Monday, August 25, 2014 

I worked late last night helping BH. He was in the midst of too much work given to him as a challenge, once again. BH suffers, as one colleague put it, from a variety of medieval diseases and disorders. He’s always in the hospital, always laid up with something, and yet, he remains employed—well, sort of. BH and his wife and the children still at home are moving yet again. They often do—sometimes to his wife’s sister’s house, sometimes to be with one of their grown daughters. They had been renting a 4-acre property in Hopewell. I myself would not be renting a 4-acre property in Hopewell if I lived on the financial edge and BH does. But they did and they loved it. Now, their hearts are broken and they are preparing to move yet again, this time from another place they love. Their lives are peppered with lovely places they have had to vacate. I could think of a worse way to live if I were near indigence.

At any rate, BH had another work crisis. It was an easy job: listen to a tape of a German-speaking man and fill in the blanks of a transcript. Was a hopeful message about the path to personalized medicine for cancer. My thoughts kept returning to Margie, my beloved sister-in-law. I didn’t want to think about being so close to sparing her life. I almost wanted to hear that we are light-years away from helping people with glios. Almost.

This morning, it was business as usual: walked the pups with Betty, met Marty’s wife, our Sikh friends, Buds’ wife with Duke (apparently Bud had a bad night and was sleeping in. Pretty rare for him!), and an array of drivers, who wave and smile as they go by. Most are on their way to work and perhaps they think I, like Betty, am retired. One thing I will never be is retired! Fortunately. Thanks to friends like BH and my (thus far) steady clients.

Decided on a big breakfast: sausage, fried potatoes (the good ones I parboiled from Rodale), green beans (also from Rodale), a slice of toast with rose apricot jam, and ginger tea with cinnamon honey. Mom got up while I was making breakfast. (She’s already been to the bathroom twice.) She declined sharing my breakfast, so I prepared her cereal. Mom wanted company while she ate, and I gave it a try. But I could not abide the sound of her sucking her lips and slurping her food. Mom is the only person I know who can actually slurp meat. She poises the spoon or fork a few inches from her lips and sucks it in like a vacuum cleaner, never bringing the food to her mouth.

Anyhow, I finished my breakfast on the porch, which is what I had originally intended, all the while feeling guilty for not giving mom the company she craves. I had put the kitchen light on for her, but as usual, she protested. You don’t need that. I protested back. Yes, you do.

Am off in a bit to bring my car in for another cosmetic treat: new side lamps. Why not? She looks prettier and prettier each time I spiff her up a bit. Greta Carbo has been so very good to me. She is nearly 239,000 miles old!

Then back to work.

 

Later—

Mom is at it again: going to the bathroom every 15 minutes. I have decided to allow her to go unattended. It’s the only way I can continue to work and the only way I can hold on to what sanity I have left. Between mom and Val, it has been challenging. Valentino is beside himself today and barking like a wild dog at every passing dog, person, school bus, and The Skateboarder! Yes, today was the first day back at school: children and school buses. The morning primes him for the rest of the day. It sets the stage for overreaction to just about EVERYTHING! I actually put his leash on him and went out front, where I had The Skateboarder (who was looped again) make Val sit and give him some cookies.

 

Hold on… mom is calling again! (She just needed me to swivel the television and close the shutters.) Oh well, it’s the least I can do.

Thursday, August 21, 2014

Walked the pups, fed the pups, took care of mom’s three morning trips to the bathroom. Drove off to market, where I substituted for Martha from 8:00 am to 3:00 pm. Hard work. Rushed off to Rodale to pick up my organic food order for the week. Came home. Made zucchini and potato soup. Broiled salmon with mustard, lemon, and dill. Fed mom and the kids, and then headed off to Pottstown, where I met my client for dinner and brought him some of the salmon. Long day. I can hardly describe here how exhausted I was. Left mom to Rob’s care. Tomorrow will be just as exhausting.

 

Friday, August 22, 2014

Worked on manuscripts all morning. Then headed off to New Jersey to meet a client for dinner. Took mom along for the 3-hour drive. Couldn’t get a sitter. Betty will see to the pups.

Where do these people live?

In New Jersey.

Oh.

Who are they? Do you know them?

They are clients.

Oh.0

 

Moments Later—

Where do these people live?

In New Jersey.

Have you ever been there before?

No.

Oh.

 

Moments Later—

How far away is it?

A lot farther.

Oh. Have you ever been there before?

No.

Oh.

 

Moments Later—

My goodness. Look at all the cars.

That’s a parking lot, mom.

Oh yeah.

Don’t you remember parking your car in a parking lot?

Oh yeah.

 

Moments Later—

How far away is it?

A lot farther.

Oh. Have you ever been there before?

No.

Oh.

 

And so it went. I brought some organic veggies with me as a gift for the hostess. We had a wonderful meal and a fabulous time. It was like being with family—the part of the family you really love. Mom interrupted the conversation a few times to ask a question, always a nonsequitur. But it was her way of being a part of the evening. And no one minded. She didn’t complain about going home while we were there, because fortunately, she was unable to see that it was already dark outside. Mom always complains about going home when she is aware that it is no longer daylight. It’s getting late. We have to go!

Mom did not sleep during the 3-hour trip home, but she remained quiet. Fortunately, she was tired, but so was I. We arrived home at midnight with a huge amount of delicious leftovers. Betty had seen to the pups, but we walked them when we got home. Lucy, my 15-year-old, had pooped twice on the walk. I thought we were fine, but she managed a third poop in the house. Cleanup! Fortunately, I am now expert at this.

Am grateful for the leftovers! Will make tomorrow easier. I won’t be home to cook. And Rob will be on duty once again.

 

Saturday, August 23, 2014 

Day of the third annual Historic Dreibelbis Farm Festival. I signed on about 24 vendors and had already met with the docents who will lead the tours through the house. Wonderful group of women!

Was looking forward to the day and seeing the alpacas. As my iPhone predicted (well, that was where I first saw the news), however, we had rain. All day long. Mud and rain. No alpacas. Kathy didn’t know we would provide a place for them in the barn. There were moments of relief from the rain. And I did get to see some of the vendors. Bought soap and lemon curd and more redware plates. Led tours through the house for all but 1.5 hours of the day from 10:00 am through 5:00 pm. A very long day and the end of an exhausting week. Mom had been once more left to Rob. Tomorrow, I will rest—apart from working on two manuscripts and caring for the pups and mom.

 

Sunday, August 24, 2014 

I had a pleasant morning. Made a nice breakfast for mom and me before going to church. Church and home again. Then I tried to work. But today, mom made a record 10 trips (or more, I have lost count) to the bathroom. I have not even had time to feed her early supper. Pups are outside. Rob is mowing the lawn. Mom is watching television. My work awaits. One more interruption and I will erupt!

Finally made mom some supper. She wouldn’t eat the green beans.

They’re too thick.

But mom, they’re from the garden. Try them.

Oh yeah. They’re good. 

Made myself some tea. Back to work on the manuscripts.

Thus endeth the day and a very challenging week!

 

Monday, August 25, 2014 

I worked late last night helping BH. He was in the midst of too much work given to him as a challenge, once again. BH suffers, as one colleague put it, from a variety of medieval diseases and disorders. He’s always in the hospital, always laid up with something, and yet, he remains employed—well, sort of. BH and his wife and the children still at home are moving yet again. They often do—sometimes to his wife’s sister’s house, sometimes to be with one of their grown daughters. They had been renting a 4-acre property in Hopewell. I myself would not be renting a 4-acre property in Hopewell if I lived on the financial edge and BH does. But they did and they loved it. Now, their hearts are broken and they are preparing to move yet again, this time from another place they love. Their lives are peppered with lovely places they have had to vacate. I could think of a worse way to live if I were near indigence.

At any rate, BH had another work crisis. It was an easy job: listen to a tape of a German-speaking man and fill in the blanks of a transcript. Was a hopeful message about the path to personalized medicine for cancer. My thoughts kept returning to Margie, my beloved sister-in-law. I didn’t want to think about being so close to sparing her life. I almost wanted to hear that we are light-years away from helping people with glios. Almost.

This morning, it was business as usual: walked the pups with Betty, met Marty’s wife, our Sikh friends, Buds’ wife with Duke (apparently Bud had a bad night and was sleeping in. Pretty rare for him!), and an array of drivers, who wave and smile as they go by. Most are on their way to work and perhaps they think I, like Betty, am retired. One thing I will never be is retired! Fortunately. Thanks to friends like BH and my (thus far) steady clients.

Decided on a big breakfast: sausage, fried potatoes (the good ones I parboiled from Rodale), green beans (also from Rodale), a slice of toast with rose apricot jam, and ginger tea with cinnamon honey. Mom got up while I was making breakfast. (She’s already been to the bathroom twice.) She declined sharing my breakfast, so I prepared her cereal. Mom wanted company while she ate, and I gave it a try. But I could not abide the sound of her sucking her lips and slurping her food. Mom is the only person I know who can actually slurp meat. She poises the spoon or fork a few inches from her lips and sucks it in like a vacuum cleaner, never bringing the food to her mouth.

Anyhow, I finished my breakfast on the porch, which is what I had originally intended, all the while feeling guilty for not giving mom the company she craves. I had put the kitchen light on for her, but as usual, she protested. You don’t need that. I protested back. Yes, you do.

Am off in a bit to bring my car in for another cosmetic treat: new side lamps. Why not? She looks prettier and prettier each time I spiff her up a bit. Greta Carbo has been so very good to me. She is nearly 239,000 miles old!

Then back to work.

Later—

Mom is at it again: going to the bathroom every 15 minutes. I have decided to allow her to go unattended. It’s the only way I can continue to work and the only way I can hold on to what sanity I have left. Between mom and Val, it has been challenging. Valentino is beside himself today and barking like a wild dog at every passing dog, person, school bus, and The Skateboarder! Yes, today was the first day back at school: children and school buses. The morning primes him for the rest of the day. It sets the stage for overreaction to just about EVERYTHING! I actually put his leash on him and went out front, where I had The Skateboarder (who was looped again) make Val sit and give him some cookies.

Hold on… mom is calling again! (She just needed be to swivel the television and close the shutters.) Oh well, it’s the least I can do.

Thursday, August 21, 2014

Walked the pups, fed the pups, took care of mom’s three morning trips to the bathroom. Drove off to market, where I substituted for Martha from 8:00 am to 3:00 pm. Hard work. Rushed off to Rodale to pick up my organic food order for the week. Came home. Made zucchini and potato soup. Broiled salmon with mustard, lemon, and dill. Fed mom and the kids, and then headed off to Pottstown, where I met my client for dinner and brought him some of the salmon. Long day. I can hardly describe here how exhausted I was. Left mom to Rob’s care. Tomorrow will be just as exhausting.

Friday, August 22, 2014

Worked on manuscripts all morning. Then headed off to New Jersey to meet a client for dinner. Took mom along for the 3-hour drive. Couldn’t get a sitter. Betty will see to the pups.

Where do these people live?

In New Jersey.

Oh.

Who are they? Do you know them?

They are clients.

Oh.0

 

Moments Later—

Where do these people live?

In New Jersey.

Have you ever been there before?

No.

Oh.

 

Moments Later—

How far away is it?

A lot farther.

Oh. Have you ever been there before?

No.

Oh.

 

Moments Later—

My goodness. Look at all the cars.

That’s a parking lot, mom.

Oh yeah.

Don’t you remember parking your car in a parking lot?

Oh yeah.

 

Moments Later—

How far away is it?

A lot farther.

Oh. Have you ever been there before?

No.

Oh.

 

And so it went. I brought some organic veggies with me as a gift for the hostess. We had a wonderful meal and a fabulous time. It was like being with family—the part of the family you really love. Mom interrupted the conversation a few times to ask a question, always a nonsequitur. But it was her way of being a part of the evening. And no one minded. She didn’t complain about going home while we were there, because fortunately, she was unable to see that it was already dark outside. Mom always complains about going home when she is aware that it is no longer daylight. It’s getting late. We have to go!

Mom did not sleep during the 3-hour trip home, but she remained quiet. Fortunately, she was tired, but so was I. We arrived home at midnight with a huge amount of delicious leftovers. Betty had seen to the pups, but we walked them when we got home. Lucy, my 15-year-old, had pooped twice on the walk. I thought we were fine, but she managed a third poop in the house. Cleanup! Fortunately, I am now expert at this.

Am grateful for the leftovers! Will make tomorrow easier. I won’t be home to cook. And Rob will be on duty once again.

Saturday, August 23, 2014 

Day of the third annual Historic Dreibelbis Farm Festival. I signed on about 24 vendors and had already met with the docents who will lead the tours through the house. Wonderful group of women!

Was looking forward to the day and seeing the alpacas. As my iPhone predicted (well, that was where I first saw the news), however, we had rain. All day long. Mud and rain. No alpacas. Kathy didn’t know we would provide a place for them in the barn. There were moments of relief from the rain. And I did get to see some of the vendors. Bought soap and lemon curd and more redware plates. Led tours through the house for all but 1.5 hours of the day from 10:00 am through 5:00 pm. A very long day and the end of an exhausting week. Mom had been once more left to Rob. Tomorrow, I will rest—apart from working on two manuscripts and caring for the pups and mom.

Sunday, August 24, 2014 

I had a pleasant morning. Made a nice breakfast for mom and me before going to church. Church and home again. Then I tried to work. But today, mom made a record 10 trips (or more, I have lost count) to the bathroom. I have not even had time to feed her early supper. Pups are outside. Rob is mowing the lawn. Mom is watching television. My work awaits. One more interruption and I will erupt!

Finally made mom some supper. She wouldn’t eat the green beans.

They’re too thick.

But mom, they’re from the garden. Try them.

Oh yeah. They’re good. 

Made myself some tea. Back to work on the manuscripts.

Thus endeth the day and a very challenging week!

 

Saturday, August 16, 2014

Started out at 6:30 this morning. Laundry, shopping, stopping to talk with Deb and Susie at market, driving Mike here and there. Was supposed to go to the farm for cleanup in preparation for the family reunion tomorrow. Too much to do, too tired. Allergies getting to me. Decided to stake out a spot on the porch and finish reading one of the books in my pile of books to be read. Eventually, I invited mom out onto the porch to join me for a change of venue. Mendelssohn piano trios in the background, we sat together with the pups. Gorgeous day, fresh and bright.

But it was not quite the restful afternoon and evening I had imagined.

[Reading] “I couldn’t be happier to have you,” said the older man. He wasn’t smiling—he didn’t smile too often—but there was plain and simple affection in his face. “For starters…”[1]

How long have you lived here?

For 9 years.

Oh.

Where is Rob? Is he sleeping?

No. He’s outside trimming grass.

Oh.

Where was I. Take it from the top: “I couldn’t be happier to have you,” said the older man. He wasn’t smiling—he didn’t smile too often—but there was plain and simple affection in his face. “For starters you must play in the cricket match next weekend, Charles, and then you haven’t seen my garden—and in truth…”

Where’s the white dog?

I don’t know.

He’s so quiet.

She.

Oh.

Where’s Rob? Is he sleeping?

No, no. There he is trimming grass.

How long have you lived here?

Nine years.

Do you like it here?

Yes, I do.

Let’s see: “For starters you must play in the cricket match next weekend, Charles, and then you haven’t seen my garden—and in truth, you’re coming for the best of the season.”

            This Frederick was the reigning squire of Plumbley, just as his forefathers had been since such a thing called a squire had first come to be in England…”

Is this Pennsylvania?

Yes, it is.

Oh. It’s nice here.

Yes, it is.

 

“… and begun passing down the family name from father to son, from uncle to nephew, and occasionally from cousin to cousin…”

Where’s the white dog?

I don’t know.

The black dog is always so quiet.

No, he isn’t.

Where’s Rob?

He’s outside somewhere.

 

“… There was no unbroken line of male succession, yet each Ponsonby who abided at the great house, as the family called it…” 

How long have you lived here?

Nine years.

Oh. Do you like it here?

Yes, I do.

Do you own this house?

Yes, I do. (Sometimes I tell mom that the bank owns it.) 

“… There was no unbroken line of male succession, yet each Ponsonby who abided at the great house, as the family called it, had viewed it in much the same light: There had been no profligate along the way who tore down the land’s timber to pay gambling debts or sold off the estate’s outlying areas for pony-money. Thus the estate—though it was legally…”

Where’s Rob?

I don’t know.

Is he sleeping?

No.

(Rob) Here I am.

Oh there he is.

Do you own this house?

(Me) Yes, I do. 

“Thus the estate—though it was legally unbound and therefore each new heir might have sold it on his first day of taking up the patrimony—had remained intact for many hundreds of years. Only tremendous good luck…” 

Where do you sleep?

In my room upstairs.

Oh. 

[One more time] “Thus the estate—though it was legally unbound and therefore each new heir might have sold it on his first day of taking up the patrimony—had remained intact for many hundreds of years. Only tremendous good luck…”

Sandy, did my Johnny Boy ever come here?

Yes, mom. He’s been here several times. He’s taken us out to lunch.

Oh. 

“Only tremendous good luck…”

Where do I sleep?

In your room.

Oh. Is there a bed in my room?

Of course there is. Don’t you remember? (I know I am not supposed to challenge her loss of memory, but I cannot help myself. She’s challenging me!)

Where is my room?

Downstairs.

Oh. And where do you sleep?

Upstairs.

Oh. 

“Only tremendous good luck had held it all together. Or a peculiar, settled sort of inherited trait in all the Ponsonbys…”

Where do I sleep?

In your room.

Do I have a bed?

Where did you sleep last night? (I know, I know. Don’t challenge her!)

[Mom shrugs.]

Did you sleep in the bathroom?

[Mom shrugs.]

Maybe you slept outside. (I am out of bounds. But I really, really want to get beyond this page!)

[Mom shrugs.]

You slept in a bed in your room.

But where is my room? I don’t know where it is. 

“As a group they were similar, all quiet, all bookish, all in love with home. The portraits that line the front hall showed a long sequence of gentle gentlemen.

            Frederick was no different. He was without aspiration to any greatness of personal achievement, was excessively modest, yet was a merry and genial soul, who took…”

Where do you sleep?

Upstairs?

Where do I sleep?

Do you remember where you slept last night?

No, I don’t.

Well, you must have slept in bed.

I don’t know.

Did you sleep in the bathroom?

I don’t know.

Did you sleep in a bed?

I don’t know.

Do you have a bed?

I don’t know.

Do you watch television in your room?

I never watch television.

Of course you do. You like game shows.

Oh no. I never watch television.

This went on for 3 hours, but I did finish the excellent book, and mom did make it to her room. When we reached the kitchen, I showed her where she eats breakfast.

This is where you eat breakfast every day.

Oh. Where do I go now?

Straight ahead. You’ll see.

Oh.

Upon seeing her room: Oh yeah.

Not one minute later, she called me to go to the bathroom. I made her sit and stand three times to be sure her bladder was really empty and to avoid having to make 3 separate trips to the bathroom.

But now, I just have to remember where the bathroom door is.

Yes, you do.

Minutes later, mom was asleep. The dogs have been out, and I am calling it a night. I wonder how much of the book I read I will remember. But I do know that it left me feeling happy. Nice way to end the night. And I smile at mom’s lack of memory. She is still a pretty woman with a lovely smile. What’s not to smile at?

[1] Excerpts from Charles Finch. A Death in the Small Hours. 2012: St. Martin’s Press; New York, NY.

Tuesday and Wednesday, August 12–13, 2014

 There is no understanding how mom’s mind works, or doesn’t work. She will ask, Where were you?

You don’t remember seeing me this morning?

Oh yeah. (translation: No)

I took you to the bathroom twice and gave you clean panties (translation: Diapers)

Oh yeah. (translation: No)

 

Later–

Where is Rob? I haven’t seen him all day.

He just made you toast and coffee.

Oh yeah. (translation: Oh yeah?)

 

How does mom even remember that there is a Rob! She never remembers seeing him or being in his presence.

 

Where are the dogs?

They’re sleeping.

Oh yeah.

 

Later:

Rob, where are the dogs? Sleeping?

Yes.

I can’t believe it. (Another frequent comment and an old standby.) 

How does mom even remember there are dogs?

 

Later: 

When we go to the hairdresser, her overwhelming concern remains paying me for the hairdresser’s bill. She remembers she has a bank account. She knows she must pay for the work, but she never recalls having been to the hairdresser before.

Have you ever been here before?

No, but you have been here several times.

Oh yeah. (translation: Really?) I need to go to the bank to get my money.

Don’t worry mom. You don’t need to go to the bank.

But I have to get my money. I have to pay you back.

No, mom. You don’t have to do anything of the sort.

 

Each time we travel to Cheryl’s house:

Have you ever been here before?

Yes, mom, and so have you. Many times.

Oh yeah. (translation: Really?)

 

When she sees Cheryl and Bob again:

It’s been so long since I last saw you? How are you? You look wonderful. (These are mom’s usual comments, even though she will have seen Cheryl recently.) Is this your father?

No, he’s my husband. (For some reason, mom never remembers meeting Bob. But she seems to remember Cheryl. Then again, there’s no telling…)

A few days after seeing Cheryl and Bob again, mom asked

Who was that man, Rob?

What man?

That man who was here yesterday?

She’s talking about Bob, Rob. She thinks he was here only yesterday, not two days before. Mom has her days mixed up.

 

On giving mom something to drink

Oh, I can’t drink all of this. You take some.

No, mom. Drink half of it now and then drink the other half later.

(Mom laughs) This means mom doesn’t understand a word I said.

Mom, listen to me. Drink… half… of… it… now. And then later… drink the other half.

You have some.

No, mom. Save it for later.

(Mom laughs)

Mom, listen. Drink what you can.

And then, I know…

You know what?

Have some, won’t you?

No. I said to save it for later.

I’m not this thirsty. Have some with me.

Oh my, mom, you are as deaf as a doornail.

(Mom laughs) Mom hasn’t got a clue!

 

Took mom to the shoe store. The podiatrist and the chiropractor suggested that she should have new shoes. Frankly, I never though to look at the heels of her shoes. The shoes were practically brand new and she wears them so rarely. But the heels were worn unevenly. (The doctors have also recommended that she wear shoes in the house for increased stability.) 

So, we went to a local shoe store that sold SAS (San Antonio Shoes). I have a thing about buying American. I ordered her shoes and then we took a trip to the supermarket. I made mom walk without my help from the parking lot to the store. She asked for help, but I refused and wanted to see if she would/could use her cane. She was quite unsteady, but made it. I was always only inches away. At the grocers, I made mom wheel the cart. She did so with great ease. 

See how easy it would be if you used a walker, mom?

I know. I always use a walker. (Mom has steadfastly refuses to use a walker. She doesn’t even use her cane. She carries it, but it rarely hits the ground!)

Mom, you have never used a walker in your life.

I know. I do. (There’s logic in there somewhere.) 

As we leave the store, Miss Queen Bee asked if I would drive the car up to the door of the market.

No way, mom. You need the exercise. I deliberately parked away from the entrance to give you the chance to walk outside.

 

Later when we returned home—where mom has lived for more than a year, she asked, Is this your house?

Yes, it is mom. It’s yours, too. You live here with me.

Oh, it’s nice. What a nice place you have.

Well, this is the kitchen where you have your breakfast every morning.

Oh, I know.

Do you want to go to your room to watch television?

This is nice, Sandy. Where do I go?

You go back there.

Oh yeah.

I guess this will never be mom’s home. Her heart is still in New Jersey. She asks, as we drive, are we still in Pennsylvania. And I assure her each time,

Yes, we are.

This is nice! How do they keep it so clean?

 

 

Monday, August 11, 2014

Nice day yesterday. Had company, but mom wasn’t terribly interested until they had been here a few hours. I finally coaxed her out onto the porch, where she greeted Cheryl as she usually does: I haven’t seen you in so long. How have you been?

It’s one of those all-purpose greetings that serves those with bad/no memories well. But it sufficed. Mom sat next to Cheryl, smiled a lot—not hearing well, and had a good meal. 

I read this morning how a physician had family and friends called his mother on her birthday. She had been failing, but the calls seemed to have an ameliorative effect on her. The woman perked up and found strength. So I have decided to have a Mom Day and invite some family members to call her and say hello. Of course, her birthday in December is a natural day for such an endeavor, but I don’t want to wait that long. I will be sure to include Ann, mom’s former caregiver, and hope she can get to a phone between caregiving on her current job. Mom might not know who everyone is, but she will at least have had several calls and heard several different voices all in the same day. Changes of scenery—even if only from bedroom to porch, voices of friends and family—even if you aren’t sure who they are, can have a huge positive effect. Am hoping this will work and break up mom’s day. Trick is to find such a day. I need to be available at the phones, too, and this is one busy month for me. Well, onward and onward (at mom’s age, there is very little upward movement).

 

 

Saturday, August 9. 2014

Am sitting here listening to the fireworks from the ballpark not too far away. You can see the higher flares from my office window.

Am beat tonight. After the usual walk with the pups and Aunt Betty and accompanying mom to the bathroom at 0700, I drove off to the farm, where I met with the docents. We will be leading tours through the farmhouse next weekend and the weekend after that for the Dreibelbis family reunion and the third annual farm festival, respectively. I put the festival together single-handedly this year. The family had a wedding, which I also worked at. Quite a bit of fun. But they were too distracted to work on the festival. I contacted most of the vendors from last year and a few others, too. Will be a good show.

The docents and I walked through the farmhouse and arranged a schedule. I think we will be in good shape. Sent everybody the history notes. There are enough of us this year to allow potty and snack breaks and to permit visits to the alpacas and the angora rabbit. I need to purchase more lemon curd and hope to buy some handmade notepaper. And a new vendor has designed redware plates featuring the farmhouse! I need to purchase some in advance to sell at the reunion! (Someone out there, remind me!)

Received a text message while I was at the farm. Nancy had written that Eric had had a third stroke. Turned out later that it might have been a seizure. He did recover quickly, but had lost his ability to talk immediately afterward. Nancy’s daughter finally agreed to pay for his journey home on a Medevac flight. Nancy needs to be home to see her dogs and Eric finally get comfortable again. She’s been living in a hotel for 3 weeks now. There are bills to pay and there will be hell to pay if she doesn’t get back soon. Unfortunately, some pesky parts of life just keep trudging on.

Mom was pretty quiet today. She took her lunch in the kitchen this time. She often takes it in front of the television. Sometimes we have lunch on the back porch, too, my favorite place. Mom needs a change of scenery from time to time.

Been receiving loads of phone calls from nurses for this new editing/management job. I owe Anne big time. Seems as though all of her students are on the alert. We are in great shape, but still need nurses with pediatric experience. Might have to put that course off for a bit until we identify more reviewers.

Company tomorrow! Bob and Cheryl. Have polished the living room floor, cleaned the porch, oiled porch furniture, and readied my menu. Made several trips to market. Glad mom is in bed early. I am too tired to do anything else.

No more fireworks! We are down for the night.

Thursday, August 7, 2014

 

Yesterday was a day I do not care to repeat. Working on a new assignment, well, possibly. First conference call, I sought clarification on my role. It’s not a huge assignment (5 courses to review), but the company that hired me also hired a nurse, whom they consider the editor. Her credentials say she is an editor, but she is not in the publishing sense of the word. And as I had done this job last year (20 courses from start to finish with 4 writers), I wondered why the overkill. Then I had a second conference call, during which the company that hired the company that hired me asked what my role would be. Of course, they knew me from last year and knew my capabilities. But this time, they were looking ONLY for a nurse with an MS to act as clinical editor. All other work would be done in house. Dilemma! I saw it and they saw it—i.e., the need for only one person to do this work; however, the one person they wanted (on paper) was not fully capable (in my estimation) to complete the assignment and all of its components without some serious guidance.

So I am prepared to work in the background. But here again, qualifications are in question. Who is more qualified to edit the courses: the nurse with an MSN who is not an editor or the editor who has done clinical editing for many years. I worked for Excerpta Medica for 10 years straight, getting job after job and doing an excellent job in the process. But then their requirements changed: They would only work with PhDs. All worked out in the end. The PhDs didn’t know squat about editing or writing, and I got to fix up their work.

For the current job (sort of described above), I was supposed to identify senior medical experts (SMEs) to review the courses for the MSN they hired to review their work. Found some wonderful physician assistants, but the client only wants nurse practitioners or practicing nurses with MSNs. Back to the drawing board.

Anyhow, I thought I was out of a job on two accounts: from the point of view of the people who hired me (after the first conference call) and the point of view of the people who hired them (after the second conference call). It was getting tiring and wearing thin.

Then I started thinking about the job I really have: taking care of my mother. Of course I need to continue to work to keep the roof over our heads, but I also need to do my primary work: care for the people and animals under this roof. Oops, mom just called me. Lost my train of thought. [Wait a minute…] Oh, here it is again: Sometimes taking care of them is tiring and wears thin, too. But since I started writing this morning, the pups have been out, Val only barked once, and mom has been to the bathroom once and called me once.

It is still not 0700. I am waiting for Aunt Betty, whereon we will begin the day officially with our walk. I will then feed the pups, get mom’s breakfast ready, make my own breakfast, wash the dishes, take a shower, and do what else is put before me to do work-wise (see Day-Timer). Today, I am also getting a haircut in Coventry, leaving mom once again to Rob, and then picking up our organic food order. Been a busy week: I was gone all day Monday to visit Nancy and Eric (who is now blessedly in rehab), gone on Tuesday to the hospital in Pottstown and then back again to Pottstown for dinner with a client, and gone yesterday morning to the car dealership, where I spent a good chunk of money once again on my aging but beloved “Greta Carbo.” Tomorrow, it’s back to the chiropractor for mom. On Saturday, I will be at the farm, taking new and returning docents through their paces for the reunion next weekend and the farm festival the following weekend. My life is not for the faint of heart.

Mom is up now. Well, she has been up several times already. But I have showered her and changed her yet again. And I think I have reached a turning point! Finally! She was cleaning the mirror in the bathroom with a dirty tissue as usual. And instead of scolding her and pulling the dirty tissue out of her hand, I said I would help her finish cleaning it. I used a clean paper towel and applied vinegar water, while she held the mirror in place. I then thanked her for helping me. Seems like a small, more humane thing to do, but it was a giant step for me. You see, I always attempted to be as clean as my mother was. She was always cleaning and organizing something, somewhere. And her dementia undid most of that. She still organizes, but she is often unaware that her nightgown or the waistband of her pants is smudged with feces. My response to this terrible change in her was to be distressed and curt. This morning when she demanded to wear the same underpants, I explained that she wouldn’t want to wear soiled clothing. She seemed to understand, but there is no telling. At least not from her. I need to watch my responses. Trouble is, when a client is on the phone and Val is barking while the kid across the street is skateboarding off his latest hangover, I lose it.

Yesterday when it looked as though I might lose this job, I was awakened to realize that the most important job I have is to take care of my mother humanely. Of course, for the most part I do. She is clean and well fed and comfortable. We cater to her every need. She sits like a queen bee calling for tissues, juice, cookies, or something to eat. That pretty much sums up her needs. I find it most challenging when she takes her core of trips to the bathroom: the group of four or five trips in as many minutes. Yet, I know it is important for her to void as often as possible—whether she realizes that she “went” or not—to avoid incontinence.

Mom is still kind, unlike the horrible man who shared Eric’s hospital room. Mom never shouts or yells out for anything, except to see if Rob or I am here or at least somewhere near. I felt for the son and daughter-in-law of that demented and demanding man. And I recognized anew how blessed I was. Things with mom could be ten times worse. But she is now a part of my life, for better or worse. I hope to continue to rise to the occasion and be kinder to mom in turn. There are times when her demands or her messes will get to me, but above all, I must respond in a way that will maintain mom’s dignity or what’s left of it.

And now, a dose of current reality: much cleaning to do. We missed the soiled clothing yesterday. Man, I am tired already. Load in the wash. Cleaning up poop again. I wish my water bill were not so high, but this is life now. Gas and Electric are also increasing tremendously. I wonder how I will continue, but I am not alone. None of us is. And fortunately, I am not alone in taking care of mom. Rob also plays an integral part in her care. We are both doing our best.

Sunday, August 3, 2014

Mom went to bed extra early yesterday: 7:00 pm. I was remorseful, thinking maybe she was upset because of the fuss I made over the mess she made of herself and the bathroom. She was there while I cleaned and cleaned. And on some level, I think she knows she is no longer capable of taking care of things properly. I am not sure about this, of course, but I cannot help think that the vestiges of this woman that peek through from time to time also collect information and process it on some level. Some primitive, primary level. She knows. She knows she has failed. She knows she can no longer do what she did before. But she cannot do anything about it. I think at times she becomes disheartened when she realizes she is no longer capable of, well, doing anything on her own.

I briefly watched an historic reenactment on television on the execution of William Wallace (Scotland, 1305). He was murdered and quartered, and his wife was hung in a cage outside, where she was publicly humiliated until she died—which I hope was blessedly quickly. I could not watch the rest of the program. Too grueling. And I wonder how grueling it is for mom to “watch” her life and be unable to do what she could always do before. She still asks me each time to close the bathroom door while she is in there. So I am mindul and respectful of her modesty. As she already threw away the soiled diaper by the time I showed up, I know she was aware of her “mistake” and most likely dismayed by it. Breaks my heart and should give me pause not to clean up so vigorously while she is still in the bathroom. It teaches nothing. It only disheartens.

Later—

After a lovely session at Hearthstone, where Mike and I lead the community in prayer and in song on the first Sunday of each month, I returned home determined to finish cooking the foods I picked up at the Rodale gardens. Can’t waste organic goodies. And I also needed to grill the bratwurst I defrosted for some mindless reason.

First thing was to deal with the bratwursts. Five of them from The German Butcher. Handmade, of course. The plan was to grill them. But the roofers had dismantled my grill and I had to reattach it to the house gas. It took me a while to do it, but two desperate phone calls to friends later and with some muscle, I did it—all the while it rained. I was determined. Nothing could stop me. Not even my mother calling, Sandy! I have to go to the bathroom. Nothing, not even Valentino worrying at the growth on Lucy’s back. It went something like this:

Sandy! What are you doing?

I am trying to fix the grill. Can you wait?

No, I can’t. I have to go.

Sheesh!

[Telephone rings]

Hello, Betty. What’s up? [I take the phone with me into the bathroom.]

I have an idea about how to get Valentino to stop licking Lucy’s growth.

Oh? Val, stop it. Stop it now! No! No! No!

What if we put gauze on it.

Won’t stay. Can’t tape anything. Too much hair. Mom, don’t touch that. It’s dirty.

Well, I also have these gauze stretchy things that you can put over wounds. Let me see if I can find one. I’ll be right over.

Mom you need a new diaper. Wait here.

Eventually I went out again and fiddled with the grill, growing more and more determined to get it working again. I refused to sacrifice perfectly good brats for a nonworking grill! I opened the door to the bottom of the grill where the propane tank usually sits. Mine being attached to the house gas is usually empty, with the exception of a few grill utensils and the mat on which they sat. But, I was in for yet another surprise. We had had a visitor—either a mouse or a chipmunk. Not a pleasant sight. I salvaged with I could. All stainless pieces made it into the dishwasher for a very hot bath. The rest was pitched. Back to the grill. Strength was what was called for! My anger was now peaking, if mom calls me once more or if Val goes after Lucy’s back, it won’t be pretty.

Sandy!

WHAT!!!!!!! I AM FIXING THE GRILL!
Sandy! Where are you?

JUST A MINUTE. I AM WORKING ON SOMETHING! VAL, LEAVE LUCY ALONE, DAMMIT!

I have to go to the bathroom again.

JUST A DAMNED MINUTE!

[After the ablutions] Will you sleep with me?

NO!

Then tell Rose to sleep with me. Where is she?

SHE’S IN A DAMNED NURSING HOME!

No she isn’t.

YES SHE IS!

Well, who put here there? She should be here with me.

THAT’S ALL I NEED. YOUR DEMANDING SISTER! I’D SOONER KILL MYSELF OR HER!

This was not a perfect day. No siree. Not after church. Not after an hour of prayer at Hearthstone. No resolve in the world could have stopped me from shouting in anger.

Eventually, however, I got to work in the kitchen. I put together an organic Swiss chard soup for Rob and made a bratwurst stew, half of which I shared with Barb and Jerry. Pups have now been walked. Kitchen is cleaned. Mom is in bed. And I am beat! I treated myself to a lemon coconut water. Tomorrow, I will try a blueberry/spinach/coconut water breakfast drink (grâce à Barb). At least the blueberries sound appetizing. But I did buy a blueberry kefir at the Giant. A happier substitute perhaps.

Am looking forward to a good night’s sleep and to waking to a new dawn, a new day, a new life for me. Nina Simone, take it away!!!!!!!!