Revelations

Sunday, sept 19, 2010

6:55 AM -- Bought H&B their meds, sitting up in bed watching tv talking heads (not the musical ones), and eating breakfast pastries. Dad nodded that I should return to dress him.

8:00 AM -- Tiptoed in to find him sitting on bed's edge, trying to put on slippers. Mom sound asleep. Coaxed him to the bathroom where I changed his Depends and got him dressed. Suggested an Ensure/ice cream milkshake, and got a smile.

Sat watching his finally-assembled 90th birthday Marble Maze, as he sipped the concoction, eyes on gears and ramps and marbles.

Closed their bedroom door to keep from waking Bitchy. (She has little patience for this new toy -- which dad thoroughly enjoys -- as it disturbs her watching the Fox news network, and all those other talking heads.)

This time I put the remaining milkshake in the fridge for her, and went to my room for awhile.

9:30 AM -- Passed through L.R. toward my next chore, as mom was seated (still in her nightgown) in her chair. I asked if she was up now, if I could make their bed yet. She was kindof groggy and asked if something happened. She wasn't clear if she had a dream or if it was real...

"What, mom, if what was real?" I asked.

"Are we mad at each other? Did we have a fight?" she puzzled, appearing more weak and tired than normal. "I'm feeling really strange."

"You're looking kindof spacey. But, yeah, we had a fight, yesterday. A big one," I answered.

"What happened, what was it about? I don't remember." Her brow creased in anticipation.

"You don't remember? You don't remember being livid that Gee came over at 4:00 to help me (help you)?

Or telling her that you did not want her to cross into the living room even one step? That you did not want a helper and did not even want to chat with her?"

"Well, I don't want to chat with anyone during that time! That's my happy hour and I want that to myself. Me and Hunk. And I don't need any help at all around the house."

"Or coming to the porch where we were working to say I should go back to CA if this is my attitude -- having help come every day from 4-7, when you don't want it, even though I need it and would be paying the cost? And basically telling Gee that she better not come back tomorrow or any other day, for that matter?"

"Well, I apologize if that's what I said. We're back on track then?"

"Not exactly. I apologize, too, but there are some strategic issues that have to be dealt with. Changes that must be made."

"Yes, I see that. When did she leave?"

"I don't know exactly. I had to go next door to take care of those cats and when I left she was in the kitchen talking with you over the counter while you and dad were eating. We had finished polishing half the windows on the porch, so she was going to come back and help me finish today sometime. And if you would be willing, to help dad with his night-time ablutions."

So then we rattled back and forth a bit about having help come here at any time, reaching a tentative agreement. Maybe Gee could work from 6-7 for a while, and then maybe from 5:30 to 7, and going on back, as it became comfortable for mom. I was certainly willing to flex about the times to start. But I clearly defined my feelings that I should not be handling dad's more personal hygiene issues.

I also clearly drew the picture of what I see every day, when "happy hour" begins, of mom losing energy, losing focus, losing her appetite, losing patience, losing the ability to fully care for all of dad's needs at that time. Pointing to the recent incident when she failed to notice leaving him in a wet Depends, after dealing with his fungus treatment, just before bed. Her defense: "I just don't think it's that necessary to change it every time it's wet. We have different standards of cleanliness in that way, I suppose."

"Yeah, no kidding, and now he has a fungal infection!"

"Or so the doctor says. I'm not sure I agree with him."

"Oh well, that's just beyond comprehension. But you know, that's another reason I want Gee or someone else to care for dad's needs then! I would feel like I'm failing my father if he isn't at least kept that clean."

"Listen, Daughter, that's between him and me, and not your concern. And not any outside caregiver's concern either! If I say it's my way then it is done my way."

We glared at each other a minute here... (In the back of my mind is the truth that I hold their medical power of attorney but I doubt it extends this far, and even so, she can revoke it at any time, and even so, how on earth would I invoke it... a useless bit of power in my opinion, or, in this case.)

So I changed tack. "Well even with the outside care issue settled somewhat, there is another matter which must be addressed. You know, if you actually follow through sometime and dismiss my help entirely, sending me packing, you will probably want to fill that room with another live-in caregiver. You know, rather than go to Langdon Place."

"Of course. That's why we had that room built in the first place."

"Well, I've been doing some research on that score and have found that virtually every such position includes some free time."

"What do you mean, free time? I pay you $12,000 a year to do the little you do."

I chuckle. "You realize that what you pay me would actually cover only those three hours a day, five days a week, that I am willing to pay Gee for her help? She earns $15 an hour, and I am living here with you 24 hours a day. I am available, on-call virtually ALL THE TIME. Granted, for most of those hours my involvement is minimal. But when it's needed, I am already here, available to help you."

Your needs are always on my mind. I'm sympathetic, absolutely. I see the strain you've been under, watching dad decline. And now with this diagnosis of your own dementia, I see the anguish and the fear and my heart goes out to you. And I am here to help you -- both of you! But I am not a bottomless well. I need some time to myself.

The money you give me each month -- what you called my very generous "salary" -- is not really that much for all the time I am available to you. And anyway, I need to make a living with my craft. To do that effectively, I need about three hours of uninterrupted time each day, and the three I want are from 4 to 7.

You argued the other day that I should just go downstairs earlier, or whatever, but let me explain my life here, if you will.

Most days I get up now before 7 and bring your meds--dad's crushed in pudding, and if he's ready I get him dressed. I've just recently asked you to deal with his Depends now, and treatment for his fungus, but today, for example, you were back to sleep, so I changed him, expecting you to "finish up" later. Then I fetch the newspaper and top off the bird feeder. Today I made dad the Ensure/milkshake. Sometimes I scramble him an egg, and then clean up after myself (and you) in the kitchen. Then I go get some breakfast for myself.

I check my email, write responses. If a sale came in off my website or eBay, I process the shipment, or make a note to create an item that's needed. I may prepare a craft fair application, or make a repair. There might be photos needed for an eBay listing or for my website. There's always cleaning to do in my room.

Once you guys are up I make your bed and if the laundry basket is full I start the load. I clean up his bathroom, wrapping and replacing the trash bag, wiping down the counter and sink. Pick up lots and lots of tissues. I wash the sheets if dad had an overflow, or about once a week anyway. When laundry is done I put the things away that I know.

Throughout the day there can be tons of big and little interruptions. Empty the dishwasher, vaccuum, mow the lawn, find dad's cane, visit the doctor, do some dusting, straighten up messes, pick up cups and dishes, put away the kitchen scissors, gather garbage and recycles, repair a broken cabinet, fetch the mail, run to the bank, research tv sound boosters, find and buy phone system, sort and dispense medicine, arrange replacement garbage disposal, washer and dryer, pay household bills, make the computer work, make the tv remote work, find a new remote tv system, buy more flashlights, wash the floors, dust the knicknacks, find dad's hat, clean porch windows, visit the dentist, grocery shopping, clean up after lunch, clean up after supper, buy new humidifier, buy liquor, repair the bird feeder, deadhead flowers, repaint flowerpots, etcetera, etcetera, etcetera.

Granted I'm not engaged every minute, and when you ask my help it's usually in spurts...

...

[Fast forward to now, in 2015, as I review these entries from an historical viewpoint. I must have been interrupted from my writing, as this entry was incomplete, and never "published." But I recall that period, maybe even that day. It was then I decided that something had to give. And I made a plan to leave them on their own for about a week, before the end of the month.

I would take a "vacation" and drive around the state, enjoying the scenery and visiting craft galleries that might carry my work, all the while hoping Bitchy would discover that my help is really indispensable. Or at least that SOMEBODY's help is, and she would loosen up her reigns when I return...]