A New Reality …

(This blog continues the August 2 post,  “Some Days are Just bad ….”   Jon and Adriana left; we had another caregiver during the week, then I was alone with Bo for three days.)

Jon reminds me that every time he’s away,  Bo declines and Jon has to “bring him back.” Well,  it happened again.   Since Bo had been doing rather well up until a few days before Jon left — I could get Bo up and put him to bed,  go up and down the stairs with him,  cook for him,  sleep with him at night — the plan was that Cynthia would come the first six  days from 1-10 pm, and I would do nights, but then I would handle the weekend alone.  That was the plan.

But the plan didn’t work. Bo declined so drastically — so quickly — that he was barely conscious;  so weak that I couldn’t get him out of bed because he might fall.   He was sleeping nearly all  of the time;  we could feed him small amounts of food but it required getting him sitting upright which was hard to do. He couldn’t follow  directions to move toward the pillows or roll over.   Getting pills into him was more and more difficult (crush them,  sprinkle them,  mix them with chocolate ice cream and chocolate sauce;  even mixed a crushed pill into a spoonful of orange marmalade.)

As the week progressed,  his continued decline was different from previous ones.  I saw new changes.  By Friday, when Cynthia left at 5, I was dreading the weekend.  She would  return on Monday noon. That meant that  I was to be  alone with Bo almost 72 hours. By Saturday evening after 24 hours alone,  I was almost desperate.  He was getting harder to move, to turn, to change.

In addition, on Friday he became more agitated — not really the right word — but he simply didn’t stop moving, especially his arms.   While sleeping  he would reach his arms out as if to touch something, then pull at the sheets,  then wave his arms around again.  Was he seeing something?  Was he having hallucinations?  We have anti-agitation meds which I gave him, hoping he wouldn’t feel as restless as he appeared,  but it didn’t calm him.

Also,  his sleep apnea set in, so extreme that his gasps for air could be heard throughout the house.  For the first time, I couldn’t sleep with him.  It was impossible.  I tried the floor,  then the hallway, then finally, I moved to another bedroom and hoped he would be safe in his bed because he hadn’t moved  for days.  I watched him on the baby monitor. He was  lying there moving his arms, pulling at the bed pads and sheets with his background of  heavy snoring and yawning. Sometimes when I walked quietly into the room,  he tried to talk to me between the snores as if he was asleep and awake at the same time, but he had no real communication left,  just gibberish.

Miraculously,  on Sunday morning Cynthia texted me that she could come in the afternoon to help me. I can’t describe how relieved I was, how grateful. She was with me from 2 to 7 pm. She bathed and calmed him and together we turned him on his side so for a few hours his apnea was quiet. She insisted that I LEAVE THE HOUSE to get a break. Emma and I just drove around, then stopped to visit a friend for a short while.

I called Hospice and asked that Bo’s nurse, Ronnie, visit us on Monday morning.  “He’s aged 10 years in the past week,” she said when she saw him.  He was so weak and unresponsive that we discussed some new things:  a reclining chair, a hospital bed,  an additional caregiver, what I will do if/when he stops eating … the kinds of topics that I have avoided.  When Hospice first began coming to us,  they sent oxygen and I hid it in the back of our closet.  On Monday when he had extremely bad apnea and was struggling to breathe, Ronnie suggested using it but  I didn’t;  I knew Bo would pull it away immediately.

Did he have a urinary tract infection?  Was it constipation?  TIA’s? We don’t know.

And so the nine days passed and by the time Jon returned on Tuesday, Bo was a little better, but Jon saw the difference in him.  This bout took its toll, although  after a few days, Jon had him back downstairs.  Bo is changed though.  It’s as if there’s less life behind his eyes…  not blank, but often unfocused, sometimes asleep.

For me, it was a rough nine days of decline,  and during that time, I had to face a new reality: I need more help.  I can’t — I don’t want to — do this anymore.  And so Cynthia is coming to help regularly when Jon has days off.  I still do nights and mornings while Bo  sleeps. But I’m tired;  we’re both tired, and Bo isn’t really living.  It’s so hard to watch.

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And summer comes to an end

Can’t believe it’s already August 22 and the last Adult NancyCamp event was last evening:  a 2-hour leisurely boat ride around Philadelphia.  It rained a little but it didn’t matter.  We had a good time. In a week the children will be back at school and their events will end.  One last, big one remains –  a trip to New York City next Sunday.  The Times Square Disney store is high on the list.

Despite all of the difficulties  this summer ( Bo’s declines,  my time alone,  searching for a second caregiver to provide extra help, new challenges with his illness)  my summer had some absolutely wonderful moments.  I did the things I love most:  visited museums, gardens, mansions; had afternoon tea and  lovely luncheons and even fit in a couple of concerts. All with good friends.  It looks as if Adult NancyCamp may be here to stay.

While I thrive on these outings, poor Bo sleeps,  sits passively with his head drooping,  is confused,  has difficulty understanding how to eat.  He went from the high point of visiting Jon’s garden one evening to an extreme low point when we thought he may be going unconscious.  We needed a hospital bed, help from Hospice.  It was terrible.  But he rallied, although not back to where it started.

His eyes look less bright,  his answers are slower and less cogent.  He taps me in bed and asks who I am, then when I tell him,  I’m not sure he understands.  Yet the next day he may be calling for me.

 

 

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Some days are just bad ….

Yesterday was one of those days, the really difficult kind that you can’t explain. Bo had been having a slump for 3 or 4 days — confused, not as strong, needed to be fed to keep the meal going.  Then came yesterday.

Early last evening Jon and family left for 9 days and I was alone with Bo.  He was on the living room sofa sleeping, as usual.  I prepared his dinner, then went into the room to get him up to come to the kitchen. (Jon was now gone perhaps 45 minutes. ) Bo got up with much effort on my part, and then I realized he needed very badly to stop on the way.  The bathroom is in the other direction, so I got him headed that way, holding both of his hands and walking backward to sort of pull him along.  But he wasn’t strong enough, nearly fainted, and we stopped at the base of the stairs, which we had to pass, where he could hang on to the banister while I figured out what to do.  His knees were buckling.

I ran outside and got a metal lawn chair,  grabbed a waterproof bed pad on the way, a rubber backed rug from the bathroom and got him seated.  As I kept saying,  “I’ll be with you in a moment,  don’t move!” I got a basin of water and supplies to correct the situation right there in the front hall.

When I was finished re-dressing him, I tried to get him into the kitchen.  He took 4 or 5 steps and hung precariously from the railing, so I got the chair behind him and he sat down.  Then I just put a TV tray in front of him, got myself a chair and his dinner, and fed him  there in the hall.

Friends were coming in about an hour to watch a movie, so I  propped Bo’s head on a pile of pillows on the TV tray, soothing him  and rubbing his back until they arrived.  Then Rodney and I started the job of getting Bo upstairs  to bed. FullSizeRender It was such a difficult job.  Jon knows how to handle handicapped persons so when this has happened in the past, he almost carried Bo to bed.  (One time he actually picked him up in his arms like a baby and carried him to the car.)

When we got Bo standing, our arms around him,  he couldn’t move because he didn’t know how to move his legs.  So I got in front of him and backed up the stairs,  pulling him and encouraging him with, “You can do this. You can.  Lift your leg,”   as Rodney actually moved his legs forward until he completed each separate movement.  My pulling him up helped. Finally we got to the top  where he fell to his knees and climbed the final three steps and into the bedroom where we were able to get him onto the bed. Not an easy feat.

I tucked him in,  turned out the lights and watched him on the baby monitor downstairs.  He didn’t move. I think this may just be part of the ups and downs of Alzheimer’s, but the timing was unbelievable.

It’s hard to know what to expect today. Will he be equally as weak?  or not? I plan to leave him in the bedroom and go there with him rather than risk the stairs.

Friends will be here this evening if I need help.  His other caregiver will be here afternoons and evenings all week, but I’ll probably be alone with him again next weekend until Jon returns, either Sunday or Monday.

On bad days like this,  I joke with friends, “This wasn’t part of the bargain.”  But it was.

(I am posting this story with its details because  people ask me what advanced stage Alzheimer’s is like.  This decline combined with his inability to finish sentences makes Bo so sad and, surely, he must be terribly frustrated.  I know that I am.)

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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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