Roller Coaster – UP

Roller Coaster

Roller Coaster of Alzheimer’s

How do I explain this?

In August and September,  Bo took a terrible nose dive.  The kidney stone, fevers, blood clot in his lung, irregular blood pressure dragged him down to the point that he was almost unresponsive — at times he was unresponsive.  He lost weight and became so weak  that some days he couldn’t stand, couldn’t go the 15 feet to the bathroom; he fell, spoke in gibberish, couldn’t hold up his head when he sat or stood.   I learned how to nurse him, filled the house with appropriate supplies,  and Hospice stepped in to help.

Since coming home from the hospital, he has been upstairs where we ate with him, cared for him,  and sat  as he slept. My friend came for dinner one night and we ate upstairs by the bed. We struggled to give him pills and make sure he was comfortable and clean; we thought he was in his final decline.  Doctors said the blood clot would “snowball,”  his pressure was too high,  all indications were bad.  I began to think all the worst thoughts.

But that was two weeks ago.

Since then he has  gradually begun to improve, surprising us day by day as he became more clear, began to joke, wanted to get up, was hungry,  wanted to come downstairs.  He knew me again (most of the time), began his frequent “I have something to do” periods. Now  he is almost back to where he was BEFORE August.

On Saturday I was upstairs talking on the phone and Bo was sleeping on the living room sofa,  or so I thought, when Jon called up to me.

“Nancy,  where’s Boris?”

“On the sofa!”

“No, he’s not.”

In a moment he called back, “He’s out front picking up leaves on the driveway!”

This was  the first time in so long that I don’t remember the last time he did it. In fact,  Jon had said, “Well, at least I won’t have to rake the yard every day with him like last year.”  Looks as if he might have to after all.

The Hospice nurse reminded me that this is often the Alzheimer’s pattern,  a deep fall, then a recovery,  but never back to where you were; there’s always some decline.  This morning he awoke confused, but that’s how it was before August.  He still does some very strange things like put the towel into the toilet or not understand that the food on his plate is indeed his to eat,  but he’s still better.

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Dinner with John Wayne

This evening is like a little miracle after the last blog I posted.

Bo is sitting in front of the TV eating his soup and sandwich and watching John Wayne in “The Sands of Iwo Jima.”  Does he understand it?  I don’t know, but he looks with interest, at least part of the time and for these couple of hours he is awake.

He loved this movie,  he loved John Wayne, and he was a World War II aficionado.  Loved the battles,  the causes, the weapons, the aircraft.  Could tell you anything, everything about it.

One of his favorite stories was how he missed a battle when he was a little boy because his mother didn’t awaken him during the fray.

Dinner with John Wayne

Dinner with John Wayne

It happened in Aruba on February 16,1942 when Bo was 8 years old.   The Axis powers sent U-boats to attack the oil refinery in Aruba, where Bo’s family lived. Torpedoes were fired and hit a couple of tankers that were berthed there, then the German commander told his men to prepare for a naval bombardment of the largest oil tank in view. Miraculously,  the crew forgot to remove a water cap from the barrel of the gun so when the commander ordered them to fire, the gun blew up in their faces.  When they were unsuccessful at that, they continued firing, but one bullet made a dent in an oil tank and another put a hole in a house.  They ceased firing and left for the other end of the island where they again torpedoed but missed a target.

Bo liked to explain that the oil that was refined in Aruba was the fuel for allied airplanes, and if that gunner hadn’t forgotten to uncover the cap,  the outcome of the war may have been different. And he slept through all of it.  (Their house was on a small hill overlooking the beach and refinery and he could have seen it all.)

And tonight?  Could he– just for a moment — have returned to the war with John Wayne? I will never know  …. but maybe….

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Struggling

Our roller coaster continues, but now it’s in small rolls, from deep sleep to wakefulness to speaking; from so weak that he falls,   to making it down and up the stairs; from one word responses  to greeting a guest, shaking hands and saying, “It’s good to see you.”

Each short day becomes an incredible struggle.  He sleeps 18-21 hours now.  At least, it seems as if he’s sleeping,  but he may just be lying there with his eyes closed, and when asked if he wants to get up,  he usually says no.  But today, when I went to him at 5 pm and asked if he’d like to get  up,  he said, “Yes,” and started to sit up.  Even said he had to go play golf, something he hasn’t mentioned in a very long time.

When the hospice nurse came to check on him  Monday morning,  he didn’t even respond to her,  not even when she asked for his arm to take his blood pressure, but 8 hours later he had dinner in the kitchen, mostly feeding himself although it took great effort.

We have no way of knowing anymore whether he’s in pain because we’re not sure he understands our questions.  We’re not even sure if he’s out of breath and needs oxygen, which Hospice has provided,  or if he’s just weak and tired.

Yesterday he nearly broke my heart.  He was lying on the living room sofa, where he has lain countless hours in the past few years,  and I rubbed his head and said, “I’m so sorry you feel bad, Bo.  I know it’s hard for you.”  He smiled at me and said,  “I’ll get better.” I  kissed him and walked away in tears.

Several mornings ago I heard him get out of bed and found him  holding on to the door frame of the bathroom — about three feet from his side of the bed — unable to go any farther.  I turned him around to put him back into bed, but his legs gave out  and he sank to the floor.  I had to wake up Jon to get him back into bed.  Tonight, as Jon was holding him, trying to move him from the kitchen table to  the living room,  he seemed to pass out and fell to the floor.  But then  perhaps 15 minutes later he was able to go up the stairs with Jon’s help and go to bed.  But  the same thing occurred in the bedroom.

I watch him struggle and I don’t know what to do.  Is it just his failing brain function or another blood clot in his lung or something else?  He eats and drinks very little now and  sleeps away his nights and days, seldom turning over.  Our Charlie cat has moved into the bedroom and sleeps beside him most of the day and night now, companionship that Bo likes.  Does Charlie know something that we don’t?

Charlie Cat

Charlie Cat

What I do know is that Bo is living the very life that he always dreaded, that he refused to live.  From a very young man, he would say that he will never be a vegetable, never be sitting in a wheel chair with his head hanging down; he would take his own life before that happened. He used to say that he’d be dead by the time he was 70, which always upset me.  Ironically,  he was just 71 when he was diagnosed with Alzheimer’s  — and the next 8 years he has had no real life at all.

 

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Parting with Things

In my last blog,  I mentioned finally giving away Bo’s slalom ski. Parting with anything of Bo’s is so hard.  It’s as if I am erasing him piece by piece — the hobbies,  the tools,  the clothes he will never need.  Symbols of loss.

When he was first diagnosed,  Bo was an avid golfer,  going to the links nearly every day.  At the same time, he loved searching for lost balls, coming home with his pockets full of balls he had fished out of ponds and weeds, and storing them in buckets, drawers and boxes.   He was also an avid model airplane builder and flyer, going to the airfield several times a week. Our basement was full of tools, planes, engines and parts.  He wasn’t playing much tennis anymore, but he still went to the courts occasionally, and he went to the casinos in Atlantic City a couple of times a week to play craps or blackjack.

In other words, he was busy; no days were empty.

But then the decline crept in and began to wipe away his interests and skills.  The insidiousness of this hideous disease makes the early stages deceptive.  One day I would  think to myself,  “He hasn’t done …. for a while,”  and soon  he wouldn’t go at all.

Bo stopped building and flying the model planes (some of them VERY big) after the first year,   and after about four years,  I started to think that the airplane supplies should be sold or given away.   It ate at me: how could I part with all of these things that meant so much to him? What if he  realized  that I was removing his hobby?

Finally,  when he had  stopped even going into the basement, I contacted the president of his airplane club who came here on four nights — after Bo was in bed — and helped me pack everything to sell.  We packed it all  into his SUV each night, and finally we also filled my car, then everything was sold at an auction.  Now the basement was empty and I felt guilty, but at the same time, there was a sense of relief.

It took me longer to part with his two sets of golf clubs and thousands of balls. I felt awful parting with them — couldn’t do it until this spring after  he was in the garage one day,   picked a ball from a bucket  and asked, “What’s this for?”  When I told him,  he looked at me blankly, and I knew I could part with all of the golf equipment.  Again I felt just awful because each time that I created an empty  space in the house, I was also acknowledging the blank spaces in Bo’s mind.

I sold his car last year (he had voluntarily stopped driving about four years ago) when I felt sure he wouldn’t even notice that it was gone.   He had made it so easy for me by simply not driving.  There are so many stories about Alzheimers patients who have to have their keys forcibly removed by their doctors or family members.

I wrote about his sad, final trip to the casino in my blog on December 25, 2010   when we went and he didn’t play, just stood there helplessly, then walked out.

I awoke one day last week, saying to myself that I need to start thinning out Bo’s unneeded clothes.  Doing this makes me acknowledge to myself how bad he is.  I want to deny reality even though I’m faced with it every day as I watch him decline so quickly now.  I KNOW that he will never wear his tuxedos or business suits or even his topcoat again.  He won’t wear his black tassel loafers or his golf jackets, his ski jacket, his camping shirt or his tennis shorts.  He won’t.  But I get tears in my eyes as I write this.  How much can I erase of this dear man?  But I have to do it,  I have to do it to help myself.

And so I started.  I took several trips to Goodwill.  I opened the trunk of my car and as the attendant removed everything, I shut my eyes, then I drove home feeling a new heaviness in my heart, realizing how little of him remains in the house … there is no word for this sadness.

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The Man I Knew

I’ve never participated in “Throwback Thursday”  but today I want to.  I need to look at a happy time,  a carefree time, a time when we got up in the morning and thought what wonderful things we could do today.   For many years,  we waterskied almost every day in the summer — and Bo loved it as much as I did.  I last skied two years ago;  Bo hasn’t been on his slalom for eight years.  I finally gave away his ski.

P1030273

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Roller Coaster … Continued

(I actually wrote most of   this blog the first week of September,  right after Bo came home from the hospital  the third time, but  he returned to the hospital the day after I started this and I never posted it. )

Things have changed drastically.

I must be honest with myself —  to look at Bo and see him as  as others must see him, not through my wishful lenses, but realistically —  and when I look at him in this way,  I see how seriously he has declined.  And so fast.  It’s as if he went into the hospital as one man and came out another, and since he’s been home this third time,  he has declined even more.

He seems to be withdrawing into himself. Not unconscious, not conscious, but somewhere in between.

Before, when he called me by my name or  when he asked where I was and waited for me,  I knew that for that moment he knew me,  and I wanted to believe that he needed me, that he would be lost without me.  That he was maybe even better than he appeared.

But yesterday and today,  he hasn’t asked for anything or anybody.  He hasn’t really even wanted to open his eyes or speak or eat or drink.  At times he seems almost unresponsive.  We’ve struggled to give him pills or even orange juice.  I’ve heard many times of Alzheimer’s patients seeming to decide to stop eating and drinking and bringing about their end.

Today he  can barely walk,  taking weak little steps,  almost falling backward unless we are guiding him with both hands.   Jon has to actually get him up or down the stairs; I couldn’t do it.  He’s confused by most things, doesn’t recognize common things.  He doesn’t want to feed himself or even get up to go to the bathroom.  And his remaining language right now is curse words, no doubt because the other words elude him.  If we bother him or move him too much,  he curses.  Always a sweet, kind  man,  he surprises me sometimes when he is annoyed by something simple.

Today he didn’t know how to put on his shoes, how to brush his teeth or shave, and was too weak to stand at the bathroom sink.  His head went down, and then he leaned weakly, needing to be guided by both hands to the bed or a chair. And once  he’s in a chair, he slouches  and nearly slides out of it.

And I wonder.  It’s as if he has slipped into another stage, almost into another consciousness.  And I look at him and ask myself how I will do without him, but I will have to because he cannot go on like this indefinitely.

Jon and I discuss what we will do next, how we’ll care for him.  Will we keep him upstairs?   Do I need to hire a third person who can are for Bo so we can sleep?  Will I have to find a skilled nursing residence for him soon?

______________________

Now it’s more than a week after that blog was written.  Bo returned to the hospital with a fever,  was hydrated and cared for and returned home two days later.  Although he came home and I wrote the blog about his improvement,  I signed on to Hospice and they began their extraordinary support.  And the reality  is that Bo has declined again, almost  back to  where I described him at the beginning of this blog, before his last trip to the hospital.    He knows me and wants me nearby.  He has lost even more weight and obviously feels terrible, everything an excruciating effort, even holding his head up.   He has no life.  The sadness is overwhelming.

 

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The Roller Coaster

When I wrote the last blog,  Bo had taken a huge decline. We took him to the hospital unable to walk,  barely able to get one word out,  basically unresponsive.  He had a fever and residual pain from the blood clot in his lung.  Jon carried him to the car.

But much to everyone’s surprise, Bo rallied. Yesterday when we brought him home from the hospital, he walked into the house and, with Jon behind him, walked up the stairs to our bedroom.  At dinner time  he came back down the stairs,  sat at the kitchen table and ate dinner.  We didn’t feed him.  He used appropriate responses,  spoke a little, and was in a good mood.  After a big bowl of cherry vanilla ice cream,  he was exhausted and wanted to go back to bed for the night.

We are amazed, asking ourselves if  the fever caused this.  If he had a urinary tract infection I could understand because  they can cause confusion and weakness; and UTI’s are always looked for in the elderly.  But he didn’t have a UTI.

At the hospital the doctors and social worker suggested that in order to curtail the frequent emergency room visits,  I might consider Hospice.  That way I would have support and help at home as his condition declines.  A palliative medicine doctor (more about her later) visited with us in Bo’s room and examined him.  Her observation was that this (his condition at the time) is a sign that his body is giving in,  is beginning its inexorable shut down to the end.  I explained that he sleeps most of the day every day at home until we awaken him, and that he only gets two meals a day as a result.  She said to let his body do what it wants.  I explained the kidney stone-clot-fever hospital scenario, to which she replied that frequently dementia patients begin their final decline with something much less minor — even a bump in the leg — and then the body starts to give in.   “Enough,” it is saying.

That was Wednesday; today is Friday.  Today he knows me, tells me repeatedly that he loves me,  and is aware of his surroundings.  He ate two meals plus ice cream, and tonight he was in the kitchen joking with my friends as we played cards.  He was even making comments about the cards in our hands. (His comments are simple but sensible.)

In the hospital we met with the Hospice doctor and coordinator.  As soon as we arrived home yesterday a Hospice nurse visited the house.  Today a Hospice social worker and the head nurse for us visited the house and evaluated Bo.

I knew that accepting the Hospice philosophy might be much harder for Jon than for me.  I have made my promises to Bo.  But Jon, who  sat in on the meetings with me as we decided, loves him so much and just wants to fight for him to keep up his strength.

I felt a great relief when I met Dr. H — .  When she walked into Bo’s room,  I liked her immediately… quiet,  serene,  understanding.  This is what she deals with and it is what she knows.  For the first time in eight years, I felt a sense of relief, that there was someone who really “gets it,”  who knows what is going on with an Alzheimer’s patient. and can give me knowledgeable answers.  I have always felt alone in this. I’ve made my own path with this disease, nobody there to guide me,   say what I’m doing is right or wrong.

And so we enter another day on this roller coaster.  The hospice nurses and Dr. H — will be there to guide and help us when we need it.  They won’t be in our home on a daily or even weekly basis, but they’ll be there.

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Back Again – #4

It’s unbelievable.  I’m sure you won’t believe it.  I don’t believe it.  We’re back in the hospital for the 4th time in 5 weeks.  We brought Bo back last night after just two days at home because he has a fever,  is very unresponsive,  unable to stand,  weak and so much worse overall than he was before.

Earlier yesterday Jon got him down the stairs to the living room sofa by supporting and almost carrying him.  Jon said Bo didn’t understand what his shoes were or how to get his feet into them.   He ate his poached eggs by being fed, but his eyes were shut.  By dinner, he didn’t want to eat and would have to be repeatedly prodded to stay awake long enough to chew food he was fed.  He couldn’t drink from a glass and chewed on the end of the straw instead of sucking.

Later in the evening we realized that the only way he could be put to bed was by Jon carrying him upstairs,  but then we discovered he had a fever and considering how he was overall, decided to take him back to the hospital.   Jon had to pick him up and carry him to the car; he couldn’t  hold his head up in the seat.

His decline is so sudden but the doctor said this isn’t unusual for alzheimer’s patients; a hospital stay or sickness can cause cognitive and/or physical deterioration.  Sometimes something much smaller than  a kidney stone can trigger it.

Our issue now is to decide what to do and how to do it.  I know the hospital will want to send him home quickly, especially since they have a shortage of beds (There were 10 of us waiting for a room last night.)  Can we continue to care for him?  Will he improve any in the days ahead?    Do we need a third person to help us? Going to a rehab isn’t an option with an illness that cannot improve (unlike a broken hip, for example.)

The social worker will meet with me, perhaps today.  I also expect a palliative medical doctor.  A speech pathologist was already here in the room making an assessment of his swallowing/eating ability.  He couldn’t answer most questions that she asked (his last name, whether he lives in California, how to count to 10) but when asked where his wife is, he pointed to me, and on the way up here to the room, he called me by my name. Mostly, he sleeps.

The sadness of all of this is overwhelming.

 

 

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Home Again … Again

Bo came home again today, after his third hospitalization in five weeks.  This time he only stayed two days.  He was diagnosed and treated for a blood clot on his lung, apparently a result of his other hospital stays and/or the kidney stone surgery.

I had no idea how much pain is involved with a blood clot.  We couldn’t touch his back or side without hurting him.  He couldn’t move,  get up or lie down without extreme pain.  And he couldn’t tell us what was happening.

Now he’s here on his bed, taking pain pills and something to try to dissolve the clot (at least I think that’s what the new medicine is for) and he’s weaker than he was two days ago.  And thinner.  He is 20 pounds under his normal weight.

This afternoon after he walked to the bathroom and back, I got him to eat 4 spoons of soup and a small container of apple sauce.  Then he fell asleep again.  I’ve spent the afternoon sitting nearby doing  work for my first fall class tomorrow.  I got to come home and sleep last night, so Jon is catching up on his sleep now.

What will happen next?

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Third Trip to the Hospital

It’s Saturday morning  and I spent the night  in the emergency room with Bo.  Our third visit.  He’s back — with pain, extreme pain, in his chest and back and with a fever.  It’s been coming on worse and worse for three days and after dinner last night Jon and I knew we had to bring him back here.

It’s not fair.  Not fair at all that he has to undergo all of this.  The pain started out as a cramp or perhaps, we thought,  a bruised rib.  But he hadn’t fallen, had no bruises, and of course he can’t tell us what’s happening most of the time.  One time he will be cursing in pain and the next when we ask where it hurts, he has so response.  But one thing for sure,  we knew it hurt him each time he moved.

After X-rays and a CT scan, it was determined that Bo has a blood clot on his lung.  He was given pain medication so he could sleep, and I sat up all night beside him.  Jon dropped us off, as has become our habit now, and went home for some sleep.  He’ll relieve me later today but I need to stay until all doctors have visited and a determination has been made about Bo’s medication.

Right now I’m eyeing the breakfast tray that was dropped off.  I should awaken Bo so he can eat since he’s lost so much weight, but he doesn’t want to wake up and eat.  Dare I eat those eggs and pancakes?

 

 

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