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


Salon.com
Comments
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
All the best to you sir
and welcome back.
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 took care of my demented husband for three years, so I know. But then we had the nursing home. I did miss you. Glad to read you again. Take care of yourself, too.
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.
Now, if I may interest you in some cheap Ugg boots and excellent bargains on name brand jeans and bicycle tires...
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
I've missed you.
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.
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
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.
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...
-Pawed-
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.
RATED
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,
Kittehs don't often get tears in their eyes.
It is Grace, and we wish you all the Grace you deserve.
~fatRocco and stillferalRusty
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.
P.S. we changed your room here around, hope you like it!! ;)
Rated.
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
On another note, you are filled with Grace. And the Pleides (my favorite as well!) are right there, night and day, shining for you.
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.