Tough Love

Some time in Sept, 2010


... Gee was here on Tues night to care for Hunk and Bitchy while I went to Stitch & Bitch from 6-9. I got mom to agree to it on Sunday during her "interview" and when she showed up, mom did not remember saying yes to the idea. But I cajoled her back into it, and explained to dad what was going on and he was game. (She even suggested giving dad a shower after supper!!! I thought, whoa! but she knew elder-care, so I breathed out and thought, fine!) She came in with me to the bathroom where I explained all my routines for putting dad to bed, and also gave her the lowdown on mom's outburst with me that morning.

Which was... I got the call to get dad dressed (which mom adamantly refuses to do for him so early) about 6:25 in the morning and I did that. (When I passed through their room, she was sitting up in bed, lights ablaze with the tv news blaring.) Afterward he asked me for one of those Ensure/ice cream milkshakes I usually make for them both around 10AM. I made a batch, but only gave it to him (in his living room chair) and put the rest in the fridge. (I think mom already had her hot tea and sweet cake, but anyway, I was still groggy and told dad to enjoy the drink, that I was headed back to bed for a bit, and I'd go get the newspaper for mom after it was delivered.)

I was only back in bed for a minute when mom slammed open my door yelling that I was so rude not to bring that drink to her also!! That I'm always rude to her and she's sick of it. That I can just get the hell out if I continue to coddle dad and ignore her. As you might guess, I responded in kind, pointing out that if she's awake enough to be watching the news sitting up in a brightly lit room, maybe she's awake enough to help her husband dress. And that if she wanted some of that drink so early in the morning she could have called out for it when I was still in the kitchen. Or if she wants it now, she can help herself to it from the fridge, etc.

She stormed out shouting and I hunkered back in bed, but realized there was no peace left, so I got up and went in the kitchen where she was blowing off at dad, who I'm sure was trying to understand the outburst. I said I'd be happy to pour her the drink and she said (in her most acid tone) that she had no interest in it anymore. Then she started on another tack that went toward her opinion of how much she helps dad and how much he loves her and how I shouldn't be showing so much favoritism to him.

She grabbed his face and demanded to know how much he loved her. "All there is!" was his meek and rather desperate response.

"There!" she crowed. "You know what your problem is? You're jealous of what I have!"

I started to protest but she was in her stride and cautioned me not to say another word. So of course, I went back to my room. And started thinking about how I could manage to get out of this contract...

****************

Wednesday I tiptoed around and hoped that her vodka-stewed memory would have erased that episode and that we could just move on. It worked somewhat, and of course, when their friends the Masons arrived for a very unusual late-afternoon visit for cocktails and to join us for supper at the Weathervane seafood restaurant, she was back to enjoying the limelight. Even made jokes about how she was "losing it" now that she had been diagnosed with "that word" (dementia) or as I enjoy calling it "V.D." (vascular dementia).

And it wasn't a bad day, except Gee called with some bad news. She had discovered during dad's shower a very dark red spot on the end of his penis, and recommended at trip to the doctor.

Earlier in the morning I had been wondering what my real feelings were, surrounding that blowup on Tuesday. It occurred to me that the issue centered on my dealing with dad's nakedness. Originally when mom wanted someone to help him shower, she stated clearly she wanted to hire a male nurse/helper. When I said I could certainly help, she insisted no, "You shouldn't have to do that." Which meant (to me) that she didn't want his daughter handling his private parts.

Then later, when it came down to being too expensive to hire someone (e.g., Home Instead charged only ~$14/hour, but they required a 3-hour minimum), I got pro-active and purchased a shower seat and installed the hand held sprayer, and she devised a means of privacy whereby he would wear jockey shorts to shower with my help, and then to finish his private areas, she would come in.

This worked ok for a while, but I became a little concerned listening to her "help" him, thinking she wasn't being thorough or careful enough with slippery/safety issues. So I butted back in a little and she got exasperated with me, huffing, "Oh for God's sakes, you've seen a man's penis before!!"

A very true statement, and as an individual striving for enlightenment, I should be able to rise above my inhibitions and just help the man clean his body! After all, he NEEDS the help, and it's not like HE is exhibiting any discomfort with this... But for some reason I'm feeling that -- as long as mom is alive and "well" -- this should remain HER responsibility! God knows she doesn't hesitate to proclaim dominion over everything else to do with dad... why should she pass on this very intimate task?

As for his current "condition," who knows how long he's had this infection. I haven't noticed any behavior hinting at pain, and he never complains, so maybe it's new? (At the ER on Aug 17, his urine sample came back clean...but, don't know what they looked for...)

In any event, Bitchy said earlier today that she doesn't think he EVER cleaned "that area" (I assume she means under the foreskin), and says that he does not remember! She thinks it just shouldn't matter. "What difference does it make, and anyway, he's not in any pain."

I managed to get an appointment for him today. The doc took a look (we were all in the room, since mom was worried she wouldn't remember what was said) and he said it was a fungus. (They like dark, wet, warm places.) He advised using an over-the-counter ointment twice a day, when his penis should be washed, dried, and have the medicine applied. He was addressing both mom and me. But she said outright that SHE would take care of it.

When we were home after her first hour of drinking, she thought aloud that she should attend to dad even before supper. I thought great, 'cause by 7 she will be pretty much out of it. So she did, and showed very limited patience and was nearly exhausted without having exerted much effort.

Later at dinner, I prepared something and decided to join them at the table. (I don't always, because I'm often working in the basement until 6 and by the time I get upstairs, cleaned off, and make something for myself to eat, they are finished and dad is ready to brush his teeth and change for bed.)

It was a mistake, because she invariably labors around in the kitchen like a woman who's been drinking, puts too much food on their plates, and proceeds to watch him eat, correcting almost every move he makes, all the while continuing to drink her drink, adding wine to the glass, stare out the window, stare at her plate, ask all the usual questions (have you heard from your children, your friend, etc., and what a shame ____ doesn't have a job yet, etc...), and these days, wonder aloud what it is she's forgetting.

Tonight I had a miserable time trying to overlook her behavior, and I started to chuckle. "What's so funny? You think it's funny that I'm losing my mind?" I'm afraid I said something like, "Yeah, kind of ... at least when you choose to do things that make it worse." At which point she had a hard time handling that. I quickly got up to clear the plates and get their evening meds together, heating tea and getting ice cream for them at her request.

And then she reiterated that if I don't change my attitude, she will resort to sending me away and hiring someone to come in and "do my job." I just said she should do what she wants and that I am doing my best (under the circumstances). I started cleaning the kitchen while they finished eating and she coldly directed me to drop what I was doing and help dad get ready for bed. I kept my tone light and pleasant without being solicitous. I am unable to play that game, even though I know it would be in my best interest to live the lie.

I am truly coming to the end of my rope, I think... In fact, I'm formulating an intent to make a break of some kind... If not an actual move out of the house, keeping access to the woodshop, then I will see about hiring someone to come in EVERY day from 4-7 so I won't be interacting with her when she's drinking at all. That person can help her cook -- which she is doing badly these days -- and can clean off dad's penis, etc., and get them both to bed. Maybe I'll take a class somewhere to give it an imperative... I don't know. Something's gotta give, and try as I want to, it doesn't appear to be within my realm of possibility...

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...]