Disclaimer: I am irreverent and have nursing humor. Take it as it's intended to be, funny and sarcastic.
I've seen it a hundred times. A family is in agony because they thought their loved one would die quickly. Sometimes that just ain't so. They move to comfort care and then second guess. Ok...irreverent and sarcastic, buckle up.
This kid. Do you know who Jeff Dunham is? The ventriloquist who has Ahmed The Terrorist as one of his characters? Well, look. It's what he looks like, ravaged as he is.
This kid. For the last month he has done nothing but order things from amazon. North of $10K in a month! Buying what you ask? I'm glad you asked.
Remote control car
Remote control boat
Legos
Large tool boxes that he was going to make up a complete set of tools for Meg
There is so much more....
At leased,7 BIG lego sets for building some car or another, some military vehicle or another, blah, blah, blah...lego set. NOW each of these things comes as a kit, with me? This guy, this fucking guy takes every lego piece out of every set, that could have been sent BACK, and organizes them by their commonality. In organizers that he ordered. To go on shelving units that he ordered. Why did he pull them all apart, you ask? I'm glad you asked. Because he wants to build whatever he wants to build. So it is done. Thank the stars my BIL came into town and helped to organize everything. I told you that this guy is an engineer, yes? He is. He is absolutely brilliant. Just like the minds of all geniuses, lunacy! Absolute coordinator of chaos.
So all that is enough. NOW imagine a living room in a lovely little house where it is decorated cute with plants and inviting couch and blankets to stay a while and snuggle in. ***Screech!!*** every god damned box on the planet with shit he will never use is by his chair. It oozes out of his immediate orbit and starts to take over. Boxes and organizers for the boxes and....exhausting. Finally my sister tripped and fell so he would get them message to get his shit out of the way.
But none of that was what I wanted to tell you. The last 3-4 days have been more exhausting. He was not getting good management of symptoms, mainly pain, so he was taken to the inpatient center. It's called Shepherds Cove and it is stunningly beautiful, built to give families room and time to smile and greave together. They set him up on a PCA-Patient Controlled Analgesia - that will give him continuous pain medication and will allow for him to give himself more every 15 minutes, if necessary. The night they were getting it started he was wild, pisssed and ready to see fueled with straight adrenaline and leave the building. We worked all that out.
So this guy is on elephant amounts of medication and we have been getting him up to the bathroom. Have to go with him because he can't hold his PCA and the bag of medicine and hold his shirt up to see what he is doing (more to make sure he doesn't pee on his shirt) and to be sure he is steady. Well, today he does all of these things and decides he wants to sit in the chair (my sleeping chair) and try to eat some lunch. So this guy is as alert as he has been in weeks, sips of this, small bite of that and then he is finished.
Stick with me. Couple things here. In Alabama those signs that let folks know that it is a no smoking campus? You know like we have at home. Well, in Alabama there is a cigarette AND a skoal tin. So the boy dips. Put-in a dip and falls to sleep. Someone will come in and need to do something for him and its, I need to take out my dip, can I pee first, can you just leave that one here., heat my heating pad, fix my bed, I need my sprite and dip cup, the sprite is flat - will you go get me a new one. OMG.... this guy.
When he is asleep it's hard to know for sure if he is alive. I won't bore you with the details, just trust me.
So they increased his medication and here is the rub. The second guessing piece. He perks up. Talking to us, audibly clear as a bell. My first thought was OMG what if they want to send him home. I know how to take care of him but I don't wanna. The medical director came in and he was right on the page with this being a mysterious rally and that we were days away. He doesn't think he should go anywhere and we should be able to the sisters (Meg calls us "the sisters") rather than 100% caregiving. He's not going anywhere.
Don't you get up and talk to me like you are going to walk out of here and go do something fun. Don't do that. I know the rally. I know the time after the rally.
Now.....real talk for families who have loved ones who are dying. I give you permission for the following:
1. Being bone fucking, back breaking and emotionally exhausted
2. Feeling like you want it to end because you would could go home and sleep in your own bed. Then it's dammit, he is 43. It's bullshit.
3. In the case of Meg, I am quite sure she will like having her house back from all the space invaders. I want to me in my own house and no one has even been there!
4. Just getting the news that it is over. It's done. Finally. 2 years of anticipation of the nightmare to come.
And many times over we are thankful that Dad died first and didn't have to lose a child. To see Gary like this would kill him. Kristy and I went back and forth with who should go first. This is the way it turned out and it has allowed us to focus just on Gary. Worded out the way it needed to.
OK...no more bitching about being tired while I am up at midnight with THIS GUY.
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