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.”

 

Friday, July 25, 2014 

If I myself am not dead at the end of this day, it is likely that I will be imprisoned. I am exhausted. Awoke at 3:45. Then Betty called at 7:00 to walk the pups. I fed them and myself, and then the show began. The chimney repairmen showed up. They are here to preempt the roofers, who will begin tomorrow. The check-writing hand is already quivering. Mom is in the kitchen beating the hell out of her Cheerios. Valentino is licking the growth on Lucia’s back, making it bleed. Poor thing means well, but I have to keep him away from it. Clients from one company have noted that I should be billing to three different sections of the company, depending on the job. Had to re-bill this morning and delete several invoices.

Meanwhile, dust is pouring onto the porch and the upstairs bedroom by the chimney. I draped a cloth over the window A/C to prevent the dust from piling up and moved the night table and lamp and books away from the window. (You see, we have central A/C downstairs, but not upstairs.) I am tired and cranky and I have a job to get out. I also have to drive mom to the hairdresser at 1:00, and then I am off to an optometry appointment.

In the meantime, there is nowhere to go to escape the noise or mom’s incessant questions. 

What time did you get up Rob?

9:30

Who’s that, Rob? (noticing someone in the yard)

They are working on the chimney.

They are repairing it.

I know. (That’s highly unlikely.) I was so shocked when I saw them. (Mom is always shocked!)

What time did you get up Rob?

9:30.

Where’s Sandy?

In her office.

Oh yeah.

Did she have breakfast?

Did Sandy have her breakfast Rob?

 

And so it goes, on and on and on. I am in a stupor. Everything is getting dusty. They’ll do a great job, but the noise and the dust comes at an inopportune time. Then again, when is dust and noise ever opportune? The masons found a brick mighty close to what we already have. The chimney will finally look decent. Was a serious eyesore before. They are taking care not to destry the plants, but then the rain will take care of the dust and some of the plants out front are already showing signs of late summer wear. Is it late summer already? My Quickfire hydrangeas seem to think so! Might have an early fall. All else equal, that alone is depressing. But then, the fall is a nice time of year, too. My only sadness comes from missing the extended daylight.

Are they still up there Rob?

Yes

That’s long.

They will be there for a while.

Did you have your breakfast Rob?
Yes

Where’s Sandy Rob?

In her office.

This should be a very, very long day!

 

 

Thursday, July 23, 2014 

Been getting up very early—around 5:30 or so. It’s not the stormy weather. Maybe it’s just anticipation. Betty will call at 7:00 and the kids are eager to go out.

Mom has been up already of course, but back in bed again. I changed her and have already cleaned the bathroom twice. I am now listening to gurgles coming from the tummy of one of the pups. Getting ready for the pickup brigade as we take our walk in a bit. Poop bags at the ready.

Spent some time with Barb yesterday. Her husband is doing well now. The ablation worked and his afib has stopped. I brought over a bottle of magnesium for him to take and a carton of lemon coconut water—very high in potassium. He needs to balance and charge his cations. Funny thing was, after I told Barb about his need for both elements, she noticed that after the hospital gave him potassium, they also gave IV magnesium. All this trouble for some potassium and magnesium.

All is well here, except that mom has some back pain. Am going to call the chiropractor to see if she is a candidate for treatment. I doubt she will be able to get a regular adjustment, but I can call and discuss it with the doctor.

Nancy is in New Jersey now, at Eric’s side. He was found in his car 3 hours after he stroked. Fortunately, he can talk, but he cannot find the right words and his memory is impaired. We won’t know the extent of the damage, but today, he will undergo an angiography. Also fortunately, her daughters are with her now. This is all quite unbelievable, as Eric was the tennis player, the fisherman. He was always on the run. Always doing something, including traveling back and forth between his home and NJ for his latest job. Unfortunately, it was hypertension got him in the end. Uncontrolled for many years. An intelligent man gave up his independence and health for stubbornness. He had refused to see doctors for many years, and now, he and his family will pay the price.

Mom doesn’t like going to doctors, but at this stage of the game, she has no choice!

 

Tuesday, July 22, 2014

I am back home again. Spent a delightful day down at the Jersey shore and three nights with college friends at a lovely lakeside home. Mom was at Rittenhouse, which she described as “crowded.” I think she was expecting to go to a private home, but I know she received the best care. She said there were no activities—well, at least that she remembers. I called yesterday morning before I left the lake and spoke with her. She said she was at “Rob’s house” and wondered if I would come visit. I said that I would. Mom didn’t remember that I live her, too, and she often forgets who does live here. Sometimes she will ask where “they” are. Rob once asked her who “they” were, and she merely said, “You know—the others.” Not much of a lead.

Anyhow, back to work and chores. Back to my pups and my own bed. No lake view from my bedroom window, but a beautiful welcome home from my Quickfire hydrangeas, which are already turning pink. They bloom early and prolifically all summer in a brilliant white, looking much like a bridal bouquet. They then turn pink to shades of light red in the fall. Quite a show. I am glad to be home and happy to have mom here, too—even though she is beating up her Cheerios in the kitchen. I sometimes tell her to stop playing with her food and eat! (I remember mom telling me that when I was a child. It’s her turn to hear it now.)

 

 

Friday, July 18, 2014

 

Mom has been at Rittenhouse since Wednesday. I wrote her a letter explaining when I would be back to pick her up and listed the days so she could check them off—with the help of the staff. I spent a glorious day and night at the shore with friends and their small children. The little boy is uncanny. So gregarious. He makes friends with strangers on the beach and approaches adults in their garden and admires their herbs (and receives them later as gifts). He’s a little man in a boy suit. His sister is adorable. Absolutely adorable.

While I was there, I took a book off the shelf of the home they rented. It was by Jon Katz about his experiences with his two regal yellow labs and a wily and willful Border Collie. Fabulous story. Couldn’t put the book down, took it home and loaned it to a neighbor, and will return it to the shore house as soon as she has read it. But I wound up feeling guilty. Here I am about to leave yet again. Both pups are unusually subdued. The trips to the basement to do laundry and pack the car, all a clear signal of my business. I can hear them now: She’s leaving us again. She didn’t unpack. Mom is re-packing the car! Of course, daddy and Aunt Betty are at their beck and call. Still, after reading this book, I wonder, did I/do I do everything for them that I possibly can? I attempted to interest Val in agility, but it didn’t work out. He was possibly too old. After an initial show, he stopped—completely. Wanted no part of it; however, he liked the trip there and that it was just the two of us. Oh well.

Am off to northern PA today to visit college friends—our third annual reunion. I have work to do, but I will get to it by Wednesday. Still, the girls are thinking of staying until Monday morning, which would help us miss the awful weekend traffic, but would put me a little behind on work. And the pups and mom. The pups want me back as soon as possible. Mom is expecting me back on Sunday. I will work things out. This is it—vacation-wise. I get to drive 2.5 hours each way (same distance from my house to the shore and to northern PA) and back again.

My friends down the shore asked if I would visit mom today. Heck no. She would only insist upon coming home and become anxious all over again. But it’s nice not having to answer to Sandy! It’s nice not having to bath her and follow her to the toilet. Rob and I joked last night:

Where’s the black dog?

Rob, what time is it? I don’t understand. (She gets confused when the clock is on timer.)

Is that cat still up there? How can he stay up there so long?

Ro-ob! Can you get me something to drink?

As much as she is demanding at this age, we miss her banter—sort of. But we relish the quiet, the solitude. Even the dogs are quiet. I worry that Val is not well. How could he let a motorcycle go by alerting me? He is on my office floor now. I have to go to market to pick up the smoked pork chops I promised to bring, but I don’t want to leave him. Coming back from market will only lead to another let down. I will have to leave again for the weekend. I almost never want to go away. I belong with my pups and they belong with me. I worry that I am losing days, hours, minutes without them. Their lives are too short. But mom is away, and I am going to visit my dear friends. We’ll play Mexican Train and dominos. We’ll boat and swim and drink wine and chat. I’ll bring the laptop, but I might not get to the work. Time with friends is precious, too.