October 8, 2015 

I dropped mom off at a nearby nursing home just 5 days ago. We parted tearfully. Mom didn’t understand why I was leaving her there. The home looked clean enough, but the floor she was on was clearly reserved for the demented of varying ages and conditions. Apart from mom’s woeful lack of memory, she is otherwise fine. Her instincts remain the same. She frets about cleaning dishes and putting things away and turning off lights. She demands that shutters be closed and curtains be drawn and doors be locked. She scolds when I go onto the porch without shoes or socks. She urges me to wear sweaters on the warmest days. (Some things never change. I was made to carry sweaters in mid-summer throughout my childhood and teen years!) And she asks where I bought articles of clothing I wear and how much I paid for them. The more expensive in her book, the better. She used to brag about the value of the Waterford crystal she invested in ages ago: 24 place settings—8 for herself, 8 for Margie, and 8 for me. Unfortunately, my nieces want no part of it. Too formal.

But there was mom—among the truly demented. I slammed things around the room, while the on-duty nurse looked. I admitted that I was upset about leaving mom. The woman merely replied, “I can see that.” Later, Lori, the nurse from the hospice facility, came in to assist. Lori made some good suggestions about lowering the bed so that mom could get in or out without incident. I began to feel more comfortable. It was good to have someone there with me who knew what mom needed. An assistant at the home had me fill out an inventory form, after which, I tearfully drove home.

I spent the next four days driving around Lancaster with my friends from college. The three of us had a wonderful time. We did everything from twist pretzels to eating ice cream at a creamery and visiting a chocolate factory. On the last day, we took the steam engine in Strasburg for a lovely ride through the countryside. Each night, we retreated to my back porch, where we drank wine and supped on salads and organic veggies and grilled whatever. It was a wonderful reunion—our fourth in as many years. I had been concerned about having enough room and being able to do enough with them. But this area is rife with things to do and see. I need not have worried, especially after my friend Nita had laid out our routes and carefully marked every spot of interest on a map. It will take some doing to exhaust the potential of Lancaster and Berks.

On Thursday evening, I drove over to the home to fetch mom. One of the aids said that she and mom became fast friends. When she discovered that mom is Italian, she asked, “How do you make your sauce?” I had a good laugh over that one. Recipes for sauce are at the heart of every Italian home. How much better to break the ice than to discuss cooking with an Italian woman. Mom had been in excellent hands.

Back at home, mom had absolutely no recollection of ever having been away. No memory of the facility at all or anyone in it. She will be returning again in a week for 11 days. All of her friends from hospice will visit and make sure she is well taken care of, but mom won’t remember a thing. Maybe that isn’t the worst thing in the world.

August 20, 2015 

Today was as special as it was exhausting for mom and me. My two nieces descended with the whole lot: 6 great-grandchildren to entertain mom. Five boys (including a set of triplets) and one lovely young lady. I made chocolate French toast, cranberry pecan French toast, and grilled maple apple sausage. I even had organic chocolate milk on hand and, of course, a bowl of freshly cut fruit. We cut mint from the garden and made mint tea. And the boys buried medals in the yard and gave me the chance to minister to a consequent mosquito bite.

I had never thought of my place as kid-friendly, but indeed it was. The children joyously climbed the horse chestnut tree, much to my delight. I had sworn to remove that tree and replace it with a smaller flowering tree. This spring, the arborists objected and asked me to give it another year. I had trouble parting with it so soon anyhow. It is still lovely and has such beautiful red spiked flowers in the spring. I told my arborists that I could not be there when they cut it down, and fortunately I spared myself that horror. How it lifted my heart to see these beautiful children climbing my tree. Their dad was on hand to help them and then there later to help them bury the objects in the yard. What a delightful day!

The hordes ran through the house as though they had lived in it all their lives. They went upstairs, downstairs, all the rooms. Even asked about playing in the basement, but my basement isn’t designed for play. Everything down there is neatly stored, but it is for storage. I almost regretted not having another play place for the children. Almost. Storage is at a premium here.

They are gone now. Mom is asleep on the porch, where she has been all day and away from those dreadful TV game shows. I am looking forward to the next visit and am planning to take my nieces and their children to Koziar’s Christmas Village. What a lovely trip that will be. It will be cold for sure out there in the country, but we will all warm up with hot cocoa and merriment.

If I could change one thing, I would ask that my departed sister-in-law join us. But then, maybe she was here today and maybe she will be with us again at Christmastime. One can hope and one can pray that her spirit lingers to watch over her children and watch her grandchildren grow.

My mother has always been good at asking questions., but she has never listened to the answers. This trend—if you want to call it that—continues. Her questions are limited to what she remembers to ask:

Where’s Rob? (She asks this continually throughout the day and peppers all talk with this question when he is not within sight.)

Where’s Sandy? (Rob hears this continually, too.)

And when you appear: Where were you?

What time is it? (Her attention is strongly focused on the microwave clock when she’s in the kitchen.)

Is it cold out? (We get this every single morning—summer, fall, winter, spring!)

Will you sleep with me? (This is always directed at me. And the answer is always a resounding No! If I give in to this demand, the child who is now my mother will never let it go.)

How did the white dog die? (This is a tough one. I am constantly reminded of Lucy’s death last fall. Mom won’t let this one go and asks it several times a day.)

Does your brother ever come to visit? (This question is directed toward Rob and it’s followed by a series of related questions.)

Where does your brother live?

Does he have any children?

Are your parents still living?

She directs the same questions about my house to me:

How long have you lived here?

How much did you pay for this house?

Who owns this house? (I usually tell her the bank owns it.)

Where is this? (She refers to the State we are living in and always seems surprised when I tell her.)

And some mornings: Where are we going?

And when I get dressed in the morning:

Where did you get that? I like it. You always dress so nicely.

And when it’s time for her to go back to her room or to the bathroom or to the kitchen, she always asks:

Which way? or Where is it? (Bear in mind that there are only 4 rooms in which she navigates: her bedroom, the bathroom, the kitchen, and on rare occasion the living room or the porch.)

 

When my brother comes to visit, she asks:

How is Margie?

Is she still working?

Does she cook for you?

Does she take good care of you?

 

When my brother mentions his daughters, she asks:

Does she have any children?

How many children? 

That’s about it. Right now, mom is in the kitchen. She has already asked, Where’s Sandy and What time is it? Her response to being told the time is always the same: Oh my God, I can’t believe it. But as I noted, mom never stops to listen to an answer. This is a lifelong habit resulting from her poor hearing. You can tell simply by the speed of her response. On a typical morning, it would go something like this:

Rob, does your brother ever come to visit?

Yes, he came to visit in…

Oh.

Is it cold outside?

It’s nine-…

Oh.

Does your brother have any children?

Yes, he…

Oh.

What time is it?

It’s…

Oh.

Where’s Sandy?
She’s wor-…

Oh. 

Sometimes we barely get the words out before she responds with her inimitable Oh or Oh my God, I can’t believe it. 

Oops, mom just asked another question, a recurring summer question: Do you see that bug? Mom and my brother share a bug phobia. 99% of the time, there is no bug. Other times, she is referring to a bee on a plant out in the garden. My brother shares this phobia with her.

And the grand finale as my mother emerges from the bathroom: Where were you all day, Rob?

Who responds, Sitting next to you.

Oh, I don’t want that bug to come in.

Please don’t ask how I am doing with all this. Enough with the questions already!

 

 

Every day, mom comments on my clothing. She was always a clotheshorse herself and bought me some incredible outfits when I was growing up. I remember going to Fisher Bros. down in New York’s Bowery, then known as the garment district. Fisher Brothers was a building several stories high—I cannot recall how many—where men, women, boys, and girls could be fitted for coats of extraordinary style and quality. All made in the USA! (Those were the days. My dad would always join us for the trips into Manhattan. We’d then adjourn after a day of shopping to some wonderful Italian restaurant or other downtown and then to Ferrara’s in Little Italy for dessert.)

Yesterday at the farm, while I was giving tours through the main house, I called attention to the quality of the woolen coats hanging on the acorn hooks. (Farmhouse homes at the turn of the century did not have closets, but used hooks mounted on bedroom walls on which to hang clothing.) The coats were of such a fine and thick wool, they will probably last forever, or at least as long as the moths will permit it.

Today, I was wearing a shirt that was made in the USA. (I search as often as possible for things made in this country.) Mom admired it, saying, You always wear nice things. As usual, mom asked where I bought it. Sometimes I merely say the store or a catalogue. This time, I told her that was from Hawaii.

Where’s Hawaii?

Well, it’s a state at the far western end of the country.

Ooooh, they have nice things. 

I promised mom we would go out later. I hope she doesn’t ask to go to Hawaii.

Monday, August 17, 2015 

Been a long summer. Mom was signed up with hospice, but I don’t know how long that will last. Hospice provides a valuable service and gives me much-needed moments of respite. Mom, however, is far too healthy to be considered on the decline, at least actively speaking. Of course, she has her good days and her bad days. Don’t we all.

Hasn’t been a terribly hot summer, but yesterday, was an exception. I was at the farm, serving as a docent for the main farmhouse. It was blisteringly hot. Breathtakingly hot. Boiling hot. Un-bearably hot—there’s a “b” in there to sustain this alliteration. And it wasn’t a good day for me.

But for mom, heat is a blessing. She starts every morning with the same question: “Is it cold outside?” I often remind her that it’s summer, but with her native cleverness she replies, “That doesn’t matter. It can be cold in the summer.” So I lose that argument. Yet, trying to convince her that it’s warm or hot outside isn’t easy. Merely noting the temperature does nothing to persuade her. Mom is naturally cold these days—hands and feet especially. She often asks to wear her Polartec jacket on the worst days. Of course, we do have A/C; however, seeing her dress for autumn does nothing to make anyone around her more comfortable. Yet can serve as a reminder of more comfortable days ahead.

Venous insufficiency is a bear. What’s comfortable for me is not necessarily comfortable for her. Nonetheless, the disparity in sensing the heat can become a point of frustration. Like everything else, I see something one way and mom sees it another. Some things never change.

Friday, June 26, 2015 

Yesterday, at the Farmers’ Market, a lovely couple—Michelle and Clifford—came by to purchase a bottle of wine. They were in town for the funeral of a pastor they had known. Their visit to the winery became a blessed opportunity for prayer. I asked them to pray for me and my mother and tried to convey how difficult it is taking care of her. Michelle told me that I should try to find moments of joy here and there to hold on to. It was such a cheerful and healing thought. I clung to it all night at the winery and decided I would practice finding and relishing moments of joy with my mother. I decided to review these moments at the end of each day to prevent the worst moments from being played over and over and over in my head.

When I returned home last night, Rob said mom had had a bad day. She had called for me every 5 minutes and asked where we were going or when we were going. Rob tried to tell her that I was at work and that we weren’t going anywhere. But that didn’t stop mom. Sure enough, mom called for me as were standing there discussing her. Again she asked where we were going and when. I assured her we were not going anywhere. At that moment, she reached out to touch my blouse, as she often does, and said, This is nice. Where did you get it? I like the color. So I chose this as the day’s moment of joy. To be sure, mom almost always comments on my clothing, even when I am wearing dirty and worn gardening clothes. And she always asks where I bought the item of interest. My usual reply is that I bought it at the store. Mom is unaware of the shops around here and wouldn’t remember one from the other anyhow.

Still, mom’s reaching out and saying something sweet became my day’s Moment of Joy. I would love to find Michelle and Clifford to thank them for their sublime message, kindness, and prayer. Lacking that, I will thank them through the Lord. I had started the day helping Mark and Janine weed and mulch their shop front. By the end of the day, I was tired and cold and dehydrated, despite my efforts to drink enough water. But the Lord sent the troops in to rescue me and provided a true moment of joy. Praise God!

Tuesday, June 23, 2015

5:46 am

Valentino: Bark! Bark! Bark, bark, bark! (transl: It’s Duke. It’s Duke. Hi Duke. Hi Duke!)

5:59 am

Mom: Miss! Oh Miss!

6:07 am

Valentino: Bark! Bark! Bark! Bark! (transl: Harpo! Hey Harpo! It’s me, Valentino! Hi Harpo!)

6:20 am

Mom: Nurse! Oh Nurse!

6:47 am

Valentino: Bark! Bark, bark, bark, bark, bark! (transl: Mom, someone is walking past our house! Look, look, look! There she goes!) Bark, bark, bark, bark! (And there go Steve and Nittany! Oh this is so much fun!) BARK! BARK! BARK! (AND MY BEST FRIEND BUDDY!!!!!!!!!)

Mom: Shut up! Who’s making that noise!

7:00 am

[The phone rings, as it does every morning. It’s Betty calling to tell me she’s on her way for our morning walk. Valentino is already at the door.]

The wake-up calls come at around the same time every day from Valentino and Betty. Mom’s calls are sporadic and she calls whoever comes to mind. Some days are better than others. But you don’t often get to sleep in. Not in this house.

Mom calls for tissues, for something to drink, to have someone cover her, to have someone take her to the bathroom (although sometimes she goes on her own), for more tissues, to ask if you will sleep with her, to ask about the man in the tree or the cat on the fan, to ask why the lights are on or why the fan is on—Do you need that light? Why is that fan running?—and to tell me that her mouth is dry and can I do something about it.

Excuse me, mom is calling me now. She has finished her supper and wants me to take her plate away. Mom will call until I appear. She’s far more relentless than Valentino. If I but appear in the living room where he stands on the two-dog windowseat to observe passers-by, he will sit and stare silently at me. Mom never shuts up!

Monday, June 22, 2015 

Yesterday, mom sat at the kitchen counter and asked what the Word Search book was all about. She denied ever having seen it and had no knowledge of ever finding a word in it. The book before her was her fourth or fifth in 2 years. As much as I understand that she really does not remember, I have serious trouble putting it to rest. I want her to remember. I want her to realize that she herself had circled all the words. I want her back to wholeness. But my wishing or hoping anything will not change a thing. Such is the heartbreak of having a parent with dementia.

Then, of course, you wonder whether you, too, will wind up not knowing a thing and requiring someone to help you with your toileting, with every daily task. So you read, you study, you practice, you do what you can to hone your mind, your memory. And you wonder: Will all the plants I know by their Latin names be lost to me someday? Will all the music I know and love remain in my heart and in my memory bank and on my fingertips? Will all the languages I have studied lurk somewhere in my soul or will I lose all ability and be stuck knowing the one language for which I have the least amount of vocabulary? The only thing to do is to STOP THE MENTAL PATTER!

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment. 

 

Sunday, June 21, 2015 

Sergeant Schultz and my mother have something in common. She knows nothing! I joke now, but a few minutes ago, I was crying. The thought of aging like my mother is extremely depressing. This morning, she denied ever having done a word search puzzle, saying she could never do those puzzles.

As it turns out, last night was a horror—for Rob. I was away. I had driven my neighbor Betty to her grandson’s dance recital. It was one of those 4-hour ordeals, but the second half featured the older dancers and the instructors and was quite nice. I was tired after a day’s work, but I could never leave Betty. Her mother had abandoned her when she was 5 years old and Betty faces terror every time she is left alone when she is away from home. Betty still has recurring dreams about being lost and abandoned. Even though her son and daughter-in-law could have driven her home, I was the one who drove her there. To have left her side would have approached abandonment and might have triggered one of her nightmares. So I stayed.

We rode home together in the driving rain. I took a wrong turn in the dark—unfamiliar territory at night. But we made it, and Charlie was waiting at the door for Betty at their house.

Meanwhile, back at the ranch, Rob recounted Valentino’s tromp through the neighborhood. Apparently, the back gate had swung open and Val found freedom. As intoxicating at the night might have been for Val, Rob wasn’t too thrilled. He and one of our neighbors went in search and found him returning home from a visit to Betty’s house.

On top of that, mom had one of those nights with frequent trips to the bathroom. Rob had to clean the bathroom four times and finally had to change mom’s nightgown. I felt terrible for Rob being left with this onerous task.

This morning, I showered mom, then sat her at the kitchen table, where even now she is reading the microwave clock over and over. What time is it? 10:43? Oh! The time is a continued concern for her, perhaps because she has so little time left.

Mom had pulled her word search book open and asked who had filled out all the puzzles. I told her that she had. But she insisted that she had never done one in her life. Rob assured her she had and then went downstairs to get more coffee for the Keurig. As soon as he left, mom asked whether Rob was up yet. I reminded her that she had just spoken with him. Mom looked at me blankly.

I myself feel much like Sissy in “Quartet,” who remarked about Beecham Home for Retired Musicians, saying, “I have no husband and no children. This place is a godsend. It’s all I have.” Sissy, however, had Beecham House, where she could still perform or listen to lovely music. My prospects are far more meager. I cried this morning as I listened to the Schumann piano concerto. Beautiful music. At this writing, however, I am listening again and more at peace. In the same film, Reginald (“Reg”) remarked about aging: “It’s what we all do.” Maggie Smith’s character was not easily consoled when she was reminded that she had repeated something, and I understand completely. If this is where we are headed…

Last night, it was actually refreshing—opon reflection—to have seen young people forge ahead with life, totally unaware of what will lie ahead. Thank God they are unaware. Still, it’s wonderful to reflect that there is life ahead. That something can still be accomplished while you can. Tony Randall noted that he wrote his first book, had a child, and realized his dream to revive plays on Broadway at the age of 70. It was a remarkable accomplishment and an uplifting observation. We can all still do something. What, I don’t know. How many more lives we will touch, I don’t know.

But for mom, she is locked in this tiny little world, moment to moment, and each moment is a new one. Then again, maybe she isn’t locked up at all. Maybe mom, like Valentino had for a short while last night, found freedom for the short while she has left to live.

Thursday, May 21, 2015

Mom is ill. I had feared a bladder infection with possible sepsis owing to her withdrawn behavior and her refusal to eat anything but breakfast. After a bad night, I took her to Dr. S, who noticed that she was “not herself.” Mom wasn’t joking or asking him if he were married. She would close her eyes from time to time and rock a little in her chair. Dr. S. listened for rales and had his PA listen, too. Then he sent us off to the cardio unit nearby, where they took blood and an x-ray of mom’s lungs, revealing pneumonia in both lungs.

I had made the appointment with Dr. S. only 30 minutes before we were to arrive. I thought we might have to wait, but we did not. Dr. S’s observation of mom was very touching. He knows her only from our visits, but never missed a trick—or one of mom’s tricks. She always admired the color choices in his examination rooms. She would ask about him or his family or comment on his eyes or ask where he is from. (Mom is a flirt!) Mom is no longer flirting, and she is very tired. Hoping the levofloxacin does the trick. Mom did have the pneumonia shot some time ago, but she is wearing out. Could be that the stay in the hospital back in March precipitated all this. Who knows?

We are applying for hospice now. Need more help. Just a little. Rob cannot accompany me to this morning’s funeral. Two funerals this week—each mothers of friends. Someone needs to remain at home with mom. It’s a tough time. You don’t know what will happen from day to day, moment to moment. You pray your own mother will not be the third funeral of the week.

Mom complained of having dry hands this morning, but I had already put almond lotion on them. So I tried coconut oil. Hoping that will do the trick. She seems to be more comfortable now. Am wondering how dry hands figure into this current problem. Wondering if her circulation is being further compromised by something. Her feet and ankles are no longer swollen. Of this, Dr. S. was pleased. That might have suggested congestive heart failure. Thus far, so good.

Well, we will watch and wait and hope that—above all—mom will be comfortable. This is our goal, Dr. S. included. This morning, mom asked why God doesn’t take her. I told her that He wasn’t ready for her yet, but I think God is giving me time to get ready!