I hate waiting on the phone to ring. Working from home seems to make it worse-can't leave, can't focus....wwwaaaaaaaaaaaah. Based on the calls I will need to spring into action, make decisions, etc. in a fairly quick manner. Until I get the calls, I can do little to research, etc. because, well, I need to know exactly where we, or rather, Uncle John, is at.
Now, I pretty much KNOW where he is at, but I need the medical profession to tell me. That's what they are getting paid to do-so why don't they do it?
This is the limbo that I've remained in limbo for the past few months. And I am glad that I'm not a a new job somewhere trying to focus when all this is going on. It wouldn't be pretty. Well, none of this is pretty.
The thing about waiting is that each hour chips away at my existing veneer of bullshit and calm. By the end of the day, I'm borderline distraught.
Around noon today it hit me this is likely how it's going to be for awhile and I just need to make peace with that. Parkinson's and dementia has its own timeline and now some of th worse things that can happen are happening.
I'm over the "I can beat this if I just think harder/try harder" mindset. How arrogant, as if I could achieve what medical science, Michael J. Fox and Mohammed Ali could not. But you know what-we DID beat it for awhile and got Uncle John a couple more years that he wouldn't have had.
I actually said today "it's like he's rushing headlong into madness...." like it was his fault. And it's not, not his, not mine, not anyone's. It just is.
From a caregiver's standpoint, it's a lot easier to do the job when progress is being made. When the tide turns, and it's a losing battle, it's a lot harder and a lot less gratifying. But this isn't about self gratification. It's about making a loved one's time here as easy as possible.
We westerners are sooooo anti-death. It really offends us. And decline is in many ways worse. Death is final....decline is ongoing.
Two houses down from my parents (both older than Uncle John) I have to be very careful to share in ways that don't agitate their own fear of decline. Never in my life have I had to consider the impact of my own words and actions like I do at the moment.
But maybe that's how it should have been all along. So much to learn...
7 comments:
It is so hard to watch a loved one on that final journey - and never knowing what/when the final stop will be. Just try to hug and enjoy them as much as you can. Ain't easy...but what is?
Explaining things is the absolute worst thing. How do you tell someone you love that "you don't think clearly all the time and you need help and attention"...well, actually, that's how I did it.
But I made eye contact, I didn't look away and I didn't ask for him to feel sorry for ME, poor me, giving the news....I really could write a manual on delivering bad news, a talent I wish I never had to use.
debra kay, you may know my 91 year old mother has zero memory. we kid her about it. and we cherish the fact that in the moment is she present and vibrant. i try not to forget that. i wish you well with uncle john. i hope he is at peace.
I've noticed my mom's memory slipping as well and it's scary. Unlike you, I'm not brave at all. I haven't had the courage to tell her "you already told me this" or "you did that same thing yesterday." I just nod and say yes.
KJ-those moments that he is present and contact is made are electric for both of us. I think as a writer I live for the "connection". And for someone that you have to work a little bit harder to connect with, the connection is very sweet indeed.
Michele-you can tell them but they may not believe you. With my Mom, the only thing I try to short circuit are the litanies of complaints. Sometimes I finish a story for her, but that's a family trait and she likes it when I do that because that's what she and her sister do.
my mom died at the age of 57 and my dad at 59 and i was 33 and 35, i mourned the'good years' that i would never have with them, but when i read this,it makes me wonder...
Ah, FY, I don't suppose we are ever quite content with what we get. Some things just are what they are.
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