This has been a very emotionally draining trip. There have been super highs and super lows, and usually they can happen within a day of each other. I find myself leaning more and more on my faith to make it through, because I am at a total loss how to handle it any other way. It’s affecting my mind, my body and my emotions in ways I really thought I was strong enough to handle.
Unfortunately the lowest low of the trip is learning the true depths of my own misconceptions.
I think that I was operating under an illusion that if I just moved back out here things would magically fall into place in many important areas, but after having been here a couple of weeks I’m learning there is no real difference between here and Texas. The best thing about being here is that I have friends and family I can see in person and they have been life savers. But the trade off has been I haven’t been able to be with my husband and I realize that friendship was way more valuable than I had previously given it credit for being. After being with someone for over ten years, the day to day can become a comfortable rut. A worn pair of shoes that fit your feet so well you forget how much you need them until you’re forced to go barefoot.
So in that respect, the trip has been very good for me. It put my priorities in place, not just for my husband but my kids and my friends and my family. I’ve been chasing distant stars when I had my very own galaxy. It was a wake up call I needed. For that, I am grateful.
But it hurts to learn the things I was chasing were never meant to be mine, and I think I’m in the mourning process of those dead dreams.
I’ll get over it. I have too much to focus on now to spend too much time moping. My aunt and my uncle are still the main focus of the trip and those circumstances change pretty much day to day. We still have the granddaughters for my aunt fighting for her best interest but we’ve reached an impasse in that her best interest may not be in the best interest of my uncle.
My aunt’s granddaughters know that her condition is terminal. The doctors pretty well told us while they couldn’t give us a time frame, it was something we could expect in the very near future. Her heart has already stopped once, she’s not eating well and with her DNR orders, the granddaughters have decided against any feeding tubes. So that means it’s pretty imminent.
Conversely, my uncle’s condition – while physically strong – continues to languish in this gray mental area where he’s still unable to care for himself or make proper choices for himself.
This has the doctors concerned that he will be a danger to himself if he’s not monitored 24 hours a day, so the doctor does not want to release him without strict supervision. The entire staff we talked to advised against their going home – but that’s where the granddaughter wants her grandmother to go, so she can die in her home as opposed to a hospital.
This comes with some complications for my uncle that I really think will negatively impact my aunt. My uncle thinks he is still a-okay to drive, to take care of my aunt and to go back to his routine. Part of the reason he’s so stubborn and doing stupid things in the hospital is because of this. While going home might in some way relieve some of that anxiety, I really feel it’ll actually exacerbate his condition when he’s told he cannot drive anymore (by doctor’s orders) and cannot go back to that routine he so desperately misses.
He’s not mentally able to grasp this concept. Every time we see him I have to spend a lot of time explaining it to him but he still thinks he’s going to go home with us. I can’t imagine this being any better for a caregiver, a stranger who tells him what he can and can’t do inside his own home.
My mother in law went through this not so long ago with her father, who had a stroke. She advised that it was common that the person afflicted could ultimately become violent and angry due to the frustration and confusion.
I don’t see how this will help my aunt’s final days be peaceful.
Especially since her own mental state feeds off of him. If he’s agitated, she’s agitated. And while I can appreciate that affects her stay at the hospital I think it would only get worse in her own surroundings because she, like my uncle, doesn’t grasp the gravity of her situation. When she is lucid and cognizant (which isn’t often), she’s as stubborn as my uncle. Last time we went to see them she was telling us she had to go home so she could clean house.
The doctors advised us it was common to release people to go home and they would quickly return even more ill/injured than if they had not left at all. My mother in law also told us that her dad ended up falling in the bathroom and injuring himself within a few days of his release from a nursing facility.
So in my heart I know I’m doing the right thing.
Emotionally, I feel like an ogre. It seems to mean so much to the granddaughter that we allow my aunt to go home to pass peacefully in the place she’s lived for decades. And if my uncle’s health were not so compromised, I’d support it fully, even though I really don’t think it’ll make *that* much of a difference in her peace of mind when she passes.
All her organ systems are shutting down and she doesn’t even know where she is or who we are from moment to moment. She even thinks that her long dead parents or siblings have come to see her. Which… who knows? Maybe they have on a spiritual level.
The only thing I can really do now is protect my uncle. The granddaughter feels they have a lot more money than I’ve seen evidence of their having (like five times as much), and says she has proof of this. No one I’ve spoken to, including their lawyer, seems to feel this is the case. So I don’t know what to do. I just go day to day and try to find the levity and peace where I can.
Thank God for friends like Bliss, who has helped me find the balance so many times this trip.
So that’s where we are. For now.