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.

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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?

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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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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.)

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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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