Night Lights

It happened in January.

I wanted to watch Downton Abbey.  All week I alerted everyone in the house  that Sunday night from 8 to 10 there would be absolute quiet in the family room. Watch the show with me or leave. I had waited ten months for the fourth season of my favorite show to begin.

But then the evening began to unravel, and by the end I was so frustrated that I left the house with Emma dog.

During the holiday season I have a favorite place to visit: a house with very special Christmas lights. Probably many people wouldn’t understand, but visiting it can soothe my frustration. To describe the beautiful scene isn’t easy, but it’s a huge property with enormous trees scattered  around  the  front yard, and hanging from every tree are  spheres of light – beautiful handmade balls about 30-inches in diameter covered with all different combinations of LED lights.

Sometimes I sit there in my car with “Silent Night” playing on my radio; sometimes I am bold and I walk among them as they swing  in the winter silence — 100 beautiful balls – and for some inexplicable reason I am  calmed.  Most evenings throughout the holiday season Emma and I go to look at them, and  I try to absorb their beauty so I can remember them the other months of the year.

My January evening first started to fall apart about 8:05 when the family arrived home, and no matter how quiet they tried to be, I was distracted. Then Bo came into the family room from his nap in the living room, asked, “Whatcha doing?” and sat beside me. He continued to ask questions. Then one of the children came into the room and asked what was happening on the show as  Lord Crawley entered his library with Lady Cora.  My stress level was rising.

“What’s that?” Bo asked, touching a candle on the coffee table. Then he picked up the newspaper and asked, “What’s this?” I was really trying to stay calm – one eye on the TV, the other on what Bo was doing, but I was really irritated and sorry for myself. He continued, and I reacted.  Jon saw me walk out the door with the dog, and he took over.

As I left the house with Emma, Downton Abbey was still on.  I  drove up the hill feeling guilty and talking to myself about how immature my behavior was.  After all, I could watch the show tomorrow on-demand.

But then I arrived at the lights and my whole outlook calmed. Emma and I walked among the trees in the silence and by the time I drove home I was back in balance.

 

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A Caregiver’s Vacation

I have been on vacation in the British Virgin Islands.  For a caregiver,  this is a dream – something we need so much, but it’s so hard to find a way.

I’ve loved travel since I took my first plane ride at age 22, and I’ve been a traveler all my life:  vacationing with Bo, with friends,  by myself.  In fact, I organized many trips to Europe as the tour guide.

 But sadly, things changed,  and after these past four years of staying home ( one overnight trip to my hometown to bury my mother’s remains) the idea of going on vacation was only a dream.  I could see no way that I could leave Bo alone; I couldn’t ask friends or relatives to relieve me.

 Then in November Jon and his family came here to live and life changed.  I started getting out to do things that Bo can no longer enjoy: the Philadelphia Orchestra, lunch or dinner with friends,  a play,  a board meeting, book club, even shopping. The restorative effect of these events cannot be measured.  No matter how much you care for the person you care for,  the unrelenting feeling of near suffocation is there.

 But back to Jon.  He’s always there now to give me support, as are his wife Adriana and their two children.  When Jon hears the rising tension in my voice as I try to stay calm with Bo, he comes to my aid.  More than once he has come into the kitchen and said, “Hey, Bo.  Let’s take a little walk.”  Or he has heard me upstairs getting Bo up or ready for bed,  and suddenly appeared, saying, “I’ll take over.  How about if you take a shower now, Bo.”  And I relax.

 So in November,  when Mary Anne called to say she wanted to charter a boat in the BVI’s and three of us would go for nine days – could I go if I started planning then? – Jon immediately said, “GO.   You need it.  I can take care of things here.”  I can’t describe how it felt to begin planning a trip.  Of course,  I felt guilt at the thought of leaving Bo home while I went for a good time,  but I needed it so much.  A caregiver forgets normalcy.

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 So now I’m on a US Air flight back from Tortola,  on my way home.  I’ve had a fabulous time.  Yes, occasionally during the week  I felt sad to be away from Bo, and wished so much that he could be enjoying life on the water that he loved so much, but at the same time I know that he has no idea what it even means to take a boat trip.  He has lost all of those wonderful memories of past cruises.  I stood in a gift shop one afternoon and nearly cried,  realizing that I wasn’t even looking for a shirt or hat to take home to him because he wouldn’t understand.

One night I dreamed that Jon told me he would be leaving in 12 weeks, and I actually awoke in a panic.  I texted Jon to tell him this, and he wrote back, “Don’t worry.  I’m not leaving.”  Such relief!

So within hours, my plane will land and I will return home  feeling relaxed and refreshed, and I’m sure I’ll find everything at home in great condition  –  cared for by Jon and his family.

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Winter Decline

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We were sitting at the dinner table.   A bowl of fresh daffodils was in the center, and Bo touched them,  then turned to me, “Should I eat these?”

Most things are strange to him now.

“What is that?” he asks, pointing to a red blanket on our bed.

“It’s a blanket.”

“What’s it for?”

Another time he sits on the family room sofa, leaning forward toward the coffee table.  He touches each thing on the table, asking what it is and what I want him to do with it – the TV control, magazines, newspaper,  a candle and the flower arrangement.  As he focuses on things, I try to divert his attention.  After the third or fourth time asking me what the control is, I get up and move it across the room.  It’s the only way to stop him.

This morning when he woke up,  I helped him dress.  I suggested that he brush his teeth, and he agreed,  so I put toothpaste on his brush and handed it to him. “What do I do?” he asked.  So I explained.  Then, when he was rinsing his mouth, he asked what to do again.

If I give him a pill, I have to explain that he should swallow it with the water, not chew it, as he did with his vitamin today.  But he does successfully take it.

Occasionally he will walk into the room, asking where he can go to the bathroom, so we must direct him there. He has no idea that he wears pullups instead of shorts, and has tried to wash them out on occasion.  But he very willingly puts them on with no resistance.

This noon I tried to explain to him that he should eat some wedges of a clementine.  I had a difficult time explaining that he do two things:  put his fork down and pick up the clementine with his hand.  Then, clementine wedge in hand,  he asked,  “What do you want me to do with it?”

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There is a bowl of orchids on the table today, and he asked what they were. He would have eaten one if I hadn’t been there.

The first sign of anything remaining the same after this long, snowy winter of decline  was yesterday when he went out to the front yard (in his pajamas) and picked up a handful of leaves, then  asked me where to put them.

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PHYSICAL THERAPY

The physical therapist is in the living room with Bo,  trying to keep him focused on some exercises to strengthen his legs,  build stamina, and help his balance.

I hear Bo’s boisterous laugh as he jokes with her, “Am I going to have to do this all night? …  What?  Are you kidding?”

He gets up after about 10 minutes, goes into the kitchen and gets a can of cookies and takes them to Patty, encouraging her to take some even though she refuses at first.

Then he calls, “Nancy!”

“What, Boris?”

“Get her a glass of water.”  Patty has already refused a cup of tea but takes the water to please him.

This is Bo, the gracious,  jovial host.  He’s lost in his Alzheimer’s world –  doesn’t understand the snow on the ground,  the cold,  the time of day, why Patty is here, how to brush his teeth –  but his manners and kindness remain.

Finally, he settles down for a bit and I hear the two of them laughing as Patty takes him through his exercises.  She tries to keep his attention and I wonder if I should go in and do the exercises too.

The therapist has been coming to the house for over a month now since an MRI found that Bo has a pinched nerve in his back – no doubt causing the weakness in his thigh that sent us to the doctor in the first place.

I can see how much he needs this interaction with other people, something different in his day.  The severe winter weather has increased his boredom and ennui.  He would sleep all day if we let him, and when he gets up he’s so tired that just brushing his teeth or pulling on his sox exhausts him.  He manages to come down for breakfast and goes to lie on the sofa immediately after eating.

Most afternoons Jon takes him for a ride to run errands so that he has more stimulation (and I have more quiet at home.)  When he’s home, if he’s not resting, he constantly walks around moving things,  tasting things, calling for me to see where I am.

At night, sometimes Jon gets him to bed and he sleeps, but other nights he comes downstairs multiple times, … “just checking on things,” he’ll say. Often he eats something and then Jon or I get him back upstairs.

“Nancy!”  The therapist is ready to leave and  I go into the room to schedule another session and say goodbye.

I hear my name called so many times during the day. He seems to need to know where I am. Is it security?  When I came home from teaching my classes Monday evening,  I asked Jon if Bo was looking for me.  “He asked where you were about 50 times,” Jon said wearily.

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Christmas Luck

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We had a wonderful Christmas despite a series of unfortunate events.  The tree was piled with gifts for the children,  the house was decorated in every room with warm lights, two big Christmas trees, and lots of good food.  Wonderful friends and neighbors came to visit and to share with Jon’s family.

Bo, of course,  doesn’t understand that it’s the holiday season.  The trees which he has always loved were put up and he really didn’t notice even though he helped me decorate one of them.  One night as I backed down the driveway, he commented on the front yard decorations, saying that  I had done a good job.   But that’s all he said, and as I drovehim around town to look at the lights that we’ve always enjoyed,  he asked, “What decorations?”

Alla’s family surprised me with a 7-foot, twinkling Eiffel Tower which Jon put

IMG_0429 together and set on the back patio so we can see it through the French doors, but Bo asks what it is and has no idea what an Eiffel Tower really is.

All wasn’t smooth.  The season took its first twist a week before Christmas when Adriana’s shoulder froze.  She was in excruciating pain, couldn’t move her arm and, worst of all, couldn’t work at the  hair salon – a loss during a lucrative season.

The second blow came when Jon was in a motorcycle accident four days later and seriously hurt his foot and side; he’s in a boot, on crutches and still taking pain meds.  Then, two days ago their car had a flat tire and overheated.

“More bad luck,”  Jon commented.

“No, think of it as good luck,” my friend Rodney said to him.  “I was here when it happened and helped you change the tire!”  A good philosophy.  It applies to a lot that has happened here this fall.

My favorite Christmas tree is in our living room – decorated with all of Anya’s  beautiful hand-painted balls (a story for another time perhaps.)  Anyway,  they are delicate and exquisitely beautiful.  Yesterday Bo asked me to come into the room because there was

P1010410a problem.  He took me to the tree and began jamming his hand recklessly between the branches saying, “There’s nothing there!”  Nothing there? I asked.  “Yeah, nothing.  It’s empty.  Look.”  I was so taken aback by this that I didn’t know what to say or do. When I didn’t respond,  he walked away, annoyed.  What did he mean?

Jon feels so bad about not being the strong helper right now. Poor Emma dog doesn’t get any long walks; I’m doing the house work and following Bo around. I’m the strength in the house and I can joke about it: “What’s wrong with this picture?”

My feeling is that we were all together for Christmas, we’re enjoying our situation,  and that’s most excellent good luck!

(A friend suggested that it’s the perfect plot for a Hallmark movie.)

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The Bear in the Basement

Living with Bo is like having a three-year-old in our house.

He constantly gets into things — the refrigerator, the cookie jar, the mail, the freezer, bureau drawers.  Whatever he can find. He sorts things, moves them,  puts them into his pocket.   Jon said tonight that “he gets into something every two minutes, circling back again and again.” It’s boredom and restlessness and confusion.

Last week he told me there’s a bear in the basement.  “A bear?” I asked as I looked down the steps.  “Yeah,” he said,  “there’s a bear down there.” He meant that the light was on.

Yesterday he didn’t recognize ice; today he didn’t know what water is. Words, concepts, so much loss.  At dinner he pointed to his water glass and asked for sheets (ice cubes). When he comes into the house, he often asks for a drink by signaling (pointing to his mouth.)  Last night he said he wanted “puffy foat.”  What do you want? I asked.  “Puffy foat,” he said emphatically as if everyone knows what it is.  I think he meant ice cream. Then he said he was “buzzled” (tired).

He forgets about shaving, just rubs his face and asks what to do.  Until recently, I could tell him to go back upstairs and shave, but now he doesn’t recognize the electric razor until it’s in his hand. When he’s tired, things are even harder.  I put the toothpaste on his brush at night, help him out of his clothes (explaining what to do) and tuck him in.

I have to plan dinner, ready to serve quickly if he becomes too obsessed with eating, often as early at 4:30 now.   It’s not as if he’s hungry.  He may have eaten a substantial snack a half hour, even fifteen minutes ago, but he just can’t let the idea go once he has it.  Then when I’m cooking, he’s paces around in the kitchen, asking, “Are we going to eat sometime?” He leans over my shoulder, “What are you doing?”  “What’s that?” I try to count to twenty.

I know that I need to hold off eating as long as possible because the earlier he has dinner, the earlier he will go to bed, and this will contribute to the day/night confusion that Alzheimer’s patients experience.

He no longer gets ice cream out of the refrigerator and scoops it into a bowl. We do it for him, and as soon as he finishes a bowl, he asks for more because he doesn’t remember eating ice cream  “for a very long time.”

Mostly, he asks questions now because he doesn’t understand what others are saying or what he sees.  So much of it has no logic. I see a decline in his ability to play Rummicube, our traditional game, and I keep altering the rules to make it easier.

And always, if I’m sitting down, I listen to hear what’s going on out of my line of sight, trying to resist getting up yet again to check on what he’s doing.

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Are you Warm?

It’s very cold and we’re taking a walk around the block with Emma.  Bo has on his warmest jacket,  cowboy hat and gloves.

As we’re walking, I ask him,  “Are you warm enough in that jacket?”  He doesn’t understand the question and does something with his hat.

“Is that jacket warm enough?”  I repeat.  Still no understanding.

I try a different tack:  “Do you feel any cold air under your jacket?”  He replies with an answer that still shows he doesn’t understand the concept.

“Are your arms warm enough?” I touch his arm to help.  No reply.

I give up and try to think of a different question.  He says,  “It sure is cold out here.  I’m going home.”

I notice this afternoon that he’s shuffling his feet.  I hear them as I walk ahead of  him with Emma. I remind him to stand up straight and lift up his feet.  Just before we turn up our driveway,  he trips and nearly falls but maintains his balance as he lurches forward.  I  feel lucky once again that he isn’t hurt.

For several weeks now a physical therapist has visited our home to work with Bo, helping to strengthen his legs and maintain good balance.  It began when he nearly fell several times as his leg gave out beneath him.  X-rays and an MRI showed a pinched nerve in his back and the physical therapy was recommended.  No doubt all that bending for hours at a time to pick up leaves contributed to it.

Bo enjoys the time with the therapist who remarks each visit how amazingly strong and fit Bo really is despite this back issue. I guess it’s all the exercise he got over the years – the tennis,  skiing,  walking, golf and health club.

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