SEPTEMBER 3, 2010 11:59PM

Some of You Seem to Have Missed Me. Here's Where I've Been.

Rate: 74 Flag

Ma, when you wake, I’ll know it. You do not know about the bed alarm I have placed between mattress and bedspring, and you’re hearing is going so you won’t hear the alarm that will ring near my head. Rough time on the toilet?  I’ll hear that too. I have bugged every room in the house, but technology is now beyond you. Turn on the stove while I am sleeping? I’ll get up and cook that egg for you. You’ve started one fire already. Raging at the television while I’m out weeding or reading? I’ve got speakers outside that alert me to all your doings.

We have entered the time of surveillance. The right to privacy no longer applies to you. It is my job to observe, monitor, and intervene. As necessary, I will search, seize and obstruct your movements.

While continuing to preserve your right to refuse the anti-psychotic and anxiolytic medications I believe would help you, I cannot refuse to keep a sharp eye out to see how I am needed. That would be negligence, which would be unethical in the first place and criminal in the second. You try to sneak, but you’re not getting away with anything. I am grateful you are too weak to run, or even to wander.

You are long past the point where if someone else cared for you a placement in a long term care facility would already have been enforced. You are lucky. Trained as a Long Term Care Ombudsman, seeing the worst possible things in those environs and forced to investigate them, that will not happen until I cannot lift you into and out of bed on your worst of days.

I sold your truck. Took your keys and sent your license back to the state, replaced it with the I.D. they sent back (finally, after much fighting about how I could not possibly get you to a D.M.V. office). You in your yellow muslin sun-dress. The best state-issued identification photograph I have ever seen. The dress I poured over you for your birthday, dressing you like a doll and putting on the malachite necklace I bought you for flag day. I cooked lobster for you and we played Elvis Presley CDs.  You don’t even know it’s gone, not having been out of the house now in four months (no matter how I’ve tried to get you to see the chairs I have placed in the sun).

Sometimes you call me ‘Jason’ although I am Robert. I do not know who Jason is or was or if he simply some construct of your mind, and you have always corrected yourself almost immediately. This is not important as long as your ‘Jason’ is allowed to clean and care for you when you’d rather him than me. Still, it feels like a bit of a loss. Occasionally, you also confuse me for the dog. That is a particularly difficult one, for I do not want that ‘chewy stick’.

You stabbed me the other evening with the meat fork. I was getting ready to bake potatoes and while piercing one with a fork you came out of nowhere and shoved the meat fork through the potato in my hand, all the way through my hand.

“You have to use this fucking fork to get all the way through the potato. Don’t you know anything you stupid bastard?” you screamed.

I didn’t let you see my hand after I took the meat fork from you and finished piercing the potato. Your aim was amazing, missing bones but going through from the palm to the top of my hand. I know you can’t help yourself. And I have about a million Band-Aids. Later in the evening you noticed the bandaging and you wanted to know what I had done to my hands. I mentioned scraping it while moving some concrete bricks.

Today you thought it was getting so hot inside I should turn the heat on and make sure the air conditioner was running. Today you asked if it was global warming that made it so warm for December, and why hadn’t I put up the Christmas tree. Today I took the scissors from your hands as you thought to trim Barkley’s eyebrows because they seemed long (he was picked up, trimmed, and dropped off yesterday). Today you toileted yourself all day successfully.  I don’t know what precious gifts night will bring.

You are losing your stories (hence, the title of this entry). I work actively every day to try to help you pull from your long-term memory the stories of your life on The Island, to help you remember things so I can write them down for the novel I’m working on based on your life. Your short-term memory is shot. Yesterday (I counted) you asked nineteen times what day of the week it was. The calendar hangs on the wall just to your left, the X’s mean those days are gone. I am quite religious about my X’s.  I want to hear again about the time Grinne Vasfahrt let you drive his new Olds and you rode it straight up onto the woodpile. I want to hear about you cooking the crow with Danny VanDerZanden, then getting beat by your mother for eating a ‘bird sure as hell full of worms”. But you’re losing these, too.

I haven’t told you the County is going to allow The Island to be mined for gravel , that it will become a lagoon, a lost place in The River, the farms our ancestors settled in the 1860’s lost. I can’t bear to let you know.

When you seem to be particularly well, I’ve done the shopping. Walking into town with my little cart and my list. There’s been a cost. Pulling the cart has done something to my arms and my back. I can’t do it anymore because the pain after is too much, at least for a few days. You wonder why sis and her partner come out now each Friday night and drive me around. I just tell you it’s easier. I don’t tell you holding my arms in front of me to wash dishes is excrutiating. Soon I must paint the house and this will be hell. I will also keep this from you. Unlike yourself, uninsured, I am without recourse to anything which might relieve the pain. This is a burden, but I refuse to believe it burdensome. That is grace. (Please,  let this pain be grace.) I have to believe now in grace, even if I refuse steadfastly to believe anything else.

It takes about four hours per day to care for your body on a personal level. (Bathing, toileting, medications, getting you in and out of bed, etc.). It takes about two hours in the kitchen between cooking and feeding and cleaning for breakfast, dinner and snacks. (Curiously, you are never in the mood for lunch.) To keep the house clean (and I am uber-clean-freak), I estimate another four hours, what with vacuuming, laundry, dishes and dusting (we live on a very active road and the dust is unbelievable. Ma being asthmatic, it’s something I have to be constantly vigilant about.)  Let’s say I spend my own hour each day pooping and peeing, taking a shower, shaving and brushing my teeth. I must attend to all the outdoor things, and spend about an average of one hour per day on such (though some days this is four hours and some days none). I spend about three hours with you just observing your present state. This is a most important activity. Even if you’re just watching television, I am observing you. That’s fifteen hours.  This doesn’t equate to nine hours of downtime, or nine hours of sleep. Because you are on a three up, three down schedule and your circadian rhythm has vanished, I am on the same schedule. I now sleep for about one of your three downs. Anything else is catch-up.

Sometimes, if I think you’ll sleep for a while, I nap outside on summer nights (and anyway, I have all these alarms). I wish I could see the stars, but my glaucoma has advanced to the point where they are simply not there. I am told new glasses will not bring them back. (I am writing this first in word in 18 point font).

Try as I might, Ma, you have no good days left. Try as I might, I have none either. You get excited when I make you bread pudding or crème brulee or your favorite thing ever, a French Dip. But these are only moments. My good moments are those few where you do not rage, or when you remember me.

Although not enamoured of the question, I have certainly come to understand the feeling behind “which tools?”*******

It seems some of you have wondered where I’ve been…

Cat

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No matter how you write it (and you write it well), this sounds difficult, hard, painful even.
I am SO delighted to see you back, Cat! But I'm so very sorry about your mother's continued deterioration. Thank you for giving us an update. I've thought about you during your hiatus, hoping you were all right and that your mom was doing well. I'm distressed to know that not only does she not have any good days left, but you're having physical difficulties as well. You know that living the life of a constant caregiver can be taxing and you need to take care of yourself in order to continue taking care of her. But I'm not going to lecture--you're smarter than I and you know what and how much you can bear. I'm just happy to see you back here. Please don't stay away again. This place truly isn't the same without you! Rated. D
my first feeling seeing you at the top my favorites' feed was a mix of amazement and something like joy -- Cat's back! didn't expect to see you here again

reading your post reminded me why I thought so highly of you, the crisp, no-nonsense prose style, the tinge of ironic, not to say mordant, humor on the darkest of topics, the intelligence, the humanity, the self-deprecation

the simple daily heroism of keepin' on keepin' on in the toughest situations, the anecdotes and observations

I'm glad you came back, I'll understand if you don't show up very often, I hope there's reward in the struggle
It's good to hear from you.. sorry about your mom.
Roy, Grace means the reward is the struggle. That is not martyrdom, but love.
Glad to see you back and to read how you are doing even if things are so hard.
It's so great to see you in the Open. Here's to grace, to being able to see it in the worst circumstances.
Who ever thought that life would come to this?
Welcome back, you bastard. I won't bore you with platitudes, but I will bury you with praise. Your tale of caretakering puts me in mind of similar, sadly-fascinating stories writ well by Jimmymac, another marvelous writer on this site.
It's so good to see you. Glad you are still on this planet (and going to write another book no less!)
Your meditation on grace was moving. This left me speechless.
All the best to you sir
and welcome back.
Would that the world were filled with more like you, self-less and only looking for the good stuff life has to offer.

The best, the VERY BEST to you, and to your mother. On some level she does know what you are doing for her, even though you'll never likely be aware of it.

She is, and we certainly are. You are wonderful.

Please stay with us when you can, we'll continue to look for you.
I have missed you! The daily schedule you describe was mine from early 2009 until just this summer when Dad's heart stopped. He was walking to his room and just dropped and was gone, like his soul walked straight out of his body and kept going. During the time he lived with me, many days I sorely wished you were here just because you spend your days the way I did. Glad to see you. Hugs to you and your Mom, too.
Still love you Cat.

I am grateful to know that you are still putting one foot in front of the other. I remember the difficulty of watching my own mother go through similar changes and I know what you mean about the reward is in the struggle.

Still, I wish I could give you a night off.
For starters, you have been way more than simply "missed". While it is too much for us to expect you to treat us to your elegant writing and humanity on any sort of continuum given the everyday challenges of your life with mom, know that you are both loved and respected for taking time out of your harrowing schedule to give us a glimpse of what you face in the mountain of each day. My respect, admiration and love for you are unwavering. If there is a God at all, I hope that he/she/it takes notice of the tremendous gift to humanity that you are, that you exhibit, with each word, feeling, thought, action and movement and that you are blessed tenfold for who you are and what you have been, not only to your mother, but to everyone whose life you touch, including mine. Much love, mighty one. Much, much love.
Oh god, if I prayed, I'd pray for you...
Your reputation precedes you among the newcomers here, and thus your return brings much delight and anticipation. I am looking forward to getting to know you. I also offer my sympathy for your filial travails. Your devotion to your mom is awe-inspiring.

Now, if I may interest you in some cheap Ugg boots and excellent bargains on name brand jeans and bicycle tires...
Hello, my old friend. I am here to listen. I am here to offer my meager support. You were one of my first favorites here. I still remember this: "Did you get anything else for Christmas besides that horn?" (Close to the exact quote, I believe, from one of your brilliantly amusing posts). You need to talk to relieve the daily stress that made my stomach ache for you. Peace, Cat and welcome back.
What a great surprise this morning! That's one heck of a chock-full update alrighty. As always, it is a pleasure to read your writing and, through this medium, bear witness your grace.
This is disjointed, jangled, tangled-up, brutal, and as authentic a recording of this experience as I have ever seen. rated.
Oh Cat, we are so happy to hear from you. So sorry for all the difficulties. You sound like you could use gallons of tea. Others have said it more eloquently, but your presence is truly missed. (I especially miss the word games we used to play.) Here's hoping that your novel sells a bunch. You'll have all of us buying it, and promoting it for starters. Take care, and come back when you can. You are a special man.
I missed you terribly!! My father has dementia. I am right there with you. Hugs to you.
when I came to OS you had already left
but I heard, here and there and everywhere about you, and wondered what type of writing could touch hearts so
now I do not wonder anymore
yes, let it be grace
Everything else is said or will be.

I've missed you.
I don't know you, but I certainly know this, and I'm sorry. It is so so so so so hard. I became the Kind Man, that is, when I wasn't the Filthy Whore. This phase will end, and then surprisingly, you may find you miss it.

P.S. Music cuts right to the long term memory. Bing Crosby's Christmas carols got mine humming, and even singing a few lines, you know, in June.
Oh, bloody hell, CB. It's so nice to see you back. I hope it's for good. We've missed a lot (cf comments from Lea and Cartouche). There's a whole new generation of OSers out there that haven't had the pleasure of reading you.
Gracefully done Cat... damn, the tears
If it isn't grace, it is certainly holding hands with it. Love for you.
Obviously I have a bunch of thoughts-- here they are:

My dear man, what a wonderful gift you are to your mother and obviously to others with whom you share your world and outlook. I need the kind of inspiration you're providing, as I am caring for my mother with Alzheimer's Disease. I've been feeling sorry for myself lately, although I can see that I should count my lucky stars as mom has good days where she isn't railing or paranoid or mean. Because of this piece, I'll cherish those more.

I am worried about what all this giving does to you but it appears as though this is the road you're determined to walk and so I won't urge that you take another course. As one of my mentors says, "we build the road and the road builds us," and judging from your writing you've rebuilt yourself to near perfection.

Are there any options for healthcare for you?

I just ran across a company the other day that does video monitoring of elders. They provide the technology, the monitors, and case management by an RN for about $600 to $1,000 a month.

If you need any support from someone who knows a little of what you're going through, I'm here.

Blessings,

denese
This I suppose is our introduction. I believe, like vanessa, you had already left when I arrived. Your story above is familiar as I lived it with my own mother. May you find peace wherever you can.
Cat, It's good to hear from you. Has it been easier without us to report to? Or harder to have no one to describe your difficult days. Remember: This too shall pass. We've missed you.
xoxo

yes, grace.

mrs. michaels and I ponder what you're up to often and are always sending lots of love out into the universe for you. take care, friend.
Oh, Cat.
We should--all of us--wish for a child like yourself--kind, loving, and constant. Someone not only to tend to our body but to remember for us.
Do you remember a Goodman song--The Dutchman? Different relationship but a love that is vigilant, like yours.
Have missed you, my friend. I imagine you saw my plea to return. Wish I could make things easier for you now.
Blessings...
now i understand why i've missed your eloquent writing. i wish you well.
This is exactly the place I thought you had been.
Only those who've done daily caregiving know what it's like -- but you give people a great chance at understanding it even if they haven't done it with this clear, honest, heartbreaking yet utterly un-self-pitying post.
My sympathies, welcome back to this world. R
Courage and grace have always defined you and always will. Welcome home. Please stay. And take care of you too.
oh cat, you have been sorely missed. Grace indeed. Please also take care of yourself-- you are no good to your mother if you cannot attend to her.
I'm very happy to see you here, Cat. This was difficult to read, but I know you have been blessed with the patience and grace to help your mother through this. Love and hugs to you both!

-Pawed-
Oh, Catbastard, I was getting ready to write a post about holding my breath until I turned blue, waiting for you to turn up again. Your writing is too good for your absence not to be felt keenly.
Trying to comment on this is beyond me. I am in pain and awe at your plight.
Now I remember why I've missed you so. What a wonderful surprise this afternoon to see you in the Top Rated column again.

I'm so sorry about the burdens you have to carry and wish there were something I could do to lighten them for you. Please know that my thoughts are with you and your mother.

As to your own health, have you looked into the Pre-Existing Condition Insurance Plan (Obamacare)? It rolled out on July 1st and all you need do to qualify is to have been uninsured for six months and have a rejection letter from an insurance company. It might be worth it.
I want you to know that you are special for doing what you do,
Oh Cat, this is heartwrenching! I didn't have this experience with my parents, and until today I could not even envision the circumstances entailed; but because the size of your heart strings and your ability to play their songs so true, I have a clearer understanding and empathy. My thoughts are with your mom and you.
RATED
This is why we miss you
CB...so good to see you!!!, More later....ox
Cat you are a resourceful man. Please take care of the glaucoma before you go blind. Is there indigent care? the obamacare that someone mentioned. If there is anything we can do to help please let us know. can I help research for you? glaucoma, as I understand it is fixable.
Sweetheart, I just read all of the comments here, and I surely hope that you immerse yourself in the total and complete outpouring of love and support that you've earned here at OS.

You earned it. And I feel certain that any one of us would do anything that we could to help you. You've not asked for it, but I guarentee that we are all willing.

Let the love and support wash over you right now.

You earned it,
What Roy said. What Cartouche said.
Kittehs don't often get tears in their eyes.
It is Grace, and we wish you all the Grace you deserve.
~fatRocco and stillferalRusty
Rated this yesterday, but I didn't know what to comment. This hit me hard. It's very real to me, and you describe all the stuff I couldn't bring myself to do. I worked my ass off for years to pay for my mother's care and it broke my health, but I knew from the very beginning that it was an easier choice than doing the 24/7 care myself, even with having to manage everything. I started out with three employees taking care of her round the clock for five years, and then eight years in an institution. I was an out of work schoolteacher when she got bad, and it was easier to find a way to pay for all that than it would have been to do it myself.

It's true, nobody will do it as well as you. You know every little nuance, you notice when they lose yet another skill, you know when they're uncomfortable and don't have the language to say so, you're hyper-attuned to their reactions to new things, you even know how to call them back when they get lost--usually. There's no one who can do it like you. And there's also no choice, because there is no help, not from a safety net.

I felt marooned with my mother for 13 years and I wasn't even at home with her. Still, I couldn't forget about her for a day, for an hour. I tried to have a life, but I was not available much even to my husband, much less my friends. And I chose the easier way. It's a tribute to your mother that she raised a son who could do this. If you can avoid being like me and having your health damaged, that would be good. Easier said than done.

I was most alone when my mother died. Everyone thought I should be relieved. I wasn't. I missed her too much. I hope you have more peace than I did when she finally goes. You probably will, since you're spent so much time with her. I admire what you're doing, Cat. Take care of yourself, if you can. You have grace in spades; some medical care would not diminish that one bit. I wish you peace and the happiness of seeing your mother benefit from your care.
Great piece!! Welcome back if just for this post my friend!

P.S. we changed your room here around, hope you like it!! ;)

Rated.
I thank all of you for the kindness of your comments.

You know, one lives a life, and that life is always much more than the sum of its parts. Edges with no calculable planes, particles with no finitely described trajectories. This is how life laughs back at the face of the quantum programming. Unexpected turns when on thinks the expected is all there is.

I'm mostly OK. We've been expecting the creeping blindness for years now (1976, I just managed to held out much longer than they'd thought with my telescope - wanna buy one, haha -- than they predicted).

I can still see to do most things. I just miss the Pleiades. It's enough to know others see those seven blue stars and love them. It's not like I don't know where they ARE. Constants.

Sure, I'd like my arms to work better. But hey, I've still got arms that work. That's a glass more than half full.

She wanted bread pudding today so I made some. Heavy cream and butter and dark brown sugar and honey, I've no reason now to skimp on fats and sugars. And She laughed while she ate it you know what? That's how life works. A good taste on the tongue.

I'm too busy to come here often, but thanks all the same for the kindnessess.

Cat
I am so glad that you are back, but I cannot believe what you are going through. I could not get through it.
I am so glad that you are back, but I cannot believe what you are going through. I could not get through it.
Missed you, mister. Thanks for this. Grace is the word. Yes.
Thank you for checking in, thank you for sharing your journey of grace and pain. Wish there was some way to add some joy to your days. Your writing, as it always has, flows like a glacial stream over polished stones.
Sweetie, you need some help. You're doing a wonderful job, but you need some support.

On another note, you are filled with Grace. And the Pleides (my favorite as well!) are right there, night and day, shining for you.
Good to see you out in the Open again and also, that word actually did filter back to you about the interest and concern for your whereabouts. You've been a busy, busy boy, as only we can be when doing this work. I like to say my days are filled with a lot of nothing, and then I do it over again. My family is also passing through these parenting years now. Your writing is tough and honest, with all the caring in the world shining through. So good to read you again.
Glad to see you again. So sorry for the tribulations regardless of how well they're written. Best to you, Cat.
I kept thinking all through this post -- this is what true heroism is. You are your mother's hero, and I applaud you. And yes, most excellent to see you and posting.
I just now saw this . . . and it's good to "hear your voice." Your writing is still clear as a bell . . . as full of heart and life (life being the messy stuff as well as the bright) as ever I've read. Blessings on the journey upon which you and your mother are embarked . . . Write when you can, and we'll keep the light on for you.
I want to let my son read this. Glad to see you back. You are doing one of the most important jobs there is. You take care of you too, it's very important. You are important.
Hey Cat! Don't come here as much as I used to, and seeing you were back (even if only briefly) was a great treat.

Grace is highly under-rated - may you be full of it!

The Pleiades are usually visible in my side yard - I will make it a point to look for them and think of you.
My mother went crazy years ago. We dropped her down a well.