Thursday, December 31, 2015

Life, Death, and how to decide.

Lee told me today he hates taking all these pills and he wants to talk to the doctor about stopping some of them.
 I took out each of his pills and told him what each one is for. I also told him that if he does stop the leukemia medication he would probably die within a few months, and as much as I really do love him and want him around I would support his decision.
 We discussed the parkinsons, and he understands that one really is only helping the tremor be not so bad, and he knows its not a cure and it will get worse eventually. He knows that carbidopa/levodopa doesn't even slow the progression of parkinsons, it just makes it easier to live with the symptoms. He may decide to stop it, I won't make that decision for him.
 The Prozac helps with his anger control, supposedly, I know that the dementia is affecting his moods more and more and Prozac isn't likely doing much.
 The rest he's on... Pantaprazole( think that's it) for reflux, vitamin D, Iron(the leukemia causes anemia, his iron was pretty bad) a multivitamin, seroquel(because the iron doesn't play well with sinimet so he can't take that at bedtime he's on the seroquel to knock him out despite the tremors trying to keep him awake), and hydrocodone(he generally only takes one in the morning when he wakes up, that's when the arthritis in his lower back is the worst), but he can take it up to 4 times a day, tamsulosin for an enlarged prostate,i Gleevec for the CML, and Claritin or zyrtec for year round allergies.
 It looks like a lot in his pill box but I know realistically it's not that much.
 I am very realistic in the outcome, I know he will die sooner rather than later. I know his meds aren't cures and his diseases are terminal. He knows that also. I've never kept the truth from him or downplayed the situation at all. He would make the decision knowing the outcome, and I would be ok with whatever decision he makes. We have actually discussed assisted suicide and he knows there is that option(he's catholic so he has said from the start that's not an option). He and I both don't see stopping his meds as suicide, we see it as allowing nature to take its course.
As much as I love my husband I can't fix him. I wish I could wrap my arms around him a
or wave a magic wand and cure him. I can't though, and I am most certainly aware that he is dying and I will lose my knight in shining armor. I will take every minute I am given though, and cherish every bit of it. Of he does decide to stop the medications we will then discuss hospice.
 I have known for many years that my happily ever after won't be forever after.

Wednesday, December 9, 2015

Respect comes in all shapes and sizes

Life takes us on adventures. Some we plan, some we fall into, some that find us.


Last month an adventure found us. Six days with no power. A wind storm with gusts of 71 mph slaughtered trees that had been standing for hundreds of years. It took out power lines, busted cement, broke open roofs, and took a couple lives.


We were very fortunate and we were prepared. We always have enough food on hand to last us a couple of months.
 We have some stored water , not enough for anything long term, but we have a couple filters on hand. We are still seriously under prepared for anything real long term.
we are prepared for a minor to moderate urban disaster, to shelter in place.


That's not what I want to discuss though. My mantra, "life will go on", has again shown us the meaning of life. That meaning of life comes in the form of two very sweet young adults who, despite it all, got married.
The world spins, day changes to night, summer to fall. It has never failed us, but our own hearts have been known to fail us. How do we prevent that from happening?
Respect. Respect for us, our partner, our children, our time.
I have learned that if I let respect for my spouse start to slide my heart starts to harden. When I let myself feel something he did was only done to irritate me my words start to bite.
When I start to get mad at his disease it reflects onto him as a person and makes him feel he is the disease.
When he asks for my time I have to remind myself he doesn't ask for much, and he's not doing it out of a lack of respect for me and my free time, he's doing it because he loves me and wants to spend time with me. I need to prioritize my plans and remember what lifes priorities are now, terminal diseases change the entire game plan.

Tuesday, December 1, 2015

The many faces of Parkinson's disease

You can see the progression in pictures. They aren't in any order except the first one, that's a couple years before Parkinson's began taking him away.





My cynical life

I hate doctors. Each time I take Lee to one they point out something I should have seen. Something that shows a progression of the Parkinsons. I live with him. I'm with him every day. I see what's happening. Yet I don't really see it.
It took a doctor today, a urologist at that, to point out how Lee is standing up from a chair. How he is leaning far forward, which is a high risk for a fall. He's already a high fall risk, and knock on wood... It's been a couple months since he has fallen.
I hate that I have to work, I wish I could stay home with him. If I could then we could have our own place. But he can't be alone 9+ hours a day, so we live with my parents.
I am really in need of a little vacation. Bekah and I want to plan a no plan drive east vacation. Just get in the car and drive until we get where we are going, which is to say... Nowhere. No plans, just pack and go.
I'm now realizing I probably won't be able to do that. We talked about trying to reserve the fire look out again and just me and her going. I don't know if that will happen either.
Parkinson's sucks. Bad.