Aces, Kings and Queens

I haven’t written a blog for a month, mainly because nothing big has happened.  As our Hospice nurse said,  it’s a plateau.  If anything,  Bo has been better ….  up earlier,  awake longer,  eating three meals,  sleeping better.

But there are little things that we notice, changes that illustrate his decline.

One afternoon t wo weeks ago, for example,   I gave Bo two mixed up decks of cards and asked him to “help me”  by arranging them in piles.  It took a long time, but there were piles of  cards — aces on aces, tens on tens, jacks — a job well done.

P1030404Yesterday I gave him the same job to do, but  this time after an hour at the kitchen table, he couldn’t do it.  He was so confused, that I wasn’t even sure what he had tried to do.   It was as if he couldn’t tell the difference between the cards …. Did an Ace look like a ten?  A Queen like a jack?  When I tried to help him,  it was obvious that he couldn’t understand, so I removed the cards and took him into the family room to sit.

P1030406

We’re also noticing that he has more language problems.  Today at lunch he couldn’t form words, just spoke a sort-of gibberish.  Jon commented that his eyes seemed to be less focused, a blank look.

And the sundowning continues, filling many evenings with anxiety.

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A Moment in Time

(At WordPress,  a daily topic is posted.  One day last week, this was it:  “What was the last picture you took? Tell us the story behind it.”)

Coincidentally,  I had taken this picture the same day.  It’s dark and shadowed, but the story it tells is a reflection of Bo’s day.

IMG_1372

He had his breakfast, followed by a nap.  Then he walked into the family room, lost and sad.  “What am I to do?” he asked, as he sat in one chair and leaned his head on the back of another.  A picture so poignant …. my heart broke.

The most active person I’ve ever known doesn’t have the energy, the strength,  … the ability to do anything.  He doesn’t understand most things, but I think he does understand that he’s lost in a  world that makes no sense.

He has been crying every couple of days, and when asked what’s the matter, he always says, “I don’t know.”

And so  Alzheimer’s holds him prisoner as he eats better,  gets up earlier, and seems stronger while the cells in his brain are erased and his mind fails him.

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My Sense of Humor

I’m trying to keep my sense of humor.

Bo’s brother called this morning and after I told him a few of the things that are happening at home, he said “Thank you” to both Jon and me for taking good care of his brother through some very rough times.

My response was, “Well, after all of these years with Bo,  he’s teaching me to have a sense of humor about a lot of things that would have really gotten to me in the past.”

Things like:

Two days ago, I made him a good lunch — fresh sliced chicken sandwich, pickles, chips, ginger ale.  I set it in front of him and turned to the sink to pick up something, and as I looked back, he was pouring his ginger ale all over the sandwich.  I grabbed it, threw the soggy bread into the sink, and re-made the sandwich. ( I am proud to say that I didn’t say what I was thinking. Not that time.)

He picked up the tray of jigsaw puzzle pieces we were putting into our”Paris” puzzle and just tilted it onto the floor.  (What was I thinking having it on the table?)

Instead of eating his coffee ice cream with chocolate sauce,  he just stirred and stirred it, obviously not understanding what I meant when I said to eat it.  When I hand-fed a spoonful to him, he liked it, but then he went back to stirring.  And stirring.

For days now, he hasn’t been able to sit still. And he has become strangely conversational.  He will try to have a long conversation with me — actually an explanation that he’s trying to make — but it makes no sense.  I try to respond sensibly, but it’s very hard.  Often it seems to be about some problem someone is having or something that needs to be done, something that involves multiple steps.  He becomes frustrated when I don’t understand.

 

Oh, No!

Oh, No!

But the topper:

Last evening I was sitting with him at the kitchen table — my lap top in front of me — while he ate ice cream.  Again, I turned my back to grab something, and as I turned back, he had already poured his water on my keyboard.  What I think he actually did was lay the napkin on the keyboard and pour his water over it.  Whatever he did …. I drove through the snow and am now typing this blog on a computer at the Apple store awaiting my turn at the genius bar for repairs.

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Well, the genius just told me that any damage to my keyboard is permanent.  I might try using an external keyboard, or if mine needs to be repaired, it goes to factory and the bill will be $1290.00.  Or a new computer for $1500-2000.  NOW my sense of humor is being taxed!

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72 Hours

Bo is in the kitchen – alone – and I can’t leave him there without watching him every minute; I can see him from here.  I’ve been doing “full time duty”  since I got home from Florida on Sunday night — that’s 72 hours of caregiving (plus tonight and tomorrow morning.  That will be 84. )  Then Jon and I will return to sharing;  I wanted him to get a break.

Last night Bo was up 7 times, so I was up 7 times with him.  Today, he got up about an hour after I got up, and has been going strong since then.  He has been active — gone through the plants, all of our Christmas cards (which he can’t read),  the Sunday NY Times (which he can’t read),  spilled food at each meal,  made a soapy mess at the kitchen sink,  wrapped the TV controls up in newspaper and threw them away; tore his napkin into small pieces and mixed them into his orange juice; moved furniture, and asked questions I couldn’t understand.  Just couldn’t settle.

I just got him to lie down on the sofa and quickly sat back at my computer, but he was up immediately.  I never know if he might  get up right away looking for something else.  In truth, he wants to go, to go somewhere.  Home?  I tell him we’re going nowhere; we live here; and anyway, it’s snowing and I don’t plan to drive.  He says, “Oh, OK” and five minutes later tries again.

Jon pointed out to me today that he sees a decrease in Bo’s perception  He tries to pick up the flowers in the carpet,  wants to eat the flowers on the plate.  He can’t connect ideas.  You may say that something is in his pocket and he’ll point to the book case:  “Here?”  Then the table:  “Here?”   What we can’t figure out is if he doesn’t understand the names of things,  the whole idea or just part of the sentence.  He needs to go to the bathroom but can’t tell me today, just holds himself.  Tomorrow he may be better.

The Hospice nurse told me yesterday that she sees him as being on a plateau.  It can go up or down.

 

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On The Way Home

And so after an absolutely fabulous week, I’m on a Spirit airplane, headed back to a raging rain and ice storm and a 45-minute ride on a potentially slippery highway toward home.

I’ve been in touch with the family throughout my 6 days away, and today I got the feeling that Jon is reaching the end of his caregiver rope. I told him that I don’t want to come home, that “I will send money and see him in summer.”

His reply was, “I don’t think you have enough money!”

One good thing is that Bo hasn’t been asking for me all the time or asking to go “home.”  Apparently he has been quite calm all week, but he did try to pull my plants out of their pots.  I suppose he thought they were weeds in the living room. Adriana sent me a pictures of Bo sleeping on the sofa with Emma beside him and of him on the floor petting Emma. Good pals.   Apparently poor Emma’s not happy today  because of the weather – refused to go out last night or this morning; she has an amazing bladder.

Jon reported that he has had 18 hours of sleep since I left. That’s not a lot of sleep. Adriana took two nights for him, and 12-year-old Victoria did day duty on Saturday. (That translates to listening or watching for Bo to get up then go get her father.) Justin helped too.  And so everyone has had a part in making my week possible.

I feel rested and refreshed after another wonderfully relaxing day and  I’m ready to go home to do my caregiving.

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A Winter Less Bleak

On her blog, Carole Knits posts a weekly “Ten on Tuesday.”  This week’s topic is “Things to do to make my winter less bleak … ”  

I don’t need to post ten things, although I could surely think of ten, but one thing has happened that changes everything for me this week.  I am in Florida.

Yes, I said Florida.  Jon (Bo’s caregiver)  insisted that I get away from home to get some sleep and relaxation, and when I was making the flight reservations, he hovered over me, insisting that I go for a week, not the 2-3 days I was planning.  So I “compromised” and am here for six days.

I was sick all last week,  no voice,  sore throat, raging sinus headache …. you know,  feeling terrible in general. I couldn’t wait to sleep without interruption,  to swim,  to read and relax.  I was here two days and already I felt better.

It was hard to leave Jon doing 24-hour caregiving.   I know I couldn’t do it, but Jon insisted he could;  Adriana (his wife) will help.   I tried to convince him to let me call in another caregiver to relieve him, but he said no.  He was so enthusiastic for me to get a break, so happy for me.  He even stayed up the night before I left at 4 am  (for the Atlantic City airport) so he could awaken me at 3:30 am and put my suitcase into the car.  Then he would begin his demanding week.

When I called last evening, Jon told me that Bo hadn’t asked for me, but he had been somewhat resistant a couple of times.  This morning Adriana told me he was asking for me, then called her “Nancy.”  One time he had refused to lie on the sofa but sat on a chair in the living room instead, so Jon played the  piano beside him.  Soon  Bo was crying, tears running down his face.  When Jon asked him what was wrong,  he said he didn’t know.   It was so sad.

And then Jon said to me:  “I’m OK. I don’t want you to worry about things here.  We’ll be fine.  Don’t call because you’ll be thinking of us instead of enjoying yourself.  Just relax.”

So I’m taking his advice. I am getting full nights of uninterrupted sleep, and  I start my days with a swim in my friend’s pool and some time in the jacuzzi,  then a loooooooong shower and  a big breakfast overlooking the inner coastal waterway.  This is heaven!

 

 

 

 

 

 

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Sleep Deprivation

Last night was the worst night for me, possibly for Bo too. I didn’t sleep at all, not one hour, not 15 minutes, so he didn’t either. I’m usually up by 8 but today I wanted to stay in bed; however, Bo was awake, talking to me, getting in and out of the bed.

At ten I gave up and called downstairs to Jon for help: “It’s your turn! I can’t do it another minute.”

The sundowning is increasing. Or, knowing how unpredictable Alzheimer’s disease is, maybe it’s getting worse, then will calm for a while, but the past couple of weeks have been hard and I’m so sleep-deprived that even my memory is affected. I walk from the kitchen counter to the refrigerator to write something on the grocery list but can’t remember what it is.

Between dinner and midnight last evening, Jon was with Bo, and when he finally put him to bed, Jon said he doubted that Bo would sleep because he was non-stop throughout the evening, wanting to “go home,” asking what everything was and what it was for, not understanding what was said to him or what to do, simply unable to be still. This is agitation although it’s not what we think of as nervous, frenetic agitation. I have to wonder if this continuous motion is as awful for him as it seems.

Bo’s Hospice nurse has helped us with the medications that are typically in a survival kit that includes sleeping and agitation medications, but so far, nothing has been effective. Should we increase dosages again? I have to discuss that with her. Several nights ago I gave him a second medication that was prescribed but we thought it may have further agitated him; he stayed up almost all night.

When I went to bed last night, no matter how hard I tried to make no noise, no movement, when I slipped under the covers, he was awake –asked me a question. But the question was gibberish, and from that moment it continued – up every hour to go to the bathroom, talking to me in bed, moving to my side and patting me, rubbing my back, asking questions. One time his legs were off the bed and I felt the movements so I got him back in and settled; another time he pushed all covers aside and was kicking the bed.

“Hey!,” he asked loudly, “ what am I supposed to do?  When am I going to leave?” Another time he asked, “When are the people leaving?”

He asked if it was raining, what time it was, what the dog was (she had jumped onto the bed between us), and time and again, asked if I was OK. I would just sort of doze off and he’d ask it again.

There’s a certain streak of electricity that goes through the brain when you are just starting to slip to sleep and something interrupts it. It’s almost as if a nerve has been touched. After so many times, it’s almost painful, and  by morning it had happened so many times that I just wanted to cry.

When I called to him, Jon immediately got Bo up and dressed and said he would keep him busy all day, making him so tired that he would sleep tonight. He took him shopping, ran errands and ate out, determined to break the cycle. Would it work?

 

 

 

 

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Swallowing

We know that swallowing is one of the difficulties to expect in Boris’s decline.  In fact,  the inability to swallow and choking are sometimes the cause of death.  The brain simply forgets how to do it.

Although in many ways Bo seems to stay stable:  the same schedule,  the same eating habits, the same ability to get around the house,  the ability to still have a simple conversation,   to go up and down the stairs and get into and out of bed,  still, we feel as if we see small declines each day.  He doesn’t know whether to eat with his right or left hand or with his fingers.  Forgets how to shave and brush his teeth until shown.

Yesterday morning I found him chewing on a bar of soap in the bathroom.  Jon said he tried to put his glasses on one of his feet today while he put a sock on the other one.  When he said he was tired this afternoon,  I suggested he return to the living room where he had been just 5 minutes earlier, and he asked, “Where is it?  I don’t understand.”  He takes half an hour to eat his meal (not counting the ice cream) and just asked me what the Christmas tree is as he was staring at it here in the family room.  When I said what it is, he said, “Is that what it is?  I never heard of it before.”

And now, during the past couple of weeks, sadly,  we are seeing some swallowing issues.  He can still take his pills (had trouble a couple of months ago) and eat his meals, but he seems to forget what to do with his saliva sometimes.  He’ll purse his lips and point to them,  sometimes coming into the room  signaling that he wants to spit out saliva.   When I tell him to swallow,  even rub his neck the way I rub the cat’s neck to get him to swallow his pills, it doesn’t work.  He just doesn’t understand swallowing at that time.  So far, he hasn’t spit indiscriminately around the house.

And so we watch him daily, noting the small losses, the ups and downs,   knowing that this can only get worse.

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Spirit and Decline

It’s that time again — NancyCamp Christmas.  I have a calendar of activities for the children — a variety of seasonal events that we’ll do together.  In the summer we went to museums,  did art projects,  took boat, train  and taxi rides, looked at bugs, dinosaurs, and snakes,  and went to concerts and plays.  Now our Christmas schedule is different.  While Jon stays with Bo,  Justin and Victoria and I will  go out together every Saturday and Sunday — even a couple of evenings.

The fun began last Friday evening when the whole family rode around looking  at  Christmas lights.  Bo was in the front seat beside Jon, not really sure what we were doing but in good spirits.  Jon turned the Christmas carols up loud and Bo began to hum and tap his hand to the music.  It was a great time — a carload of Christmas spirit.

Dickens Village  at  Macy's Philadelphia

Dickens Village
at
Macy’s Philadelphia

On Saturday I took the kids to Philadelphia to visit the Dickens Village and  traditional light show at Macy’s, then the light show at the Comcast Building.  In between?  Subway sandwiches and taxis because it was raining.  (They like taxis.)  On Sunday we had tickets to see “A Christmas Carol” at the Walnut Street Theater.

Macy's Giant Light Show 34,000 bulbs!

Macy’s Giant Light Show
34,000 bulbs!

Jon, of course, was home with Bo, who unfortunately developed  a respiratory infection and has had a particularly bad week.  In fact, when his hospice nurse came today, she was quite shocked to see his severe decline in just one week.  He is shuffling,  off-balance, listing to one side,  wants to put his head down, speaks little — often gibberish — and is so weak he can hardly go from one chair to another.  He falls asleep as soon as he sits, and has to be fed much of his meals.  Is it the infection or is it sudden end-stage decline?  We wonder and compare this to the decline several months ago when he was hospitalized.  Ronnie made changes in his medicine  and we’ll see what happens in a week.

At the same time, Bo has begun serious sundowning — not sleeping at night, anxious and unable to stop his mind, moving from one thing to another,  unable to be still in bed.  I was up with him all night several nights in a row, so last night Jon stayed up, finally getting him to sleep about 5:30 this morning, while I slept in the guest room.  It’s a scenario I hadn’t really planned for.  He’s been a good sleeper and I hoped that by keeping him on a schedule we could stave off sundowning.   We tried medications  but they had the reverse effect from what was needed.  I’m so afraid that this is a permanent change and I need to think through how we’ll handle it.  Will I hire more help to stay at night?

Tomorrow will be another good day with Justin and Victoria.  We begin at 10 with a recital at Settlement Music School,  then we’re going to the Cherry Hill Mall so they can shop for their parents and one another, and tomorrow night we’ll  get dressed up to go to a dance showcase at a nearby ballroom where I’ll introduce them to “my world.” A lot of children will be in the show so it should be fun.

But what will Bo’s day be like?  Will his decline continue?

 

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Celtic Thunder

Continuing the conversation about Alzheimer’s and music:

Bo has surprised me yet again. I watched the Celtic Thunder Christmas special and knew that he would have loved it. He loved Christmas.  We always made a big thing of it.  We’d decorate our tree together, drink eggnog and enjoy a fire in the fireplace. We’d have dinner by the TV as we watched one of our favorite seasonal movies —  Little Lord Fauntleroy (only the Ricky Schroeder version!) our traditional holiday movie date.  Often we’d watch George C. Scott’s  A Christmas Carol, Bo’s favorite version.

He loved the carols and enjoyed  concerts like A Night in Vienna on PBS and the Philadelphia Orchestra’s New Years Eve concert.  He would tease me about my love of Christmas lights and music, but the truth was that he loved it just as much as I do, and  some years he put all of the lights up as a surprise while I was at work.

Our trees are up and decorated now but he hasn’t noticed them. Would Celtic Thunder’s concert connect with him?

I  planned to have him by the TV last night when the show was on. He hasn’t been focusing well lately,  but maybe  he would enjoy this.  It had been a difficult evening — he was unable to sit quietly, not agitated but unfocused.   Often I ask myself how I would sit still if I were in his place,  unable to read, watch TV, carry a conversation or  concentrate on anything. Lately, he has been getting worse.  The music was my hope.

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I expected him to listen,  to whistle or hum,  to move his hand to the music,  to look at the lovely scene on the TV,  perhaps even to cry.  But it didn’t happen.

No matter how many times I tried to draw his attention to the music and the pictures on the TV screen, he completely ignored me. Or more accurately, he couldn’t process what I was saying. He walked around the room,  picked things up,  tried to scribble with a ball point pen he found, picked up his shoes, moved the bottles around on the bureau,  but he never heard the beautiful Christmas music.  Didn’t even look at the TV in front of him. Another loss.

 

 

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