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 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.

Emma

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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Good care

The hospice nurse, doctor and social worker were here for Bo’s six month evaluation.  Their conclusion: “If he didn’t have such good care,  he would be in much worse condition.”  Hospice care will continue for him because he shows multiple signs of decline despite our efforts.   We are there to prevent falls, to keep him well fed and clean,  to give him comfort and security, but we can’t stop the regression.

I was away for a week (next blog) and when I returned yesterday, Jon said he had seen  a serious decline during those seven days, a decline that started before I left.  It had nothing to do with me being away, and everything to do with his disease.  He has left the plateau that I described several blogs ago; he is less alert and more sleepy, more confused, off- balance and weak.

Jon told me that a couple of days ago Bo was on the sofa and signaled that he needed to go to the bathroom.  Jon helped him to stand, but he tottered off-balance and didn’t know  how to move his feet to take a step. “What do I do?” he asked Jon.  That same thing has happened on the stairs. He was stepping sideways and holding onto the railing with Jon holding his hands, but now sometimes he stands at the top, facing straight down  with no idea what to do next.

He is actually even having  difficulty standing without help balancing.   He stoops over more,  and often when he sits, his head is hanging forward; he tends to lean toward the right, which is apparently one of the signs of  Alzheimer’s regression. The Hospice masseuse comes every two weeks now to massage his neck and shoulders.  She explained that the purpose of doing this is to keep the muscles from tightening, which the brain apparently signals the body to do.

Sometimes now he eats only half  of his food, while two weeks ago he ate all of it, and once again,  he may fall asleep at the table. It is as if a cloud of fog has settled over him and he lost contact with everything around him.

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Most of the Time

I stepped back into our bedroom this morning to check on Bo before I went downstairs, and there he was,  standing beside the bed, struggling to pull a pair of pull-up shorts over his head like a shirt.

“What are you doing, honey?” I asked as I went around to him.

“I don’t know,”  and then he mumbled some incomplete thought about needing “to be there by -thirty.”

“You don’t need to go anywhere now,”  I tried to soothe him.  “There’s so much ice and snow on the ground that we don’t want to drive now.  And you have no place  you have to go today anyway.”

“Oh, OK, ”  and then he let me help him back onto the bed.

After several surprisingly good days last week,  Bo declined again on the weekend.  He’s sleeping more,  quite unresponsive and uncommunicative,  just sitting and staring at the floor.  He plays with his food,  nearly falls asleep at the table,  and is sad.

Because he’s sleeping more, I’m getting more sleep — helping him only two or three times a night,  sometimes even once.  Good for me, not for him.

Both Jon and I have seen him do some very strange things because he doesn’t  recognize everyday items, even his shoes or glasses, razor or toothbrush;  takes the peaches out of his dish and wraps them in a paper towel,  puts his beans in his water glass.

Even yesterday,  after being here every day for 18 months,  Jon was a stranger to him.  Almost every night Jon puts him to bed and I hear him say, “Sleep well, Buddy,  I’ll be here in the morning to get you up.”  Bo smiles and says thank you, yet he doesn’t know him.

He still knows me most of the time, but not all the time yet I am his security and comfort. It’s obvious in the way he calls for me and calms when I sit beside him holding his hand.

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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 two 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.

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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.

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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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