Saturday, November 15, 2014 

My dearest friend Nancy is suffering so. Her husband Eric has been in the hospital or rehab since the end of July. A few untimely iatrogenic mistakes, now he no longer talks and no longer walks. The hospital is making noises about sending him to a nursing home. The latest prognosis—as they play God—is that he will not recover. Nancy and I saw this coming, but it’s not something you dwell on. You just hope otherwise. Eric is being fed through a peg and he suffers terrible pain, necessitating catheterization every 4 hours. He moans and shouts—noises he can make. Nancy can hardly bear to hear him, but she is at his side as continuously as possible. She feels guilty when she has to go home to check on mail or see to the dogs when her daughter is not around or is working. She knows it’s a matter of time before she has to sell the house or possibly give the dogs up for adoption (temporarily?). As she explained the other evening, she no longer readies her cup of coffee before his 6:30 am call each morning (Eric used to work in NJ during the week). She no longer has her companion by the lanai on weekend evenings. Her lover, her friend, her confidant is gone. Now she is his caretaker and she has to do everything she can—for better or worse—for his well-being.

This puts a whole new wrinkle on my caregiving for mom. Comparatively speaking, mom is no trouble at all. Like any dependant, mom can be demanding. And I did get up twice the night before last to clean the bathroom—once at 2:30 am and once at around 4:45 am. I got no sleep that night because I kept hearing mom slam the bathroom door shut. I have since solved that problem by draping a towel over the top of the door. She can try to slam it, but she won’t be able to. And I will no longer hear it.

Unlike Eric, mom can walk, she can eat, and she can drink. Unlike mom, Eric’s mind still works perfectly well—from what we can gather. And that is a horror. If he were unable to understand his predicament, it might be easier on him. But his level of cognizance makes his condition that much less bearable for those who love him.

Nancy said she would he perfectly happy if she did not wake up in the morning. She barely sleeps, but cries through the night. She has lost more than 20 pounds and her hair is no longer thick. I know someday she will/might recover. But the most difficult thing is that I can say or do nothing to make a difference. I call her daily. I pray for her. I ask others to pray for her. There are times when she outlines the day and I hear so much sadness in her voice that I cannot answer. I cannot respond. I can say nothing. My words would only be empty. I do not know her level of sorrow or fear or anger or angst or anxiety. I know only that she trusts in the Lord and leaves everything in His hands. But even at the best of times during this ordeal, there is no consolation. Her best friend, her husband, till death do they part is now totally dependent on a system that is failing them both. He is merely being kept alive to be barely kept alive by an uncaring and unsympathetic system. He will be allowed 120 days in a nursing home. After that, Nancy will have to decide where to put him, how to see to his needs, and how to continue to be his voice.

By contrast, Mom is watching television. Yep, Family Feud! Survey says!!!!! And I am glad to hear it. Mom will surely once again fiddle with the remote, necessitating Rob’s intervention. She will surely many times more soil the bathroom and her clothing. She will call through the night to tell us that Rose, her now deceased sister, won’t come into bed with her. She will call for tissues, cookies, juice, or “what do you have?” She will still complain about the man in the tree and the cat on the fan. And I will thank God for her and for the chance to serve her. I still lack patience, I am not the saint, and I am sure to become unhappy when she calls for the fourth or fifth time while I am working. But she is here and pretty happy and fairly well. I am looking forward to her 100th birthday. Don’t ask when we get there how I am doing! I still might roll my eyes. There will continue to be challenging days! I am sure of it.

Sunday, November 9, 2014 

Rob was out raking leaves. I was at the farmers’ market. So mom had been alone for a bit. When he came back in, mom was sitting in the living room, and she complained:

There’s someone in the kitchen.

No there isn’t.

I tell you there’s someone in the kitchen. I know. I saw them.

No one is there, Paula.

I saw them. 

Rob said she made an angry face and rolled her eyes at him and waived a hand. After all, he dismissed her vision or her sighting or whatever it had been. So now we have a new rule: If mom says she saw something or someone, then she actually saw something or someone—real or not. We need to honor that and help her through it.

So from now on, the cat in the fan, the man on the tree, the woman in her bedroom, and the person in the kitchen are very real to her and we will acknowledge them as such and help her through it all. We are now entering a new phase in this Twilight Zone of mom’s life. But to tell you the truth, who’s to say that she is not seeing these things. Whose eyes are closed in this scenario? Maybe the closer you get to leaving this earthly plain, the clearer your vision gets.

Thursday, November 6, 2014 

It’s raining. The clocks have been changed for a week now. I thought I could get up early and get some editing done. Guess again.

Mom is seeing men in the trees.

Who are those men?

There are no men in the trees, mom. (No time to placate her. I need to get some work done.)

Well, they’re walking up in the trees.

Think about it, mom. Men can’t walk from treetop to treetop.

Oh. Can they get in here?

No, you have to come inside to open the windows. They’re locked. 

What other story can I give her? What else can I say? There are no men up in the trees. Whatever she sees, I am not privy to. But this goes on and on and on. Her insistence will not end.

Rob!

Mom, what do you want? Rob is still asleep.

Oh. I wanted to know what those men are doing up in the trees.

Mom, I told you. There is no one up in the trees. Now, I have closed the shutters. You cannot see anything or anyone. So why don’t you go back to sleep?

Well, I was afraid they would come in.

Since there aren’t any men up there—you see the tree is moving in the wind and it’s raining out there—you won’t have to worry about them coming in!

Oh. Well, I thought…

No. Go back to sleep. 

I might get a few minutes reprieve. But I can already feel my chest tightening.

November 2, 2014

Worked hard yesterday and awoke after an uncomfortable night. Had to wash the bathroom down twice yesterday and clean mom twice as much as that.

Last night, she started her fugue again. One right after the other: I need to talk to my son. I need to call my son. I need to tell him where I am. Did you call him? Did you leave a telephone number? Did you call 410-555-XXXX? Did you tell him to call us? He needs to know where I am. I am so worried about him. I called John and left a message.

This went on interminably until finally he called back. It was an exhausting night and my patience was thoroughly spent. Mom is wont to say, You don’t like me, do you? But tonight, it was, You don’t like my son, do you? Until finally I said, No, I don’t. She repeated her question and I repeated my answer. It was our fight for the day and it took more out of me (who would remember what I said and what went on) than it took out of her (who would remember none of this).

Today, I felt as though church were the last place on earth I belonged. But I went anyhow. I figure I needed to hear some words of encouragement, and I heard them. Loudly and clearly. After church, Barb and I talked and held hands. This beautiful soul warmed my heart and allowed me to let off steam—as she put it—the way a pressure cooker should.

First Sunday of the month, I was slated for Hearthstone, where I talked about what is left on earth for us to do. I had briefly touched upon things with mom and how I felt I was unworthy to go to church this morning. But I mostly talked about the present, how touching someone—on the hand, on the head or face or shoulder—might be just the encouragement anyone needed and how they could do that for each other. I thanked the Lord for the brace that was given to a woman who had fractured a rib from a fall, for the walkers, for the wheelchairs, for the oxygen, for the food and the hands that make them at Hearthstone, for those who changed the linens and washed the clothing, for those who just touched another warmly to turn the day around—especially on this blustery fall day.

After my sermonette and the closing prayer, I said I would take each person’s hands and give them my love and the Lord’s healing, as I do with the cancer patients at the hospital every other week. And I did. But the healing came right straight back to me. Verna in particular, looked me straight in the eyes and said, I love you and I thank God for you. I hope things get better and easier for you with your mother. Well, that about did it. I was moved to tears, and all the tears saved up inside me for weeks just about flowed out freely. Not only did Verna give me a great blessing, but she also touched upon the one thing that was hurting me deeply—my feelings toward my own mother.

Caregiving is not easy. No one can prepare you for what it will take and no one can help you through it. You are the one who must do the cleaning, the dressing, the cooking, the showering, the bed checks, the running downstairs at night for every bump your hear. You must be alert to needs for food and water, tissues (especially prized by my mother), juices, teas, cakes, and cookies. You must answer each call, each plea: Where do I go? What should I do? Are you hungry? (meaning: I am hungry), Did you eat? (meaning, I am hungry), Do you have any cookies? Are we going out? Are we going to the club? Did you call my son? Did my son call? Where are my clothes? And the dreaded, I have to go in the bathroom. (Mom always says go in instead of go to.) 

And the demands: Close the windows, Get me a tissue, Get me something to drink, Get me a tissue, Get my jacket, Get my robe, Get me a tissue… 

It’s tiring. It’s vexing. It’s exhausting. It’s a lesson and a gift. And if I ever do learn patience, I will have truly earned a wonderful place in heaven. As it is, the Lord will sit me down and lay out for me all the opportunities I missed for pleasing Him and lifting my soul.

Thursday, October 23, 2014 

Rained this morning, but I walked Valentino before I left for market. I clean up his messes with an inverted plastic bag, a sort of glove. We keep a metal bucket for the bags and dispose of them on garbage pickup days. Today was one such day. So I was able to toss the poop bag into the bin. Evidence gone.

I had to run off to market where I helped out at the wine shop before mom awoke, so I wasn’t able to put her in the shower or help her through her ablutions. In a single day, I might go through 10 to 30 latex gloves for this task. But I was spared—at least early in the day.

I returned from market just in time to put up the soup for Rob’s supper. He picked up the organic produce at Rodale, and I prepared the soup from some of the bounty. Today, I made a Swiss chard soup with potato, onion, and garlic in a chicken stock. (Am having some of it now in my cup instead of evening tea. Delicious!) My purple rubber gloves from Williams Sonoma serve me well as I do the dishes.

Immediately after market and after putting on the soup, I drove off to meet my dear friend Carol. We meet at a local restaurant weekly to catch up on the news at market and share news of our families and to share pizza or a hoagie or better—ravioli or baked ziti. It was still drizzling tonight, and I was glad to be home before it rained heavily. Even though I wear latex or rubber gloves so much of the day, my hands felt rough. I was glad to be going home to get some hand lotion.

Rob met me in the kitchen to alert me that mom had had a bowel movement. He had already cleaned the bathroom and was washing the towels that mom had soiled. Mom herself was my responsibility. She was dozing in bed and watching “Family Feud”—none other. So I awoke her and told her that I needed to be sure she was clean. After donning my latex gloves, I tried wiping her clean with Baby Wipes. The wipes were not up to this task. So I put her in the shower and had to do a more thorough job of it with soap and paper towels. (I might have mentioned that I don’t use washcloths any more. They require handwashing in bleach, which quickly does them in, and then machine-washing separately in Lysol concentrate.) After quite a few minutes, all the while hoping that my latex gloves will hold up, mom was finally clean enough. A change of Depends and pajamas and mom was ready for bed again.

I peeled the latex gloves in proper fashion—putting one gloved finger under the cuff of the other and turning them inside out. Then I had to don the rubber gloves to wash the tub. I have learned that after washing mom, Clorox or some other heavy-duty cleaner and disinfectant is required to clean the tub and shower area.

I wash everything—except mom—in the hottest water. Even after I remove the gloves, my hands feel dry and rough. If it were not for my stash of lotions and ointments and creams (especially calendula), I don’t know what I would do. I need to purchase more latex gloves to prepare for what tomorrow will surely bring.

Sunday, October 19, 2014 

I always hated living with my mother. This is the woman who would tear up my math homework because she didn’t think it was neat enough. This is the woman who would ask you to take a dust rag with you when you went downstairs so that you could dust the banister. This is the same woman who never appreciated anything you accomplished—piano, languages, you name it—unless it had something to do with cleaning.

This morning, I lost it completely with hardly any provocation. Mom called several times. Several times, I lied about the time, but she eventually got up anyhow. She was brushing her teeth in the bathroom when I walked in.

Look at this mirror. It’s all dirty.

It isn’t dirty. It’s streaked and I cannot clean it now. The sun is shining on it.

Here, let me clean it. (Mom used her dirty napkin.)

No! Give me that damned thing. It’s dirty.

It is not!

Yes, it is. You cannot clean a mirror in the sun! (I took the mirror off the wall and brought it into the kitchen. End of problem.)

I gave her a shower, using sturdy paper towels and clean dog towels. I am through with putting good towels in bleach to clean them and ruin them in the process. Mom is now sharing the towels I keep for Valentino. I wash them separately and fold them neatly. It’s the best I can do.

But today, mom is on a cleaning kick. I fed her breakfast. Usually, she sits quietly afterward. Today, she decided to wash her dish. Fine. She wiped off the counter with a sponge and dried it. I will rewash the dish later. Declining coffee and toast, she repaired to her bedroom to watch television, where she asked when Rob would make her bed. I told her he was still sleeping and would get to it later, but she insisted upon making the bed now. So she did and I helped her.

Mom is now watching “Family Feud” as she does every single day. I turn the sound off and she doesn’t seem to notice the difference. She mainly watches the screen and the answers as they come up on the board. One of my definitions of hell: a place where you would be subjected to hearing “SURVEY SAYS…” for eternity!

Maybe the lack of sleep from the night before has shortened my patience even more! I may not be making a scad of money at the winery, but at least I am out of the house 3 days a week. Am off to church in a bit. Trust me, I don’t feel I belong there today after how I acted this morning. But I did get the mirror clean, I did shower mom and feed her cereal, I did help her make her bed. I just have to be careful that I don’t react too wildly to the buttons she pushes.

I will leave her to Steve Harvey and “Family Feud” this windy Sunday morning and keep my distance until I cool down.

Saturday, October 18, 2014 

Friday was tough. Second day at the Farmer’s Market wine shop and word of and editing job came in from a client via email. It won’t be in for another week, thank goodness. At the end of the day, I was mighty tired, but had to drive to Pottstown to see EW, my patient’s son, for dinner. We talked about organist Virgil Fox and his amazing virtuosity. We talked about the stock market, in which I am no longer a participant, having lost everything I ever invested. The market is neither for the faint of heart nor those without plenty to spare (and thus, plenty to lose). I was exhausted when I returned home and promptly went to bed.

Two-thirty in the morning: click (a light switch), bang (uh oh). I ran downstairs to see mom leaning against the wall in her bedroom.

She was in here.

Who was in here, mom?

She was here. And I asked her to get into the bed with me.

No one was in here, mom.

You don’t understand. I asked her… And she was in here.

No one was here.

My shoulder hurts.

Let me check your shoulder.

Leave me alone. You don’t understand. She was standing there and she was here.

You’ll be OK, mom. It was just a dream. 

Of course, one can never be sure. Dream, vision, visitation? Who’s to say? I know only one thing for sure: I didn’t fall back to sleep again. Mom did, almost immediately. She fell asleep on her right shoulder, the one she complained about. So I wasn’t too worried. Today, she had no pain and also no recollection of the morning. 

Back to the Farmer’s Market for the third day. Lots of new things to learn at the wine shop: the order of wines from dry to sweet, the 6 s’s (see, swirl, smell, sip, swallow, and savor—I would add swish in there after sip), the computer, filling the bins, serving samples, locating the wines, making recommendations… All this on a few hours of sleep. Deb and Sue made it all bearable, as did the many visits from friends and neighbors.

I missed Valentino and worried about him a little, but a call home to Rob and I was assured all was well. Mom was doing her word search puzzles. A call to Nancy after work brought more disturbing news. Eric is hanging on by a thread in a medical system unwilling to provide more care for him. The social workers want him out of the hospital, but seizures and strokes keep him there longer. I see little hope, but then… Who am I to say? We are both grateful we were never given a glimpse of the future. It would have been far too much to bear.

I am going to take advantage of the moment: Valentino is outside, and I need to finish vacuuming!

Friday, October 17, 2014

Dear Readers, you might recall “the cat on the fan.” For months now, mom has been seeing the cat on the fan. There was no dissuading her. I tried to show her how the bolts and the motor on the fan were just that: bolts and a motor. But she insisted. Everyday, she would remark with wonder how the cat could stay up there so long. That cat is still there! Through cold and heat, snow and rain, day and night, month after month, it was a cat. But hours ago, the cat became a dog. And now, it’s a boy!

Look at that boy on the fan!

Mom, how can a boy live on a fan?

I don’t know. But he’s always up there.

What happened to the cat?

What cat?

You used to see a cat up there!

I never saw a cat up there! It’s a boy. Can’t you see him?

There are some things I am not privy to, mom. Only you can see him. 

Who am I to argue further! Maybe she does see a boy on the fan. He might have chased the cat away!

I decided, however, to pursue the dog part of her vision. Maybe Lucy had come back to visit.

Mom, what color was the dog?

What dog? I never saw any dog?

You told Rob you saw a dog?

No. I never say any dog.

Rob overheard this exchange and concluded that mom—like those in the White House—didn’t even know about Benghazi until she read about it in the newspapers!

Good night little cat, or little dog, or little boy on the fan.

Thursday, October 16, 2014 

Many years ago, when the faithful and brilliant Lorenzo was my companion and spirit guide, our beautiful home in NJ was besieged with cluster flies—in the kitchen no less. Horrid things. I set out to kill them with anything I could find: newspapers, magazines, you name it. I recalled having seen this phenomenon up in a cabin in Hunter Mountain one winter. I called an exterminator, who assured me they would be gone in two weeks. There was no known reason for this “convention,” but it happens. Lorenzo tried to stop me from killing the flies one day. He jumped up, put his paws on my arms, and looked at me pleadingly. I was beaten. Lorenzo and the flies were in collusion. One day, I recall stealthily picking up a newspaper. I was sure to make no noise. Not a sound. I would whack the first fly that moved. I was poised—ready, aim… But the thunder of paws was swiftly followed by a jump at my arm and an imploring look, “Don’t kill the flies!” Lorenzo to the rescue. I put down the newspaper. I was beaten. Who were these flies? Who was Lorenzo for that matter?

Ever since that experience, I am given to second thoughts about killing any insect. This is not to say that I have given up my practice entirely, but I give pause. I reflect. And the instinct is diminishing more and more as time goes by.

Mom, however, is a natural born killer. She and my brother—who never grew out of the practice—kill anything that flies or crawls with nary a thought to their brief life spans or their purpose on earth. Most of the time, Rob will carry a creature outside. Recently, I asked him to remove a rather large spider whose suction cup feet looked like army boots on skinny legs. Unfortunately, the spider did not cooperate and did not survive the ordeal. Rob lost sleep that night. I, still somewhat unrepentant, did not. But I am moving closer and closer to respecting the sanctity of all life. (But don’t try me with a venomous snake or other lethal creatures. I am not quite that evolved.)

Mom, on the other hand, will not rest until you, “Kill it! Kill it! Here, take this newspaper!” And so it goes. Yesterday, there was a stinkbug in my car. I had taken mom to the podiatrist. As it turned out, it was pouring rain when we left. Just as mom got into the car, so did a stinkbug. The cry went up:

Wait a minute! There’s a bug. Kill it! Kill it!

No mom, don’t! It’s a stinkbug. Don’t you dare kill it!

I flicked it out with a tissue. There was no way I was going to allow her to kill a stinkbug in my car and raise up that acrid stench. I have no love for stinkbugs, and I don’t want their scent to draw others to my lovely Greta Carbo, my car of 14 years! My chivalry this time was not driven by love or respect for the bug, but by love and respect for Greta.

Many a time, the cry has gone up: Rob, kill it. There it goes! Here’s a tissue. Get it! Get it! Why mom implores Rob to kill a bug is beyond me. He is far less likely to kill one than I am. But she is relentless. This “instinct” is something that continues to distinguish my mother. There is little of her left since her memory disappeared nearly entirely. But this is one part of her that remains—and regrettably so—as I strive to find a kinder place in this besieged world of ours.

Monday, October 13, 2014

Yesterday and today were true trials. And I must admit, I failed both days. Mom has the runs, but no knowledge of this problem. I am showering her several times a day, and each time, she emerges with no understanding of why she required multiple showers. I clean the bathroom and do laundry endlessly. My water bill will probably be the highest in the neighborhood, the Commonwealth maybe. Between showering mom, washing her clothing and bedding, washing the bathroom and every fixture, door knob, faucet, and piece of woodwork in the house. I am the bane of eco-nuts everywhere, using more water and product than any of their stingy souls would countenance. The house reeks of Lysol (I used the concentrate). I also use a prodigious amount of paper towels, too. I have given up on using washcloths. I now limit myself to the disposable kind, sparing my washing machine and dryer in the process. Immodium, god of many names, do your stuff.

Mom is in the bathroom now. I have lost count as to how many trips she made today. I took all the paper out of the room, including paper towels. (She is not averse to using them in a pinch and stuffing the toilet.) I told her to stay there for 5 minutes. Just 5 minutes. OK, she says. I am using up gloves and Depends faster than it takes the guys in a pit stop change a tire. I go for brief walks just to clear my head and my nostrils and my lungs.

This morning, I led two tours through the farmhouse in Virginville—second oldest working farm in the county. The last member of the family, a distant cousin, lived there until 2005. No plumbing, little heat. By the time he died, Jacob was quite disabled and unable to take care of himself. Evidence of his incontinence was everywhere. Vestiges of it still emerge pungently when you bring in buckets of hot water to clean the furniture. A sad ending to any life, indeed. In mother’s case, it is even more poignant, because cleanliness was important to her. That side of her character died an untimely death.

You might well ask about the role my organic specialties might have played in this purging. Pumpkin soup, however, should have had an ameliorative effect. It did not. This morning, I allowed only toast (flourless Ezekiel bread) and black tea. This afternoon, I gave mom organic macaroni and cheese (Amy’s brand), and then I made my own with roasted butternut squash. I thought the mac and cheese would help a bit. Thus far, it did not.

Yesterday morning, mom was speaking gibberish—clue #1 for dehydration. We gave her juice; mom will not drink water. Initially, I suspected the juice was part of the problem, but it should have worked its way out of her system by now. Sleuth work continues.

As mom makes her evening novena of trips to the bathroom, I am at the ready with gloves, wipes, and Depends, plus the shower, if the wipes are insufficient. Don’t complain, dear reader, that this is too graphic for you. Be assured, I have spared you the full picture of the cleanup detail.