Molly ready for graduation, and a grandmother with COPD who is having additional health challenges, and it's all too much sometimes....

Interestingly enough, this time off has had benefits for both of us. The most apparent benefit of my time at home is that Terry has not been hospitalized while I've been off. That's a step in the right direction. We were at the ER five times in the last six months, and it was wearing on all of us.

So why has he not been hospitalized? Is it coincidence, or has being here made a real and measurable difference to him? I don't know the answer to that. All I know is he has not been sick enough to warrant going to the hospital. That's not to say he has been healthy and well. He's just been healthier and better than he was the last six months of 2009, but again, it's a step in the right direction.

He has another appointment tomorrow (today) with the Internal Medicine Department at KU Med. I'm hopeful we get on the road to getting answers. The pain he is talking about now is more concerning to me than the vomiting had been. Pain is never good....it's your body's way of telling you something is wrong. They seem to be so focused on the retching and vomiting that we never seem to have discussions about the pain. I have a feeling the time has come.