The 12-Hour Day

On Sunday I was alone with Bo because Jon and his family went out for the day.  How is it possible that I can view twelve hours with my dear husband as a stressful problem?  I feel so guilty just saying these words, but on days like this I don’t know how to fill up the time, what to do for twelve hours.  There’s nothing to entertain Bo except ride around in the car with Emma dog and eat.  And watch Bo.

It wasn’t even twelve hours, really, because I got him up, showered and dressed before noon; he was upbeat and easy as usual, willing to do whatever I suggested, so I put him and the dog into the car and drove to a local root beer drive-in (I’m talking car hops here — root beer on the side window,  delicious hamburgers and French fries.)  All went well even though his taste has changed so much that he generally doesn’t like many of the things he used to love — including root beer.

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Using the bathroom has  become more of an issue so I decided to come home to be sure he was ready for the next ride and then we would  drive … somewhere.  Anywhere.

Two hours.

As it turned out, it wasn’t an ordinary day for me  because of a shock which caused me great stress unrelated to caring for Bo.  On the way home from lunch, I stopped at an ATM to withdraw money but received the message:  “Overdraft.”  What?? That’s impossible!  My mind started to spin because three weeks ago one of my credit cards was hacked and someone tried to charge $30,000 of plumbing supplies in the Caribbean.  Could my identity be stolen?   I circled back around the bank and tried the same ATM again. Same message.

Driving home was excruciating.  No matter how hard I tried to think of something else, I couldn’t, and I knew there was no way I could use the computer or phone to clear this up until Bo was napping.  When he’s up I have to keep my eye on him.

To add to this,  when we drove into the driveway,  the questions began:   What are we doing here? and escalated into a 15-minute delay.  “It’s our house, Bo.  Yours and mine.”    I could tell that this made absolutely no sense to him.   “Do you know who I am?”  I asked.

He looked at me blankly,  “No.”

Then against all that I know,  I tried to tell him that this is our house and we’re married…. I’m Nancy.  I know better.  This accomplishes nothing.  It no longer bothers him;  he just sort of laughs  and I’m sad.  I’ve wasted my words — and time.

As soon as we got inside it was clear that  he had no plans to nap.  Instead, he kept asking me:  “So, what’s up? Where are we going? When are we going?” and his favorite, “So, what’s the big deal?”

I  gave up trying to convince him of anything, mainly because I was becoming more stressed over the bank.  Finally, he lay down for a short while and I began my calls.  (Turned out that my entire account was emptied erroneously to pay my  $200 Sunoco (car) gas bill!   Go figure. At least my account wasn’t stolen.)

Now, almost  four hours.

Just as I hung up from customer service,  Bo  came out to the patio and began the questions again.  He picked up a few leaves, asked what to do with them, then picked up a few more.  Again he asked who owns this place and why we’re staying here.  When are we going to leave?  Finally, I said that soon we would take a ride.

He hesitated, then asked, “Uh, what about the big problem?”

“What big problem?”

“The pritoris are coming.” (The protoris?  I had no idea what he meant. When I asked him, there was silence. )

I waited a few minutes then took another tack,  “We could just stay here.”

“For how long?”  I tried to explain but his reply changed the topic: “Are we going to have something to eat?”

Then I did it again, tried to explain something I should just leave alone.  “We just ate — an hour and a half ago.”  He looked at me blankly.  The next step was inevitable.”Are you hungry?” I asked, absolutely not wanting  to fix more food.

“A little bit but nothing dramatic ,” was his reply.  So  I went into the house to get him a bowl of peanut brittle ice cream with Oreos.  He followed me inside and ate, then went into the living room to lie down again for 20 minutes.

Almost six hours.

Then we went for an hour and a half drive  to nowhere with Emma.  She’s my excuse.  When he asks, which he often does, where we’re going, I say, “Oh, nowhere special.  We’re just taking Emma for a ride.  She loves the car.”

When we got home, eight hours had passed.  I know because I checked the clock often.  Now it was dinner time and while he sat at the table, impatient, confused and tired, I put together a meal as quickly as  possible and he ate, but not without the usual bathroom interruption which takes forever and sometimes requires  instructions.

At last, after his second bowl of ice cream,  he said he wanted to go to bed.  After I tucked him in,  I sat down on the sofa with a cup of coffee hoping that I wouldn’t hear those telltale footsteps upstairs that mean he’s up again.

Ten hours.

 

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Something to Do

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I came home yesterday from taking the two children for NancyCamp (more later), walked through the garage, and my heart melted. I nearly cried because when I left, Bo was beginning what would no doubt  be another bad day — confused,  bored, exhausted.  But instead,  he was helping Jon to re-pot some flowers for the backyard. Jon had to repeat his instructions two or three times for each step,  but he has  the kind of patience that I no longer have, and Bo was doing something useful.  I watched him “tamp down the soil around the plant,” as Jon instructed.

It is the purposeless life that makes it so hard for him, especially when we are alone because I don’t know what to do next to entertain him, but Jon is so good at caring for him.   He does most things now with Bo — gets him up and puts him to bed,  oversees his showers,  makes his meals.  Jon’s a good cook and we share the responsibility for dinners,  but he also does Bo’s lunches and snacks and makes sure Bo has enough liquids.

Recently, Jon has been working much longer days while I’ve had the chance to go out — with the kids, with friends (a televised opera last night), or just to take Emma for a ride and run errands.  I look at my life now and realize that there is no way that I could be doing this summer what I did last summer.  I was really reaching rock bottom when I found his help.

Today is another NancyCamp so the kids and I are heading out about 11.  Last week we went to the Museum of Art to sketch VanGoth’s Sunflowers and to learn about armor and arms (and make a silver paper helmet.)  Today we will start at the Barnes Museum in Philadelphia to choose and take a photo of our favorite Renoir or Cezanne or maybe some African art.  We’ll have lunch, then come back for our bathing suits and head to the pool till 7 pm.  Tomorrow there’s a play in the morning AND a play in the evening.

Last week we combined a trip to the Bugseum with lunch on the beach followed by the pool.  The highlight of the day was petting Rosie the tarantula.

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What Was I Thinking?

The Thinker

The Thinker

 Justin, Victoria and I visited the Rodin Museum on Thursday.  It was the first day of NancyCamp – the activities that I’ve planned for the two of them on the lazy summer days of June and July. I planned a photography contest for this outing – who could take the best photo of The Thinker? And, maybe we could find a Thinker necktie for their dad because his was lost and everyone wanted him to have a replacement. Both children were excited to go.

 Contest rules had been set: two categories (best Thinker photo and best of Rodin museum.) Jon and Adriana would be the judges.  They wouldn’t know which child had taken which photo as they viewed them on our TV.   Enthusiasm was quite high.

I found a great parking space under a tree right in front of the museum so as we walked up the path, The Thinker was the first sculpture we saw. The photos began immediately as I coached the two children on trying new and unusual angles and poses. They were snapping furiously, then  Justin’s camera battery ran out, so he had to switch to my iPhone, a brief setback, but he’s resilient and the contest continued.

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Then we toured the inside of the museum room by room – more sculptures, more photos, and some wonderful information by the docent. Did we know that Rodin was so jealous of the work of one of his fellow sculptors, Camille Claudel, that he slipped back into their shared studio at night and signed some of her work? (Later he married her. Go figure.) We discussed the story of The Burghers and compared the hand sculptures. Why is one pair nearly closed while there’s space between the others? (One holds a secret.) Stories to bring home.

As we left, we stopped at the gift shop and found – not a tie – but sox for Jon and a black baseball cap for Bo. Both had pictures of The Thinker on them. Then after a stop at a Mr. Softee truck for snow cones, we put our souvenirs into the trunk and headed back across the bridge to New Jersey.

It was then as I was driving home that it hit me: WHAT WAS I THINKING?

Why in heaven’s name would I buy a hat for Bo that has  “The Thinker” on it? Could there be a worse idea? $22.50 for a bad joke? Had I lost my mind? All the way home, I was thinking of the irony of him wearing the hat,  this dear man who can’t think clearly about anything. Luckily, when I checked the hat at home, it only has a picture on the front and the words, “Philadelphia Museum of Art” on the back — not the words “The Thinker” as I had convinced myself in the car.  He would have no idea what the picture is.

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Overall,  NancyCamp was a success and we’re going back to the Rodin at the children’s request next week so they can try their hand at sketching one of the sculptures. Next, we’ll go to see VanGoth’s Sunflowers at the Museum of Art.  No more souvenirs.

 

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Ice Cream

One Word Wednesday:   “ice cream” is this week’s word.

Ice Cream has changed the shape of my life. Ice cream and water ice.

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It’s  Bo’s favorite food group. Sometimes when I offer it to him, he understands and says yes, he’d like some. Occasionally now he may look for it himself, but it’s not often. Until a couple months ago, he foraged for it in the freezer, and I became very annoyed with him because he ate it out of the box with his hand. For some reason this simply set me off, but even while I was telling him not to do it, that people don’t eat with their hands, he would sort of laugh and keep on eating until I grabbed the box out of his hand. (This is one of the many times when I berate myself for lack of patience.)

Now, sometimes when I suggest ice cream for dessert, he doesn’t know what I’m talking about. “It’s cold and sweet and you really like it,” I say, and he says, “OK.” We try to make it extra appetizing with whipped cream and toppings, which he likes, and keep six half-gallons (well, 10 ounces or whatever the manufacturers think looks like a half gallon) in the freezer just for him.  Always.

Sometimes when he’s enjoying it, he’ll ask me where it came from or if it’s my “invention” (a joking way he’s had over the years of complimenting me when I served him something he liked.) If I say I bought it at the store, he says “Oh” but I wonder.  Does he know what that means?

Water ice has played a big role in my life in the past year because Jon* and his wife own a popular store not far from here. So, not only did I interview Jon in parkerswatericethe party room of his store (our first meeting last August) but we go there often now for a treat. It’s a destination when I take Bo for a ride. They keep me in full supply of my favorite flavor, cherry Bordeaux water ice (it has real bing cherries in it) which Adriana also brings  when she comes home after closing in the evenings.

Adriana and I have had a lot of fun trying some recipes for her ice cream cakes, especially icing so she can decorate them more easily, and we look new ideas up online.  We’ve had some especially interesting  kitchen adventures and a lot of laughs.images-4

Last week we had her sample ice cream cake in the freezer – a decadent layered creation that we all loved — and yesterday our freezer was filled with ice cream sandwiches; before that we had  new product flavors to sample.  (Jon creates all of his own recipes.)

So, not only have  our lives been enriched by Jon and his family living here, making life more joyful and active — more possible, but our waistlines are being enriched as well !!!!  How ironic,  this connection between Bo’s favorite food and Jon’s store!!

*(For those readers who haven’t followed our lives in the past year: after trying  unsuccessfully to place Bo in a memory facility last July, I brought him home and “found” Jon who is truly an amazing caregiver.  Jon’s home burned down so I invited the whole family to move in with us in November. Since then we’ve become a real family; they have decided to stay on another year and send their two children (whom I love) to our neighborhood school in the fall. All of this is such an amazing turn of events in my life. I can’t believe how fortunate I am.)

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A Room with a View

I’ve taken  the WordPress Writing 101 challenge: respond to a new topic every weekday in June.  I’m determined to do it and  will post some of my writing here.  Other posts will be on my second blog  (Fooddancer.wordpress.com) So here’s the topic for day #2: A Room with A View.

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I want to go back …. back eight years … back to the day that I stood in this open window and felt carefree, before we knew that Bo has Alzheimers, before we awoke every morning worried about the  new day,  about our future,  about the lonely decisions ahead.  I want to go back to normal days.  I want to have conversations with Bo that make sense.

On that day eight years ago I awoke early to the sound of doves and the warm morning light of the Dordogne. I dressed and  hurried quietly down the stairs  so I could be the first to open the kitchen windows wide and watch the fog rise above the beautiful French morning. The light was different, the landscape a deeper, richer color, a photo waiting to be taken.

The small hillside house in the French countryside is one of my favorite places. Everything about it was  quaint and charming: the gas stove that wouldn’t light, the old coffeepot, the tiny refrigerator, even the slightly musty smell.  I stood in that open window, coffee mug in hand  every morning  for two weeks, basking in the beauty.

One cup of coffee makes me feel creative — the caffeine high that turns talkative, stimulated. It’s cliche, but it’s true: I drink strong coffee and I want to write a novel, create a flower arrangement, go someplace special with my camera.  That first cup of coffee in our rented house in Peyrillac-et-Millac simply made everything more inviting, more … alive.

Those were the last days before the reality of Bo’s illness dropped a heavy cloud over us. In previous blogs I’ve described it as having a stone in my chest, the most accurate description I can give. After we found out, I would walk around our block in the morning or late at night taking deep breaths, trying to move that stone, and in several years  it did go away but  the cloud stayed.  Life was changed forever.

Today I shut my eyes and I’m back at the open window looking out at the lush green morning, the bowl of sunflowers on our wall, the peaked roofs on golden brown stone buildings, and for a moment I feel free and light.  I want that day back.

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Endless Repetition

In August, 2012, I wrote a blog entitled, “When are we Leaving?” I just re-read it and it’s almost a duplicate of this blog I post two years later:

Bo walks into the family room carrying the placemats from the kitchen table and asks, “When are we leaving?” and  while we have a “conversation,” he continues to examine them.

“We’re not going anywhere,” I say for perhaps the 20th time this evening.

“We’re not?”

“No, we aren’t going anywhere tonight.”

I’m tired. Bo’s tired. He doesn’t understand. It’s only 7:15 and I want him to go to bed. Please, I beg him silently, please let me sit on the sofa and grade my students’ final exams.

“When should we leave?” he asks again.

“We’re not going anywhere tonight.”

“We’re not? … tomorrow, though … What time should we get up?” He’s annoyed with me now and wants an answer.

I say we’ll leave at noon and he’s satisfied for a few minutes, but then he asks again.   He may eventually go upstairs and I’ll get him into bed, but an hour later he may also come back downstairs asking the same questions — the same questions he asked yesterday and the day before and the day before that.

When we were having this same conversation an hour ago, he asked, “Will they kill us?” This caught me off guard. Where did it come from? What ideas are intersecting in his brain?

“Why do you ask that?”

“I don’t know.”  He holds his head and looks worried.

We have imaginary conversations now.  Often I have no idea what his question is because the words aren’t real, so I try to second-guess his meaning, but he is still sharp enough to know if my answer is nonsense and it annoys him.

I tell him that we won’t be leaving tonight because …  the weather’s bad, there’s too much traffic,  we don’t want to travel on the weekend … whatever placates him for that moment. Sometimes Jon backs me up with,  “You don’t want to travel tonight, Bo. Nancy’s right, there’s too much traffic … ”  and he accepts it for the moment.  This helps to allay my growing frustration.

There are a few days when I can find something to occupy Bo’s time for a while. Yesterday I was baking a cake and he wanted to help.  He cleaned everything I used, even if I needed it soon again.   I put down the measuring cup; he washed it. I put down the spatula; he washed it. I finally gave him two mixed up decks of cards and asked him to arrange them into piles. At first, I thought he didn’t understand, but when I next looked he was hard at work placing aces on aces and jacks on jacks. He was occupied by this task which he sort of did over and over for about 40 minutes — this man who commanded a tennis court and played golf every day.

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ALWAYS

I recently connected with Lisa, a caregiver in Texas who has invited other caregivers to participate in her “One Word Wednesday” blog. She posts a new word each week and if it touches us,  we write  and link our response to her site.  The word last week was always.  I responded:

Your comment about “get up and go” really struck me. Bo has mostly slept through his days for a number of years now. Awaken, lie back down and nap. Eat, nap, shower, nap, walk outside, come back in and nap. This isn’t Bo.  All his life he has lived by the DO-THREE-BIG-THINGS-TODAY rule. He would always awaken early, often stirring me, asking, “So what are we doing today?” This meant: golf, tennis, water skiing, boating, going to the casino, going somewhere, doing something important. No down time for him. Many days I just groaned: Give me a break … I want to sit around and read a book. What makes me so sad is that I think he awakens now, doesn’t remember that anything is wrong, and thinks he can get up, headed into an active day. Occasionally, he even dresses and comes downstairs ready to go. But then, he is exhausted — eating breakfast wears him down so that he will almost fall asleep at the table. He sits, head bent over, so sad, and this is when he realizes but doesn’t understand the changes in his life. He will say things  like “I’m a zero. I’m not worth anything. I just need to die.” It breaks my heart.  Always.

(Visit Lisa’s blog at “MySweetPeanut.com”   or “One Word Wednesday” — links on this page.)

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Night Lights

It happened in January.

I wanted to watch Downton Abbey.  All week I alerted everyone in the house  that Sunday night from 8 to 10 there would be absolute quiet in the family room. Watch the show with me or leave. I had waited ten months for the fourth season of my favorite show to begin.

But then the evening unraveled and by the end I was so frustrated that I left the house with Emma dog.

During the holiday season I have a favorite place to visit: a house with very special Christmas lights. Probably many people wouldn’t understand, but visiting it can soothe my frustration. To describe the beautiful scene isn’t easy, but it’s a huge property with enormous trees scattered  around  the  front yard, and hanging from every tree are  spheres of light – beautiful handmade balls about 24-inches in diameter covered with all different combinations of LED lights.

Sometimes I sit there in my car with “Silent Night” playing on my radio; sometimes I am bold and I walk among them as they swing  in the winter silence — 100 beautiful balls – and for some inexplicable reason I am  calmed.  Most evenings throughout the holiday season Emma and I go to look at them, and  I try to absorb their beauty so I can remember them the other months of the year.

My January evening first started to fall apart about 8:05 when the family arrived home, and no matter how quiet they tried to be, I was distracted. Then Bo came into the family room from his nap in the living room, “Whatcha doing?” and sat beside me. He continued to ask questions. Then one of the children came into the room and asked what was happening on the show as  Lord Crawley entered his library with Lady Cora.  My stress level was rising.

“What’s that?” Bo asked, touching a candle on the coffee table, then he picked up the newspaper and asked, “What’s this?” I was really trying to stay calm – one eye on the TV, the other on what Bo was doing, but I was really irritated and sorry for myself. He continued and I reacted.  Jon saw me walk out the door with the dog, so he took over.

As I left the house with Emma, Downton Abbey was still on.  I  drove up the hill feeling guilty and talking to myself about how immature my behavior was.  After all, I could watch the show tomorrow on-demand.

But then I arrived at the lights and my whole outlook calmed. Emma and I walked among the trees in the silence and by the time I drove home I was back in balance.

 

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A Caregiver’s Vacation

I have been on vacation in the British Virgin Islands.  For a caregiver,  this is a dream – something we need so much, but it’s so hard to find a way.

I’ve loved travel since I took my first plane ride at age 22, and I’ve been a traveler all my life:  vacationing with Bo, with friends,  by myself.  In fact, I organized many trips to Europe as the tour guide.

 But sadly, things changed,  and after these past four years of staying home ( one overnight trip to my hometown to bury my mother’s remains) the idea of going on vacation was only a dream.  I could see no way that I could leave Bo alone; I couldn’t ask friends or relatives to relieve me.

 Then in November Jon and his family came here to live and life changed.  I started getting out to do things that Bo can no longer enjoy: the Philadelphia Orchestra, lunch or dinner with friends,  a play,  a board meeting, book club, even shopping. The restorative effect of these events cannot be measured.  No matter how much you care for the person you care for,  the unrelenting feeling of near suffocation is there.

 But back to Jon.  He’s always there now to give me support, as are his wife Adriana and their two children.  When Jon hears the rising tension in my voice as I try to stay calm with Bo, he comes to my aid.  More than once he has come into the kitchen and said, “Hey, Bo.  Let’s take a little walk.”  Or he has heard me upstairs getting Bo up or ready for bed,  and suddenly appeared, saying, “I’ll take over.  How about if you take a shower now, Bo.”  And I relax.

 So in November when Mary Anne called to say she wanted to charter a boat in the BVI’s and three of us would go for nine days – could I go if I started planning then? – Jon immediately said, “GO.   You need it.  I can take care of things here.”  I can’t describe how it felt to begin planning a trip.  Of course,  I felt guilt at the thought of leaving Bo home while I went for a good time,  but I needed it so much.  A caregiver forgets normalcy.

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 So now I’m on a US Air flight back from Tortola  on my way home.  I’ve had a fabulous time.  Yes, occasionally during the week  I felt sad to be away from Bo and wished so much that he could be enjoying life on the water that he loved so much, but at the same time I know that he has no idea what it even means to take a boat trip.  He has lost all of those wonderful memories of past cruises.  I stood in a gift shop one afternoon and nearly cried,  realizing that I wasn’t even looking for a shirt or hat to take home to him because he wouldn’t understand.

One night I dreamed that Jon told me he would be leaving in 12 weeks, and I actually awoke in a panic.  I texted Jon to tell him this, and he wrote back, “Don’t worry.  I’m not leaving.”  Such relief!

So, within hours my plane will land and I will return home  feeling relaxed and refreshed, and I’m sure I’ll find everything at home in great condition  –  cared for by Jon and his family.

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Winter Decline

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We were sitting at the dinner table.   A bowl of fresh daffodils was in the center, and Bo touched them,  then turned to me, “Should I eat these?”

Most things are strange to him now.

“What is that?” he asks, pointing to a red blanket on our bed.

“It’s a blanket.”

“What’s it for?”

Another time he sits on the family room sofa, leaning forward toward the coffee table.  He touches each thing on the table, asking what it is and what I want him to do with it – the TV control, magazines, newspaper,  a candle and the flower arrangement.  As he focuses on things, I try to divert his attention.  After the third or fourth time asking me what the control is, I get up and move it across the room.  It’s the only way to stop him.

This morning when he woke up,  I helped him dress.  I suggested that he brush his teeth, and he agreed,  so I put toothpaste on his brush and handed it to him. “What do I do?” he asked.  So I explained.  Then, when he was rinsing his mouth, he asked what to do again.

If I give him a pill, I have to explain that he should swallow it with the water, not chew it, as he did with his vitamin today.  But he does successfully take it.

Occasionally he will walk into the room, asking where he can go to the bathroom, so we must direct him there. He has no idea that he wears pullups instead of shorts, and has tried to wash them out on occasion.  But he very willingly puts them on with no resistance.

This noon I tried to explain to him that he should eat some wedges of a clementine.  I had a difficult time explaining that he do two things:  put his fork down and pick up the clementine with his hand.  Then, clementine wedge in hand,  he asked,  “What do you want me to do with it?”

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There is a bowl of orchids on the table today, and he asked what they were. He would have eaten one if I hadn’t been there.

The first sign of anything remaining the same after this long, snowy winter of decline  was yesterday when he went out to the front yard (in his pajamas) and picked up a handful of leaves, then  asked me where to put them.

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