My Thoughts and Prayers

When someone is ill, people pray, send good thoughts, send cards and letters, visit, call, bring food. bring plants and flowers and other presents and volunteer to help any way they can. It makes a difference, of course, that support and help. But it isn't a cure. It's not that support might not help you get well. It's just that the support that truly might help is the diligent relative or caregiver managing the real problem. In the end, no one can save anyone. Not forever not from everything.

If you think inserting yourself in pre-op patient prep room to pray helps medically you are wrong. You are in the way. If you think bringing a plant, a green jello concoction and telling relatives that they don't know what they are doing vis-a-vis the patient's care is just the ticket to restore your friend to the healthier person you enjoyed...well you are wrong, too. You might give your friend a nice visit and some hope but you aren't saving the day.

Cards and letters are appreciated and sometimes give the person the spirit to fight on, but they're not a cure. I was surprised that my sister saved funny letters I sent to her while she was fighting to recover from hemorrhagic and ischemic strokes. They were fun and she liked them which pleased me, but it was therapists, the family close to her, the docs and her will that got her somewhere, that helped her recover to a certain point. I sent the letters because I was far away and helpless to help her.

And when people say "if there is anything at all I can do?" Yeah, most don't mean anything really. Particularly not the tough hands on patient care. Certainly when I say it I don't mean it. It's hard enough when you are the primary caregiver and can't avoid it.

Dad's last ditch fix appears to have failed after three weeks or so. We went to the emergency room for the second time in the new year today. I am tired of being asked to speculate on what is happening inside him, what his doctors think. Yes, it' moderately helpful having me around to recite his facts since reading a chart seems to be a lost art. So I may actually help him get better or at least get comfortable. My thoughts and prayers, though? My opinion is that they are at best placebos. Maybe yours are more effective. But really I don't think so.

Today I will write a sympathy card to someone who is grieving. It won't really help the grief process but it is the right thing to do. Just like all those cards, letters, prayers and good thoughts coming my dad's way. They are mostly the right thing to do. Except get out of the way and don't second guess the caregivers.

Fragile and Fleeting

This moment...is gone now.

Life is fragile and fleeting. Even the most solid things turn out to be ephemeral or change before our eyes. We are the most fragile thing in the landscape, though. Well, except for certain other living creatures.

This is a change I embrace. Really. Except, of course, when it takes my body down an inexorable hill and takes my friends and family away forever, here and there, randomly.

I'm writing this because I like the words ephemeral and inexorable. Not really. But I do like them. I wonder when I learned them. Did I find them in an article in The New Yorker? And run to the 'old school' paper and board dictionary (my favorite American Heritage one that I had several editions of?) to see the definition. Why have these words stuck in my head and left me confident of theirs definitions when words like jeremiad always send me back to the dictionary (premier dictionary.com, twenty bucks a year)?

Seeing my dad's decline, reviewing say the last seven years since my mom died, makes me realize how you lose things, bit by bit and step by step. One day you can, the next day you really can't, you rehab but don't come all the way back.

And yet, we can build up. I haven't exercised enough the last two months, too entrapped in my dad's illness and my own sloth while sitting around with him in hospitals, at home, waiting to do what he needs. When I get back into my program, my stamina and muscle tone will improve. Indeed, the simple home PT my dad is getting is helping him make gains back. Against the grain, improvement while declining.

We improve, we slip, we slide. It's over. It's enough to make you eat good food, drink good wine, have a cocktail or two, listen to music and do frivolous things. And...when I've escaped the care-giving mode? That's just what I've done. And I've only managed to feel a little guilty about it.

Today's shop window reflection self-portrait is intended to convey the fleeting and fragile feeling (very alliterative!) and was taken Saturday at the wonderful Mercury gift shop on Second Street.

Not All There

Do you ever feel like you aren't completely present in your life? Like you are entering a new phase where you are adjusting to new realities by halting steps, sometimes one forward and several back?

That's how I feel now. I have been through ups and downs of my dad's medical condition. We seem to be settling into a situation where he is getting stronger, no longer flirting with imminent death although you never know. But he is dealing with side effects of the treatment. He is able to do some things for himself and to complain to his caregivers (me at the moment and my niece and her husband when they were here). I suspect he'll be unhappy with the hired guns that are going to be his reality after I figure out just what he needs and can afford and get some help. He is adamant that he wants to stay in the house he's in which we own but for which he's been paying all the ongoing expenses (taxes, insurance, yard maintenance, utilities, phone, cable, cleaning, etc.). Add on top of that paying caregivers to come each day and help with daily housekeeping, laundry and bathing and such and it will be expensive for him. He can afford it for a few years so why not? But the details of managing hiring and also of absorbing complaints will fall to me. It occurs to me, though, that sometimes he is a little more forgiving of the outsiders. I'm just saying.

Anyway, I feel only partially present in my life. I keep absorbing new things each day, victories and defeats. I feel like I'm in a box with various slits that let you see forward but you have to shake your head to make the images come together to make any sense of it and then you get dizzy.

I'm neglecting things I want to do in organizing my own life...getting some computer issues resolved, getting my condo cleaned and better organized, organizing taxes for 2009, etc. Sometimes I'm just sitting around at Dad's, just babysitting or waiting for the home health people to come by or doing little chores like laundry or taking out trash or tidying up. I will pull out the laptop and do things (like posting Holidailies) and Dad will mildly complain about it. When my niece and her husband were here he complained that we were always on our laptops. He didn't know what we were doing with them. I guess he thought we ought to be doing something he saw as useful all the time. Of course, the elderly are absolved to nap between bouts of watching screeching on Fox News!

When I get away, I just want to go out with FFP, read, eat decadent food, drink. In other words live the decadent life until I arrive, partially present in some further broken down future like my Dad's.

If it sounds like I'm complaining, I'm not really. I'm just trying to come to terms with my dad's reality and my own and then live that life fully. I have lots of issues to solve but lots of resources to solve them with.

One foolish pursuit I hope to have more time for in the future is the taking, editing and displaying of shop window reflections like today's and the others I've been showing during Holidailies. I think the daily exercise of writing for the Holidailies challenge has been a good thing although I'm pretty sure it has been mostly a long screed against the duty of daughterhood. Ah, well. I'm a lousy caregiver and admitting it may make me a better one...or just get that off my chest.

Selfish

Do you ever say to a someone taking care of a parent, spouse or friend "take care of yourself?" Yeah...people say this to me all the time lately as I've worked through this latest weeks-long health crisis with my dad.

Not a problem with me really. It's all about me. As I do what I think is right and proper for my dad I think constantly about what fun things I've cancelled. I wonder whether Forrest (and maybe someone enjoying a second ticket or seat at an event) are having a good time while I babysit my dad or attend to him at the doctor or hospital.

As I plan for my dad's future with him it is not in the back of my mind what will happen with me and whether I will be able to plan for my future for trips and commitments and the alleged joys of retirement. It is top of mind. Me then Dad. I'm sorry, but there it is. It doesn't mean I don't have his best interests at heart. But I'm the opposite of a martyr. Is their a word for that?

In the last two years FFP and I went on three trips I think. If you don't count one night in San Antonio and two nights at Lake Austin spa. Each of those longer trips had the attendant worry of some health problem with Dad and guilt over going away. It didn't end too badly in any case, but yeah I felt a little bad about and maybe resentment over the guilt.

Now the good thing about about my dad is that he doesn't want to be a burden and you can openly discuss your own frustration with him. My mom wasn't lucid at the end and you couldn't have had that discussion with her anyway. She was very different in that way.

When my Mom was in the hospital for the final 90+ days of her life, I spent a lot of time in her hospital room trying to keep her from removing IVs that were saving her life while she was hallucinating. I'd read newspapers and one night I was reading a travel section from "The New York Times" and dreaming of being able to travel, guilt-free. My mom said, suddenly, out of the blue, "I need to die or get better so you can travel." Yeah, I felt guilty for a few seconds and I knew she was hallucinating random stuff. Still I saw the wisdom.

So, when people say 'take care of yourself,' I'm thinking 'you bet I will.'   

Not Knowing What You'll Find

When you are the allegedly responsible party for someone and you put them in someone else's care by leaving them overnight in the hospital, you get this nervous feeling when you are headed back to see them, worried about what went wrong and convinced that you are responsible. It feels like a sucker punch and you have to remind yourself that at the moment your job is to find your way to the facility and go in and then deal with what you find.

I left Dad at the hospital last night and went to his house for some food and rest. I felt like I was abandoning him. I'd had to remind the nurse to do something right before I left. And when I got away I wondered if they'd given him his evening meds. It was shift change and things are not always running smoothly. And his meds, well missing a dose is not necessarily life-threatening for him. My mother received an anti-convulsant that had to be dosed dead on so when she was hospitalized for a hundred days or so I went crazy with concern when they screwed it up.

So I found my way through the dark and fog this morning, ready for the sucker punch, hoping he was OK. He seemed to have been cared for just fine and they gave him pills last night he said. All he wanted really was his usual early pre-breakfast of a cookie and a cup of coffee. And guess what I brought?

I'm not a great caregiver, but I do care and that knot in my gut is my proof.

It's day two of Holidailies and I didn't want to miss so I did this on my iPhone.