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!!!!!!!!

 

Saturday, August 2, 2014

I have said many times that I don’t want to live as long as my mother has. For one, there will be no one to look after me. Two, I don’t want to burden anyone.

My wish will probably come true. Living like this is hell already. Lucia, my 15-year-old pup, had an accident in the kitchen. Fortunately, it wasn’t on a rug or carpet and was easy to clean. No real harm done. But each morning, I walk carefully in the bedroom, lest I step on something I had not previously noticed. 

I was tired and went upstairs to “veg out” in front of the TV for a while. Rob came in later and announced that mom was in the bathroom. I ran downstairs to find her back in her clothing and wiping her hands on the towel we leave for her. She had thrown away her diaper. Apparently it was a mess. The towel she was drying her hands on was also a mess. Her clothes were a mess. The toilet flusher was a mess. The entire role of toilet paper had to be pitched. I put her in the shower, to her great dismay, and washed her till she was clean. I then cleaned the bathroom within an inch of its life, rinsed clothing and towels, and put them in the washer. I even cleaned the handle of her cane. My hands are dry from all the disinfectants. But mom is clean and back in her room watching television. And I am tired. Very tired.

Rob just came in and said he washed the bathroom floor. Good man. I just couldn’t get to it. Am hoping mom and Lucia will relax for the rest of the night. Need to buy another box of exam gloves. It’s all the mode in this household.

 

 

Friday, August 1, 2014

I think I am getting over my allergy stupor. All the dust from the roofers, chimney repair, and gutter installers, plus the mold from all the rain just got to me. Today, even though more rain is pending, I feel a bit more human and must less like curling up in bed for a week. Still, I slog through. Mom is slated to see the chiropractor again today. She’ll protest, as is her wont. But she won’t have a choice.

She is badly constipated at the moment, but refuses to drink water. As she sat on the toilet for the third time in 10 minutes this morning, I told her that she needed to drink at least 6 glasses of water a day:

I’ll try to drink some water.

But mom, you’d have to drink the entire glass.

OK, I will. But then don’t fill it up.

Sigh!

 

Later—

Second visit to the chiropractor today. While mom was in the backseat, she loaded up on tissues and nearly emptied the tissue box I keep in the car. But I emptied her pockets and retrieved them all.

 

While she was sitting with the TENS unit attached, she kept up this “conversation”:

Oh I like the color of those curtains. It’s blue, isn’t it.

Yes, it’s very nice, mom.

I wonder where they bought them.

At the store, I’m sure.

Where’s that girl? Where did she go?

She is back in her office. You have to sit here for another 20 minutes.

Where do you think she went?

I don’t know.

Well, how long do I have to sit here?

For 20 minutes.
Why?

You have the TENS unit attached to your back to help relax it.

There’s nothing wrong with my back. Where’s Rob? I haven’t seen him all day.

Well, he fed you breakfast this morning and walked you to the car.

Oh yeah. When did I last see him?

This morning.

Oh yeah.

Is his brother coming to visit?

No mom. He just left.

Oh yeah. So where’s Rob?

At home.

I haven’t seen him for a while. He’s a good man.

Yes he is and you saw him this morning.

I like those curtains. That’s blue isn’t it.

They’re very nice. Where’s that girl?

She’s in her office.

So where’s Rob. I haven’t seen him for a while…

 

 

Thursday, July 31, 2014 

Roofing day was interesting and a horror all wrapped up into one. Val was beside himself, mainly because while the roofers were making so much noise, the boy across the street decided to skateboard in front of the house. Of course the gates were opened, and naturally, Val got out, ran across the street, and ran around like a maniac. I tried grabbing his tail and one point and fell onto the grass. An easy fall, but still. The kid with the skateboard just shrugged his shoulders. If he ever gets out of his marijuana and liquor stupor, I wonder what he’ll decide to do with his life. I wonder if he’ll be able to do anything at all with that’s left of his brain. Wonder if he’ll ever get a job.

Mom worked for 75 years before dad made her quit. The first bombing at the WTC was the final straw. Dad said, no more. He panicked that day and tried to drive into NYC, but no one was going in or coming out easily. Mom wondered what she would do with her life if she couldn’t work. I know the feeling. I want to be as productive as possible to the end.

Between the time the roof was put up and now, I have been washing windows and windowsills, vacuuming, dusting, washing floors and furniture, trimming damaged plants and shrubs, and feeding them. Been exhausting, but I feel as though the house is as clean as it can be. Still, there is no perfection on earth. The roof “dust” keeps falling. And today, the new gutters were installed. Looks great. I even went over to the lighting store to choose news lights for the front entrance. I insisted on something NOT made in China, and was directed to the Hanover display, where I chose a lovely piece. Will take 6 weeks, but the wait is always worth it. Each piece is cast to order. You can choose from a variety of finishes and glass. I had originally set my sights on something larger and more expensive, but I thought better of it—mostly because I thought it would be too large for the site. I wound up saving more than $400.00! Great decision. And the one I chose is quite lovely. I wish mom could appreciate it.

On the way back from the lighting store, I began to cry. I prayed for kindness to run through my bones as I work with and clean mom. I prayed for patience. Then I realized that I have been mostly motivated by anger—anger at my mother no longer being my mother. This woman who cannot replace the cap on the toothpaste or even open a tube of toothpaste is not the woman who raised me. This woman who insists that her diapers are clean when they are soiled is definitely not my mother. This woman who cannot replace the toothbrush cover and who does not understand that the stick part of the toothbrush goes through the little hole on the cover is not the woman I knew and grew up with.

What is happening is that I have small glimpses of my mother—painful teasers—throughout the day, but then she is stolen anew from me. Stolen away—by a thief called Dementia. A hateful bastard of a disorder, who took away remembrances of all things bright and beautiful in my mother’s life. Mom is living in a void with a daughter who is in perpetual mourning for her, but who is lured back in tiny bits when slivers of mom’s memory arise like the Phoenix, only to confirm that the Phoenix is a myth. Dementia is as hateful a disorder as it is a heartbreaking one.

My mommy is gone. I am left with a shell of a woman who resembles my mother in small ways, but for whom real joy is gone and has been replaced with fear. Even stepping out into the garden grips her with horror—fear of falling, fear of being brought to someplace unknown, fear of being left there, anywhere, alone.

Tuesday, July 29, 2014 

The roofers are here. Betty and I took the pups for a walk. I fed them and then attempted to get Val into the car for the trip to the groomer. But he would have none of it. He needed to stay and protect us from the roofers! From the people making the noise and the mess on the roof. It took three of us to get him into the car, but we finally did it. And he is at the groomer now, pacing between sessions. Our groomer is keeping him longer today to help us out. Lucy is patiently wandering around. Mom is oblivious, but every now and again, she will say, I saw him. Someone is trying to get in. There he goes now.

They are roofers mom.

No, I saw them. See!

Yes, mom. Roofers.

Oh yeah.

Monday, July 28, 2014 

Every morning, I lie to my mother.

Sandy!

What mom?

What time is it?

It’s only 7:00 am. (It’s really 8 am, but I need more time at my desk.)

Wake me when it’s 9 o’clock.

Ok mom.

 

Sandy!

What mom?

What time is it?

It’s only 8:00 am. (By now, it’s 9:30 am. I still need more time and quiet. Bad enough I have to put up with Valentino barking.)

Wake me up when it’s 9 o’clock.

Too late for that mom. Guilt usually gets me around 10 o’clock. Then the ritual of taking her to the bathroom, changing her, combing her hair, and feeding her breakfast begins. Did I mention the many trips to the bathroom: Sandy, I’m just going to the bathroom—whereon I drop everything, don my nonlatex gloves, and wait for mom to do her thing. Mostly I wait while she tells me she cannot “go.” Then I clean the toilet, the sink, the faucets, the bathtub (where she grabs the edge), and the doorknobs, and make a pile of any towels she has touched during the night. Actually, this routing goes on continually, even through the night when I myself get up to use the facilities. I keep a container of Lysol wipes handy for every trip to the bathroom. At night, I turn on the light to inspect and clean.

 

My patience is wearing very, very thin these days. The rain and mold are taking their toll, and Mom and Valentino push me to the edge—he with his barking and mom with her frequent trips to the toilet. At least she is not totally incontinent. There are mistakes and accidents, but they are rare. Most of the time, she is blocked up. When we administer the MiraLax, the routine becomes more demanding.

 

Mom’s cereal bowl is already full, but we are out of milk. I am hoping Rob has another bottle in the basement refrigerator. Otherwise, I will have to trot on over to Hershey Harvest for a bottle of raw milk.

Roofers are due tomorrow. So is my brother, who will take us out on one of his bimonthly luncheons. Weather should be good (otherwise, I won’t have to worry about the roofers). He has just returned from a trip abroad with his daughters and a friend to visit family and spend time away. He will tell us very little, except maybe how family was. One family member already asked me to “friend” him on Facebook. I did. Unfortunately, I rarely post anything on Facebook and rarely go on even to check out what others are sending. It’s too public for my taste.

Mom is in the bathroom now. She made it there herself and is brushing her teeth—a 5-minute process. She just brushes and brushes and brushes. I think she forgets how long she has spent at the sink. But she is good now about turning the water off until she needs it. I reminded her only once, and she remembered. It was part of her modus operandi—to be conscious of waste: Turn that light out. You don’t need it. Or Close that door. You’re letting the hot air in. Some things never change.

Later—

Mom had her first session at the chiropractor today. She had no clue what was going on. Took her there because of her low back and knee pain. Turns out she has mild scoliosis—par for the course at her age. Going to return for a second visit on Friday.

As we sat there, she kept insisting upon service.

Where is she? Tell her we have someplace to go. I don’t want to sit here all day.

This, while she was attached to the TENS unit. When mom finally got on the adjustment table, she said, What are you doing? There were also a few ouches, but nothing worse than that.

While we were there, I had Dr. B. adjust my neck. Feels a million percent better. Turns out I should not sleep with my hand under my head. Who knew? He said it would compromise my shoulder and result in shoulder pain, extending the period during which my shoulder had to work. Again: Who knew?

We took a trip over to the Shoppes at Wyomissing for a turn at a new burger joint. Really good burgers and fries. A rare indulgence. Mom, however, had her turn at spitting up watery mucus. I think she suffers from allergies. It’s a bit more green here than it was in Bayonne.

She sat out on the porch for a while, totally unaware of where she was. Later she asked if I had any clothes she could change into. I told her that her clothes were in her room.

Oh I didn’t know my clothes were here.

Mom, do you know where you are?

As we walked into the kitchen, she said that she had been here before. But she clearly did not recognize it as the kitchen where she eats breakfast and does her word puzzles for hours every day. Oh well.

Maybe the porch looked different. I had the furniture covered with drop cloths in preparation for the roofers tomorrow. Much dust and mess expected. But they will be done in a day. Sure hope it isn’t too hot. I would hate to see those men scurrying up there in horrible heat. But the high is forecast as 77 degrees and mostly sunny. Not bad. I only pray they do not uncover any bad wood. That will be an unwelcome finding. Mom, of course, won’t hear a thing. But she might notice the men on the lawn and the trucks out front. Her son will be here tomorrow to take her to lunch. And Valentino will be at the groomer. Oh happy day.

 

 

Saturday, July 26, 2014 

Day of the wedding. Fortunately it is nearby. Rob and I will come back after the church and before the reception to let the pups out. Mia will be here to see to mom. Fortunately, the roofers will not be here. They were slated to come today to replace the roof, but it’s raining. Blessedly. Not that we need more rain, but we don’t need roofers here opening gates to the yard while the dogs are roaming about.

Time to get ready. Betty and I have walked the pups. I fed them. Am now feeding myself. Soon it will be time to feed mom and bathe her and then scramble to get ourselves ready. Tempus fugit, or as my friend Ada would have said, “Tempus is fidgeting.”