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.

 P1030200 P1030201

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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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We’re Home

At last we brought Bo home from the hospital yesterday afternoon.  It had been 6 1/2 days since we took him to the emergency room with extreme pain in his stomach.  Long days that are a blur to me now, maybe because I’m sleep deprived.

Has the problem been solved?   No, not really.  I was relieved to have a battery of tests done to find out what’s going on,  and to consult with doctors about his daily habits.  I was also relieved to have tests done in the least stressful way (would never have taken him for a colonoscopy…he couldn’t have tolerated the preparation.) But by the time they gave it to him at the hospital Friday,  the prep had been done — all week.

What did we find out?  He has two kidney stones which may be causing the pain, but they’re small.  He had an obstructed bowel, a chronic condition,  which we may be better able to manage now.  He has high blood pressure and several other issues which the doctors wanted to treat, but I said NO.  I am keeping my promises to Bo:  no life-extending meds or procedures.

He is so weak that Jon could hardly get him up the steps to go to bed, and I’m concerned about him falling.  He was no sooner in his bed yesterday than he began to complain of the stomach pains again, which I have to think are the kidney stone, so I gave him 3 Tylenols and he slept until Jon got him up about 9 pm, brought him downstairs and he ate part of a bowl of comforting (we hope) soup, then his head was on the table so Jon took him back up to bed where I stayed with him for the night.

Today,  he is sleeping.

 

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Hospital Purgatory – PS

I’ve never written a “PS” to a blog before, but I want to add this to my previous post:

When she heard my story, Bo’s day nurse took action and called the cafeteria for a new breakfast tray.  He is awake and finishing a huge breakfast of pancakes, sausage and eggs with juice.  All is not bad.

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Hospital Purgatory

I’m not sure what happens in his brain, but certain things affect Bo in unusual ways.  Yesterday at 4 pm he had anesthesia for his colonoscopy.  He was alert before going into the procedure;  he was almost manic when he awakened.  I was with him until seven when Jon arrived, and as Jon entered the room I gave him a look of desperation and relief.  Bo hadn’t stopped for two hours.

First of all, they have been pumping him full of fluids for 5 days,  and it seemed as if a hose had been opened.  As soon as I would get him cleaned and back into bed,  it would happen again.  In one 45 minute period,  I used three pull-ups, two hospital gowns, two bed pads and a pair of sox.  When he wasn’t “going,”  he was moving things, pulling at his IV,  asking nonsense questions….. in and out of his bed.

When I returned  at 4 am,  Jon couldn’t tell me fast enough about his night.  It took him from 7 pm  until 1 am to get Bo to stay in bed and fall asleep.  He went through all but one of a package of 20 pull-ups,  multiple gowns, sox and pads.  Bo was non-stop activity and totally confused.

As Jon and I shared meatball sandwiches at 4 am in the nurse’s station just outside our room,  we discussed what would have happened if Jon hadn’t been here.  The nurses would have either been frantic with Bo or he would have been in the halls,  wet and lost.  Jon said the night nurse told him that one time she had five Alzheimer’s patients  at the same time and one night she thought she had them all in bed, went to the nurse’s station (perhaps 30 feet away) , and looked around to see  all five of them  in the hall.

Maybe I’ve just been here too long,  but things are really starting to bother me.  This morning, for example, at 8 am a nurse came into the room,  put on all overhead lights, and announced loudly, “Good Morning, David!” (the man in the other bed.)  Both David and Bo were sound asleep at last after being awakened for vital signs checks and to have blood drawn.  David was restless with pain all night; Bo was up several more times for bathroom trips, and he was finally resting peacefully.  I jumped up (from napping on the chair myself) and turned the lights off,  just irate.

Then at 8:15 another loud announcement and lights:  breakfast had arrived.  I nearly jumped out of my skin.  WHY would I awaken Bo to eat when he’s finally sleeping.  So, much to the very bossy woman’s disapproval, I took the food and set it aside.  “Well, I’ll let you keep it,” she said, “but I’ll be back in an hour to take it away.”  I smiled at her.  Only 30 minutes later she arrived back to remove the food.  I asked to keep it, but she said I was only allowed to keep the cereal and milk and removed the juice, coffee, pancakes, sausages and scrambled eggs, which were in a heated and covered dish.  I am VERY annoyed because when Bo does wake up he won’t get any sustenance again until his hamburger at lunch. This is why people get sicker in the hospital (and not because there’s bacteria in the food!)

I shouldn’t be so hard because the nursing staff has generally be very kind and helpful.  I know they appreciate our presence here.  But what bothers me is their seeming insensitivity to a sick person’s needs — sleep,  quiet,  calm, low lights, gentleness.  Even from my own hospital stays, it’s the same.  The patient CANNOT get uninterrupted sleep or gentle quiet.  This hospital has a TV channel called “Quiet meditation” which the staff turns on in the rooms.  I can tell you that if I hear one more frog or bird or waterfall this week, I will go out of my mind.  If I were in pain,  it would be worse.

Hopefully,  today I will get the final results of Bo’s tests and he will be able to go home.  I do have to wonder if it will make a difference to him.  It surely will to Jon and me!

 

 

 

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Looking Better – Day 5

Here we are – five full days in the hospital.

Now I’m waiting for Bo to be picked up for a colonoscopy, the last test, I hope, to check his insides and find out what was causing his pain. The kidney stone may not have been the cause although it’s apparently still there, but if nothing bad is found, there’s a chance he might go home tomorrow.

The doctor was just here and commented that Bo looks a lot better today, and he does. Bo was joking with the doctor about how well he’s dressed and if his shoes were polished, shook his hand and wished him well. Bo has been very communicative today, talking and getting up to do what is necessary. He knows me and asked what we’re going to do now. He’s been improving since all of the treatments to empty his insides —  must have lost 10 pounds.

I left here at 3 am last night when Jon took the shift until I returned at noon; during that time he gave Bo two showers and kept him in good shape. The nursing staff loves Jon because he does all that they would have to do… and more. I’m not such a good nurse, but I know the staff is very relieved because we’re here with Bo constantly. I expect Jon back   about 8 pm.

The reclining chair in this room is Chinese torture; sleeping on it is out of the question, no matter how I curl up, stretch out, hang over the side with a pillow. And if I do nod off for a moment, something wakes me up – Bo moving, bells, people in the hall, alarms, the man in the next bed. I’m convinced a hospital could kill you.

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 Meanwhile at home, NancyCamp is postponed. Our last activity was last Thursday evening when we went to our second picnic at the Mann Center with the Philadelphia Orchestra playing the score to” Star Trek – Into the Darkness” (music composed by a local man) with the film on the big screen. The kids loved it and although I’m no Trekkie, I enjoyed it too! I’m hoping that we can get back to our other activities next week.

 

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WHY?

I’m sitting in Bo’s hospital room by myself while he is taken for a another x-ray. In the bed on the other side of the room is an old man who is having a truly terrible time. A doctor, the third one today, is there trying to ask him questions to which he has absolutely no answers. He doesn’t know where he is, can’t say what day it is, can’t name the days of the week. Can’t say his own name.

All night he was in distress —  calling, cursing, moaning. Nurses came in and out of the room constantly. He pulled off all of his clothes and called out, “Let me out of here!” every so often. He gets his legs caught between the side rails and doesn’t have the strength to get them back up.  He’s wearing hospital “boxing gloves” so he doesn’t pull out the IV’s.

And he’s hallucinating: “Mary, give me your hand, please.”

From what I’ve overheard, he has, among other things, a broken pelvis/hip. He’s in pain and is incontinent. He’s diabetic, has kidney disease and is on dialysis. And the nurses are confounded because he has an odor that they are unable to cure.

I’m sitting here thinking about what we do to our elderly people. And I ask myself why he is going for dialysis three times a week, and  why every measure is being taken to save his life. He has no life. No future.  None.

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Waiting at the Hospital

I’m still here — three days later – sitting beside Bo’s bed in the hospital. Waiting. Waiting for something to happen. No sign of the kidney stone; all channels aren’t open.

The doctor just came in and said he’s sending Bo for another ultrasound to see if he may have  passed the stone (hmmmmm) and for another abdominal x-ray to check if he has an obstruction elsewhere.   It’s a good thing because  the meds aren’t doing their job. Does he need dynamite?

Jon and I have taken turns. Last night I went home to sleep in my bed and returned this morning showered and recharged. Now Jon’s at home sleeping. Maybe we’ll try to change our schedule tonight – 6 hours on, 6 hours off. My computer has saved me here except that my eyes are REALLY tired from looking at this screen all day/night.  Plus I’ve been reading on my iPad.

Just finished The Hundred Foot Journey by Richard C. Morais, which I really  recommend. (The  movie opens this Saturday, I think.) It was a good book to read while sitting here, not too serious, a little bit funny, all about French food, a good story.

I’m no nurse, never was good at it, but here I am doing it all except the IV’s.   I read once that teachers and nurses are in the same quadrant on a personality scale. Don’t believe it. I’d be happy to stand up here and teach anybody anything, but rubber glove duty? Jon’s great at that.

I see Bo slipping while he’s here, sleeping more with no exercise, nothing to do. Jon does try taking him for short walks down the hall. His appetite is very poor (1/4 of a sandwich and 3 spoonfuls of soup for lunch), and he is even less willing to do things himself. Jon had to feed him his pancakes for breakfast and he wanted me to feed him at lunch. He simply has no idea where he is or why and doesn’t ask, which is very interesting. He accepts sweetly whoever comes in to do whatever with him with absolutely no resistance.

All of you wonderful friends who have written to me this week have made a big difference in my life.  Thank you for your thoughts!

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