Month: January 2015

Time!

Monday, January 26, 2015

What time is it? It’s 11:17. Is that right. Oh my God, Rob, is that right?

Yes, Paula.

Now, it’s 11:18. 11:18 (she repeats). Look, that cat is still on the fan. What time is it? Oh, it’s 11:10. No, is that right, Rob? What time does it say? I can’t read it.

It’s 11:19, Paula.

Oh.

This goes on pretty much throughout the day while mom is sitting at the kitchen counter eating or slumped over her word search puzzles. It’s mainly the clock, the timer (when I use that function, which throws mom off completely), or the cat in the fan that capture her attention.

This morning, she brushed her teeth, then repaired to the kitchen without using the toilet. I led her back to the bathroom, much to her serious consternation.

I already went, I tell you.

No you didn’t, mom.

Yes, I did, and I cleaned the sink.

You brushed your teeth, but you did not use the toilet.

Yes, I did!

She sat. She “went.” I changed her badly soiled diaper and made her sit for a few minutes.

I can’t stay in here all day.

You can sit for a few minutes. You have nothing else to do.

I can’t stay here all day!

Sit. Relax. I’ll be back.

She becomes angry every time I leave her in the bathroom. But eventually, mom is able to do what she must, perhaps out of desperation, perhaps figuring that I will lead her from this terrible prison if she does what I ask.

I try to give her a measure of privacy, and keeping the door closed is of the utmost importance to her. But time, is the biggest issue. Her cries of I can’t sit here all day amuse me somewhat. What else does she have to do?

Later at the kitchen counter—

It’s 11:30 already? It’s 11:30! What time did you get up, Rob?

9 o’clock.

What time?

Oh, and it’s 11:30 or is that 11:31. It’s 11.31.

And so the day progresses and time marches on as steadily as ever. It is perhaps a welcome constant in her life and something she still understands. Something she can still grasp. Time goes forward—except when I use the clock as a timer, which mom finds very disconcerting, but she still reads it as time. It’s 2:10. Oh it’s 2:08. Now, it’s, it’s 2:00. Yes, it’s 1:58.

When a visitor asks how old she is, mom usually doesn’t know. When I remind her, she replies, Oh my God, 98! Too old! Time is perhaps not such an enemy at her age, just a fascination.

Perspective

Sunday, January 25, 2015

This morning, the telltale smells from the bathroom alerted me that mom had just visited. She was now in bed. So I went to check her out and found the usual: soiled nightgown, dirty hands, and soiled diaper. To her protestations and tears, I led her to the bathroom shower. You would think I was condemning her to stand in the freezing snow.

I emptied the shower of everything: shampoos, soaps, squeegee, sponges—anything that could become contaminated by the spray of feces. I then tore up individual pieces of paper towel to be used as washcloths. I moved the wastebasket closer to prevent dripping the contaminated cloths onto the bathmat. Lacking a laundry chute, I threw her soiled nightgown and towel down the stairs. After I got mom (who kept asking if I would go back home with her when she gets up) back to bed, I donned the heavy-duty rubber gloves and washed her feces-soiled clothing in the basement sink, dropped them into the laundry tub with Lysol concentrate and detergent, then returned to the bathroom to spray the shower with bleach and finish cleaning the bathroom. But…

This is nothing compared with what my dear friend Nancy must endure. Eric has been home since New Year’s Eve. Unable to speak, he can only point (and sometimes randomly, such as to the television or the pillow) and grunt or scream that he needs his diaper changed. Nancy is exhausted. She often changes him (a 20-minute ordeal) only to find that he has immediately soiled himself again. Yesterday, he soaked the bed. While she changed everything under and around him, bending over him with her back (painful from several destroyed discs), he urinated copiously again. She cried and he cried.

Last night, Nancy described her mornings: wake up, let Hunter and Abby out, give Abby her eye meds (Abby has glaucoma and is blind), clean up if Abby had a bad night, prepare Eric’s meds in yogurt, change his diaper, give him his meds, feed him, clean his peg. After 3 hours—yes, 3 hours—she can sometimes sit down with a cup of coffee. She often does so with Bible in hand, the Psalms serving as her source of comfort through this ordeal.

She said that her life, as she knew it, is over. I agreed. But I told her that her life itself is not over. She has two wonderful daughters and 4 beautiful grandchildren—much to live for. Nancy claims Eric will outlive her, and I think she is almost hoping he will. She does not want to lose him to death, even if she knows she has lost him to the continued strokes. But in the meantime, she manages. She pays the bills (some very huge bills to which must be added the latest trip to the ER for $800), takes care of the dogs, cooks for and feeds Eric and give him his meds, has arranged for a woman to come in 3 mornings a week to change him, has arranged for gardeners to clear the weeds and do weekly maintenance around their acre, does shopping when someone can come in and be with Eric, manages the household and laundry, and calls repairmen as needed, then pays more bills. She worries about what will happen when disability runs out in 2 years. I remind her that matter is too far off to be a concern at the moment. Still, she tries to take what’s put before her moment by moment. She said that even though we ask for “our daily bread,” we are really meant to live moment by moment. We both ask for strength and grace as we carry out our work—she on Eric, me on mom—because we sometimes fall miserably short.

Eric’s doctor has been terribly worried about Nancy and asked her to be his patient. I keep praying for her strength and that she will know the presence of the Lord as she toils—and she does. Three of us—and I suspect many, many more—pray for her throughout the day. She herself has been praying for respite. And today, Eric is back in the hospital, a possible TIA. She did get some respite—at a price she would never have asked—but she did get some respite.

While I have the luxury of sitting here and typing these words, Nancy would be working for several more hours even before she could get some nourishment herself. As difficult as things are here, as tedious as my routine has become, it nowhere resembles the horror she must face nearly every minute as she toils nearly endlessly with a bad back. Last night as she prepared to leave the hospital with her daughter, Eric screamed and made quite a fuss, even at his daughter. He didn’t want to be left behind. Nancy explained that he had hurt his daughter’s feelings, that he was not being left behind, that he would be home soon, that this was not like previous lengthy hospital stays, and that she needed a good night’s sleep and was not going to sit on the hard-backed chair all night. Eric stopped screaming and Nancy left to get a good night’s sleep.

When I lay my own head down on my wonderful pillow with my wonderful down comforter with my wonderful window shade—newly installed to keep the moonlight from drenching my head and body at night and now also providing a measure of insulation—I am grateful. I am grateful to be able to take care of mom and to have Val as my companion. I am grateful for Rob, who spent the day shoveling snow—particularly the heavy bank left by the plows, prepares mom’s coffee and toast every morning and provides cookies and juice for her throughout the day, does endless loads of laundry when I am not at the washing machine, folds the clothes so neatly, makes mom’s bed, alerts me to problems concerning mom, takes out the garbage, trims the lawn in the growing season… much to be grateful for. And I am grateful for Nancy and the opportunity to pray for her and Eric and the girls and to see once again the power of prayer.

Family

Thursday, January 22, 2015

Mom is singing. Words undecipherable. Most humming. So I hope she is content. I wonder if she sang when she was a child? I knew she loved singing as an adult. The Blues mostly. She often spoke about how someone heard her singing from the window of her mother’s apartment and told her that she should be on the radio. If times had been different and if ambition had been attached to her ability, perhaps she would have become a singer. Who knows? Godmother Mary (she was always called Godmother Mary) was indeed my Godmother. She had quite a beautiful soprano voice. Someone tried to get her to take voice lessons. There was talk she could have become an opera singer. I remember her lyrical, lilting voice. It was like listening to bells. I could imagine her singing the bell song from Delibe’s Lakmé. Godmother Mary and mom and I used to go to the shore and record our voices in one of those singing booths. We’d get a scratchy vinyl record and laugh and laugh when we would hear ourselves. My voice was always scratchy though. So it hardly mattered. I once sang a song that began “Once a froggy in the pond was feeling awful blue…” Something I had learned in school. I remember thinking I had sounded like a frog. I wish I had those vinyl recordings.

I spoke to mom only yesterday about Godmother Mary. Mom asked if she were still alive. I sadly admitted that she was not. Mom seems to have grown used to everyone dying around her. She once commented that she was the last one in her family, a family of ten. But I was able to say, No. You still have your brother. Our once gloriously huge family—there were 10 on dad’s side, too, but two had died at birth. Same ratio of girls to boys. In all, I had 41 first cousins. I remember watching My Big Fat Greek Wedding when Thula remarked, I have 23 first cousins alone! Beat you by 18, Thula! I mentioned this to an acquaintance once, who asked, Are you close to all of them? An odd question. Of course! Of course I am close to all of them. And now that we are aging, those of us left are staying in touch with the next generation, who want to hear all about mom and dad and Uncle Junior in their heyday. Big Italian families are a blessing. I am glad to be part of one.

So, What Else Can Go Wrong?

Tuesday, January 20, 2015

Whatever it is, I still have it. Feeling wiped out at this point. Went to the chiropractor last night to see about the pain in my left arm. So far, pretty good. Dr. B. regaled me, as he usually does, with stories—this time, about his mother. He and his five siblings will be pitching in and rotating care for their mother. She sounds like a pistol. One sister suggested putting notes everyplace to help her navigate. The woman apparently rips off the notes and then loses them. So one sibling used packing tape to keep it on the counter. Unfortunately, she found her mother trying to remove the note and the tape from her beautiful quartz countertop with a pizza cutter. The mother, whose memory is intact, has become quite mean and often (willingly or thoughtlessly?) packs whatever she can in her suitcase. So the family must distract her and go through her belongings before she is shipped out again and search for remote controls, cutlery, curling irons, coins… anything moveable and within reach. I wonder if she is protesting in part being shipped out hither and yon. Heck of a way to live. However, the family is trying to do their part for a very difficult woman, who seems to be getting progressively more difficult as time goes by. Unfortunately, like mom, she is not eligible for assisted living. But this woman is also not available for the dementia ward, since she—unlike mom—still has an intact memory.

Rob and I are spared this brand of horror, but we are surely living in our own horror show of shows.

Went out briefly this afternoon for a haircut. (Val was groomed on Monday. I “was groomed” today. We work things out together!) Anyhow, I returned just in time for the nightly cleanup. Rob had already cleaned the bathroom twice (or was it three times). By the time I accompanied mom to the bathroom, it was time to give her a shower. She protested, as usual, but it never works. She is clean. The bathroom is as clean as it will get. But even with the exhaust fan, the aromatherapy, the Lysol, the bleach, it’s all about living with the smells. I showered mom, changed her “underpants,” and am doing the laundry. Our water bill must rival that of the local laundromat. I also trimmed her nails and am soaking the nail clipper and cuticle device in hydrogen peroxide.

I think I will now go upstairs and veg out with the TV. Readers know that I rarely watch TV, but I think I’ll watch something relaxing, such as “Untold Stories of the ER”!

Oops, relaxation postponed. Mom’s in for the fourth time, but who’s counting.

Alarms Through the Night

Sunday, January 18, 2015

Nothing went seriously wrong last night, but mom did call and wake Rob several times, asking to go to the bathroom. Consequently, Rob got little sleep. I, in my viral stupor, slept through it all. Apparently, mom called Nurse! Nurse! And Rob answered the call. God bless him! I would not have been as charitable at 1:30 and 3:30 in the morning.

Last night, the Reading Symphony featured Mozart, including David Schifrin performing the Clarinet Concerto. I was determined to attend, even though I was not feeling well. The house was packed. I had hoped—in vain—that it was because of the Mozart program, but as the youth string orchestra was on the program, I suspected loads of parents and other relatives attended. I suspected this, too, because of all the clapping and shouting of Bravo! and Great! between movements. When the youth orchestra began its rendition of Tchaikovsky’s theme from Romeo & Juliet, I turned to Rob and said, A little too ambitious for them, would you say? But it was too late. Rob had covered his mouth in laughter. He turned to me and said, I keep thinking of Harold Hill. (For readers unfamiliar with the musical, “The Music Man,” check it out. The young performers were clearly not thinking clearly last night! Think, boys. Think!)

Valentino was also a challenge through the night. Last night while we were at the concert, Mia, our friend and caregiver, let him out, but could not get him back inside. So at intermission, I called Betty and had her come down to lure him back in. She was successful and told Mia how to manage it. But in the middle of the night, Val pulled the same thing with Rob. Both mom and Val were disoriented after our brief absence. This does not bode well. Val has still not recovered from the loss of Lucia. For that matter, neither have I. As for mom, she is disoriented with life and has no recollection of being with Mia and her daughter Kris or having called Rob last night. I wish her room were somehow soundproof and the rest of us could sleep through the night. Val finally came upstairs to sleep in my room. I think the events of the evening and the night had finally exhausted him, too.

A Dilemma

Wednesday, January 14, 2105

A dilemma. I have the opportunity to write an article for a peer-reviewed journal on a topic I really like. There are several problems: I don’t get enough sleep anymore. I am constantly interrupted. And I have a weekly newsletter that demands my attention. The journal article would bring in significantly more money than anything else I am currently working on, but with tending to mom, cleaning the house almost constantly, going to market 3 days a week, going to Pottstown once a week, I am not sure I can handle it. I used to reserve a huge block of time for each project. I was younger then and didn’t have constant interruptions. I am almost unable to work in the evening at all now. That’s mom’s time for the bathroom—3, 4, 5 trips in a row.

You were just in here, mom. You need to finish your business.

No I wasn’t.

Yes you were. Now sit there and go.

Sometimes she obliges. Every morning, for example, I lead her to the bathroom and we have the same exchange.

You need to go to the bathroom.

I don’t need to go. I just went.

No you didn’t. You just got up.

I did. I tell you, I did.

No you didn’t. Now sit.

Every morning. Every single morning we share this exchange. And every single morning, mom does her business. Truthfully, it’s easier dealing with Valentino. He’s always eager to go for a walk at any time of the night or day.

I just called a nearby home to see if mom can go for respite care for a week or more. The home advertises involving those under their care in social activities so they don’t feel lonely. Mom surely feels lonely here. I usually deny her requests to sit and watch TV. I often either don’t have the time, and if I do, I rarely have the inclination. I am not a fan of game shows or game show hosts. I can hardly sit and talk with her. We have nothing to say and there is certainly nothing she would remember. Mom would repeat the same questions over and over and over—something for which I have long lost patience. I do try from time to time to talk with her, but as I noted before, you either see the cat or the man or the people waving or you don’t. Tonight there was someone at the kitchen window. There is always someone at a window somewhere. Windows are a problem. They pose threats. They serve as leaks to the outside—anyone can get in. They are no longer prized for light or air (both of which mom spent an entire lifetime trying to eliminate). For her, windows were always meant to be closed, draped, shuttered, locked–anything but opened. In summer, I open the windows behind the closed shutters, just to allow some exchange of air. It often works, but sometimes mom will complain that it’s cold—even on the hottest day.

Well, maybe my life’s work has changed. I should no longer be writing medical articles. My life is now about taking care of my mother. It’s surely not as lucrative as writing, but if I can find the patience and get some time off, it might someday be rewarding.

The Idiocy of Life

Edited version

thecaregiversdiary

Thursday, January 8, 2015

Three adults, one unworkable bathroom. Both toilet and sink are clogged. Some weird substance (maybe the plastic beads from the lining of a diaper?) keep bubbling up to the top. I have no idea what it is, but I do have a call in to the plumber. I tried the plunger to no avail. This is worse than a usual clog. It will be interesting to learn what happened and what rogue piece of whatever is doing the damage.

Fortunately, Valentino has the great outdoors as his toilet. Unfortunately, it’s currently 9 degrees outside (warming right up there). Heaven knows what the wind chill is. But he is learning to do his business in a hurry.

Later—

Mom is awake now and wearing a new pair of Depends. She explained how she washed her dirty diaper in the bathroom sink, where the absorption beads clogged up…

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Sanitizing

Sunday, January 10, 2015

Your first trip to the bathroom in the morning requires work. Before you relieve yourself, there is a checklist you must first follow. Pull several Lysol wipes from the container and get to work cleaning the:

toilet seat
toilet handle
floor around the toilet
stainless toilet paper cover, which I bought to eliminate soiling the TP, but which ended up being something else to clean
sink and lavatory
faucet
soap dispenser
ledge of the tub, where mom holds onto when she rises from the toilet
towel rack
light switch plate
walls and woodwork on mom’s path to and from the bathroom

Later, I wash the handle of mom’s cane, check her nightgown, and replace her face towel. If there is hair in the sink, I clean it out and sanitize the cabinet and cabinet knob where her brush is stored. We keep our toilet paper in the cabinet beneath the sink and in a plastic bag so that mom won’t identify it too easily. One night mom apparently used up all of her TP and searched for something to use. She tore (literally) into my cotton face pads and contaminated the lot. She since learned that we store our TP under the sink and has torn into it from time to time. So now, we keep it wrapped in a plastic bag, hoping to thwart her using it.

Nothing is easy any more. But mom remains cheerful. She can afford to be: she’s the princess and all of her demands are catered to. Alas, she has no friends, no one to talk to–except Rob and me. And we are often too busy working, cleaning, shopping, taking care of Valentino to spend much time with her. Besides, a normal conversation is not possible. “The woman” told her to get up this morning. “The man in the tree” waved to her all night. “The people on the TV” wave to her and know her. “The cat” watches her eat breakfast. Entering this world is not advisable. You cannot add characters. You cannot describe them. They are hers and hers alone. And so, she remains alone.

They Know Me!

Saturday, January 10, 2015

Rob, Sandy, come here!

What mom?

I want you to see this. They wave at me all the time and I wave back. They know me!

Who knows you mom?

They do. Mom points to the television. Apparently at the end of the news, the newsreaders wave to their listeners. Mom thinks they can see her and are waving directly at her. Sigh!

The Idiocy of Life

Thursday, January 8, 2015

Later—

Mom is awake now and wearing a new pair of Depends. She explained how she washed her dirty diaper in the bathroom sink, where the absorption beads clogged up the sink. She flung the remaining beads into the toilet and the tub and hung up what remained of the soiled diaper on the shower rack. Rob and I tried to explain how the diaper should be disposed of. It was a trial and ended up being a battle. The woman doesn’t listen, never listened. Some things never change. Rob finally brought up the Depends box and had her read where it said to dispose of the Depends in a waste can. Undaunted and determined, she explained how she cleaned everything so carefully. Actually, she left sanitizing the shower, the bathroom floor, the sink, the toilet to me. Mom is now explaining to Rob once again how she cleaned everything and did a good job.

We shall leave unclogging the sink to the plumber! I am not feeling charitable at this moment. Not one bit.

Later—

I asked mom tonight what she would do if she soiled her diaper. She said she always washes them. So I put a sign above the washbasin in the bathroom. It’s a bit like living in a restaurant, where employees are urged to wash their hands before serving.

DO NOT WASH DIAPERS
THROW THEM AWAY!

Anna, my Amish friend from market, laughed when I told her the story. She apologized and said she didn’t mean to make light of my situation, but sometimes you just have to laugh at the idiocy of life. Well spoken, Anna. Well spoken. Someday I surely will laugh.