Okay, Let's Try This Again. . .
Life sure gets crazy sometimes. I thought about starting a sort of "blog" ages ago after a few friends insisted I'd be good at it. Well, apparently I'm not because I sure didn't keep at it. I always wonder, in spite of what I guess is a kind of crazy life (sometimes) what I'd ever write about that anyone might wish to actually read. It seems sort of self-serving and even vain to presume they might.
So why now? Well, I'm in need of an outlet to help me process what is going on in my life and while I COULD just create a journal / diary and write in that, I have essential tremor and my handwriting is horrid. I can type though, so, here we are.
My life has changed so drastically over the past few years. Mostly in a good way, but in other ways, not so much. Apparently it's changing again right now and it's shaping up to be a very intense and not so great time in my life, so I'm gearing up to handle it as best I can.
In mid-May we were told that my hubby seems to have entered the final stages of liver cirrhosis. We'd been noticing some changes that when we discussed them with his specialist, prompted her to have him perform some simple physical actions and apparently those, our reports, and the most recent labs led her to confirm what we feared. This can still be slowed down we were assured so while I left the center deflated, I didn't lose all hope and was/am determined to slow this process down if I am able.
Fast forward to this past week.
On Thursday he was pretty much business as usual. Nothing new in the way of symptoms and we bopped around like we always do.
Friday morning was a completely different story. Suddenly he's struggling to find words to finish sentences or thoughts. He'd get started just fine. "I need to go out to the garage to get the. . . um. . . the. . ." He seemed a bit more wobbly when moving around but not too much more. It was just the missing words. He insisted he knew what he was going for, just couldn't find the words he wanted. It would just go blank.
This has been going on now for a few days. The progression seems to be that now when he can't find the words, and I'm not able to guess correctly he'll struggle to find it for a bit and then just fade out and leave the thought unfinished. There have been a few times I've looked over to see if he was still searching for it and he had fallen asleep.
From the reading/research I've done about his conditions I've expected changes in mental status but I expected it a bit farther down the road and not nearly so abrupt a change. More gradual like it has been throughout the process so far. Apparently not. Either that or something else is going on. I have got a call in to his med team after he granted me his permission to call them yesterday but have not heard back yet.
How do I feel about all this? Nervous, scared, extremely sad and more than a little lonely. I'm trying NOT to get defeatist about it or just resign myself to this being 'the end' but I also have to be practical and face the fact that that is ultimately where we are headed and there are things that need to be done that odds are he will no longer be able to do, even if he thinks he can. So I need to take on even more than I'm already doing. I don't want to remove his hope or will to fight this, so I have to tread carefully with any changes in our way of doing things so he doesn't feel marginalized. I need to protect him from himself if he becomes even more insecure in his movements and in his mental state. I'm watching that happen too. And it may be time to nail down what needs to happen if/when 'the end' does become the reality and after that. I need to be sure I will be okay when it's all over too. We've taken some steps in that direction but they were preliminary. I guess we thought we'd have much more time.
As long as he's able and I feel it's safe, I'm going to try to make his wishes happen. Sort of a treat everything as a kind of bucket list thing. He's determined that we are going to go camping. Ugh, I've never been and he thinks we need to go in a tent. Yikes. But, if I CAN make it happen, I want to, even if it's crazy making for me, and I think it might be. Time will tell. . . and time seems to be slipping away right now.
My life has changed so drastically over the past few years. Mostly in a good way, but in other ways, not so much. Apparently it's changing again right now and it's shaping up to be a very intense and not so great time in my life, so I'm gearing up to handle it as best I can.
In mid-May we were told that my hubby seems to have entered the final stages of liver cirrhosis. We'd been noticing some changes that when we discussed them with his specialist, prompted her to have him perform some simple physical actions and apparently those, our reports, and the most recent labs led her to confirm what we feared. This can still be slowed down we were assured so while I left the center deflated, I didn't lose all hope and was/am determined to slow this process down if I am able.
Fast forward to this past week.
On Thursday he was pretty much business as usual. Nothing new in the way of symptoms and we bopped around like we always do.
This has been going on now for a few days. The progression seems to be that now when he can't find the words, and I'm not able to guess correctly he'll struggle to find it for a bit and then just fade out and leave the thought unfinished. There have been a few times I've looked over to see if he was still searching for it and he had fallen asleep.
From the reading/research I've done about his conditions I've expected changes in mental status but I expected it a bit farther down the road and not nearly so abrupt a change. More gradual like it has been throughout the process so far. Apparently not. Either that or something else is going on. I have got a call in to his med team after he granted me his permission to call them yesterday but have not heard back yet.
How do I feel about all this? Nervous, scared, extremely sad and more than a little lonely. I'm trying NOT to get defeatist about it or just resign myself to this being 'the end' but I also have to be practical and face the fact that that is ultimately where we are headed and there are things that need to be done that odds are he will no longer be able to do, even if he thinks he can. So I need to take on even more than I'm already doing. I don't want to remove his hope or will to fight this, so I have to tread carefully with any changes in our way of doing things so he doesn't feel marginalized. I need to protect him from himself if he becomes even more insecure in his movements and in his mental state. I'm watching that happen too. And it may be time to nail down what needs to happen if/when 'the end' does become the reality and after that. I need to be sure I will be okay when it's all over too. We've taken some steps in that direction but they were preliminary. I guess we thought we'd have much more time.
As long as he's able and I feel it's safe, I'm going to try to make his wishes happen. Sort of a treat everything as a kind of bucket list thing. He's determined that we are going to go camping. Ugh, I've never been and he thinks we need to go in a tent. Yikes. But, if I CAN make it happen, I want to, even if it's crazy making for me, and I think it might be. Time will tell. . . and time seems to be slipping away right now.
Lori this also posted on your Facebook page??? Anyways I enjoyed your post and I left my reactions on that post. Hope it doesn't rain for your concert tonight.
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