Friday, March 28, 2014 

Mom did not awaken me this morning. It was Lucy (aka, Lucia). She needed to go out quite early: 5:45 am. So I traipsed across the cold porch tiles and let her out with Valentino, of course, who would never be left behind. Mom did get up moments later. I assisted her in the bathroom and here I am. Val is in the living room, sleeping on his couch. Lucy is in the hallway, guarding the entrance to my office—well, maybe just sleeping.

Early morning can be so good. No demands on my time. At least for now. Oh, Lucy looked in at my office door. She might have to go out again. Yes, I hear the pitter patter of paws on the kitchen floor. Here we go!

Temperature is a balmy 38 degrees. Porch tiles are around 40 degrees. Not especially toasty on bare feet. Where are my slippers when I need them?

Thursday, March 27, 2014

Didn’t sleep much at all last night. Awoke nearly ever 2 hours, until I finally figured out why: My cell phone was beeping. A missed call! My phone was in the living room, where poor Valentino was trying to sleep. He, too, is exhausted today. It apparently awakened him as it did me. Val sleeps on the Chippendale couch, when he isn’t upstairs on one of the many dog beds (there are four in the house and one on the porch). Rob said that if Val were in Westminster, four little boys would have to carry him in, as he would sit draped on his couch, head against his plush pillow. I even had the 2-dog window seat cushion reupholstered for him. It’s a lovely pattern in a fabric called “Kryptonite,” made to withstand 10,000 scratches by a standard poodle—well, maybe!

Mom is not crazy about the dogs. She refers to them mainly as the white dog and the black dog. Although she remarks kindly about Lucia when Lucia is sleeping, Mom often shouts, Go away!, when she gets too near. I remember a few of the dogs we had when I was growing up. We never kept them more than a few weeks. Dad loved dogs; mom hated them. He put one of them in the tub one day and had to run back to the “store”—as we called it—to see to a customer. Dad was in the furniture business. Mom screamed when she found the dog and started throwing things at it. Mind you, this was a puppy. Cutest little thing ever. There was no pleasing my mother on this score—ever! And so, her particular end-of-life brand of hell or heaven is to live with two standard poodles. She does remark, however, that they are so clean: How do you keep your house so clean with two dogs. I don’t understand how you do it. And cleanliness is or used to be one of her greatest concerns. My brother, influenced as he was by mom’s fastidiousness, used to have her clean his chair at every restaurant before he would sit down. A regular Niles Crane, except that at least Niles cleaned his own chair!

We had had a maid for a very brief period of time. Lovely woman, as I recall. Her name was Page, like in a book. That’s what she said to me when I asked her name. Mom didn’t like Page very much. She preferred to do her own housecleaning. Maybe it gave her self-worth. At any rate, Page didn’t last long. She apparently mopped the kitchen floor without changing the water halfway through.

And now, mom balks when I shower her too often and will not allow me to wash her hair more than once every two weeks. But I am quick with the handheld shower and mom has little choice but to cover her ears as I administer the horrid shampoo.

How often do you wash your hair?

Every day, mom.

Oh that’s no good. Any hairdresser will tell you that’s no good for your hair. You should never wash your hair more than once a month!

I’d look like hell and smell even worse if I did that.

Oh no. They say: Never wash your hair more than once a month.

We do what we must.

Tuesday, March 25, 2014 

Bad night. Maybe 3 hours of sleep. Mom called several times and then I was awakened by a phantom call. Happens. I heard mom call, went downstairs, saw mom sleeping, and heard her snoring. Minutes later, after I went back upstairs, she did awaken. So I followed her into the bathroom and helped her out. The phantom calls bother me most. I wonder if when I am in my dotage, I will be awakened by phantom calls or hear them throughout the day. Best not to dwell on what might be and manage today instead.

Bitter cold again. Walked the pups with Aunt Betty, and at least they’re settled. Waiting for mom to awaken. Waiting to hear, Sandy! The dreaded sound that I welcome. She’s awake. She’s well. (I remember Ann telling me how she would go into the bedroom with trepidation to see if Rose and mom were alive.) Another day begins. Another round of bathroom visits, meals prepared, juice delivered, tissues given, clothing laundered—but she is well. How can I feel so ambivalent about hearing my own name called? At least she knows my name now—a big change from when mom first moved here. She is still confused, but at least has some bearings. When I am in my office—right behind her own room—she has no idea where I am; although, she does sometimes venture in to tell me she is going to the bathroom. If I had all the money in the world, I would put in a second bathroom. Waterproofing the basement and replacing the new hot water heater temporarily precludes any dreams of bigger and more dramatic updates. Still, we manage.

Dogs are quiet. Mom is still asleep. I will drink my tea in peace, if not quickly.

Later—

Well, that was five times mom was up to go to the bathroom in as many minutes. But I have initiated a new policy: She must stay there for at least 5 minutes and attempt to finish. Each time she declares she is finished, this is not the case. And each time, mom is surprised that she actually had to “go” more than she thought. Each evacuation is a unexpected. But I am learning and she is learning—maybe, maybe not.

Er, make that six trips to the bathroom. She simply does not understand staying in the bathroom until she has finished. This necessitates donning gloves, washing hands, washing sink and toilet over and over again. I should realize this will happen. But even though I do, I keep hoping I will have a minute’s peace. A minute to finish work uninterrupted. A minute without having to run my hands under water again. My nails are dried out. My hands are like prunes and are again rapidly. And no one else can use the one bathroom we have—at least not without washing it down again after mom has left—even though I supervise her bathroom visits when I am awake and usually working.

OK. OK. So who is one of my greatest teachers? My mother. I was so short-tempered last time, especially when she threw a poop-laden wad of paper in the toilet. I had already taken the toilet paper out of the bathroom, bade her to stay there until she was finally finished, but she had in her tiny hand the ubiquitous pieces of tissue—always a handful of tissues—and used them to wipe herself incorrectly. So into the shower she went. I had no choice. Cannot chance her sleeping all night seriously soiled. She didn’t want the shower, but I put on the heat lamp and showered her quickly.

When I brought her back into the bedroom, she said, I am so sorry for you. I think of you often and how you do so much for people. It wasn’t so much for herself, but for others she spoke. I was chastised, justifiably rebuked with kind words from my senile mother. I am blessed that my mother has the presence of mind still to bring me out of myself.

And on the practical side: No more napkins for mom. She uses them to wipe herself and throws them down the toilet. My new toilet is good, but not good enough to withstand the wads of napkins and other paper goods my mother now hoards. Have already had to use the plunger. Be advised. Hide all paper goods as necessary and limit use to tissues.

Monday, March 24, 2014

Did I say something about spring being in the air? If I did, I was wrong. Temps still in the 20s. Cold walk this morning with the pups and Aunt Betty. And tomorrow, we are expecting yet another snowstorm. Oh well. It won’t be too bad. At least all of the snow and ice from previous storms are gone. How will my plants survive?

Mom has been having trouble with her bowels. Serious problems. I called the doctor this morning to discuss possible solutions. But we solved the week-long problem with more water. We have been giving her MiraLAX for a week now. That, plus a large glass of water (mom only drinks water out of desperation) seemed to clear the problem. But cleaning was a challenge. The caregiver we hired must have been challenged last night and of course was not privy to where I keep my cleaning solutions. Thus, the work this morning was a little extra heavy.

This morning, mom thinks she is in Secaucus and that Rob’s brother lives in Ohio. Just a few miles off. He lives in California. Mom asks Rob about his brother with some frequency. And sometimes she actually remembers that he lives in California. And the cat is still on the ceiling fan. Someday, she and Dr. Seuss will share cat stories in heaven! Oh well. We all have good days and bad days. (Just check my Lumosity scores!)

But mom is eating her daily Cheerios and drinking her coffee once again. I have an editing job to get out on Wednesday—so, it’s back to work for me!

Later—

You finally do get a good routine going: changing clothing, diapers/underwear, soaking hands and cutting fingernails to be sure they are clean, sterilizing nail clippers, washing toilets and bathroom floors again and again…

Betty related an incident her son shared about his little son Dylan. He was not feeling well and would not eat supper. Later he vomited in the windowsill, of all places. When David felt Dylan might want to go out to join the Boy Scouts on a hike, he asked Dylan how he felt. Dylan agreed to go, but had to be carried half the way. Still later in the car, David noticed a terrible odor. It happened that Dylan had soiled his clothing and was totally unaware of it on all levels. Seems to be what happens at both ends of the spectrum. Both parents and caregivers have to be experts at cleaning and sterilizing and knowing what products to use that will be easy on them and on others in the household. Disinfecting is essential when dealing with children and the elderly.

I prefer isopropyl alcohol (watch out, it’s highly flammable) and hydrogen peroxide (in which the nail clippers are now soaking, but it’s not good on all metals). Clorox, although excellent, is tough on the lungs and should be used sparingly. Lysol wipes are good, and I use them prodigiously.

Still Later—

Nurse finally called back. They recommended, of course, a suppository for mom and Preparation-H. Will find some OTC variety that I hope will do the trick. Been a horrible 2 weeks. And I am denying her the cookies she loves. Gotta watch the diet! Would give her detox tea, if she would drink it. But that is a problem. Mom isn’t much of a tea drinker. And detoxing only provides a mild cleansing under normal circumstances. Still, am sticking to organic vegetable soups and no meats for right now. Mom asked for a sandwhich, but bread is also out until this problem is sorted out.

Well, back to work. More anon!

Sunday, March 23, 2014

Mom has a new friend: Carol. Carol is a caregiver who comes by to sit with mom when Rob and I must both be out. Mom remembered her name last night—wonder of wonders. Carol must have made a good impression on her. Even more astounding is that she can hear Carol’s voice. Must be the timbre. Sometimes Rob and I must speak terribly loudly and slowly for mom to hear. Carol speaks quickly and softly. Could be that mom is merely trying to assume conversation—as she is unable to engage in conversation.

Long day today. We are having dinner with friends in New Jersey. Carol will be back to spend the day with mom and “Aunt” Betty will be here to see to the pups. It will be a busy household.

Last night, as we were walking back to the car from the concert hall, Rob laughed again about some lines I had related to him from Frasier. I make it a point to run downstairs and repeat something terribly funny that Frasier, Roz, Daphne, Niles, or Mr. Crane had said. We get more mileage out of those funny moments now than ever. Maybe it’s because we need the escape, the belly laugh, or the moments of freedom from the stresses of taking care of a once vibrant woman. I see now the importance of bringing in another soul to lighten the load, to help you get over the first call in the morning: Sandy! Maybe the call is not as desperate as it seems, but it is the call of a woman who needs to know that someone is there, preferably the person she is calling. If Rob goes to her, she invariably asks Where’s Sandy?

As many times as I hear my name called during the day, I am never prepared, never ready for whatever will face me. And yet, I dread the day I will not hear her call me ever again.

Later—

I learned something very important this week. Sometimes when I put food before my mother, she often complains that she is not hungry: I could never eat that. Last time this happened, I place a cup of hot vegetable soup on her table, left the room, and in minutes she picked up the bowl and devoured it. Did the same this morning. I could never eat that. I’m not hungry at all. Maybe later. So I left the bowl and told her to eat it when she got hungry. I turned around to do dishes and, again, within seconds this time, she picked up the spoon and began eating her soup (organic vegetable soup). I replenished her plate with cheese (Bella Vitrano from Monte Lauro) and crackers (Sesmark, Ancient Grains with amaranth, quinoa, millet, and sorghum). Few people eat as well.

We did, however, make the mistake of telling mom that we would be leaving for dinner at 3:30 pm. Since then, she has been admonishing us to get ready, get dressed. Rob said he finally understood why I am so neurotic—with a mother like this. Mom was far worse when I was younger. I remember my high school graduation day. Earlier in the day, I was the lead performer among Edward Goldman’s students at the YMCA, where I played the first movement of the Liszt Eb Concerto with the Bayonne Art Trio. After the performance, people rushed up to tell me how wonderful it was. But mom rushed me out: You have to get dressed for graduation. Graduation was in four hours. I was already dressed. But she rushed me home, away from the reception, away from the congratulations, away from my moment of whatever-it-was. This was my mother’s hallmark: getting ready hours in advance and standing in wait. I was never allowed to sit, especially when crinolines were in vogue. I had to stand with my hands away from the dress, lest I crush the many slips and crinolines beneath the dress. It was not an easy life. And mom is back to tell again and again how it must be. Yet, all this follows are horrible morning cleaning up poop from the bathroom floor and giving mom an early shower, hoping she will be fine until we get home from dinner. Blessedly Carol will be back. I hope she can handle mom without any serious mishaps.

Caregiving is no box of chocolates! But it has its little rewards, as when mom will eat a bowl of soup or has a good night’s sleep or has gained a pound or two.

Sunday, March 16, 2014

Val woke me up in the middle of the night. Didn’t sleep after that. He paced and I followed: in, out, porch, office, upstairs, downstairs, couch, kitchen, in, out, porch, office… Might have been the full moon, but of course I feared another seizure. He’s fine now and getting his beauty sleep. I am exhausted. Still cleaning mom, still urging her to push out the poop.

Well, I have determined that this is all a privilege and not a burden. If I don’t get sleep, so be it. But last night, I had Nancy’s latest verse to bear in mind (she sends me Biblical verses from time to time): “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9

The Lord was with me. I wasn’t fearful. I was just tired. Still am. But here we are. Lucy is breathing gently and sleeping on the office carpet. Val is sleeping on the office dog bed. Mom is in the kitchen and has eaten her cereal. And I have had my Ezekiel cereal and tea. What more could I want?

I had some bad dreams last night: severe storms on the way, an escaped goat, chickens being shot. And when I was awake, which was most of the time, I wondered when or if a nuclear warhead was going to touch down here in the United States dropped by the stolen Malaysian airliner. Living grows more intense, not less, as I age.

Rob likened mom and me to two scorpions in a bottle—battling all the time. She refuses to sit on the toilet and prefers to hold it in. Well, she has met her match in me. I give her water to drink and make her wait it out. Sometimes it works. Other times… But one must try. Frustrating.

Thursday, March 13, 2014 

Huge windstorm last night. Tough sleeping, but my new pillow is making me quite comfortable. Alas, Rob (and Betty’s husband, Charlie) had little sleep. The men are sensitive to such noise. Rob’s room can get far too noisy in a windstorm. He is trying to nap even now. 

Temps dropped precipitately last night. Quite cold. Below freezing to be sure, and the wind chills are horrible. I need to collect the garbage bins. 

Whoa! Received a return phone call from the Sisters of Saint Joseph of Chestnut Hill: Sister Margaret Mary Smith. She was two years behind me at Holy Family Academy. We exchanged stories about the sisters, her experience as a Novice, and the sisters who taught us. How I loved them. How I still love them. And we talked about mom and my turn as her keeper. 

Mom was in pretty bad shape this morning. Poop down her legs and on her clothing. I showered her, or tried, but I think she didn’t realize that she was pushing. Oh well, I kept cleaning, then made her sit on the toilet. It wasn’t easy. As I told Sr. Margaret Mary, you want your mother to be your mother. Still, it’s my turn, and I had better learn to do this caregiving gracefully and thankfully.

Wednesday, March 12, 2014

Chiropractic appointment early today. Needed to arouse mom early. She had apparently had a BM in the evening and left evidence in the bathroom. I walked the pups, fed the pups, cleaned the bathroom, had breakfast, prepared mom’s cereal bowl (now almost all unsweetened Cheerios—we titrated down the Honey Nut Cheerios they same way we do dog food changes), and got mom into the shower. Then off to the chiropractor and the supermarket. 

But alas, we are ready for the waterproofing crew to come on Saturday. Much of the “stuff” from the basement is now on the porch and some will be in the garage come Friday night. Then Jake will come in June to work on the basement shelving. 

Heard mom ask again, Where did Sandy go? Can’t really spend much time with her. Must work. And she cannot accompany me to stores and such. Would like to get her out on the porch again, now that it’s warming up. But the porch is too crowded with basement stuff. We look like hoarders. Am hoping Rob will move some of his boxes back into storage. He refuses to part with his papers from the F.S. era. That hateful man did not pay Rob for 9 months. Of course, why Rob continued to work for him is beyond me. F.S. is sick, but he apparently has no trouble finding new wives. 

Had a great night with my new pillow. Actually slept through the night and didn’t want to get up this morning. Oh, there goes mom with Rob behind, saying Use your cane. As my cousin Marje put it, it’s an air cane—rarely hits the floor and is of very little use. Mom is now in her bedroom, watching television. Have been putting on old TV programs such as “The Waltons,” “Andy Griffith,” and “Gilligan’s Island.” (Oh crap, I had to ask Rob for the name of that last show. At times, I think I need the curcumin as much as my mother does.)

 Well, back to work.

Tuesday, March 11, 2014 

Did not sleep well last night. Yesterday, a basement waterproofing company came by and gave us an estimate. I signed on. I knew all along we had no choice. Ever since I moved in, the spring thaw would bring small puddles and the cinderblock is showing limestone ash in some areas. Must do something now before it is too late. We signed on for work this Saturday, which means we have to move so much of the “stuff” to another place—the garage, the back porch. I kept imagining where things would go. I eventually fell asleep when Betty called to walk the pups, but I declined. I needed a few more minutes of sleep. 

Saw Barbara this morning. We are all planning to go to Barb Fisher’s funeral. Still a shock to all of us in the neighborhood. Making plans for Friday.

Mom awoke a few minutes ago. Nearly 10:00 am. I showered her and found myself in decent humor. Maybe it’s Swamiji’s red rock. It arrived yesterday from Arizona in thanks for editing I did on his latest book. It exudes some wonderful energy. Anyhow, when mom said That cat’s still up there, I agreed: Yep, he sure is. Might as well not fight the flow. Might as well not!

Sunday, March 9, 2014 

Betty called this morning. A little early, I thought. Forgot that the clocks were moved ahead. Awoke to find mom in the bathroom. Toilet filled with tissues and toilet paper. Quite a mess! Wasn’t about to fish it all out. Fortunately, it flushed. She had not washed her hands, so I counseled her. Then I will off to see to the pups. 

This morning, had to wash the Mutt Mats and dog bed covers. Lucy’s been leaking. Took an extra long walk this morning to be sure Lucy would finish her business outside. Met Bud and the Duke of Laurelee and Lois and Kirk. And I think that was Mr. George with a new little dachshund. Mr. George lost his wife some years ago and loves dogs. He often goes to shelters and walks them. But I think the little one we met today is his own. Nice to get out. Nice to breathe fresh air and clear the lungs. Nice to see the neighbors. I wish mom could get out. Wish mom could walk any distance at all. Wish mom knew where she was and remembered who I am, that her house was in New Jersey and that this is Pennsylvania, that it’s morning—not afternoon or evening, that Betty comes by every morning to walk the pups with me, that “the Black Dog” is Valentino and “the White Dog” is Lucia, that the television is in her room and there is none in the living room… 

Soon enough, mom will be able to sit on the porch and admire whatever flowers and shrubs survived the winter.