Wednesday, December 10, 2014

I have repaired to my office to drink a fine port and eat some walnuts. I [you] deserve a break today, as the saying goes, but a McDonald’s hamburger would never do. Here’s the story: Mom and I went to the chiropractor—hardly a bonding experience. So after I had run several errands, I took mom to lunch. We ate at “Say Cheese,” a wonderful little place in West Reading. And here was our delightful conversation:

I like this place. It’s very nice.

You were here several times before with John and Marcy and me.

Oh, yes, I remember now. [Don’t bet on it]

Is this Pennsylvania?

Yes.

Where did I live before?

You tell me.

Newark?

Nope. You never lived in Newark.

Oh tell me where I lived.

Well, you lived someplace all your life.

Oh yeah. Does Rob work?

No

Oh, I thought he worked.

No

What does he do all day?

He waits on you and rakes leaves and runs errands.

Oh

Where do I live now?

In Reading. Do you know whose house you live in?

Let me see. Sandy’s house?

I am Sandy. Do you live in my house?

[Shrugs her shoulders]

We eat, then talk some more.

Are we in Pennsylvania?

Yes

Do you like it here?
Yes

How long have you lived here?
Nine years

Nine years? That’s a long time. Where’s Rob?

At home

Does Rob work?
No. He takes care of you.

Oh

Do you like it here?
No

Oooooh!

Of course I like it here. I keep telling you that.

I know. What’s this for [pointing to catsup on the table]

That’s catsup for your hamburger.

I’ve never had that before.

Yes you have.

Well, maybe a long time ago. Is this Pottstown?

No

I like Pottstown. Do you?
No

No? Oooooh!

You have never seen Pottstown.

Oh yes I have.

No you haven’t. You have only been to Cheryl’s house.

Does she live in Pottstown?

Yes

Oh. I like Pottstown. It’s very clean.

Do you remember her house?

I am sure I would if I saw it. 

Where’s my furniture?
It’s in storage.

What about the piano?

It’s also in storage.

Oh. That’s terrible. Does Rob work? 

This went on an on through her one-third of a cheeseburger and two cups of chai. She asked me several times about how long I have lived in Pennsylvania, whether I like it here, whether this is Pennsylvania, whether Rob works, and where her furniture is. 

If any of the above sounds as though it made sense or followed a stream of thought, then I have recorded this inaccurately. Mom’s thoughts just wandered all over the place as things came to mind—like Newark. She never did remember that she had lived nearly all her adult life in Bayonne. But places like Newark apparently occupy one of those little memory boxes stacked in her mind.

On the way home, I blasted the King’s College Choir singing the Kyrie Eleison to drown out mom’s smacking lips. Not exactly a boombox special. Oh well, back to my port and walnuts!

Monday, December 8, 2014 

Valentino was the first to be awakened. He let out a moo, instead of a bark. Must have been in a deep sleep. Mom was busy yelling for me. Rob responded. I responded. And Valentino responded. The three of us stood at her bedside, while she complained about finding “Sandy.”

I’m Sandy, mom. What do you want?

Where is Sandy? She said she would be here?

Well, I’m here now and it’s 4:00 am. What do you want? Are you OK?

Where is she?

Mom, it is 4:00 in the morning. You woke all three of us. Now go back to sleep and let us sleep. 

What a strange moment it was. The three of us, standing there in a stupor. And the three of us remained in a stupor most of the day. At least I did. I had to take my car into the shop, run to the bank, pick up the lamp from Kevin the repair man, go to Bed, Bath & Beyond for drawer dividers, drop off my check with the accountant (and beg for mercy), drop off the plates for Becky and Brian with Mark, buy pretzels for the my clients, and send them to Tokyo. I received two jobs today from a client and worked as hard as I could, considering the cloud in my brain from lack of sleep. At least these are preliminary drafts.

I warned my mother to stay awake and not go to bed too early. I explained that I cannot afford another sleepless night, nor could Rob, nor could faithful Valentino.

We have cleaned the bathroom numerous times today. It’s doubly exhausting when you have had little to no rest. I am actually delighted that we are expecting a storm tomorrow—just ice, no snow. But it will mean that I can stay home and get work done here. No traveling. I am slated to be in Pottstown at the hospital in the morning, but I shall not venture out if the roads are icy. Not worth it. And tomorrow night, I will have to give my regrets to my client. No dinner discussion. Too dangerous. On Wednesday, I was supposed to visit with Anne. Was looking forward to it, but it’s a 2-hour drive, and we have already canceled owing to the miserable forecast. I am relieved to be spared the drive, but sorry not to see Anne. Nonetheless, we will reschedule and I can recover from last night.

Mom asks as usual—nearly all through the day—Where’s Rob? I haven’t seen him all day. After a while, I no longer make excuses. I no longer try to explain. I just tell her that he made her breakfast. He served her coffee. He gave her cookies. He made her bed. She doesn’t remember.

When she asks why the towel is missing as I hand her a paper towel, I no longer hide the truth: It was covered with poop. It’s soaking and will go into a special wash. I no longer coat the truth. She won’t remember anyhow.

When she asks if I will sleep with her—as she does every single night, several times a night—I tell her emphatically No! You sleep in your bed, and I sleep in mine. There is only room for one person in your bed. And I need to sleep upstairs. When she responds, You don’t like me do you? I say, You live in my house. I buy you clothing. I feed you. I do your laundry. I keep your bedding and clothing and body clean. I cut your hair. I take you to the foot doctor, the GP, and the chiropractor. How can you say that I don’t like you! 

I just found mom in bed again. This might sound cruel, but I told her to get out of bed now! It’s 6:30 in the evening. She rests all day and is awake at night. There is no way in you-know-what that I am going to spend another sleepless night!

Can you tell that I am exhausted?

Oh wait, yet another trip to the potty. Another turn at cleaning mom and the bathroom and yet another turn to say, Get out of bed now! It’s too early. I want to sleep tonight! I cannot tolerate another foggy day!

Tuesday, December 2, 2014 

I am almost ready for Christmas. All of the decorations are on the porch, which I cleaned and readied just 2 days ago. Was thinking of switching on the gas fireplace and bringing mom out to the porch to watch me decorate the tree. But she is still my mother. I can hear her now: Put another red one there. Move that one. Yeah. That looks better. But then, why not give her the chance to “organize” something “on her own.” This is all presupposing I can actually get her out onto the porch. There will be a mixture of sleet and snow and rain today; so who knows how comfortable the porch will be, even with a robe and a blanket. I can manage it, but I know my mother won’t.

She has been getting up early each morning when I am about to walk Valentino or about to go to church. I avoid putting on lights, and I try to move about quietly. But sometimes Valentino barks impatiently. Can it be that she hears or has she become acclimated to our going out at that time? Mom calls constantly once she is awake: Sandy! Sandy! Often it’s only to hear the time. I have thought of putting a digital clock in her room, but that is sure to frighten her. At times, even the light on the television becomes terrifying. By now, however, “the man in the tree” outside her window is not a bother. Did you see him? He’s been up there all night! Sometimes I humor her. Other times, I am short with her: There is no man. There never was a man in the tree. Think about it mom! How can a man stand in a tree all night long? Well, maybe she was a survivalist in a former life. But even as I say the words, I know how preposterous I sound. Think about it? How can she think? That faculty is long gone. Thinking occurs on some level, but her brain is no longer fully functioning. She is a child becoming an infant. And there is where I have the greatest difficulty.

 

Tuesday, November 25, 2014 

You know how wireless phones are: they have many buttons. Why, when I visit another person’s house and am required to answer the phone for them, I sometimes have to search for the TALK button or the SPEAK button or the ON button. At home here, Mom often asks who is calling and why the light is blinking. I explain each time that the blinking light indicates that I have a message. This information doesn’t stick, of course, and she asks again and again and again. Her hearing is so impaired, she usually cannot even hear the phone ring.

But yesterday, mom not only heard the phone ring, she actually answered it. “Aunt” Betty was calling. Betty was as surprised as anyone that mom had answered. When mom asked who was calling, Betty explained it was she. So mom invited her over and told her she was very lonely. I was out shopping and Rob was in the yard raking leaves. He came in every 30 minutes to offer her juice or water, to help prevent dehydration. But we did not keep her constant company. How mom answered the phone is a mystery to us. Today, she looks at the instrument and does not hear it, does not know what the red blinking light means, and can only take the phone when I hand it to her to speak with her son. He’s the only person she knows over the phone. Mom doesn’t even know Ann, who lived with her for more than 2 years and who fed her and bathed her and dressed her. Yet, yesterday, mom called me Ann. There are residual memories locked deep within her brain somewhere. I am not sure if one can be happy when these memories surface; they must be so fleeting as to be foreign, or present as pictures of another lifetime, or perhaps someone else’s lifetime.

But there you are: on one minute and off the next—able to answer a phone, not able to hear the phone at all.

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.