Tuesday, February 24, 2015

Yesterday, I printed out the words to mom’s favorite Italian songs. We had a blast singing. I played the music on the computer from YouTube: Carlo Buti, Perry Como, Dean Martin, Lou Monti…

Today, mom has been reading the words and asking me incessantly, Did you write these?

No mom, I did not write them. I printed them from my computer. They are from old Italian songs. And you have been singing them since before I was born.

Oh. Did you sing from the window?

No, mom. Those are lyrics from the old song.

Who sang from the window?

No one, mom. Those are words to a song.

Oh. Did you write these?

No mom, I printed them out from my computer. I did not write them. You know those words. You sing them all the time.

Oh. Who sang at the window? 

This has been going on all morning. I expect it to go on for a while today. I might have to take the lyrics away. Seems a shame to do so.

I walked Val and just before I left, mom asked about the weather.

Is it warm out? It feels good right here.

Well, you are inside, mom. It’s very cold outside. It’s below zero.

Oh. Why did you put a coat on him [Valentino]? Does he need to wear a coat?

Yes, I told you. It’s cold out there.

Why are you wearing a hat? Don’t wear a hat. [Mom and her sisters wore kerchiefs. God help me!]

See you later.

[To Rob as I walked out] Where is she going? Why is the dog wearing a coat… 

My chiropractor wised up. He and his siblings were going to take turns taking care of their mother. Good intentions. Terrible idea. He said that in two weeks, he clocked about 10 hours of sleep. His mother would get dressed at night and sit on the couch, waiting to return home. So they finally did it. She is back home with two full-time caregivers. I wish I could have done the same for my mother. I wish we had not sold her home and had instead rented the upstairs to help pay the mortgage and the taxes. But taxes were out of sight in New Jersey. More than $13,000. Probably would not have had enough left for the caregiver. So sad. Mom still asks about her “things,” in particular, her rugs. Long gone.

In the background as I write:

Rob, it says “that sweet melody as I sing by the window.” Is that Sandy? Is she singing by the window?

No!

And it will go on and on and on and on!

Sunday, February 22, 2015 

Cold and snowy. Snowy and cold. Icy and cold. Cold and icy. Snowy and icy and cold. The permutations are few, yet some still speak of spring. It’s all about hope. Still, if I catch that troublesome groundhog, there will be real trouble!

Valentino refuses to go out and if he does, he stands there looking for direction from me, as I hover on the back porch. I got little sleep last night. He needed to go out and didn’t want to be there alone. I understand. I empathize. Nonetheless, after I let him out, he needs to make his own decisions about where and when to do his business.

I am grateful that we have indoor plumbing and that mom can waltz to the bathroom a half dozen times at night. She has been doing it relatively noiselessly, unless she calls, which she does nearly every night. Or at least, I hear her calling me every night. She never recalls having called me. So there’s no way to know whether I am dreaming or if she is interrupting my sleep. Still, dreams rarely awaken me. Mom usually does.

She has been singing quite a bit lately. Vicino al’mare mainly, but she doesn’t remember all the words. This hasn’t stopped her from going on for an hour or more. The other night, she nearly drove Rob crazy while I slept. He stays at the computer to do Sudoku, but her incessant singing proved a distraction.

This morning, she awoke early but is still in bed, calling every few minutes.

Sandy!

What mom?

What time is it?

It’s 7:00 am.

Oh, wake me later. Where’s Rob? (Laughing) Is he still sleeping?

Yes, mom. It’s only 7:00 am.

Wake me later, will you, because I love you. I really do. Where did you get that shirt?

Betty bought it for me.

I really like it. Wake me later, will you?

 

Seconds later:

Humming, then, Sandy!

What mom? (“Swiffering” the furniture and shutters as I go)

Why is that always moving (she points to the shutters)?

Nothing is moving, mom. It’s your eyes.

The others don’t move. Just that one.

Go back to sleep mom. It’s not moving.

Why are you always cleaning?

Because I was raised by a crazy woman and her crazy sister Vera. All they ever did was clean. And now, I’m crazy, too. Just like my cousin Karen.

Oh

It won’t be long before she calls again and before I put her in the shower, while she complains bitterly that she has already had her shower. Still, once mom gets under the warm water, she says that it feels so good.

Thursday, February 19, 2015 

Well, last night on my way home from Pottstown, where I had to buy supplies for a patient, I hit a snow squall. Was never in anything like this at all. Reminded me of North Dakota, where I visited with my brother’s ex-fiancé in the late 1960s. In seconds, I could not see a thing on the road. It was a total whiteout. My headlights made it even worst. So at first, I turned them off thinking I could find my way home in the sudden blizzard. I could not. I was already on the side of the road, because I heard the buzzing sound under my tires—the rumble strip—where the road is etched to warn you that you are too far over. On a clear day, you can see the strips. Last night, I saw nothing but snow darting toward my windshield. I stopped under an overpass. Fortunately so did every other car. My only fear was that some other car or cars would try to trudge on and hit you instead. No one did. We all waited and waited. Inches of snow fell in minutes. Later, I learned that I was only a half mile from my turnoff.

When I finally got moving, I did so with my “Winter” drive. Fortunately, Volvos are equipped with sensible options, this being one of them. Pennsylvania is hilly; so I had that challenge to face, but I made it home. The road below my house runs along the Schuylkill River. It was hauntingly beautiful after the blizzard. I was the only car on the road and watched for deer, but none came. They must have still been hunkered down somewhere. Smart thing to do. I made it up the hill to my house, pulled into the garage, made it upstairs, and put on a pot of milk. Nothing like warm milk. My neck and shoulders were aching.

I only hope everyone on the road last night made it home safely. Had this been North Dakota, the blizzard would likely have engulfed the car, endangering my life and the lives of all the other drivers. But this squall lasted only minutes, even though it seemed so much longer. Quite an experience. Rob watched from our house and could not see the house across the road. He tried to call me, but at that point, I was still driving and did not answer my cell phone.  

This morning, Mom called me:

What are we going to do about coffee?

Mom, what are you talking about?

What if we want coffee? How will we drink it?

We have plenty of cups, Mom. Go back to sleep. 

Our priorities are clearly different.

Wednesday, February 18, 2015 

Mom arose early today. She’s up and our day has begun. A quick trip to the bathroom, and I tried to remove a wad of soiled toilet paper from her diaper, which she too quickly grabbed.

Mom, don’t touch that!

It’s clean. There’s nothing on it. I showed her the mess.

Oh.

Thus began the morning. The mess, the smell. It’s another glorious day of wiping and washing, laundry, and prayer. Oh Lord, why am I such a mess? Why can’t I be more pleasant to this woman? You know how I feel about a dirty home, and now this!

At the kitchen table, mom started her clocking. She reads the clock nearly continuously.

It’s only 8 o’clock.

Yes, mom.

Oh migod, it’s only 8:01.

Yes, mom.

Mom turns toward her word search puzzle. Sandy, see if you can find this word.

No, mom. You usually find the words.

I didn’t do this book. Someone else did. Look! 

This reaction brings me back to the wonderful Maggie Smith film, “My House in Umbria.” A lovely child lost her memory after a “timed device” exploded on the train she and her parents were taking to Milan. She lost her parents and any memory of the incident. Later when Chris Cooper (her distant uncle) came to claim her from Mrs. Delahunty’s (Maggie Smith) home in Umbria, he remarked that her drawings were quite wonderful. When the child denied having done them, another one of the train’s survivors (Werner) also living there said that he had done them. The uncle then speaks with the child’s doctor who later explained that Werner took responsibility for the drawings “out of kindness. If the child didn’t know she did them, then it would be sort of worrying to her.” I often think of this scene. Mother has not clue that she has done the word search puzzles. Yet every day, I tell her that she did them. She doesn’t worry. She doesn’t even remember from one minute to the next what I just said. I often wonder if I am going to spend the rest of my life regretting that I could not be kinder to her. The day is filled with her needs; demands for her sweater, water, tissues, something to eat, something to drink, to change the channel; to cover her.

She is a woman with a mother and a needy child inside: Where are your shoes? You need a coat! Wear your hat! Where are you going? When will you be back? What are you doing? Where are you? Why is that dog barking? Where is the white dog? Who’s at the door? Is the phone ringing? Who was on the phone? What did they want? What did my husband die of? Did my husband die? Is Rob your father? Who is Rob? Is Rose still alive? Where does she live? Why isn’t she here? Where is Sandy? Where did she go? Where is Rob? Is he still sleeping? What time did you get up? What time did Rob get up?

And each answered question is followed by her Oh! 

Right now, she is fugue-ing. Unfortunately, I told her that we were going to the podiatrist today. While Rob assures her that we have four hours before we have to leave, she will endlessly ask: Where did she go? I have to go! I have to get dressed. Where is she? I have to get ready.

You don’t have to go for four hours, says Rob in an attempt to soothe.

Oh. But where is she, I have to get dressed. 

I should not have said a word. A caregiver friend remarked how the cared-for live a 24-hour day, while the caregiver trudges through a 36-hour day. It’s endless. Nancy knows this, too. Every day, the routine lengthens. What took 20 minutes the day before seems to take 40 minutes some days. And when you hit a good day, you become lulled into thinking that you can handle it. Then for some reason, she calls endlessly through the night and all during the day. You wish there were some way to stop it. You wish that one day you did not have to wipe feces from the lightswitch plates and the woodwork and her cane and her clothing and the table or wherever she has been. You wish that you had never said a word about going out, because she will not call you every 30 seconds—yes, every 30 seconds or maybe 15 seconds, or if you’re lucky, every minute—to determine where you are going, why you are going, when you are going, what she should wear and to hurry, hurry, hurry.

My office door is closed, but I can hear her questions. And what’s worse, Valentino is not in here with me. I need my pup. I want him to be close to me, and I don’t want him to feel shut out. I’ll go look for him. Frankly, I would much rather be with Valentino than with my own mother. And I don’t feel a bit guilty about that at all.

Monday, February 9, 2015 

Someone, somewhere must have been praying for me. I was in a better mood today as I worked with mom. Was not feeling chipper this morning and tried to stay in bed. Never works. So I walked Val and then went for my annual physical. My doctor and his wife cared for his own father for a while. After his wife could bear caregiving no longer, his sister took her father in. She swore she would never put him in a nursing home. This lasted a mere six weeks. As my physician knows what I am going through, he said that caregiving will probably rob me of years of life. I am more than prepared for that eventuality. I certainly don’t want to live as long as my mother has, unless I could be completely independent.

Caregiving is so difficult—in case you do not get the picture by now. Nancy’s job is even worse, since her husband can no longer communicate with her, except by grunting or shouting. He can’t even point as his arms are atrophying and his hands are in fists. So I offer each day’s difficulties for her and Eric. It’s the least and perhaps also the most I can do right now, besides being a phone call away.

Prepared a quiche dough à la Julia Child, as I used to years ago. Decided to make a shrimp quiche. The dough was perfect and so was the finished product. It browned beautifully. Was not enamored of the supermarket gruyère that I used. Other than that, it was so much fun to prepare and eat. Mom enjoyed it, too. Made a spring green salad with my special vinaigrette. Am ready to take the afternoon off, unless some editing work comes in.

I love to cook. Hence, my wonderful stove. But I always give pause before I start. I must prepare like a surgeon, because mom invariably calls me into the bathroom, necessitating my scrubbing for minutes before I return to the kitchen. She always seems to know when I am cooking. As I said, I love cooking, and mom knows how to put a crimp in my style. She always did. Did I tell you about the time I had called her from my little cottage in Princeton. I had rented a small apartment from Esther, a wonderful Quaker woman. She lived amid a mass of flowering trees. One day, I was determined to sit on the deck, take in the beauty, and relax. But that ended. Mom called. I told her my plan, and the conversation went like this:

It’s such a gorgeous day. I am going to sit on the hammock and do absolutely nothing but enjoy the sky.

You should wash your windows.

I will do no such thing! 

Of course, after I hung up, I washed the windows. So I called her back.

Well, I washed the windows.

Why would you do that on a day like this? You should relax. 

Life with my mother has always been more than frustrating. Always! And now, I have reached the pinnacle.

Sunday, February 8, 2015 

Today is Valentino’s birthday. We sang Happy Birthday so many times to him, he must be baffled. I also had to bring up Lucia’s harness. Val’s broke yesterday. Was lucky to have saved the other one in the basement. I had not intended another dog to wear it ever. But I had no choice. Val sniffed and sniffed away at it, moving me to tears. We both miss her terribly.

Tonight I cried some more. Saw a film called Iris about Dame Jean Iris Murdoch, celebrated English author and wife of scholar and professor John Bayley. Iris was robbed of mind, spirit, and life by Alzheimer’s disease. The story of her decline into Alzheimer’s was recounted for the screen by her devoted husband. Now, mom doesn’t have Alzheimer’s, but there were moments in the film where John lost it and couldn’t deal with the fading of his wife’s mind and the growing distance between them. I felt absolved in a way for the many times I yelled at mom or became terribly impatient with her. Alzheimer’s is the Great Robber. Dementia, on the other hand, is the Great Frustrator. Both are horrible demons. Both to be despised. But the people they inhabit must still be loved. And how difficult, how very difficult that can be.

Friday, February 6, 2015 

Mom’s quintet of trips to the bathroom continues, but this time, not only in the evening, but also in the morning. Who knows; this might pass. Mom has, at least temporarily, become aware of soiling her nightgown and was worried last night and again this morning that she had. I assured her that every day we do several loads of laundry and that soiling hardly matters anymore. Sort of. The routine is to take her clothing and bedding down to the basement (or throw it down, using the stairs as my laundry chute), don my heavy rubber gloves, wash off feces and bodily fluids in the basement sink, load the machine, add Lysol concentrate and detergent, and get on with it. That’s the first load. Same for each load. There was a song in the 60s that went something like that: Second verse, same as the first. I’m Henry the Eighth I am, Henry the Eight I am, I am… And another: Laundry, laundry, bo-baundry, bo-nanafana, fo faundry, fee, fie, mo maundry, laundry! Oh well.

At least I can entertain myself this morning. Mom is back in bed (it being too early). The routine will begin again in another hour or two or three. Depends. Yes, Depends.

First, the story here at home. Mom got up as usual and I ushered her into the bathroom and asked her to sit.

I don’t have to go.

Yes, you do. Just sit and go.

So she sat and pulled down a loaded diaper. My caution not to touch the diaper went totally unheeded.

See, it isn’t that bad, she said.

I cleaned her legs, her feet, her slippers, and threw her nightgown in the wash. I put her in the shower. Figuring the onslaught was over, I sent her to breakfast, but neglected to put another diaper on her. I figured I could do that when she returned to her room. But instead, I wound up cleaning floors, rugs, clothing, walls… My fault. Not a happy morning.

Just off the phone with Nancy, who is also dealing with messes of every kind. We talked about her husband and her many losses: the loss of his income, his ability to speak, and 4his ability to walk and feed himself. She is in continued and progressive mourning. Eric might be in his home, but he is not at home. Rob and a pastor friend of Nancy’s both commented that they wouldn’t want to be trapped in a body like Eric’s. While it is not our place to pray for his passing, we pray for Nancy’s strength and endurance and peace in the household. Eric is most definitely not at peace and Nancy cannot even go to the store unless someone is with him. And being at the supermarket is not exactly her life’s desire. No longer are there lunches with friends, and phone calls are cut short when Eric beings to scream or she must prepare him a meal or change his diaper. Through all this, however, Nancy is the soul of grace—though she would deny it vehemently. She loves her husband for better or worse and has been there for him in every way possible. Nancy is a model of the kind of caregiver I aspire to be with my own mother. She is a good and Godly woman. I call her as often as I can, trying not to become a nuisance. But our daily calls about nothing and everything are solely about Eric and her current situation. The rest of her life as Nancy knew it is over. Why this door is closing and what is on the other side, we do not know.

Wednesday, February 4, 2015 

Sometimes mom sings and hums. Sometimes she just talks to herself. Sometimes she carries on conversations and even arguments with an unseen companion. She’s in another world most of the time. But it’s haunting to hear her sing while she is in bed. If I go in to see how she’s doing, mom will look up at me and raise her voice in song, singing some words from an old Italian song and making up the rest to fill in the gaps. I sometimes wonder if I will hear her songs wafting through the house after she’s gone, the way filmmakers do it in ghost stories.

As for bringing mom to a home for respite, it’s still in the works. These things take time and will necessitate another trip to the GP even before she can be admitted for one day. Updates to follow.

Sunday, February 1, 2015 

Forget all that peace stuff I said in my last post. I have had precious little sleep this week, about 2 hours a night. Then again, I might have fallen into an uneasy sleep somewhere during the night. But I could always hear mom. She goes to bed around 7:30 or 8:00 at night and spends most of the middle of the night roaming to the bathroom—2, 3, 4, 5 times. Each time, she slams the door as hard as she can. Even my worn out old towel atop the door is no longer doing the job. And she calls. She never remembers calling me when she gets up. She denies slamming the door. Mom has no memory of anything, ever.

I had been working on a newsletter, but I quit. I had to. No stomach for it on so little sleep. No desire for any kind of work, and yet I need the income. Tomorrow, my conference call with a long-time client who wants me to switch to a PC will determine if I have any steady work at all. And you know what, I don’t care! I will somehow pay the bills.

Tonight alone, while mom was awake and watching television, she took no less than 5 trips to the bathroom. While I have been home, she has taken at least 10 trips. Each time, she does what she can, but never enough. At night, she will spend time in the bathroom, necessitating that I sanitize the toilet, the sink, the floor, and the walls and woodwork and light switch plates on her march to and fro. It’s exhausting. I have had it! I am going to take some time off and put mom into a nearby nursing home for a week. I need time to play the piano, time to have a meal in peace, time to play with Valentino, time to calm down, time without wiping another wad of poop from my own mother, a night without cleaning the bathroom, an afternoon without cleaning the bathroom, a day without cleaning the bathroom, a day without washing poop off her nightgown and towels, a day without the smell of bleach and Lysol and getting up in the middle of the night to the smell of poop and waking up to the smell of poop. And I need a day without my own anger and impatience. I need a day without hearing her call my name, asking me to sleep with her, asking me for a tissue, asking me for water, asking me to turn a light on or off or to change the TV channel. I need a day, a week with some peace. If I don’t experience peace, I cannot give it to another. I have made my decision. She goes in for a week—if they will take her. The last home will not have mom back because she is no longer independent. Hoping the second home she visited will be amenable to her staying there for a few days.

Dear readers, you are witnessing a day in the life of a woman at her wit’s end.