Voicelessness and Emotional Survival > Voicelessness and Emotional Survival Message Board
PR's new saga...
Meh:
--- Quote from: Hopalong on October 05, 2015, 07:00:05 PM ---
Whatever you can do to be Amber, rather than Superwife, will be good for both
your hearts, imo.
love to you
Hops
--- End quote ---
^^Sounds wise
sKePTiKal:
LOL.... superwife... LOL LOL ROTFL
Yeah, maybe I used to try really hard to do that. And there are still echoes. And I can laugh about the disastrous results (no animals or pots & pans were injured in those attempts) these days and just forget about it. I have a crew of guys to handle the outdoor stuff; trustworthy - they are retired cops or fire chiefs who started service businesses. Long time locals. My pool girl this year, asked if I needed housecleaning help... and I can reach her through the pool company; owner is my neighbor.
I guess, part of my panic here... is that hubs is always the first person I looked to when I needed a hug or help to think something through... or to actually do, what I only thought about doing for myself, because I didn't feel like I deserved it. And I don't WANT to make him feel guilty; I want him to want to get well and live. To the point, where I googled "will to live"... and after looking at the schlock on the first page of results, realize I'd better look somewhere else.
Penny: yes, I need the emotional support of people outside this little pod of two peas. Just normal human stuff - hear about what's going on in their lives, etc. Their frustrations, lives etc. One board of online friends was chatting last night, and 3 of us were talking about caregiving, our "patients" and relationships, etc. That may be one source. In real life, Hol & Matt are really good and have the connectedness ESP to know when to show up. FUNNY: the first night, after I'd come home I called Hol back and we were talking about what needed to be done at the cabin Mike & I just bought. for the winter. She & Matt do handyman stuff when they're making art... so I mentioned about how I'd left zud sprinkled in the toilets to try to counter the staining effect of the iron in the water. Holly remembers that domestic issue from living with me and Ex#2, before she left to start her own life. Told her I had visions of the cleanser completely dissolving the porcelain and the whole toilet... making it disappear. She had exactly the same neurotic vision when I mentioned cleaning that out. And we found it hysterically funny... Matt didn't get it at all. In the greater scheme of things I'm dealing with, who cares about a damn toilet?? But, the programming is there and resists being manually over-ridden.
Another funny, but with an edge to it: We were waiting on the new primary care doc yesterday in his office and my phone rang; first of all, most people just text me... and I saw the area code was MI... I always answer in case it's a business-related question. NOPE, it was my MOTHER - wanting to know if the other D in SC was alright with the flooding. Two months, I haven't heard from her -- and she picks that moment. Asked her if I could call her back... sigh. I haven't yet. She wanted complete details of why we were there and what's wrong with Mike... and ya know what? Somewhere in there, I MATTER TOO DAMN IT.
As to my struggles with bureaucracy, a few years back we did all the will & estate stuff. Yes, I am hubs' POA and Health POA. These doctors -- and their ministrations -- took place on an emergency basis and there was no time (and I was not present) to carefully check those boxes. This week, we are doing all the office visits and rectifying that. (I hear ya, TT -- yes, they are the same people. I make the distinction though between traditional liberals, who are really nice people and whatever term I've made up this week, for those who are trying to break what was working, and reinvent the wheel on the basis of a theory that square ones will save the planet.)
I slept in this morning. As in 10 hours of sleep, slept in. My brain needs this kind of downtime every few days right now. I don't worry about it. I'm also up and more active than I've been in awhile, too. Not over-doing it; little bites. Hubs got off the couch, went out to the kitchen and fixed himself some instant breakfast and grabbed a cup of cereal too. Dr. Zhou said yesterday that he should put any and all food regardless of nutrition into his mouth and swallow -- no matter how it tastes -- AND start getting up and moving around. M has lost 20 lbs in the last month - EVEN while not smoking for the last 2 weeks. He didn't really have it to lose in the first place. When he tried to change clothes yesterday, I think he realized that if he can't even do that without assistance - or get to the bathroom in time (it sounds like he's losing the sensation connection to the brain-prompt: "I need to go to the bathroom", before he REALLY needs to go) well then, it's fish or cut bait time. When I told him, I'm going to start pushing him on certain things... he agreed to it. I'll make sure he meant it before following through on it.
With Michael, it's always been the journey that's important - not the destination. (And he really shoulda trademarked that... since he came up with so long ago...)
Hopalong:
Jeez. I'm a liberal.
Anyway PR, I hear you. It's hard hard hard to have to stay so focused on his medical and other needs when inside you is the scream, but I need YOU not to be sick, not to leave me.
I'm so very sorry. It's like you can't tend to your own impending losses while you're keeping a finger in the dike. Exhausting in so many profound ways.
You're going to be okay. One day and one decision and one event at a time.
I'm really glad you have so many people in your life who care and who are there for you. And you've really done so many wise things in preparation. GOOD for you for getting the medical POA etc taken care of. That should help, I hope.
(I stood in a silent candle-lighting line at church Sunday and the man in front asked me how I was doing. I said okay--it was my D's bday which is kind of hard, but I'd done an altar flower display to find some joy in it, and it did help). So I asked him the same and he said, "Not good. My wife is dying," and the man in front of him and I just kind of held on to him. Later I handed him a card with my numbers and a note: "I can lend an ear. Any time.")
We need people to lend an ear. Every one of us has these times and the long lonely walks. What a difference it might make when someone doesn't turn away.
love,
Hops
lighter:
Oh Amber......
so frustrating not to have access to information for your dh M.
My mom put all her children on her list to speak to doctors, and it helped everyone with everything, IME.
We could phone up with questions and talk to nurses about test results and have conference calls with the doc, or just have him answer questions as they came up. Mom could more eaasily remain focused on being positive.... not that she always could, but she was amazing in her ability to persevere and crack on.
I think your M's motto....." it's about the journey," is very spot on. The choice to live every day we have left, or die a bit every day, is real, IME..... for everyone. It's very acute when serious illness is involved, IME.
We ask our loved ones what they want to do.... what do they want for that day? That meal? Treatment? Help making peace? Help pretending all is well?
My sweet B, in the end of his battle with colon cancer with mets to the liver, wished he'd spent his last months floating on a sail boat drinking margaritas, and I wish he had too....
now. (My mom was asking for chemo up to the end, when she was too ill to endure it, btw..... she did well with it, and B didn't.)
At the time I wanted him to live so I pushed every intervention, and so did his children........ I had no perspective or experience to help me understand what was happening to all of us. I didn't ask him what he wanted, and I'm not sure I could have heard the answer he gave in the end..... not at that time.
In the end, I think we end up wishing we'd given them what they truly wanted, and sometimes they don't know, and/or we can't hear them, IME.
The food was a trauma for us too. Chemo changes taste buds, and stomach problems and pressure from fluid in the stomach cavity couldn't be drained easily then, like it could with my mother. I think that extended her health and life. It's a good thing, if you need to think about that at some point.
I also found that giving fluids helped my mom stay perky, and alert..... she was herself, and present in the moment. If she didn't get fluids when she needed them, it was... trauma. More for us, but she had so much to do before she was done, and the fluids kept her life as normal as was possible when she was overcoming a set back, like c diff, or just struggling.... in the end for sure it gave her more time, and we had to fight for that time, bc the first Hospice wasn't a good service. Their choices weren't ours, and so we found another Hospice, but Lord...... very hard to always know exactly what to do. I think the combination of fluids, along with draining stomach fluids, helped her body handle the toxins.
(((((((Amber and family)))))))))
Meh:
LOL Toilet zuds.
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