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.

Wednesday, June 25, 2014 

Valentino is at the groomer. Things are a bit quieter than usual. But mom is up.

 Sandy!

What mom?

What time is it?

9:30

I better get up. 

My day has officially begun, even though I have been working on an editing job since 8:00 am. I try to get as much done before mom’s demands must be met. She’s in the kitchen now. I need to go to the store to buy some milk. She won’t eat eggs. Cereal is it!

 I have to go to the store. We’re out of milk.

You don’t have no milk?

I don’t have any milk.

Isn’t that funny?

Why is it funny, mom? Haven’t you ever run out of things before? 

Oh why do I argue? She’s not there. She no longer understands processes, the order of things. Go to the store and be done with it. I am off…

 

Monday, June 23, 2014

Company yesterday. Long-time friends whom we had not seen in too long a time. Grilled some chicken burgers and mixed veggies. Am getting better at grilling.

Mom was in usual form:

How are you? I haven’t seen you in so long?

We haven’t met before.

Oh really?

Where do you live?

In Mount Joy

Oh really?

How far away is that?

About 45 minutes

Oh really?

It’s so nice to see you again. Where do you live?

In Mount Joy

Oh. How far away is that?

 

She was fascinated by the iPhone that little Alex (one of our guests) showed her. Mom is usually initially fascinated, but never really interested. I have shown her photos on the computer, but it’s tough keeping her attention focused. When she starts saying Yeah, it’s time to move on.

I mentioned to my friend that mom lived on coffee and bagels with cream cheese for too many years. As I recall, mom was never hungry and ate far too much wheat, far too few omega fatty acids, and far too few vegetables. She is paying the price now. Actually those engaged in her care are. I read recently about a 111-year-old woman who just graduated high school. She considers herself young. She certainly must be to have studied and passed a rigorous four years of school.

I am at school, too. The school for caregivers. I am getting better at interpreting mom’s answers. Yeah, yeah means just that, and it indicates that she is not listening. Her yeah, yeahs are often spoken while you are just finishing your sentence. If you ask her to repeat what you said, she will smile weakly and say she forgot.

She is unable to focus, but there are bits and pieces of her here and there. Scattered wildly to be sure and unpredictable in delivery.

But mom can be obsessed as she is with windows and shutters, doors, the porch fan, the cat on the fan (He’s still up there. Can you believe it?), and the blinking light on the phone. All doors must be closed and locked. All windows must be closed, shutters must be closed. The porch fan must be turned off. The porch door and the kitchen door must be closed and locked. Security is important to her, even though she would invite anyone in. Mom has always preferred a lightless, airless home. But she won’t get one here. I open the shutters and the windows in her room every morning to her dismay. Sometimes I leave the windows opened at night behind closed shutters. She is adamant about the shutters: Someone is trying to get in. I saw him—even though someone would need a ladder to do so. Lights out! She cannot tolerate having a light on, even as she sits under the kitchen light working her word-search puzzles. Says it’s costing me money.

Time for a nonsequitur:

How is it out, Rob? Cold?

No. It’s around 70.

Oh that’s not bad. Yeah.

 

Mom has no clue what the temperature is. But she is obsessed with it. We don’t wear shoes in the house, and she often remarks about how I will catch a cold, particularly if I go out onto the porch without them. She has no real idea that it’s summer and would not be surprised to see me put on a winter coat or my mukluks or wind a scarf around my neck. 

Each time a person leaves a phone message, a red light blinks. Mom will ask repeatedly if someone is trying to call. She cannot hear the phone, but she can see the light. So she assumes that someone is calling. Thus, I need to clear all messages before she drives us crazy with her insistence that the phone is ringing or that someone is trying to reach us. Indeed they were!

Mom does remember people who have visited or questions she recently thought to ask.
Rob, who was that boy who was here yesterday?
He was the son of the man and woman who were here yesterday.
(Change of topic)
Did Sandy go to church?
No that was yesterday. She’s working in her office.
Oh. Good coffee, Rob.

And the current topic of the day:

Rob, where do those people live?
Mount Joy?
Oh yeah? Where is that?
Forty-five minutes from here.
Oh yeah?

Someday I will write a treatise on the many meanings of Oh yeah!

Friday, June 20, 2014 

Pollen has been terribly high. Lucy is sneezing and I have been knocked out from it all. On top of that mom has been loading her face with some moisturizer I had given her. She does this continually, unable to remember that she has just put some on. Not only does her face become sticky, but the scent of all the cream permeates every room downstairs. Not helping our allergies. So I took the bottles of moisturizer out of her room. I shall have to replace them with something unscented.

On Wednesday evening, friends from Jim Thorpe came to visit. Always enjoy their company. I was surprised when the next day mom asked who they were. She does not normally remember an activity or a visit on the following day. I explained—and probably should not have—that she had been to their house several times before. But she didn’t remember that. I doubt she will remember their visit today.

It’s been too hot to get her outside again. As she needs sun, I will try to get her outside earlier in the day. She is terribly uncomfortable about going outside. She doesn’t like the bugs, the bees (the garden is loaded with bumblebees, or the heat. I do sit her by the umbrella so that her head is protected. Twenty minutes of sun on her legs should help her sleep well at night; however, she doesn’t seem to have any trouble most nights.

More company on Sunday. Friends we have not seen for many years. Looking forward to it and hoping mom will enjoy their company. She usually does not interact with company and often sits in her room watching television. It might be more comfortable for her to avoid situations that could be potentially embarrassing. She seems to know that she doesn’t know things or people anymore. But her discomfort is fleeting. She forgets almost immediately that her memory failed. It almost serves her well to forget.

 

 

Tuesday, June 17, 2014 

Bad night. I awoke at 2:36 and could not get back to sleep. A bit too warm. But I walked the pups with Betty and I am at my desk now. I probably should have gotten up to work on this current assignment in the middle of the night because Mom is in the kitchen now calling me every few minutes.

Sandy? Where is she? Sandy!

What mom?

Sandy! What is that bottle doing there? It looks like milk.

It was a milk bottle, mom. I am washing it out. It’s filled with water now.

Oh, I see.

Put the light out. You don’t need it.

OK, mom. But then you’ll sit here in the dark.

That’s alright.

And where is Rob? (another favorite and oft repeated question)

He’s upstairs. I have to work, mom.

Oh, I see.

 

The only time I really have for work is when mom is asleep or when she is watching television late at night. She wants company, but I cannot give her the company she wants, sadly enough. I sit here feeling guilty, but if I don’t work, then the roof won’t be repaired, the skylight won’t be replaced, the all-house fan won’t be installed, the basement stairs won’t be replaced, the bathroom ceiling won’t be fixed… (The list is long, but not depressing. I am making dents in the work needed to be done. But mom no longer understands that I need to earn a living for her to have a comfortable place to lay her head.)

Back to my work. Well, not for long. The pups need to go out again. I was going onto the side porch without shoes, of course. The tile floor feels good against my bare feet, and I sometimes like to go “earthing” in the yard.

Mom stopped me. You’re not going out there barefoot.

Yes, I am, mom. It’s summertime. It’s hot out there.

Ooh, you can’t go out barefoot. You’ll get sick.

When I brought the dogs back in, mom asked me what the temperature was.

It’s going to be 90 degrees (a bit of an exaggeration).

Oh yeah?

Should I put on my snowshoes and my winter coat.

You can go out bare-assed! 

My mom! There she was. Buried in dementia, but vestiges of her are still alive somewhere deep inside. I relish those moments and wish they would last. But in her next breath, I am dashed.

Where’s Rob? I haven’t seen him all morning.

Mom, he already made you toast and coffee this morning.

Oh yeah? I didn’t see him. Where is he? Still asleep upstairs?

No mom. He’s in the basement getting his blueberries.

What’s he doing down there? He shouldn’t be in the basement.

Well… 

Rob came upstairs, his blueberries in a bowl.

There he is. I didn’t see him all morning.

Sigh…

Now, back to work. Oops, mom wants to go back to her room. But she first needs the sun. Coaxing her was tough. She wanted to go back to her room. She didn’t recall having sat outside the day before.

Oh, I can’t go out dressed like this.

It’s my yard, mom. It’s private

Ooh no.

Yes, mom. You’ll be fine.

She’s sitting out there now with her legs exposed to the sun and a glass of ice water in her hands. Head under the umbrella. She likes the heat. Can’t get enough of it.

I like the purple flowers, but you don’t need all of these. Get rid of them.

You mean my garden, mom? The yellow and pink and red flowers aren’t in yet. They’re just budding now.

You don’t need them.

Would you have me pour concrete over it?

Yes! It’s too much. 

So much for my horticultural efforts. I might add that I have a cousin who thinks the way my mother does. My cousin hates dirt and would like to see all country roads covered in concrete. Another cousin did just that to her yard. No dirt. Concrete. No flowers. Nothing. Just hot, reflective concrete. Sigh, again!

Monday, June 16, 2014 

Had to face my reformatting job today. Twenty-five pages was the goal and I made it, but not before I got really tired from the heat. We put the A/C on. Mom would be perfectly happy without it, sitting there with her winter nightgown, down comforter, and fuzzy slippers.

 Took a break and had lunch with Barb. Nice to get out. Important, too. We even stopped for ice cream, one of Barb’s favorite desserts! A nice afternoon. 

Back home, mom was rattling things in her room. I have a table in there with three drawers. She was going through them and asking me to get rid of stuff. Twice I had to remind her that the table was mine. The things in the table were mine also. She unearthed a copper bracelet, some brass light switch plates, and some paint samples. Having nothing better to do, she decided to clean house! 

She’s calling me now to take her lunch plate. She won’t wait too long and will keep calling me until I get there. Hold on… 

OHMIGOODNESS! Mom had unearthed some light switch plates with matching screws. I kept them in the drawer in a baggie so I would not lose the screws. So she put her uneaten potato salad in the baggie and told me to throw it away. In her room, nothing is sacred!