Love & Hate

Husband was pretty quiet yesterday.  I spent the better part of the morning doing housework and laundry.  I checked the laundry room around 8 am, no one was there, so, I got my laundry done in less than 2 hours.  There are several laundry rooms here and each one has 2 washers and 2 dryers.  They are very nice and what I like is the dryers don't wrinkle your clothes.  I use both washers and dryers, getting my laundry done in half the time.

The apartment is small.  I tidy up each day, so, when Saturday comes, not much to do but vacuum, dust if needed, sterilize bathroom, change sheets on bed and am done before noon.  A far cry from the bigger houses I've lived in.  I like this small apartment living.

Husband sat in his scooter chair as I cleaned.  He was in and out.  Not agitated, but, still seemed a little confused.  When I was done, I got him back on the bed where he rested the rest of the day.  He slept some, watched some TV, but, for the most part, he was quiet.

He slept good last night.  I woke up once to find him in the bathroom.  No delusions, just had to go to the bathroom.

This morning is bath day.  He has come to really enjoy his bath.  Always tells me how good it feels and how good he smells afterwards.  I powder him with Shower to Shower body powder.  I put his deodorant on him as well.  This morning, I'm going to try to master shaving him.  He usually does it himself, but, it's not done very well.  He misses big areas and it looks odd.  So, another thing for me to learn.  We'll see how that goes.

I wish we could go to church.  I miss it, but, with husband's condition now and as much as he has declined, I'm afraid it might be too much on him.  We will stay home and have a quiet Sunday.

Right now, the roller coaster has come to a stop.  Oh, the monster will rear it's ugly head again for sure.  I don't know when, but, I'll take this little reprieve.  I need it to re-group.

I take it one hour at a time.  It's all  have.  I have a love / hate relationship with Alzheimer's.  When it's good, it's great.  When it's bad, well, it's bad.  Ugly in fact.

I feel as if I'm walking on thin ice.  It's so fragile.  One wrong step and it cracks.  Disaster.

Yes, this is what its like to live in my house, on any given day.

    

Rough ride ahead!

Husband woke me around 5 am this morning.  He was confused and agitated, telling me to go pick up a coke for him.  He said he had already paid for them for them, he just needed me to go pick them up.

I got out of bed, still groggy from a rather decent nights sleep.  I didn't know what to do, so, I told him we had can cokes, no fountain cokes.  Of course, I wasn't about to give him a coke at 5 am, but, wanted to go along with whatever he was telling me.

He couldn't find the bathroom.  I had to steer him to the bathroom.  He was so agitated.  He asked me where are we?  I told him we were home, in our apartment.  He was having none of it.  Told me no, he was on his lunch hour and had gone to get 2 fountain cokes, said he had paid for them, he wanted me to go get them.

I've got him settled back in bed now, he seems more relaxed.  I hope he sleeps for a few more hours.  Me?  I made an espresso.  I can't go back to sleep.  Even my dog is edgy.  He won't go near husband.

The last few days have been calm and quiet.  I was so hoping this wouldn't happen again.  Who am I fooling?

We have now progressed into the unknown world of Alzheimer's.  To look at husband's eyes when the delusions begin is haunting.  And scary.  His whole face takes on a different look.  He doesn't look like husband.  He goes to a very dark place.  He looks so lost.  To watch him look around, trying to find something familiar he can grasp.

Inside, I am shaking.  My heart hurts.  On the outside, I have to play pretend that this is all normal.  If I don't, it only makes things worse for husband.  And for me.  And no, I didn't read that somewhere.  I've had to learn all this on my own.  There is no guidebook on dealing with an Alzheimer's patient. Once again, you fly by the seat of your pants.  Trial and error.  Fun stuff I'm learning.

This is where it gets difficult.  And yes, I actually did read that some time ago.  This is where they become completely lost.  This is where they enter into unknown territory.  And, nothing can be done for them.  Drug em' up to keep them calm.

I am not ready for this.  I can only hope and pray that I do him justice.  That I treat him with dignity.  That I don't lose it.  It's all on me.  I've got to find the strength to get through this final stage.

Here we go, folks.  Digging out my big girl pants, finding my safety helmet, strapping myself in for a rough ride.  It's going to get bumpy.

Dr update

Dr appt went well.  Husband was nervous all the way there.  Kept repeating the date over and over.

After examining husband, Dr told me that he was not going to prescribe an anti-psychotic drug at this time.  He said that it looked like this was an isolated incident, that removing the mirrors made him more comfortable, so we will leave that alone for now.  He did, however, up one med that I usually give him only in the morning.  I now have to give him another after dinner.

Dr A said he will see him in 4 months but to call if we have more delusional episodes.  He said it will probably happen again, as the brain dies off.  He told me that, yes, husband has rapidly declined since we saw him in December, but, it is the nature of the beast.  Where most people suffering from Alzheimer's decline at a slower moving pace, husband's form of Alzheimer's is more rapid, a rare form affecting those at a much younger age.  

I felt better once we left.  I trust this Dr.  He knows his Alzheimer's.  For this Dr to call me personally on more than one occasion, well, you get the picture.  He said that as much as he has dealt with Alzheimer's patients, he has never treated one as young as husband.  Read about it, learned about, but until husband, it was only in textbook.

Husband was in better spirits on the way home.  He ate a good dinner, I got him undressed for bed and under the covers.  I knew once I gave him another dose of one of his meds, that it would make him fall asleep.  I didn't want to have to wake him up, change his diaper, undress him then get him under the covers, why, it would be too much.  Of course, it knocked him out, making my evening peaceful.  Around 9, I had to give him his other med.  I woke him up, sat him up and gave him the other med.  He was out of it, being woke up and told to take another pill.  It took some coaching, but he did.  He was agitated that I had woke him up.

Glad I had prepared for the 9:00 PM med, as I could not imagine changing his diaper, changing his clothes and getting him into bed at that time, after taking the upped dose after dinner.  One, Yay for me.

I want to have a quiet day today.  I am not feeling well. Drained, in fact.  I slept good last night, but, woke up tired.  My emotions have been all over the place these last few days.

So, for now, I will do what Dr A said to do.  Watch for anymore delusional behavior, which he said will happen, we just don't know when.  Make husband as comfortable as possible.  Keep home life calm.

Last night, as I sat here, alone, watching TV,  I began to have selfish thoughts.  I said out loud, to no one, it's not fair I have to go through this.  I'm not a Dr, a nurse or trained in Alzheimer's.  It's just not fair.  Why me? Woe is me.

So, I had my pity party last night.  Today I will put on my doctor suit, talk like a soothing nurse and act like I wrote the book on Alzheimer's.

Oh, silly me!!

Jack's 14 day leave & a birthday

So glad we are seeing Dr A today.  I should learn something about Home Health Care also.

Melanie is giving me a copy of husband's final diagnosis.  She said I need to take that down to Social Security.  She explained that Social Security does not recognize Power of Attorney  (which I already am over husband), that I have to take confirmation from Dr.  I asked her why I had to do that now and she hesitated and said, "It's time."

Husband seemed nervous about going to the Dr last night.  Dr asks husband a lot of questions.  Like, where are we, what floor are we on, what day of the week is it, what is the date.  He came to me last night and asked for a pen and piece of paper.  I asked why.  He said, "Well, the doctor is going to ask me the date tomorrow and I want to get it right."  He couldn't spell February, so he put Feb.

Later, I checked in on him.  There he sat, on the edge of the bed, holding that piece of paper and staring at it.  I asked if he was OK, he nodded and said, "I'm studying."

I had to take Kristen on a few errands yesterday morning.  Of course I was taking husband.  Gone are the days when I could leave him for a few hours.  As I was getting him dressed he said, "Is Jack going to watch the dog?"  What?  I calmly explained that Jack was not here, he's in the Air Force now.  He looked at me confused but did not say anything more.  I took the dog with us.

The rest of the day was spent quietly.  Husband slept a little.  Confusion is constant now.

Jack will be coming home on a 14 day leave.  Be still my heart.  While I am beyond excited to see him, seeing his dad will be something else.  I have to warn him ahead of time.  I just don't know how I'm going to do that or what I'm going to say.

Just when I think husband is completely gone, he surprises me.  When I told him the date when Jack comes, he thought for a moment and said, "That's my mom's birthday."

He is right.  March 4th was her birthday.

A Doctor visit

And the saga with mirrors continue.

When husband woke yesterday morning, he sat on the side of the bed and told me we had to "make a plan to get rid of the people in the closet."  With my heart in my throat, I told him OK, what was the plan.  He cleared his throat and said, "Well, we have to go to the bank and tell them about this.  Do you think they can help us?"

It was then and there I decided to call Dr A's office.  I was uneasy about all of this.  Scared.  At 8 am sharp, I was on the phone.

I had called the D's office last week to set up Home Health Care, but, kept missing Melanie's call back.  When I got through, I told the receptionist this was urgent, I needed to speak with Melanie ASAP.  After listening to me tell them of the "people in the closet", I was put right through to Dr A's wonderful nurse, Melanie.  To say she is compassionate and caring would be an understatement.  She told me that she has been in contact with the home nursing program, but, was still working on it.  Said we should be able to have a nurse by early next week.

She was quite concerned about this sudden turn of events with husband.  She said Dr was at main hospital clinic, but, she would put an urgent call through to him and get back with me.

Around 1:30, that beloved Dr A called me personally.  I told him everything.  I know I was blubbering at times, but, God Bless him.  He listened with an occasional, "Uh huh", or "My, my."

He told me he had heard of some patients becoming obsessed with mirrors.  Said he had not actually seen it, but, had heard of it.  He said it was not really hallucinations, but delusional behavior.  He explained that these patients no longer recognize themselves, so, if they see themselves in the mirror, they will think it's someone else.

Dr wants to see husband tomorrow.  Wants to see where we are at and may prescribe an anti-psychotic agent to help with the delusions.  I am relieved that husband will be seen.  Dr said he is concerned about this sudden decline, but, said it is not unusual.  Whew.  He also said maybe I should call the office and request them to take the mirrored doors away.

I began to relax a little last night.  Then, around 8 or so, husband became restless.  I went into the bedroom to find him on his knees, staring into the mirror.  He was making a stabbing motion at the mirror.  He told me he was trying to get the stuff on his nightstand and couldn't.  Once I looked at what he was doing, it dawned on me that he was trying to touch his stuff on his nightstand from the reflection in the mirror.  So glad we are going to the Dr tomorrow.

Husband slept decent last night.  Which means I slept decent.

The mirrored closet doors are going out today,  if I have to take them out myself.

In a way, this rapid decline is good.  If it means husband will leave this earth sooner and not have to suffer long, then I'm OK with it.

Only God knows when the time is right.

 

Mirror, mirror

Very quiet, low key Sunday.  Even on Super Bowl Sunday.  I'm not a football fan, but, in the days when husband was well, we did get caught up on all the hoopla that is Super Bowl Sunday.  My, times have changed.

Some of you have asked when was the last time I had a good night's sleep.  I don't remember.  I sleep with one eye open nowadays.

Another question was do I worry husband will leave the house in the middle of the night.  Yes, hence, sleeping with one eye open.

Last night was no different.

Husband was restless in the evening.  He called me in the room and very politely asked me to ask the man in the closet to leave.  I showed him again our reflection in the mirror and told him there was no man there, it was him.  He said, "I know you say that is me, but, I don't think so.  He scares me."

When it was time for bed, I was turning the bed covers down, husband was beside me, looking scared and confused.  When I got to my side of the bed, husband said, "What about those people?", pointing to the mirror.  I looked in the mirror and saw two people, husband and myself.  I said, "Those people are you and I, honey."  He hesitated, I told him to go to the bathroom and I would tuck him in bed.

He finished in the bathroom, came halfway out and whispered for me to come to him.  I got to the bathroom door and he whispered, "Do you think we'll be OK?"  "Of course we'll be fine," was my response.  "No, I mean, that man in there, he scares me.  I know you say that is me, but I know that's not me."

I convinced him to come to bed.  He was hesitant.  I opened the closet door so he could not see his reflection.  That seemed to ease his mind somewhat.  He said if the man came at him, he was going to shoot him.  Oh boy.

I got into bed, told him I wouldn't let anyone hurt him, I was there to protect him.

When most people go to bed, they look forward to relaxing, snuggling under the covers and going to sleep.  I, on the other hand, went to bed last night with a feeling such dread.  It took me awhile to fall asleep, only to wake every half hour or so to check on husband.

Around 1:30 am, I woke up and he was not in bed.  Panic!  He was in the bathroom.  He came out, naked , of course.  I got him back in bed and he slept the rest of the night.

I got up at 5 am.  I'm tired.

This is not good.  Final Stage 7.  "They" say that's when the hallucinations begin.

We have arrived to the Final Stage 7.

The Man in the closet

Where to begin?  These last few days have been rough.  Husband is slipping away from me.  He's here one minute, gone the next.

Alzheimer's patients become somewhat obsessed with the oddest things.  Husband is no different.  For some reason, he has become obsessed in organizing and re-organizing his nightstand, cabinet under his nightstand and his side of the closet.

After about two hours of this last night, I heard him moaning while sitting on the side of the bed.  I waited for a few minutes then went in the bedroom.  Let me explain something.

Our one wall in our bedroom is closet.  There are three mirrored doors.  On the inside track on either side are a slider door.  On the outside track is the middle door.  That was easy, right?  Not to an Alzheimer sufferer.

OK, so I went in there and showed husband how they close.  That's all he wanted to do was close the  closet doors, he said.  Showed him again.  He seemed like he understood.  Went back to watching a show on TV.  He began to moan again.  Went back in there and it happened again.

He did not recognize me.  It lasted longer than the times before.  Then, he told me he needed to get that man out of the closet.  I asked, "What man?"  He pointed at himself in the mirror and said, "That man."  Making light of this, I laughed and said, "Honey, that's you in the mirror."  He looked at himself in the mirror and did not recognize himself at all.  It took a few minutes to convince him.  Finally, he asked, "That's me?"  "Yep", I said.  We laughed about it, I got him back in bed, told him to rest.

That one rattled me.

Friday night and into the wee hours of Saturday morning was fun.  I woke up to find husband had made the bed on his side and was sleeping under a throw blanket.  Asked him what was he doing, he began to slur his words and mumbled something.  This was around 1:30 am.

Woke up around 4 am to find husband wandering the apartment, naked.  His wet diaper was on the bedroom floor.  Steered him back to the bedroom, put a fresh diaper on him, tucked him into bed and got a little more sleep.

He slept most of the day yesterday.  I made him his favorite dinner.  He didn't eat as much, but, said it was delicious.

I am hopeful the nurse will start this coming week.

I had a dream last night.  Husband's mother was in the dream.  Could it be that she is letting me know she's coming for husband?

I don't know how to respond to that right now.