Because It Feels Good

I just taught Bo how to eat ice cream with a spoon.  Half an hour ago, I taught him how to eat baked beans.

Knowing that I should keep my mouth shut,  I still asked him,  “WHY do you do that?”

“Because it feels good,” he said.

I was stunned.  My question was rhetorical;  I didn’t expect an answer.  I was voicing my displeasure at something he did.  (Why do I do that?)

Because it feels good.  Is that really why he puts down his fork and eats with both hands? Why we now put a towel on the table in front of him to catch the food  that he drops or sometimes just puts there? Or did his real response get caught in his internal  map that seems to re-route words and ideas so that they come out garbled?

I’ll never know.

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The Garden

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Jon has a garden.  He fenced it in, built a swinging gate and a compost box, raised his beds and even built a double birdhouse with solar lighting!  It’s a few blocks away in our community gardens… a wonderful place to take Bo and Emma for time out in nature.  Bo even has his own chair there.

It’s not often that Bo goes, but last night Jon took him (and a big cup of ice cream) to sit  while he checked on his tomatoes and corn and harvested some beautiful vegetables.

I drove Emma down to take a walk, but she had only one thing in mind:  get to Bo. And when she discovered him eating ice cream …. !  They ended up sharing the same spoon.  Oh, well.

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It’s hard to believe Bo could even be sitting in the garden after the year that he has had.  I’m not sure he understood what he was doing there, but in his usual easygoing nature,  he just seemed to enjoy it.

I left with Emma, then Jon  finished pulling weeds and they went riding … and riding … and riding.  Came home at midnight!  He said Bo was enjoying himself so much,   keeping time with Jon’s loud music, “conducting” with his hands,   smiling and laughing,  that he just kept on driving.

The thing is that Jon can do things with Bo that I can’t because he’s strong and can handle any situation.    If Bo needs help walking or needs a restroom,  Jon’s there to help him.  I wouldn’t take him to the garden or to a picnic in the park because if he became too weak to walk, as often happens,  or if he fell,  I couldn’t handle it.  Jon can.

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Three Days Alone

While Jon and his family were on their trip,  I had a part-time caregiver, a wonderful woman who is kind and efficient.  But she wasn’t here every day so I was alone with Bo for three days…in a row.    Three days over the Fourth of July weekend.

Those three days emphasized, once again,  what caregiving 24-hours a day means:  Always on watch.

Luckily,  I now have a baby monitor so I can watch him from downstairs while he’s still sleeping upstairs.  I can sit on the patio or do yard work by keeping the monitor with me.  But I can’t take the dog for walks or drives, go to Starbucks,  shop for a few groceries, or run to the bank. Can’t take a nap.

I need to be there when he gets out of bed , walks from room to room,  goes to the bathroom.  (He fell out of bed last week.)  I fix his meals and sometimes have to feed him or  even awaken him if he falls asleep over his plate.    I shower and dress him,  make sure he gets his pills and enough liquids, and usually hold his hand to aid balance when he walks. Most of all, he doesn’t feel alone when I’m with him.

Jon’s better at giving him a shower; I end up completely wet and have to clean up the  bathroom then change my own clothes and wash all the towels after dressing him.

Entertainment is, for me, the biggest  issue.  How can I add some interest to Bo’s otherwise uneventful, sleep-filled life?  He can’t watch TV or read books or even have a conversation,  but he does  enjoy car rides.  Today I drove for 2 1/2 hours with Johnny Cash, Beethoven and Madonna. Bo liked it.   Emma dog liked it.

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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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