Monday, February 10, 2014 

This morning after breakfast, my mother asked again where to go to watch television. I explained that there were only four rooms to choose from. I had her name three of the rooms. She could not name the fourth. And then I asked her where the television was: her room. I was hoping she would remember something, anything. Her reply to me was, You don’t like me, do you? Dr. S was right. I should go with the flow and stop trying to teach, stop trying to make her into someone else. It’s clearly as stressful to her as it is to me. So I hugged her, led her into her room, and brought in a plate of her favorite cookies. I was justly chastised by her comment. 

Taking a stylistic page from Alexander McCall Smith: 

Guilt
Guilt Guilt
Guilt Guilt Guilt
Guilt Guilt
Guilt

 

Sunday, February 9, 2014

It is 5:41 am. Awoke an hour ago. Yesterday Jon, Marcy, Ava, and Quinn came to visit mom/grandma/great-grandma. We went to Say Cheese, the ultimate restaurant for comfort food. While walking Mom to the restaurant from the car, I wanted so much for her to keep her old pace. That hurried clip. But she grew out of breath fast. It was so cold, too, as almost every day has been this winter. She ate quietly, not able to hear the conversation well enough to join in, and even if she could hear, she would not have remembered enough to have participated on any meaningful level. Mom was there, but only part of her.

We went off to Haute Chocolate for dessert, but mom chose to stay in the car for that part of the visit. Too much for her. Too tiring. John sat with her in the car, I didn’t. I was delighted that Ava wanted to sit next to me and that Quinn was engaging. And John needed to be with mom. So why did I wake up feeling guilty that I was willing to leave her alone in the car while we did the cupcake detour.

When I awoke this morning, I cried, feeling loss. Started thinking about a date I had had back in the early 70s. Someone I had met in a class wanted to join me on a skiing weekend. He had never skied before. But off we went to Hunter Mountain with dear friends Nadia and Nestor. Stayed at Xenia (hotel), of course. Can’t remember this young man’s name. Might have been Ronnie. Not sure. That was our only date. After hours of skiing on the slopes alone, I finally stopped in the lounge, where I met Nadia, who chastised me for not having checked up on—it was Hal, yes, Hal. I had no idea where Hal was or had been, but she quickly clued me in: he had broken his leg, and it was a serious break. Full cast. I thought she was kidding at first, but no. I was shocked, but I also remember feeling annoyed. I don’t remember much of what happened after that, except to say that I visited him and brought his supper to his room at the mountain that night. He was propped up in bed and said that I was so kind. I protested, saying I wasn’t, and this morning, that same remorse hit me again. I had not been kind. I wasn’t kind. I wasn’t any kinder to him than I had been to my mother, who wanted to stay in the car by herself because she was tired and didn’t want dessert.

When I awoke, I also felt fear. What if they all left me at once—Mom, Rob, Valentino, Lucy, John, Marcy, Ava, Quinn. (I heard Lucy breathing sweetly this morning at the foot of my bed. So I knew she was fine.) Did the quartet make it back safely to Maryland? Is mom sleeping soundly? Is Rob comfortable and well? Is Valentino OK?

Valentino was a bad boy yesterday. It was his birthday—eighth or ninth. Our vet thinks he is older than I was told. We all sang Happy Birthday, and I gave him a little Valentine pillow to play with. (Gave one to Lucy, too, of course.) Anyhow, Val took exception to my hugging and holding Quinn and did the jealous rant. He tried to nip, but was easily stopped. Still, it was getting tiring. He didn’t put on a good show for the troops.

After our company left, mom was sweet. She was tired. I sat and watched TV with her, something I am loathe to do. I am not fond of spending hours in front of the “box” (I remember when it was a box and not a thin wafer), except if it’s “Frasier” or back in the old days “M*A*S*H”. Sometimes I like watching HGTV (Home & Garden TV), but that can get boring fast. “The Property Brothers” are cute and very talented, and the dynamic between Hillary and her TV partner David on “Love It or List It” is fun. I like the pair. But the nonsense they encounter in the homes and with the listing couple is far too often contrived, too formulaic. I like the formula used by PG Wodehouse—they always work. But cinematic formulas quickly become boring.

Anyhow, mom likes company more than anything. And I give her precious little of it. Precious little, apart from what I am bid to do so many times during the day. It’s almost hard to volunteer more time. I begin to resent it. Last night, while I was editing a manuscript, mom interrupted so many times, too many times. I finally put the work down. That’s when I joined her at the television.

Mother Teresa and Saint Teresa must both be looking down at me sadly, wondering why the loving heart is too often not at work. It often begrudges time away from work or “things I must do.” I told Marcy that it’s tough “living with your mother again.” Marcy was solicitous while I complained about mom telling me to put the lights out, to wear a sweater, to put on shoes, to not let the dogs out, to hang this up or put this away, to sit here and eat. It just hit me this very moment—as I thoughtlessly went on about how my mother has reinserted herself into my life, this cannot happen for Marcy. Marcy’s mom died last May. She won’t have the chance to live with her again. Am I still that young woman sitting on the chair next to Hal’s bedside, wishing I weren’t there, but out skiing instead?  I awoke asking for forgiveness, as I often do. Having mom here has greatly intensified my awareness of my shortcomings. I hope somewhere Hal has forgiven me. I hope somehow I can be a more loving presence to Marcy and her family and to mom.

 

 

 

Saturday, February 8, 2014

What’s this word, Rob? Mom does word search puzzles every day when she isn’t watching TV. Where’s this word, Sandy? Rob, is this right? Asking these questions often enough sometimes elicits a curt answer.

Rob insists upon surfing the web at the same counter where mom sits. I encourage him to escape to saner, quieter quarters, but he persists. So if mom asks him another annoying question, he will just have to deal with it. Men and mothers! And if I hear him sigh in annoyance once more… But he is very helpful and far more patient than I. He is not watching his mother decline before his eyes. He is solicitous and I am grateful for him. He’s out shoveling snow as I write.

When I taught school ages ago, I had a delightful student who observed at a nursing home where we went to entertain the elderly that the elderly become like little children. Old people have to be led by the hand just the way little children do. They become like children again. He wasn’t aware at that time of the irony of their also returning to diapers.

Friday, February 7, 2014

Dogs are up and have been fed. They’ve also been outside twice within the space of 15 minutes. Can’t walk them now. Am still recuperating from mild foot surgery. (But then is any foot surgery mild?) Got Valentino out before he barked too much at the children waiting on the corner for the school bus. My plants are devastated. Crushed under snow and ice. I wonder as I do every time this year: Will they ever bloom again? I fear I shall have to order another Carol Macke Daphne. Too delicate to survive the snow and ice piled on top.

Valentino started playing roughly Lucia. Had to stop him before mom awoke.  Mom’s cereal bowl is filled and waiting for her. Bathroom has been cleaned twice since 5:00 am. I hear some thumping. Mom’s cane. Oops, false alarm. But now Valentino has left my office. Well, it’s always easy to lure him back. He’s a compliant, but noisy pup, and likes to be with me.

Sandy! She’s up. Mom is up. What time is it?
It’s only 8:30, mom.
Oooh, I’ll stay in bed. Wake me up later.

In a matter of a few minutes, she will call again as if for help, looking up with a concerned face: Sandy! What time is it?

Later—

Mom is up now and showered. Small mess, but at least she’s aware of it and asked that I change her Depends, which for her privacy and delicacy are referred to as panties. She is having breakfast now. She greets Rob and begins a series of small seemingly disconnected statements: What time did you get up Rob? It’s 10:34. Did you wear your coat? It’s cold out there.

Rob had to let the pups out again. Fourth trip this morning. They are seeking Aunt Betty, who usually walks with us every morning and afternoon—ever since she lost Coco. “Aunt Betty” takes Lucy, and I take Val. But the snow and ice and freezing temps have prevented our walks for several weeks now. We don’t walk on ice—ever! At least not since I broke my wrist in a fall and Betty fell while walking Lucy. We are no longer intrepid. Is this the kind of fear that leads to joining the ranks of the timid elderly? Mom, while walking timidly to the car one day, remarked that she never used to be this way. She’s right of course. Being short (less than 5 feet tall), mom always walked with a perfectly straight back and in high heels. Bunions and loss of muscle strength stopped this practice over time. She now uses a cane—well, sort of. The cane mostly points in the direction she is attempting to take and often does not touch the floor. Walls and furniture support her until she can lurch forward and take her place on the couch or a chair or her bed.

She’s eating her cereal now, all the while continually organizing the Cheerios in her bowl. Her spoon clacks incessantly against the plate, and she now slurps her cereal as though it’s soup. In fact, I am given to putting her soup in a cup so she can drink without using a spoon, thus eliminating the clatter. Sometimes I close my office door to block out the sounds coming from the kitchen and her inquiries about “the cat.”

Can you believe he stays out there in the cold? Ohmigod.
Mom, do you want to feed the cat?
Oh no. Not me! If you go out there, put a coat on. Is it cold out, Rob?
Yes, it’s in the 20s.
It’s not too bad. It doesn’t look cold from here. Is it raining?

I retreat to my office:
Is Sandy up yet, she asks Rob. (Recall, I just showered her and dressed her.)
Yes.
Where is she?
In her office.
Valentino! What are you doing there? Did the dogs eat already, Rob?
Yes.
Oh.

My brother called this morning. Mom always knows her son.

When am I going to see you. I miss you so much. Don’t come here. It’s a mess. The workmen are all over the place. Nothing is done. There’s no place for you to stay.

Later at the kitchen counter: That cat’s still up there. Oh my gosh. (At Christmas, there was also the man in the tree who waved at her.)

Sometimes I wish there were workmen all over the place. Mom is staying in what will eventually become the dining room. Eventually. This has now become a euphemism for her dying and leaving us forever. I almost don’t want to call the room a dining room. It seems heartless and cruel. It will become a dining room soon enough. Right now, it is still inhabited with a once lively woman whom I love.

The black dog is sleeping. Earlier she remembered his name, Valentino, who will be 9 years old tomorrow. She won’t remember his name later, and might call him Valente (my cousin Sam’s last name), or she might ask, What’s the black dog’s name?

[Bark from Valentino] Oh now, what’s he barking at?  Rob, does your brother ever come to visit?
No. Do you remember where he lives?
Oh—about to give up, and then—He lives in California.
Yes.
Does he like it out there, Rob?
Yes.

Rob is a man of few words. And these are the same questions mom asks about Rob’s brother whenever she thinks of him. How many ways can you relate the same information over and over again? How many more times can you stand to be asked the same questions?

Mom is talkative this morning. Every morning is different. My friend Mike encourages me to give her curcumin to improve her memory. I do, when I remember, and hope it will make a difference. Big leap of faith.

Mom sometimes asks about that other woman. She is not sure who she is and she might be referring to her sister Rose. Sometimes when she asks Rob about that other woman, she is referring to me. Sometimes it’s about Ann, her former caregiver in Bayonne. She sometimes asks how Rose is and where she is and why she is in a nursing home. When I explain that Rose can no longer walk and needs full-time care, she protests:

They can help people to walk, you know. They can make her walk again.
Not Rose, mom.
Why not! People worse than Rose have walked.

My desperate reply is usually, but there are no people worse than she. Of course, desperation serves no one, ever. Better to say nothing. I hear Dr. S, cautioning me. You’re the caregiver now. I hear me replying, I never wanted to be.

Rejoice in hope.
Be patient in tribulation.
Be constant in prayer.
Romans 12:12

Thursday, February 6, 2014

Mom has been living here since June. I don’t know how many times I have prayed for patience and a loving heart, but I am still at it.

Today was a quiet day. Mom is watching TV. Yesterday, we didn’t have cable or phones because Comcast was down. Snow and ice. Been a long cold winter. Mom is getting little exercise and complains of “going nowhere and doing nothing.” But then, she has always complained. Yesterday, she spoke with Ann, her former caregiver in Bayonne. She remembered Ann, or so led us to believe. It’s hard to tell. She tells Ann she does nothing all day long. Mom is not one for staying on the phone too long. It’s Hello! How are you? Here’s Sandy. Most of the time. I am often Rose. I am sometimes her sister. But I am always the go-to person for all things personal.

Mom likes watching Steve Harvey and Family Feud. She talks about “the cat” every day, but when questioned about it away from the kitchen, she denies knowledge of it. “The cat” lurks on the porch fan. He’s actually some bolts and a fan motor, but to mom, he is a cat. We need to name him.

Mom was always spotless. She still likes to clean, but taking a dirty napkin into which she has sneezed or blown her nose to wipe the placemat is hard to take. I clean it again. When she washes a dish, I thank her profusely and rewash it.

The hardest thing to take is the lack of cleanliness in a woman who was always personally clean. Rob and I clean the toilet and bathroom several times a day. I pour heavy-duty drain cleaners into the sink to rid it of rancid smells. I use an aromatherapy cleaner for the toilet, just to clear my nose of the putrid smells I face too many times a day.

The routine: Mom calls me in the morning. Asks me to wake her in half an hour. She makes her bed, brushes her teeth (usually a 5-minute task, possibly accounting for her healthy and intact teeth), asks where to go from there. I direct her to the kitchen, only one of four rooms on the main floor, where she has breakfast and remarks about the cat. Her cereal (only Honey Nut Cheerios), a napkin, and a spoon are already in place. Rob makes her coffee and English Muffin with cream cheese and homemade jelly later. She doesn’t eat much else besides cookies, some nuts, and maybe some cheese and crackers throughout the day. And she drinks a prodigious amount of cranberry juice. At night, she gets a nitrofurantoin to prevent bladder infections, which result from her very poor toileting habits.

Some mornings, she gets a shower. I don surgical gloves and use the hand-held showerhead to clean where the sun doesn’t shine. Sometimes she pees in the shower, which I find disconcerting. My mother is peeing in front of me, like a child, without a care in the world. Perhaps I shouldn’t mind. But I do. And sometimes—even worse—bits and pieces of poop go flying around the tub.

I hide all food stuffs from mom. All candies, all cookies, a nuts, all dog bones. Out of sight. And when we feed her, we have be a constant presence, lest she feed the dogs.

Mom don’t feed the dogs raisin bread.
Oh, I would never do that.
A minute later: Here, maybe the dog will eat my toast.
No mom, I told you. No. Raisins are poison to dogs. You will kill my dogs!

Maybe the most difficult thing is to realize that I am living with my mother again. She tells me when to turn lights off, when to close windows, asks if doors are shut, tells me to wear a coat or a sweater, asks where I am going, tells me to be careful… Nothing offensive, mind you. But I am living with my mother again. I am back home, and I am twelve years old. Oh Lord, help me find something good in this experience. Help me to be humble and loving, because right now, I am feeling murderous.

Mom asks interminably if I own this home. Or who lives here. Or where do I live. Or what the dogs’ names are. The black dog. The white dog. The neighbor. Oh yes, “the neighbor” is her friend and comes to talk to her. She tells her she is moving and mom asks if she has moved yet. There is no neighbor, no visitor, no one in the neighborhood is moving. I am reminded once again of Dr. S’s caution: Go along with it. You’re a caregiver now. It’s too stressful to fight against. Sometimes I do “yes” her to death. Other times, I fight: There is no neighbor. No one is moving. There is no cat. See: those are bolts on the fan and a motor.

Mom does not like to be washed, but when she is finally in the shower, she enjoys it. Says it feels good to be clean. She will “remind” me that she only had a bath the day before. But I remind her that bath took place two or three days ago. She is never wrong.

My brother calls. Her Johnny Boy. Her favorite. She asks about his wife, having not been told that Margie died of a brain tumor in May. Not telling mom was of my brother’s choosing, but he is the one who has to hear her ask about Margie over and over again and must make excuses for where she is: Margie’s working mom. Yes, she does cook for me. Yes, she keeps a clean house. Yes, she takes good care of me.

Throughout the day, mom calls me: Sandy! It’s like an alarm. The same one that went off continuously when I lived at home and was trying to read or study or practice the piano. That annoying, intrusive alarm. It’s back. And as always, it is cried at the most inopportune moments: while I am on the phone with a client, while I am cooking, while I am showering, while I am gardening, while I am reading, studying, or practicing the piano. It’s back. I hate the sound of my name being called.

I pray. I ask God for forgiveness for being a bad daughter. I ask for patience. This is a daily practice. Rejoice in hope. Be patient in tribulation. Be constant in prayer. Help me to do this, Lord!