Monday, July 14, 2014 

As it turns out, mom did not go to the birthday party yesterday. She was still suffering from GI problems. I was changing her each time and showering her every other visit to the bathroom. My guess is that the pneumonia shot she received on Thursday had a devastating effect on her GI tract. At 2:00 am, we gave her Imodium and coconut water, which is high in potassium. Rob had run to Wal-Mart to buy it, and it seemed to do the trick. Mom kept complaining. I have to go, but I just can’t. She applied the Valsalva maneuver so often that I feared for her heart. I tried explaining that she had been “going,” that she had diarrhea, but there was little understanding, too much discomfort, too little rest, some frustration, and plenty of anxiety. By this time, I was thoroughly exhausted myself, having been awakened three times for mom’s bathroom runs—literally.

This morning, I had two jobs to edit. But I first visited with Barbara, who gave me some Gatorade for mom. Rob and I think, however, that the coconut water is the better bet—much higher in potassium and no sugars. Fortunately, I have two cases of it, one of which has lemon, making a very refreshing drink.

Spoke with Kathy at Rittenhouse. She was very reassuring and we made plans for me to visit tomorrow to sign the papers. Mom will be there from Wednesday through Sunday, giving Rob respite while I traipse hither and yon.

We are having a very wet season. Driving down my drive is such a pleasure. Everything is so lush and the lawn is lovely. Plants are thriving, even the hydrangeas, which had to be cut down to the ground because of the frigid winter temperatures. I do have one or two hydrangea flowers on the Endless Summers and Pias, but will have to wait for next year for the show—a minor disappointment, considering how beautifully they are now shaped. My Quickfires are absolutely gorgeous and were among the few that bloomed and prolifically so. My Limelight and my Strawberry Vanilla hydrangeas are also abloom. Mom enjoys seeing them, too. But she mostly worries about the cat on the porch ceiling fan. How can he stay out there in the rain? I assured her the cat that lives in the fan is on an enclosed porch and quite safe. I wonder how she determined the cat was a male! Oh well. Ours not to reason how.

Mom asked if I were hungry. This means she is hungry. If I ask her directly whether she is hungry, she will say No, I was just wondering if you were. So I fixed her some grilled hamburger from Saturday and freshly steamed green beans topped with coconut oil. She loved it, particularly the green beans. Mom despised the canned green beans she got up in NJ from Meals On Wheels. That was truly nutritionally poor food. Glad to have her here, where I can make decent meals for her.

I was quite worried about mom last night, especially when I figured that the problem was the pneumonia shot. I checked possible side effects online. And sure enough, diarrhea was one of the “nonreportable effects.” But I was the one who agreed that she could have the shot, even though I am generally against vaccinations, especially in someone her age. Still, if she came down with pneumonia, I would feel even worse. Therein lies the dilemma.

Mom is in the kitchen, back at her word puzzles and asking Rob endless questions about everything and nothing in general. All’s well that ends well.

Sunday, July 13, 2014 

I awoke thinking of the day my sister-in-law threw the bouquet to me. We had agreed long in advance that she would throw the bouquet to me, and so she did. The beautiful bride poised to throw the bouquet over her head but then turned and threw it directly at me to the dismay of all the other young single women that day. There were cries of protest from some of my cousins, “She cheated.” But we were all having too much fun to do anything about it. The bride threw the bouquet and had delivered as promised. I remember her eyes—always bigger than life. She had a beauty that matched her smile. And now she’s gone. How will I feel when mom is gone?

We had enjoyable company yesterday, my cousin and her dear friend. Mom sat out on the porch with us and ate with us, but was never really part of the conversation. Her hearing and her lack of memory impeded such. We took photos, talked about everything under the sun, and pretty much relaxed. It was very warm to begin with but cooled down considerably. We sat through a blessed rainstorm that did the trick. Fortunately, it didn’t end up being one of those storms that makes you feel as though you’re in a rain forest.

Toward the end of the visit, mom had some problems. A quick shower, a change of “panties,” and she was back out on the porch. But there were more visits to the bathroom and more changes. Our delightful company soon left and mom retreated to her room to partake in her favorite pastime, watching television game shows. We have a birthday party to attend today, where she will see yet more relatives; however, I am debating taking her. She might be better served just sitting at home and relaxing instead of taking the 45-minute drive with me. Besides, I am not sure what her condition will be. I can hardly leave a diaper in my cousin’s bathroom wastebasket. Besides, it looks like rain.

This will be a tough week: Several jobs came in at once. Besides that, I am slated to go down the shore for an overnight on Wednesday. Then back out on Friday for my third annual reunion with college friends who grew up in my hometown. I am bringing the smoke pork chops from the local butcher, and of course, salad greens, which I should have aplenty from the food cooperative.

During this time, mom will be at Rittenhouse, a local assisted-living/nursing home. I know she will be anxious, but I will write a note that she can refer to daily. Am hoping this will alleviate some of her anxiety. I, too, would fear being left somewhere with no way to get back home. There is so little I can do, apart from never going away and never leaving her with someone else. Even yesterday’s visit was a bit much for her. Having company disrupted mom’s normal routine, even though she seems to enjoy the change of pace—at least momentarily. Rob and I, of course, had a wonderful time. He joined us last minute, as is his wont, and was glad he did.

But I think mom fears running out of questions to ask: Where do you live? Do you like it there? How far away is it? How long have you lived there? It’s as though she is working phrases from an English language course, Level I. And indeed she is. I am currently studying Japanese. I know the feeling. You can ask a question, but when the native speaker rambles on about something beyond your ken, the only response you can give is the deer-in-the-headlights look. I feel that way even when I do understand the speaker. When Rob and I arrived in Salzburg years ago, a native asked me in French how long I would be staying. I was so startled that I struggled to answer. I had found myself in a language dilemma. Should I answer in French, German, or English. And I had trouble changing gears. I finally stuttered something in German that was most likely ungrammatical. A sudden change of language for me sometimes results in a misfire, as though I need a change of sparkplugs. I first recognize the language, understand the language, and then have to make a decision to answer in that language or another, especially when the speaker is clearly bi-lingual. But mom never learned another language and her own is failing her miserably.

Valentino did his usual barking at the window. All I have to do is appear, and he stops. But by then, it’s too late. The alarm has sounded.

Sandy!

What mom?

Where do we have to go today?

Nowhere mom. Go back to sleep. It’s only 7 o’clock.

Oh, OK. 

I think mom would be happy to stay home today.

 

 

Friday, July 11, 2014 

One of those days. I spent much of the morning cleaning the porch and the house in preparation for company tomorrow, my cousin and her friend. Mom is now up and in rare form. 

Is your brother married, Rob?

Does he have any children?
Yes. Five of them.

Oh my God.

Well, mom (I said), you came from a family of ten.

I did not. That’s ridiculous.

Then I named her siblings.

Rob then produced the family portrait and asked her to name her family members, which she did with no prompting, except for two youngest siblings.

See, mom, there are ten children.

How many children does your brother have, Rob?

That’s a lot.

Do you ever visit him?

It must be nice there.

Yes, it is, but it’s no better than this.

Is he married?

Where does he live?

In California.

Does he like it there?

Have you ever visited him?

Yes.

Is he older than you?

How many children does he have?

Oh come on. He’s too young.

How old do you think he is, Paula?

I don’t know.

He’s 77.

Oh come on. He’s not that old.

Well, he is.

How old is your brother, Rob?

He looks younger.

Does he have any children? 

And so it goes. Mom only has a few sentence structures left and she uses them as frequently as she can. 

Yesterday, we went to the GP for a checkup. When I told the doctor I hoped to escape dementia because I read, am a musician, and continue to study, he said that was no guarantee. Just this morning after I wrote about this exchange to my uncle, Rob came in to tell me that Dr. Schnetzler, a brilliant scientist for whom he worked, developed Alzheimer’s disease. He was killed by a car while wandering one evening. How horrible. Blew a hole in my theory. 

And you only have one brother? That’s it?

No more?

Did you ever meet his wife?

And your brother lives in California. Where do your parents live?

They are gone.

What did my little sister Marge die of, Rob? I don’t remember.

Heart disease.

Rob, your brother didn’t come with his wife, huh?

And what did my big sister Marge die of, Rob? A heart attack?

Old age.

What what did my father die of?

A heart attack.

Oh. Where did you get this cup, Rob. It’s cute.

 

 

Wednesday, February 9, 2014 

I feel like a miser. When I prepare mom’s lunch or dinner plates, I put so little on her plate that I feel as though I am cheating her of some wonderful food. But she rarely finishes anything, and I wind up throwing so much out. She has not been very hungry lately, something I can understand. It’s summer. My appetite lessens in summer, too. Much too warm to eat heartily. But I joined the Rodale food coop and I am laden with an abundance of wonderful organic vegetables and greens every week. On pickup day, I come home and check out recipes. Then I begin slicing, dicing, steaming, stir frying, puréeing… you name it. Even bought a steel wok for the occasion. Although half the share belongs to a friend, we still have enough to keep our household of three very well fed and satisfied. We have an abundance of soups right now—cucumber, avocado, and yogurt soup; zucchini soup; and swiss chard soup. And yet, mom won’t eat or she eats very little. She just had a cup of zucchini soup and left only a small amount at the bottom.

I am bringing her to Rittenhouse for respite while I am on my reunion weekend. For the last two years, four of us get together for a summer weekend away. This is our third year, and I am preparing mom for a weekend away to give Rob time off, too; although, he still has the pups to contend with. And another friend has been asking me to join his family down at the shore for the past three years. Thus far, I have been unable to go. This year, I am hoping to bring mom to Rittenhouse for another night away to permit me to spend a night down at the Jersey shore. She might enjoy spending time with others, rather than falling asleep in her rocking chair. It’s hard to say what her reaction will be. We shall soon find out.

 

 

Sunday, July 6, 2014

I finally got mom to sit out on the porch again. She refused to take a walk in the garden, feigning a stomachache. So I made her ginger tea and gave her candied ginger. She liked the candy and said she felt better. Mom asked incessantly—as is her wont—where Rob was. As he was mowing the lawn, he passed by the porch several times. She laughed and noticed he was wearing ear protectors. But later, she asked where he was again.

Is Rob sleeping?

No, he’s mowing the lawn.

Oh, I didn’t see him.

Yes, you said you saw him wearing the ear protectors.

Oh, I didn’t recognize him.

She hides her lack of memory cleverly each time. 

In the bathroom, I made her stand several times and then sit again. I thought this would work to help her evacuate her bladder more completely. She protested each time, saying she didn’t have to “go,” but each time, she urinated more. 

In bed at last, she calls again for a “Kleenex.” Mom always uses the brand name, even if it isn’t the brand name we use. She must have a tissue in her hand and protests vehemently when you take away a soiled one. She collects them and stuffs them everywhere as if they were her most valuable possession. Mom collects paper towels, tissues, and toilet paper. She even tore open a pack of cotton squares I use to remove mascara. Paper is her preferred material. She must have it in her hands, under her pillow, in her “panties,” and in every pocket. They must always be within reach. Tissues are her security blanket.

Saturday, July 5, 2014

Yesterday mom was really out of it, and I missed her. We went over who in her family was still alive, where they lived, where she had lived, who lives in her house now, where her furniture is, where her clothing is, where Rob is, where her brother lives, where her son lives, where her sister lives. And at the end of it all, she asked if her living brother were still alive and where he lives. She asked if her sister were alive and where she lives. She asked about her brother John and where he lives; however, John died 35 years ago. She asked the same questions over and over again. There was no remembering, no teaching her, no progress. It was the end of a tough day. I await today. Where will she be and what will she remember. She knows I am her daughter or did last night. But she doesn’t remember seeing her son only 2 weeks ago. She doesn’t remember his visiting us several times since she moved here. It must be lonely and frightening to feel that family is so far out of touch. It must be lonely and frightening not to know where they live or where they are or when they died or if they died.

Dementia is the ultimate isolation. How I wish I could bring her some peace. But peace is not a part of this horrible condition. She always has too many questions and never any answers. You control nothing, not where you live or what you will wear. You can’t control your bowels. You can’t get a glass of water on your own. You can’t decide what to eat or when to eat. You are constantly at the beck and call of another—almost like a child, except that a child trusts. An elderly demented person lives in continued agitation and fear. Who will come? Who will help? Even getting up in the morning is a problem. She calls anxiously: Sandy, as if for help. Even deciding where to go for breakfast or to watch TV is an unknown: Where do I go? Where should I go? What should I do? Nothing is known or remembered day after day after day. Your life is a blank, a terrifying blank. Somewhere inside that plaque-filled brain are answers, but they surface too infrequently. When they do surface, they soon become submerged into that muddle of a memory. Part of the anxiety might come from the fear of losing the memory—like a good friend. This part of you dies over and over again. There is no respite from loss.

This morning’s conversation:
Where do I go for breakfast? Downstairs?
There is no other downstairs, Mom. We are downstairs.
How do I get down there?
It’s right here, mom. In the kitchen. (It’s where she has had breakfast every day for the past year.)
Oh.
Rob, where is your brother now? (She remembers his brother!)
He’s in Cooperstown, NY.
Oh. Is he married? (Another question she asks interminably)
Yes. He is.
Does he have any children? (We had been over this several times.)
He has five children.
Where did they go out to eat?
Who?
Your brother.
When?
Yesterday (Mom remembers that two days ago Rob, his brother, and I went out to dinner, which is quite a feat! She has no concept of time, but her brain retains random bits of information that were processed recently.)
Valentino barks. Mom laughs. He doesn’t listen to you.
Yes he does, mom.
Rob your brother was here yesterday, right?
No, he was here the day before.
Oh. That cat is still up there! (That would be the cat in the ceiling fan). Rob, the white dog just sleeps all day?
No. She doesn’t.
Did they take the dogs out? (She remembers that Betty and I take the dogs out every morning.)
Yes. This morning.

As I said, bits and pieces of memory are still lodged in her brain, haphazardly to be sure. No rhyme, no reason for them to emerge as they do or when they do.

Friday, Happy Fourth of July, 2014

I even get the chills writing those words. Am listening, as I do every year at this time, to my Sousa marches. Even hummed them as we walked the pups this morning. It’s a great day. The sun is edging its way out of the clouds and the flag is flying. I waited until the rain stopped out of respect for the colors!

Rob just said it must have been wonderful having lived 100 years ago. What a country it must have been! I remember bands in the park even when I was a child. They were dying out then, but we had and still have the most beautiful gazebos—sadly now empty. It was thrilling to hear the bands play. Children would run around and play. People strolled lazily, greeting each other, often stopping to chat. Rob remembers strolling in the park with his grandfather, who was well known and highly respected. Many people stopped to talk. My own father was also very well known in his town. It seemed everyone knew him. When we went to renew insurance toward the end of my father’s life and the man behind the desk did not know my father, I had a sinking feeling. How could this be? This was no longer my father’s town. I knew then he would not live much longer, and he didn’t.

Now I am left with my mother, who barely remembers this remarkable man who made a living despite having only finished school through fifth grade. He knew more than most high school teachers do, however, and was able to answer many of my geography questions. He was business savvy and owned a furniture store, both retail and upholstery. When he retired from the furniture business, he opened restaurants. Cooking was his avocation, his other love. But mom remembers none of this.

What did my husband do?
He owned furniture stores and later opened several restaurants.
Really?

Her interest is always quickly lost and she will not remember this brief exchange.

Mom is wearing her summer pajamas. And I am wearing red, white, and blue to celebrate the occasion. A French acquaintance once remarked how stupid it was that American’s wear their flag colors so readily. Strange coming from a French woman whose flag bears the same colors. (Of course, not strange that she would denigrate us.) Nothing nicer than red, white, and blue in the form of the stars and stripes.

I marched to Sousa into mom’s room, where she is watching TV. But she cannot hear the music, and if she could, she would ask if I had any Italian songs. She only asked where I had been.
Out on the porch?
Oh really? By yourself?
Yes.
Don’t sit out there by yourself. Sit in here with me and watch TV.
No thanks, mom. (I can only abide so much TV and I need fresh air.)
Where’s Rob?
In the kitchen.
Oh really?
Yes, he is. Did you see him this morning? (Why do I challenge her? I know she sat with him and that he made her toast and coffee.)
No, I don’t think so.
It’s hard for mom to keep her days and hours straight. She doesn’t know when or even if she has seen someone.

Today, I cooked yet another batch of soup. Zucchini soup. Yesterday, I boiled beets and turnips and made Swiss chard soup and collard greens. I subscribe to the Rodale food cooperative, where we get fresh organic vegetables weekly. The only way to make sure I am not throwing my money or my food away is to check out recipes make the food quickly. Thus far, soup is the order of the day, and mom is one of the happy recipients. She is not particularly aware of the smells coming from the kitchen and often asks where I got the food.

Did you make this? Where did you get this?
I made it.
Oh you’re a good cook.

And so it goes. Happy Fourth of July! God bless America!

Beautiful day. The heat and humidity finally stopped. We have a gorgeous breeze. My plan was to sit on the back porch and watch a DVD. Only You! set in Italy, where my brother and his daughters are right now. Betty and I had walked the kids a second time. Lucy seemed to be on the mend. Val seemed fine. I had my lunch and some tea. I enjoyed my homemade macaroons—and so did the kids. Midway through the video, I was asleep. That is, until mom called.

A bit of a disaster awaited me. Mom had soiled her “panties,” as she calls them. This necessitated washing everything in sight, because she went to look for me and I knew her hands would not be clean. I showered her (second shower for the day, to her dismay), put her clothing in the wash, and washed down walls, bathroom, and floors. This was the end of a restful day. Might as well vacuum and be done with it.

Mom is watching TV again, having had her nutritious lunch, which apparently went through her a bit too quickly. And I will return to my video in a bit. It has a very happy ending!

Tuesday, July 1, 2014

An inauspicious start of the day. I was awakened by Lucy’s bark. She was at the foot of the stairs and needed help getting back upstairs. Rob joined me and explained that he had been up with Lucy through the night. It was a tough ending to her special birthday. She had had the runs and needed to be let out very 2 hours. It was only 4:30 AM. It was then that I discovered where she had last relieved herself: on the bathroom mat over the tile floor. No better place at all. I took up the mat. Rob put it in the yard, and I wiped the floor with Lysol. This would have to do until morning.

I decided to stay downstairs with her, just in case she needed to go out again. My pallet was limited. As Lucy chose the Mutt Mat, I chose the dog bed. I listened throughout the night for her breathing and was satisfied that all was well. I only hoped Valentino was also sleeping soundly upstairs.

Mom called once at around 5:30 AM—her familiar cry: Sandy! I looked in, but she seemed to be sleeping. I let it go.

I didn’t sleep after Lucy’s crisis. I only listened and planned: Would I take her to the vet? Which vet: ours in Pottstown 45 minute away or the local vet? When Betty calls at 7:00 AM, would I tell her I would not take the kids for a walk but let them out in the yard? Or would we go for our customary walk? Did I have rice in the cupboard? Would I ask Betty to bring a cup of rice? Would I try to get some sleep later? Should I just get up and work—my latest assignment deadline having been moved up from July 6 to July 3? Did I just hear Valentino? Or was that mom? And so it went.

Betty and I did walk the pups. And I cooked the rice and hosed off the bath mat in the yard. I need time in the yard.

Even with little sleep, I must tend to mom.

Monday, June 30, 2014

It’s 8:52 am. I have walked the pups with Betty, fed them breakfast, and cleaned the bathroom. Busy night for mom. I get a kick out of hearing Betty say that she cleans her bathroom on Saturday. Ours gets cleaned 5 times a day! I even took Lysol to the handle of mom’s cane, and of course washed the walls to and from the bathroom. I am pretty sure I know what will await me when she gets up: change and wash her bed sheets and her nightgown and put her in the shower. Am concerned about the return of her lower back pain. Might presage an infection. We’ll see how the day goes and whether she complains. No fever. Luck might be on our side, but with such poor toileting habits and without 24-hour surveillance, it’s tough to avoid UTIs. What I want to avoid above all is sepsis. She’s been there before.

Today is Lucy’s 15^th birthday. We had a challenging night, but made it through. Two potty breaks outside, but we were finished shortly after 2:00 am. I need to pick up a rotisserie chicken for her—her latest favorite food. I cut up small pieces and add a tiny bit to her kibble. Valentino likes the new addition, too. I recently stopped giving them boiled chopped beef. Thought it was too much protein for them. But a tiny bit of chicken seems to satisfy their palates and hunger for meat. Normally, I like to go to Leesport for the good chicken, but I might settle for a supermarket chicken, as Leesport market is opened only on Wednesdays.

Good week ahead. Only one meeting tomorrow evening, visit to see Ava and Butch on Wednesday, haircut on Thursday, and the Kutztown Festival on Saturday. We usually avoid the festival like the plague. It’s often too hot, but Karen, Glenn, and Lauren will be visiting. Karen and Glenn usually find things to do in our area that we ignore or overlook. Kind of like not visiting the Empire State Building when you live or work there. Should be fun at long last to do the Kutztown fair. I might even pick up some vendors for the Dreibelbis Farm Festival. Thus far, I have about 23 vendors and exhibitors lined up.

Not sure what we will do with mom on Saturday, but dear Rob gets saddled with her during the week when I am not here. It’s tough for him, especially when she talks while you are trying to talk. Mom is so used to not hearing that she does not wait for an answer. This, however, is nothing new, but a lifelong habit. She has long lived in her own private world. Years ago, an acquaintance we had met on Broadway asked me why my mother asks questions but does not wait for the answer. Instead, mom asks another question, often when the other person is answering the first question. It can be disconcerting. Multiply that by the 12 or so hours that she is awake. Rob stopped her banter yesterday as he was trying to teach her how to get off the bentwood stool and said…

Listen! Just listen!

I know. I know how to do this.

Then of course she did it incorrectly. When corrected again, she responded with an Oh yeah.

I keep telling Rob to stop trying to teach her. She cannot remember. She does not understand. But he said he had made some headway. He’s deluded each time and is dashed when she forgets the lesson.

So goeth the lesson!

Sandy!

Mom is up! My morning has officially begun. I brace myself.