This is about carpet cleaning, finding my box of postcards, selling DVD’s on ebay and cleaning the van: in other words, THE IMPORTANT THINGS.
Let me back up a little bit. You know how when you get a flu or sick and you curl up in the corner for three days (unless you are one of those types who gets a bell and wants smoothies brought to you every hour)? Well, when you get BETTER, then you deal with all the little stuff that has piled up over your sick time.
But what happens if you have a condition where every week or month you have less and less energy, and you have been spending more and more time in doctor’s offices, or specialists, or tests? Does anyone know THIS feeling (I think you do, or recognize it). And then what happens is, even if you do feel tired or exhausted or sick, you are faced with so MANY little things that you have to make those decisions anyway (and it seems a never ending stream). In fact, there are so many decisions and so many things that you BURN OUT (there is caregiver burnout, but you know what, there is also DISABILITY BURNOUT when you are sick and tired of being sick and tired and how the world expects you to produce all these decisions/papaerwork and yet where is the YOU time, the FUN time?!!!! Or even the time to just be SICK!).
So you run away. Now sometimes, I try to LITERALLY run away, which does me little good and it turns out there is even more phone messages and more decisions to make when you get back. Or I run away mentally, in terms of making decisions, I make a tent, or the psychological equivalent of a tent and hide away. Because some weeks I get very, very tired. See, I have had so many tests, I have called and called big corp or insurance or some group, I have had to take on my own care giving agency because yet ANOTHER person has been sent who can’t read (when you are getting an assisted shower and you ask for shampoo and they can’t find which bottle of two it is….), and I just can’t do it. And that is all in two or three days. So I actually FANTASIZE about being housebound, as in, not by my computer taking 3-10 phone calls a day and having to make dozens of tiny decisions but actually like, just in my bed staring up or sleeping. Because then, getting to the doctor’s wouldn’t be my problem anymore right! (we still don’t know how to deal with that, as right now Linda sometimes takes off work, wheels me semi-conscious to the van, puts me in, drives me there, pulls in into the chair and wheels me into the office). But that so far can never happen, because no one, not the doctors, or the insurance companies, or the specialists, or the labs, or the caregivers, or even life-line ever relents. I honestly believe that when the time comes for Blue Cross to pay for my cremation, they will leave 3-4 phone messages and send several letters demanding my signature before they can continue.
And of course, Linda has all this too, in her own way: has paperwork from oxygen, from medical companies, from pharmacies, from insurance companies, from everywhere that she needs to fill out. Then there are the other details, of how many pills does Beth have left and when do we need to make doctors appointments to get refills and has she called to find out who is showing up tonight for the overnight shift (because the care agency is supposed to call her but doesn’t). And so all that goes on the kitchen table and only when I say, “Whatever happened to…” does that maybe, if I ask a few times get done and she runs away in her own way, sometimes to be with me, to spend time with me when I am sick or to do things or to just STOP being a caregiver. Or to go out to a movie to STOP and forget for two hours having all this extra stuff to do. Only it never goes away.
And the problem is that even though we are required every day to make decisions, we never know if these are the right ones. Do I go to badminton today or try to sleep an extra few hours; if I have a TIA tonight then going to badminton was bad, but if I have poor circulation later in the week then not going was bad. But there is no book, no guide to what is going on. I want to play the double bass, but when will I have time to do that? And with my hands, not able to feel, my left hand has almost no sensation at all, so how do I hold down the strings? So is this it, am I going to die soon, like in months, maybe, should I sell it and get the money (it is a several thousand dollar instrument), or if I live for five years will I regret that I don’t have it, that part of WHO I AM I sold off too soon? I don’t know.
There isn’t a book on how to grieve or how to make these decisions. So for another day, I run away, because every day, Linda and I have to make the decisions that other people spend weeks or months deciding. But we don’t have weeks or months because there is always more decisions that have to be made the same day or the next day (push for specialists or take a break, file a complaint with the college or try for a second opinion, call the owner for the air conditioner, then which one to buy, where to put it?), every day, every meeting it seems there are more of these decisions. And some will get delayed another day, and another until there are so many to make that all of life seems out of control.
Which is where cleaning the carpets comes in. Because each of us, in our ways of trying to regain control in a sea of tidal waves holds on to some THING some little thing that is important. And it nags at us, that we cannot even do this one thing, this little thing. Well, today I found out that Linda has wanted to do not vacuuming but carpet cleaning in our apartment, like with the water spray for about 1 year. All the medical equipment and the vortex of our kitchen table (where paperwork needing to be done goes to die), and me being sick have delayed this. So I am going to try, by Friday, with the help of my home care to PREPARE the living room, the bedroom, the hallway and the kitchen area so that on Friday night Linda can rent a carpet cleaning machine and gain back that control she wants. Scratch that itch. And she arranged with someone to CLEAN the van, another itch that she wanted scratched for a couple months. Does it make sense to me, to chose that over EVERYTHING else. No. But I know that it does to Linda.
For me, it is posting the DVD sets I have watched to sell on ebay – I try and try for months, get two or three listed every few months but never really list them all, they just stack up. From Due South, to Blood Ties, from Judge Deed to New Street Law, I have a year of DVD’s that I want to send off and get money for to put in my account so I can buy more. Because that is something I can do when there is little I can do. Only it turns out there is always SOMETHING more important, more immediate, or more overwhelming to cause me to run away for another week, another month until now it seems almost a year has passed. And will I do it tonight? No, becuase it is past one, and I need to post the blog, and I have a meeting at 11:00 tomorrow, and I need to dress and wheel there, and after that is home care, and then posting the three postcards I got done today. Then sleeping and after that....I am sure there is another meeting, another something.
I think we all in caregiving, or maybe even family situations have this feeling, the unfinished project, the table top that is never clean. Only when you become ill and disabled, the little becomes everywhere you look. How can I dust, when I am in a wheelchair? How can I change the room around when I am too weak to move boxes. When does Linda have the time to dump me out for a day and give the area of the apartment she wants a good cleaning and sorting. We have lost control over the big things, the life and death issues, and slowly, we are losing control over some of the major things; our future together, our career plans, our apartment turning into a hospice. So where is left to find control? I don’t know. All I know is that maybe, after the carpets are done on Friday, Linda will someone unwind, will feel better. And that one giant will be killed. It is worth trying.
PS – if anyone HAS a reasonable plan for me running away from all these responsibilities and decisions, please let me know. I also want to go away, either mentally or physically and not have to return to 16 specialist appointments and five organizations clamoring for paperwork. I want to have a tent, some plushy animals, a few books and a tea set. What happened to camping out in the backyard? Or rather, being an adult can be hard, and being a mature adult facing the kind of decisions we say that we will make, “in thirty or forty years time” sucks. Anyone want to come make my living will, because I don’t want to? How about going through my estate and making out a detailed will? Blah! Now getting the carpets cleaned, THAT I might manage. You notice I can push myself for Linda easier than myself (my own giants are scary, and hard to kill!)
2 hours ago