Home at Last!

Yesterday afternoon Bo was finally discharged from the hospital, so  we’re all home!   We left with a bag  of foaming soaps and creams, tissues and bed liners, wheeling Bo  down the elevator and out the revolving doors into the fresh air and sunshine that we all needed.

Bo’s so weak that he could hardly take one step up from the garage into the house, his balance is off and he looks as if we’ve starved him.  I actually had to run out to buy him a couple of pair of stretch-waist shorts in a smaller size.

But he  had dinner at the table with us and this is an interesting thing:  in the hospital we had to feed him his meals.  He sat, opened his mouth and chewed the food, but lost interest quickly.  We had to cajole him to get him to eat much.  He didn’t even always understand a straw and would try to chew on it.   At dinner here last evening, he sat up,  ate his own meal with a fork and spoon, including some ice cream which I would have fed to him in the hospital.  He was the same way with his personal care.

As soon as he came into the house he sort of slipped into his familiar routine, such as it is.  I think all of this is very interesting because it says something about being in an institutional setting.  Of course, he felt awful and had a lot of pain, but still,  it’s as if he declined just by going through the hospital doors.  You often hear that when elderly people are put into nursing care,  they decline precipitously.  I think that’s what would happen to Bo.

So we’re sort of back on our home schedule and can get better sleep, although I slept lightly last night, as I did in the hospital,  because I wanted to be up with him when he got up, as he  does often throughout the night.  Hopefully, he will heal from the kidney surgery soon and be more comfortable — no more pain.

 

 

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Not Another Day Here!

We’re still here in the hospital – 6 days now – and I’m hoping that soon we’ll go home. Bo has to “pass the test” and then he’ll be paroled. He still has the horrible kidney spasms. The urologist’s response was   “That can happen.”

I can’t believe how many tests he’s had – CT Scans, x-rays, ultrasounds. Two yesterday, and another x-ray series today. He will glow in the dark.

Because of his sweet personality, Bo’s willing to go through all of these things with a smile. Well, except yesterday’s ultrasound which really annoyed him because he was having a particularly bad alzheimer’s day and just wanted to sleep. Today, he’s awake, sat in the chair, walked to the stretcher, and looks so much better.

Could he possibly leave this afternoon? Probably not. I’m hoping for tomorrow.  So many different doctors, residents, urologists, gastroenterologists,  just keep coming, checking,  never more than 5 minus, and leave.  I can’t keep them straight and I’m not sure who has the final say.

I’ve been here for 13 hours – sort of slept in this chair – and I’m ready for some fresh air and time with Emma dog. It’s the last days before school starts and I’d like to do something with the kids too, maybe a last NancyCamp activity tomorrow. Maybe.

(Lisa at mysweetpeanut hosts One Word Wednesday.This week’s word:  willing.)

OneWordWed200-150x150

 

 

 

 

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The Day After

So here we are — the day after.  Poor Bo is in a new kind of pain and has tubes coming out of  places he’d rather not mention.  When the spasms come,  I hold his hands (to keep them busy) and calm him till they pass.  The nurse brings pain pills and we struggle to get him to swallow — not chew them —  and then  hope the pains are less intense.

But it’s over and now the recovery starts. Bo has no idea about any of this,  none.  He smiles and eats (we feed him  because he would use his hands, not a fork or spoon) and he holds his drink.  Jon brought him a big bowl of salted pretzel caramel ice cream from his store, which he enjoys and he’s had enough ginger ale to fill a pool.

A young resident came in earlier  today to check Bo and as he was bending over him asking him to breathe deeply (never happened) Bo played with his stethoscope.  “What is that?” he asked as I watched in  amusement. “Do you have a three-year-old?” I asked the resident.  “No,” he replied, “but I like children.”  I smiled.

I got a good night’s sleep last night in my own bed at home while Jon did duty here.  Now it’s my turn to spend the day — oops!  there goes my night  tonight!  — but that’s OK.  We’re on the road to going home in a day or so.

 

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Goodbye, Kidney Stone

It happened late this afternoon. Doctors removed the kidney stone and reported blockage, swelling and infection. Not surprised.

Now, four hours later, Bo’s in his room, has eaten his dinner and is wide awake. I don’t know what is coming, but so far he hasn’t shown the extreme agitation I was expecting from the general anesthesia; hasn’t shown an increase in confusion either. Yet.

I’m with him until midnight when Jon will come so I can get some sleep at night. Turns out I can’t sleep during the day so I haven’t slept, other than mini- naps, for two days. I was here all of last night and every time I even nodded off, I was awakened by Bo standing beside me attached to his IV, confused, and searching for the bathroom. It happened almost every hour. I don’t know how he managed to get up so quickly, or was I just so exhausted that I didn’t hear him?

Last night was the first night that I was so tired I couldn’t even focus on my computer, didn’t start a blog, didn’t work on the syllabus for my fall classes. Didn’t even write emails.

It’s such a relief to know that after we get through this week (probably two more days in the hospital then a trip to the urologist) he will have relief and we aren’t facing another week in the hospital. I’ve learned so much here that I feel as if I’ve been interning. My life out of here is surreal and I’ve lost all track of time. Day of the week? Don’t know. Date? Don’t know. Time? Not sure, but it’s still daylight … or is it early morning?

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On the Brighter Side – NancyCamp

School begins in ten days and we still have NancyCamp activities left to do.  Bo’s ordeal with this kidney stone has slowed us — but not stopped us.  Last week we did three activities: a boat tour of Philadelphia, an evening in Ocean City, and a visit to the “real” Japanese teahouse and gardens in Fairmount Park.

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The boat tour was a complete surprise to me.  Philly area friends might like to consider it because it’s wonderful, a small boat trip down the Schuylkill River and up the Delaware, from the Museum to Penns Landing. (They have a night lights tour too.)  The kids enjoyed every part of our afternoon tour, beginning with a taxi ride, which they’d never taken, then cruising lazily along for two hours.  The donuts that the captain served were an added bonus.  After the cruise, they swung in hammocks at Penns Landing before we drove home.

Ocean City 2014MG_1001 IMG_1008

The next evening we drove to Ocean City to walk on the boardwalk,  have pizza and pretzel dogs and go on the rides at Gillian’s Pier.

Japanese Teahouse Fairmount Park

Japanese Teahouse
Fairmount Park

On Friday between my stays at the hospital, we visited the Japanese teahouse and garden in Philadelphia’s Fairmount Park.  I think Justin liked the snake the most; Victoria loved the gardens and wanted to stay there to relax.  There was a major ikebana (Japanese flower arranging) exhibit which we enjoyed too.  After feeding the brilliant coy in the pond, we headed back home.

Teahouse Snake

Teahouse Snake

Serenity

Serenity

On the way home I said to the kids that I’ll be sad when they go back to school because I won’t have anyone to play with.  It’s true.  I hate to see NancyCamp end.  (But we’re not finished yet!)

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Sundowning in the Hospital

I just got tears in my eyes as I watched a  young technician  wheel Bo, who was smiling and joking,  into the nuclear medicine room to test his kidney function.   When asked his name,  he immediately said it–first and last,  and he was concerned that I stay nearby.  He knows my name and that I’m his wife today; in fact, he has known all the time he’s been in the hospital.

The tears were because he’s so trusting and innocent,  so willing to please and be pleasant.  And I have felt the opposite – frustrated,  impatient,  irritable, sleep-deprived.  Last evening was a real low point.  I was with him from 3 until 10 pm.  Bo sundowned so intensely  that after my seven hours with him, he continued to be agitated through the night with Jon until he finally fell asleep at 5 am, despite the medicine that I had requested in the evening.  It had no effect.  ( A nurse told me that sundowning is usually worse when patients are in the hospital.)

I will try to describe a brief time with him, but in your mind,  multiply it over and over and over (and, I suppose,  picture a 3 year old.)

He is sitting in his bed, covered, with an IV in his arm and three hospital wrist bands on his arms.  He lifts the sheet, pulls at his hospital gown,  pulls at the wrist band,  grabs the IV line, (I stop him), he pulls on a gown tie,  lifts the sheet,  kicks the cover away (I fix it), he asks me when we are going home (I say we’re not),  he says he has to go home (I say he can’t);  he starts to put his legs over the side to get out of the bed (I stop him and reposition his legs), he needs to go to the bathroom  (I take care of all of this and change him), he asks when we’re leaving and I say we’re not;  he says he has to leave now;  he pulls at his IV (I stop him),  then tries to remove the wrist band………………….   and it goes on and on,  without pause.

At one point,  I actually thought he was settled down,  so I put my head back and nodded off.  When I awoke — 3 minutes later? — he had wrapped the IV around his hand and arm so many times and entwined it with a cover on his arm that I had to call the nurse to fix it.  And it began again.  Another time he wouldn’t stop pulling it, and in frustration, I slapped his hand, and the look in his eyes made me feel  just horrible and ashamed.

A doctor told Jon this morning that they do no procedures on the weekend.  That means that nothing will be done — if anyone can figure out what to do — before Monday.  All we are trying to do is find out what to do next and stop the pain (which is not constant.)

Jeremy, the technician, just told me that Bo fell asleep as soon as he began the test, which will take from 30 min to an hour. Maybe we’ll find something out?

I just want to go home.

 

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Back in the Hospital Again

Here I am again, sitting beside Bo in the emergency room of Lourdes Hospital, chasing down his wandering kidney stone that, apparently, is stuck somewhere.

It has been three weeks since his first pains appeared, and now — multiple X-rays, ultrasounds and CT scans later — we’re back where we started. Waiting. Poor Bo. He doesn’t know he’s had horrible pain, doesn’t know where he is or why, but he’s going along with it all like a gentleman.

Jon and I have a routine now. He dropped us off here, made sure Bo was comfortable, then took the car home to get some sleep before he relieves me in early morning. By then I will be numb if we don’t get to move to a hospital room with a chair that I can sort of rest in. Right now I’m sitting in a straight-back chair and Bo’s asleep.

This afternoon he had a CT scan and two hours later the doctor’s office called to say we should take him to the hospital immediately because the stone is causing a blockage. So about 8 pm, we came here. I had copies of all of his recent tests with me but – and this is unbelievable! – the hospital couldn’t read the CT scan from this afternoon, something about the technology, so they took another CT scan just 8 hours later. Seriously? “Some machines are incompatible,” the technician told me. I was incredulous.

Bo has had terrible pain, mostly in the middle of the night. He can’t explain what is wrong, but his misery is evident. He moans and whimpers, bent over, shaking. I wonder if lying down has something to do with this pain. Of course, I’m wondering how they will resolve this. We visited his urologist two days ago (the one that called for the test this afternoon then left for vacation) and the doctor made it clear that he would prefer not to do any procedures on an Alzheimer’s patient, especially if anesthesia or a catheter is involved.

Now, after sitting here for 6 hours, a nurse just popped into the room to say that “all is negative, he just has a kidney stone and it should pass on its own.” Really?

“It’s been three weeks,” I explained to her. “I’m here because  the urologist’s assistant called this afternoon telling me to come here immediately because the stone is blocking an entrance …..”

“Oh,” the ER nurse said,   “I’ll go and talk to the doctor, “ and left.

Immediately a doctor came in to talk with me, and decided to call the urologist’s night number. “After hearing what you have to say,” he said to me, “we’ll probably keep him here over night until we can have a urologist see him. They may be thinking of doing a procedure.”

I’m thinking that the doctor’s assistant took the cautious route when she called. I’m no doctor, but I do get it when there are conflicting stories. The urologist’s office may have been covering their behinds this afternoon, sending me here; or the imaging center may have over-stated the situation to be on the safe side. OR, maybe something needs to be done for poor Boris! Seriously, the patient is just a set of test results.

So we’re here overnight and I get to sleep in this chair.

But while I sit here, there’s another story in the bed on the other side of the curtain – a woman who “just had pneumonia” who says she has heart failure, seizures, diabetes, and “has been dry for three months” living in a half-way house in Philadelphia but is somehow in a Camden, New Jersey, hospital tonight. Her biggest concern was getting her medicine because she has no insurance but I could hear doubt and concern in the nurse’s voices. “We will keep you here until a social worker can see you tomorrow.” Is she just trying to get more drugs?

And so our parallel lives go on: Boris who is so cared for, and the woman on the other side of the curtain.

(Nancy Camp did happen twice this week: a boat ride around Philadelphia on Tuesday afternoon and a trip to the Ocean City boardwalk last night. More about that later.)

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Waiting for the Stone

The wait goes on.  Last night in the middle of the night Bo was up with excruciating stomach pain.  I felt so sorry for him, curled up on the bed, then bent over the side, moaning but unable to explain what was happening.  I did the only thing I knew to do:  gave him 4 Tylenols, then helped him to get somewhat comfortable on the bed and waited until I heard him breathing smoothly.  My heart broke for him as I watched him sleep. Will he pass a 3 millimeter stone?  I suppose the jury is out, and we’ll find out more on Tuesday at his urologist appointment.  At the hospital the general consensus was that “it’s not a very big stone so it should pass.”  Easy for them to say.

Bo has lost so much weight.  He ate little all last week in the hospital, and now that he’s home,  the most he’s getting is 2 small meals, and he’s not even eating ice cream this week.  As he lay on his side on the bed,  I looked at his hip and thigh and felt so sad; he’s terribly thin.

But through this, while Jon cares for Bo,  the children and I had another Nancy’Camp activity yesterday afternoon:  FLOWER ARRANGING.  At first, Justin said he wasn’t going to do it, but then he changed his mind and did a great job.

I picked up a couple of large bouquets of mixed flowers at the local produce store in the morning, then the kids went around our yard  cutting a variety of greens and collected all sorts of containers around the house, vases, bottles, dishes,  tea pots, whatever they wanted to try.

We worked in the kitchen, the sink filled with the flowers and greens.  I got out all of the flower arranging materials I had — oasis, tape, clippers, scissors, etc.,  and they began by learning how to clean the stems of the flowers.  We had an active hour as the little florists went to work, and the outcome — when they finally ran out of flowers — was 10 very lovely arrangements  now sitting throughout the house.

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Back to “Normal”

And so we’re home and life goes on with Bo sort of back to his normal. He still has occasional pain, which tells me the kidney stone is still traveling around, he’s extremely weak and less clear than before.  I am afraid that setbacks for an Alzheimer’s patient are permanent setbacks.

We just returned from getting him another ultrasound and x-ray to see if any progress has been made.  The frustrating thing is that we get the tests today, but the urologist can’t fit us in until Tuesday at 6:20 pm.  So in the meantime, Jon and I are his doctors — administering Tylenols and hoping they give him relief.  Forcing a lot of liquids into him is a true challenge.

NancyCamp has resumed.  Over lunch with a friend today I admitted that this whole summer of activities has been for me because everything that the kids and I do,  I LOVE to do.  And I love to share it.  And, well,  they’re so enthusiastic and willing to do whatever I suggest.  What could be better?

On Sunday we made still-life arrangements and photographed them  as a follow-up to our visit to the  Cezanne still-life exhibit, “The World is an Apple,” at the Barnes.  Victoria and Justin did a great job — all I did was get them started and they did the rest:  finding the objects, deciding how to arrange them, then take photos.  I think they’re very good!

Still-life with Fruit Justin, age 8

Still-life with Fruit
Justin, age 8

Books with Wine Victoria, age 11

Books with Wine
Victoria, age 11

Tuesday was another visit to the Museum of Art, this time to re-visit the Moorish Chieftain, then the Medieval French cloister and the Japanese teahouse where they learned that a museum is more than pictures.  They had fun posing for photos among the objects (although Justin wasn’t thrilled about being the Moorish chieftain when a docent asked him to pose so some people could sketch him.)

The Moorish Chieftain

The Moorish Chieftain

The Moorish Chieftain Charlemont

The Moorish Chieftain
Charlemont

After they ran up and down the “Rocky Steps” in front of the museum in the rain,  we went for snacks and the kids announced that this is their favorite museum now.

Tomorrow:  Flower Arranging for NancyCamp

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The Quintet of Radiance Award

award

It happened to me again …. this time I received a note from Lori, a blogger at Creatingbeautyinthekitchen,  suggesting that I visit her blog;  she had nominated me for an award. What a lovely thing to happen to me.  It is such an honor. Here’s how Lori said it :

“Nominee for Quintet of Radiance Award: Nancy at Alzheimer’s Wife- I actually just started following this precious woman’s blog and I was so impacted by her that I am giving her this award. I love her love for her husband and her writing is just beautiful!”

Thank you, Lori.

Not long ago I began reading Lori’s creative, lifestyle blog. She writes and photographs her healthy, low-glycemic creations made with fresh ingredients, no processed foods or refined sugars and “almost gluten-free.” It’s a lifestyle she didn’t want to adopt but did so at her doctor’s recommendation, and the outcome is that she loves her new way of eating, so, she is sharing it with us.

As I recently learned, each blog award comes with its requirements, and the Quintet (which is a combination of 5 awards) requires that you tell 26 things about yourself. 26 A-Z! So I decided to copy Lori’s clever approach. She had her mother and nephew do the describing; I will ask my new “grandchildren” Justin and Victoria to do it for me. (I did list a couple of words myself: stubborn, impatient, tenacious.)

Artistic, book lover, Charlie cat lover, dancer, Emma dog lover, fast driver, gregarious and generous, hopeful, impatient, just, kind, likes museums, music lover, nice, organizer, planner, quick-tempered, raisin-hater, stubborn, tenacious thinker, upbeat, very good friend, water skier, extra ? , young-at-heart, zest for life

Lisa at mysweetpeanut.com is the first person I nominate for this award.  I feel as if Lisa and I have become good friends through our blogs, sharing our lives as Alzheimer’s caregivers;  I have come to love her dog and her family –pictures and stories.  AND, she’s a terrific writer.

I also want to nominate fiona and simon who tell their story of moving from Australia to  Peterborough, Canada, so that Simon  could go to a special school where  his learning difficulties could be treated in the Arrowsmith program.  Their daily experiences, travels,  Simon’s progress — all of it is shared with us.

And finally, Mrs. hsg at “Before I Forget”  who writes about her own diagnosis of early onset Alzheimers.  She’s a writer and photographer whom I greatly admire for her openness and honesty as she shares her life in England.  She also writes book reviews and her “filigree photography” is very special.

(Award Requirements:  accept and thank the person who nominated you; follow that blog;   write 25 words or phrases that describe you, A-Z; list a few other bloggers who you think deserve the award.)

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