Camp has Begun

July is here and so is NancyCamp.  In fact,  two NancyCamps — one for the children and another for adults.  But at the same time that I am doing things I love to do,   Bo is just existing.  Every day the same … sleeping, eating,  sitting, an occasional car ride.

“Take car of yourself,” so many people say to me.  I know why they say it, but it’s a really hard thing for a caregiver to do.  I’m lucky because I can do things for me, but I think of all of the caregivers who don’t have help,  who can’t get out of the house.  Who are trapped in an endless nightmare of care and loneliness.

I was sitting in my car earlier this week,  Bo in the passenger seat,  waiting for the ShopRite “Shop at Home”  girl  to bring the grocery bags to the trunk of my car (a very helpful service.) As I sat there, I was facing a Hallmark store and thought to myself,  “I’ll go in  and pick out some cards that I need,” then the next thought was, “I can’t do that.  Bo’s in the car. ” He can’t stay in the car — who knows what would happen?  — and he doesn’t have the strength to go into the store.  Besides, if he could go in,   he would keep asking what we were doing.

Jon and his family are away this week.   When he said they would be taking a trip,  my heart flopped.  Our usual substitute caregivers weren’t  available; I would have to find someone else.  Who would it be?  Could I do 24-hour care for eight days?  Finding someone who’s kind, capable, dependable,  helpful,  who knows how to care for Bo,  isn’t easy.  There are many services  that charge too much and offer too little.  I saw it with  my mother  when she needed 24-hour care at the end of her life. “Caregivers” who plugged in their phones, turned on the TV, and ate her food.

I had saved the name of my mother’s hospice aide whom  she loved.  Again, I’m lucky.  She said yes,  she could help us,  so she is here most days for 6-8 hours and one evening and  I can get out. She is everything we needed — she’s wonderful with Bo.  Luckily, she has a good sense of humor because today he patted her behind and said, “Holy s—, you’re really big!” I guess you could say he has lost his filter.

Before the family left,  NancyCamp began with the two children.  On Friday we did our backstage tour (a success!) and on Saturday, despite cold rain and wind,  we took a boat ride through the tall ships on the Delaware.  We hoped to see the world’s largest rubber duck too but he was injured and  hanging pitifully over a pier on the Camden side.  No matter,  we had hot dogs and chicken sandwiches and took the kids’ pictures sitting in the  Philly sightseeing chair before Jon picked us up.  (He  brought Bo along for a ride in the city while we went on our adventure. Bo  seems to enjoy these outings.)

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 Yesterday was the second Adult NancyCamp. (Tuesdays in July.)  After missing the Philadelphia Orchestra concert last week because of the storm,  this was a good intro to our summer activities together.  We had lunch at a  local restaurant,  then strolled through Haddonfield looking at the paintings and sculptures along Kings Highway and ended by  buying  bestsellers in a new bookstore.  Oh, and a stop at Starbucks, of course.

Next Tuesday:  The Impressionist Exhibition at the Phila. Museum of Art.*  If anyone would like to join us, I have an extra ticket.

When the children return,  we’ll get back to their schedule too.  I have a lot of plans.

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At the Pool

I was sitting at the pool today,  looking up at the veranda where everyone enters ,  and a memory flashed by.  It was of me sitting there at one of the umbrella tables waiting for Bo to arrive. How happy I used to be when I saw my friend come down the steps towards me.

Bo wasn’t crazy about the pool, but he’d come for me.  Swim a while then sit under the umbrella and read the NYTimes or a novel.  After a couple of hours, he had enough heat and sitting still,   and wanted to play tennis or golf or DO SOMETHING.

Today I sat at the table alone, watching the two children playing in the water.  I had my computer, a book,  a bottle of water.  And money to buy snacks, of course… “Cookie Dough”is their food of choice.

School ended yesterday so Justin and Victoria are ready to have NancyCamp.  We’ll begin this week with a back stage tour of the Walnut Street Theater in Philadelphia and a boat ride.  I have the activities lined up.  It will be a busy summer because I’ve also planned Adult NancyCamp for July.

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Five-Minute Friday: Gift

(I wrote this for my other blog , “WordWaltzer,” but then decided to post it here too because the topic is still Alzheimer’s. Many of my readers already know this story.)

It’s Friday and time for Kate Motang’s 5-minute topic. Write, without stopping for five minutes. I did, but then I wrote 5 more and 5 more….

It was two years ago that the best gift of all arrived on my doorstep. I had been struggling with Bo and his Alzheimer’s alone for the past seven years — years that slid down the long exhausting slope toward Bo’s final stages, when I could no longer leave him alone in the house, couldn’t go for groceries or have lunch with a friend, afraid that he would wander, would hurt himself, would be afraid  ….. ? I didn’t know.

And then I found Jon, a caregiver who would come to the house and take care of Bo — and of me. A calm, mild-mannered young man with care in his eyes, in his voice, and in his hands. I watched him with Bo and knew he was the right person. But then his home burned, and he and his wife and two children, 7 and 10, were homeless, living in a church until they could find somewhere to stay. No insurance and stretched by two businesses, they weren’t soon going to buy or re-build.

As Jon worked with Bo, and I came to know him, the idea formed in my brain. It was possible. They could stay here in the basement until they found something else. The basement is finished, the house is large, we could do this. They could be comfortable; I would have company.

So one day when Jon and I were in the basement, I said the words: “You know, Jon. I think we could do this. You could move your family here for a few months. We could make it work.” He smiled and we began looking around, figuring out what would be needed, where each person could sleep. Later, his wife told me that Jon had joked with her, “I don’t know where you’re going to live, but I’ll be with Nancy and Bo.”

And so  they moved in, followed by Rubbermaid bins full of their few saved belongings. One box per person. All of the children’s toys had been charred– all of Victoria’s Barbie dolls, all of Justin’s stuffed toys. They brought donated towels, sheets and clothes. We found a bed for the parents; the children got a blow-up mattress , and there were already a table, desk, TV and chairs in the basement.

In my mind, I pictured taking turns cooking, them eating at their table together, Bo and me upstairs. We could alternate bathrooms and share the back patio. But that’s not how it worked. We just naturally blended into a family right away. As they moved away from their fast-food meals and homework done in the ice cream store late at night, we fell into a routine that has existed for almost two years now. We cook and eat together, watch TV and play games together, share the routines of cleaning, cooking, using showers, shopping. Celebrate birthdays and holidays together.

The children accept Bo for himself, even when he takes food from their plate or when Jon has to change him or he does something very un-adultlike. They are kind and accepting of whatever happens, their manners and gentleness always present. I have a family, Bo has care — great care — and this is the greatest gift I could have received.

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It Happens

When I came home at noon today,  grocery bags in hand,  I found Bo and Jon sitting at the kitchen table with Ronnie,  our Hospice nurse.

“Is that MY NANCY?” I hear Bo ask loudly.

“Sure is,”  Ronnie responded.  “Here she comes.”

I put my arms around him from the back of his chair, and he wrapped his around mine, in a good mood and  so much more animated than usual.  Obviously the three of them had been laughing about something when I came in.

Bo tried hard to tell me something that didn’t really make sense, but he was communicating.

“Good day,”  Ronnie said.  “I haven’t seen him this good in a long time.”  Jon and I looked at one another and smiled.

How do you explain what’s happening in Bo’s Alzheimer’s-riddled mind?  He was down,  so far down that we thought it was ending,  and now he’s better than he has been  in a long time.  In fact, Jon took him out for Five Guys hamburgers at lunch yesterday, then to the ice cream store for dessert.  He has asked for food and told us he needs to use the bathroom.  How long has it been since that happened?

Then I asked Bo,  “How are you feeling today?”

“Not so good,” he said.

“Really?  What’s wrong?”

He shrugged his shoulders,  “Shit happens.”

The three of us looked at one another and  laughed out loud.  Where did that come from?

Later, I walked Ronnie out to her car.  “It’s the high’s and low’s of the disease,” she said. “That’s Alzheimer’s. “

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And so, another month …. and NancyCamp

And so, another month has passed since I posted my last blog.  In that time, not much has changed.  Life goes on quietly and sadly.

Things are calm here right now. Bo “came back” from a very bad decline while I was away, not because I wasn’t here but because … who knows why.  His meds were changed, maybe it was that.  To be honest: simple things can cause a big decline in him.  He has good care, whether it is our part-time caregivers or Jon, who treats him like his own father.

Bo’s  decline was so bad that he couldn’t walk — just took mincing steps as we “pulled him” along and kept him from falling backwards. Didn’t talk, only slept, had to be fed. In fact, Hospice lowered his condition a level. Now he’s able to get up, walk, eat, communicate a bit; but even with this, his day is (usually) sleep (18-21 hrs.) and eat.

Some days Jon takes him out in the car, but I don’t even know if he understands what’s happening. They get ice cream  or drive me to Phila. for lunch with a friend. (While I eat, they drive around and get fast food.) He still calls me by my name or nickname and says “I love you too” when I tell him I love him. I think sometimes he has things to say but he just can’t finish the sentences.  Occasionally he makes a short comment that is related to what we’re talking about.

It’s summer again and time for NancyCamp** for the two children and me.  Our first activity was last Saturday evening when I took them to our own downtown (Haddonfield) to find the pieces of art that the Philadelphia Museum of Art has on exhibit* in public places.  We walked up and down the streets,  reading the information about each piece and taking pictures.

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*For local readers,  Haddonfield  is the only New Jersey installation of the “Inside Out”  art exhibition by the Philadelphia Museum of Art this summer.

**Also for local readers,  several of you told me that you’d like to attend an Adult NancyCamp.  I will do it in July.  Please contact me if you would like to join in the activities.

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The Overcoat

Today I cried about an overcoat.

I decided it was time to do some spring cleaning, so I began with our closets.  Bo’s clothes hang there, most never worn because it’s easier for him to wear warm-up pants and pull-over shirts.   There are still dress shirts and belts and slacks and ties in the closet.  And shoes and boots and ….

Last year I gave away his tuxedos and suits.  Kept one navy blazer,  just in case.  In case of what?  He will never go out again … to dinner … to visit friends … to a concert or movie.

Over the past three or four years,  I’ve added different sizes to his closet as he gained or lost weight, so I made piles of the larger sized slacks and tennis shirts, belts, sweaters, some shoes and a pair of snow boots to give to Goodwill.

And then, for some reason,  when I got to the coat closet and took out his overcoat, the one that he wore over suits on cold winter evenings,  I fell apart.

Jon saw me just standing there … “What’s the matter?”

That’s all I needed,  the tears came.  “It’s so sad.  He’ll never wear it again.  We won’t go anywhere together,”  I sobbed.  “Never.”

The coat — a symbol of my loss.

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Daffodils in my Orange Juice

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It happened last Sunday.  Bo was quite confused and quiet, but he was at the kitchen table eating his lunch, partly with his fork and partly with his hands.  The vase of daffodils was in the center of the table. I knew I should move them away, but I didn’t.

As Bo ate, I turned away from the table briefly to get something from the counter, and by the time I looked back,  he had put half of the daffodils into his glass of orange juice and most of the others were piled atop his uneaten omelette.

My immediate response (although I know better)  was to grab the flowers and say, “What are you doing?  Why would you do that?”

His response:  “I don’t know.”

I don’t know.  These words say it all.  He is confused, he doesn’t see things clearly,  he doesn’t understand many of the words or sentences he hears.  He doesn’t know what a flower is or even where he is much of the time, perhaps all the time.  He is lost in his world — how frightening it must be for him.

(Note – He is doing better now; has “recovered” from the infection he had two weeks ago, so he can walk with help and is much more active again.)

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The Fall

Bo fell today. Jon was with him so he was able to break his fall and he wasn’t hurt, but the fall is a sign of his condition this week. He has had another serious decline.  It may be an infection.  Maybe not.

The hospice nurse thinks he may have a urinary tract infection, a true enemy of the elderly, so we began antibiotics yesterday and Bo has shown some signs of improvement, but it will take a while to return even close to where he was a week ago. And as we all know, when an Alzheimer’s patient declines,  the recovery is never fully back to where it began.

Jon was away this week, so on Tuesday afternoon it was Caregiver Michele who awoke him.  Bo had no idea how to move his legs to walk or come down the steps. He became less communicative, his head drooped onto his chest, and he slept almost all the time, even when eating.  We had to feed him, to brush his teeth and shave him. We even used the wheel chair the two days that we did manage to get him downstairs. Emma stayed by his side.

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Now Jon’s back and today he has been able to walk Bo  around without the wheelchair but supporting him fully.  I couldn’t do it.

Food is  becoming more of an issue. Hospice explains that he will begin to “pocket” his food in his cheeks. He plays with his food, smashing it, moving it around, arranging the beans in different places, the fish on the side.  Often now we have to feed him, but sometimes he will refuse to open his mouth or just open it a little.  Then when we least expect it, he will pick up the spoon and eat his fruit by himself.

We’re sure he is having loss of depth perception or perhaps perception. For instance, I was trying to walk him to the powder room and when he stepped from the carpet onto the hardwood floor, he raised his leg high and took a step as if he needed to step down  (or was it up?) One thing in all of this that helps me is that he is now sleeping through the night.  I’m there beside him but I can go to sleep.

All of these changes make him more and more dependent on us, and  I know that if Jon weren’t here with us,  I couldn’t do this.  I would have had to find a residence for Bo, and my heart would be broken.

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A Single Bark

This blog is about my vacation, but it’s not my story; it’s Emma dog’s story. She’s wonderful, our family’s joy. She’s………amazing.

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Emma

While I was in Paris,   Jon had the double duty of both day and night care. We hired outside help for three nights, but all the other time Jon cared for his two school-age children, for Boris, Emma dog and  Charlie cat. A Herculean task.  Bo requires 24-hour care by himself.

I was gone four days when  Jon called to tell me the story.

He said that the night before he had been totally exhausted; it was three am and he decided to try to get a few hours of sleep.  Bo was snoring in his own bed on the second floor with Emma beside him, so Jon slipped down to his room in the basement to sleep until six am when he would awaken the children  to get ready for school.

But about 5 am,  Emma came down to him (she rarely goes to the basement) and barked by the bed to wake him up.  Jon’s thought was that she needed to go outside; she has been known to bark to awaken me if she has an emergency.  So he jumped up to follow her, but she didn’t stop at the door on the first floor. Instead,  she continued straight up to the second floor  bedroom where Jon found Bo wandering around, confused.

We know that Emma is concerned about Bo.  Twice he fell and each time Emma became excited, then sat and shook beside him.  She becomes upset if we are massaging his back and he makes an unusual noise.  She tries to get between us if we hug, and she wants to be a part of it.

But this was different.  Emma knew that he needed help and she knew where to get it.  She was taking care of her buddy.

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A Gift of Paris

People often caution me to take care of myself,  reminding me that the spouse  is under the most stress and is most likely to become ill. Statistics say the spouse often   gets Alzheimer’s too.  I understand …. the loss of sleep,  the stress, … the sadness ….

But I’m the lucky one, the one who has help; I have Jon who lives with us, along with his wife and 2 young children, so it’s possible for me to get out of the house. It’s even possible for me to go away on a vacation; in fact, Jon insists.

Last week I was in Paris,  a gift  so precious that I smile every time I think of my escape from reality,  a week to satisfy my thirst for travel.   Adriana (Jon’s wife) and I had a wonderful time crisscrossing the city on foot, by Metro, taxi and train, doing all of the wonderful big and little things that are Paris: museums, monuments, parks, cathedrals, chateaus, cafes, shopping, crepes and hot chocolate — even a fashion show at Galleries Lafayette.

When we returned,  I told Jon that not only did the trip make me happy and relaxed, but I also came home feeling physically fit because of all of the walking we did.  My knee, which usually bothers me,  didn’t hurt, not even once.  I slept well, ate well,  and to be honest,  I didn’t think much about home.  I knew Jon was here taking great care of Bo so I could feel normal for a week.

Adriana  started me monitoring the number of steps I take each day using an app on my phone,  and I’ve taken the challenge.  Now I’m taking Emma for extra long walks every day, with 10,000 steps my target. Some days I do better than others,  but I’m rather close to my goal… therapeutic for a caregiver.

As I write all of this,  I think of the many, many caregivers who have no respite, no way to feel relaxed or normal.  They live in their own prisons and this is the tragedy of Alzheimer’s and dementia — both people are trapped in the disease.

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