Husband's last camping trip

Husband's last camping trip

Sunday, March 31, 2013

Special dinner and a guest!

He is Risen.

Happy Easter to all.

Day 2 of this new anti psychotic medicine.  Husband started to get angry, but, after giving him the med, he quieted down and watched TV.  By 9 PM, after giving him his other pill, he went to sleep.  He slept all night.

He went outside yesterday afternoon by himself.  In his scooter chair.  He sat outside for about 2 hours.  Fresh air.  He has been somewhat quiet the last few days. 

Before diagnosis, I always thought giving someone high powered drugs was a lazy way to care for someone.  It meant that the caregiver could relax and not have to deal with any issues in regards to a very ill patient.  I thought it was a cruel way to care for someone suffering.

Fast forward to the here and now.  Now, I see and understand the importance of these high powered drugs.  It's not because I'm lazy, cruel or just don't care.  Just the opposite. 

So, if keeping him on these drugs for his safety, my safety, his peace of mind and all around general well-being, then, so be it.

I am still depressed.  When I think of placing husband, I remove it from my mind.  Don't want to think about it just yet.  Not now, I tell myself.  Later, I tell myself.  Another day.  I have time, I tell myself. 

I got a small ham for our Easter Dinner.  I told husband what I'm making for dinner.   At first, he didn't know it was Easter.  Then, he shrugged his shoulders and mumbled something.  He used to enjoy my cooking.  That's gone now.

I invited a neighbor of mine here at the apts.  She is so sweet and has medical issues.  She lives alone and told me one time she gets lonely.  When I invited her, her little face lit up.  I told her what I was cooking and she said, "My kind of meal."

I made someone happy for today.  Makes me feel good. 

Feeling good is not something I experience much anymore.  So, if making a lonely person happy, well, it's good for my Soul.

May your day be filled with the wonder of the Risen Savior.

Saturday, March 30, 2013

Time to let time take care of itself

Thank you for your comments. 

I called the Dr's office first thing yesterday morning.  Within 2 hours, they located Dr A and he called me personally.  That's the kind of Dr he is.  I am so thankful that he is not the kind of Dr that will just hand out drugs and not care.  Even though our outcome is grim, he still cares.

After telling him what had happened (Another post, another day,  still too scary to put into words), he wants to see him on Monday.  They worked us in.  He also said it was time for anti-psychotic to be given.

As we were talking, he told me that by Fall, we may have to look into putting him into a nursing facility.  I knew that was coming. I said, "Do you think he will still be around by Fall?"  Dr was silent for a moment and said, "Honey, I don't know".

There.  It's out there.  He may not live past the summer.

I told him after researching, I believe he has a form of what's called Sundowners, associated with Alzheimer's.   He chuckled and said, "You are a very smart woman.  As I listened to you talk, I am thinking the same thing."  He said with it getting dark later and later,  it may ease some of his symptoms.  However, I told him,  these night terrors occur in the middle of the night. 

I picked up the anti-psychotic med in the afternoon.  He took it last night and slept like a baby.  The tremors and jerking seemed less as well.

Me?  I slept with one eye opened. 

I am still depressed this morning.  Still tired.  I am coming to a cross road.  I have to make a decision within 6 months.  To place or not to place?  Not an easy decision.  I want to do the right thing.  I want husband to die with dignity.  I want him to be cared for the way I care for him. 

My mother always said, "Time will take care of itself."

Our God says, "Do not worry or fret, for time will take care of itself."

So, instead of worrying and fretting, I will let time take care of itself.  Not so easy, but, if God says it and my mom says it, I guess it is so.

Friday, March 29, 2013

Night Terrors

And so it begins.

Rough, rough night.  Hallucinations, delusions and not knowing who I am.

By 3 AM, I got scared.  Really scared.

Calling Dr A today.  Being that it is Friday, Good Friday no less, I am going to get the Dr on stand by.  Just in case I have to bring him into the ER.

It's really happening now.  That final, awful, worst part of this disease only one could imagine.  And if you can imagine it, times that by 100.

This is the part I've dreaded the most.  The dying part?  Walk in the park compared to this decline into the unknown world of Alzheimer's.  This maddening disease, where your loved one goes mad.  Loses all that is known to him. 

I don't want to go through this.  I don't want to watch him.  I don't know if I have the strength to go to the depths of hell, only to have husband die.  And, what's in it for me? 

Widow.  That's all I'll get out of this madness.  I'll be labeled "Widow".

I am asking my God for strength today.   

Thursday, March 28, 2013

Happy Anniversary!

On this date many years ago, I said "I do".  If you're anything like me, I did not pay attention to the vows.  I was just goo goo over my husband.  I was taking his name, we were an official couple.  It was so blissful.  Happy, happy.

Fast forward to today.  My handsome husband has become like a child.  He cannot walk, talk right or remember much.  I bathe, shave and dress him now.  He wears diapers.  His eating has become sloppy, making a mess with each meal.  He has tantrums.  He gets angry when he doesn't get his way.

He's dying.

Lately, as our wedding date approached, I started thinking about the vow, " In sickness and in health."   I recall that vow, never thinking for one moment that it would come to this.  Who does?

Then, there's this vow:  "Til death do you part".  Who would've thought?

Today, as I bathe him, dress him and feed him breakfast, I will think back to that day, many years ago.  I will look into those eyes that were full of life once, kiss him good morning and say:

Happy Anniversary!

Wednesday, March 27, 2013

A check-up for me

Rough day yesterday.  Husband was all over the place mentally.  In and out of reality.  Kept me on my toes for sure.  Night before last was one of those nights where sleep would come, only to be woken up with husband's talking crazy.  Yes, it's been a rough few days.

He seemed to calm down by afternoon.  I suggested he lie down and rest.  He would not go to sleep, but, did rest some.  By evening he was back to reality.  He slept good last night, which means I slept good last night.

I am hoping today will be relatively normal.  Or, shall we say, a "normal" for me.

As I was bathing him the other day, I noticed his left leg is skinnier than his right.  Seems odd, but, in the beginning of this journey, 4 years ago, his left leg is the one that started to drag.

Tomorrow is our wedding anniversary.  Not sad about it.  Not happy about it.  It's just something I now acknowledge and go on with my day.

I went to my Dr yesterday for my yearly check up.  I checked out OK.  Blood pressure was normal.  He told me I was handling all of this wonderfully.  This Dr was the first one I took husband to who referred us to Neurology back in 2010.  He always asks how husband is doing.  Told me to take care of myself first, then tend to husband.  Said there is nothing we can do for him anymore.  Give him love, care and understanding, but, bottom line, I am the one who will survive this journey.

It sounds cold, but, he is right.  Of course, I will never neglect husband over my needs, but, I do have to think of me as well.  I'm finally getting to that point.

The grass on the grounds of the apartment complex is starting to turn green.  New leaves are starting to bud on the trees.  Mornings are pretty.  Birds are beginning to sing.  I am seeing more and more people out and about.  Spring.  The promise of re-birth.  How ironic it seems to me now.

Today is a new day.  I am holding my breath that today will be OK.  I'm always like this right before he wakes up.  There are days he wakes up and seems fine.  Then, there are days he wakes up and it's challenging. 

So, here's hoping for a "normal" day.  I sure could use one of those right now.

Monday, March 25, 2013

Acting "normal"

Had a wonderful weekend filled with surprise family visit.

Justin & Anne surprised us Saturday.  We visited here at the apartment, then it was off to the mall, then they took all of us out to dinner at a Japanese restaurant.  I tasted things I never thought I would taste.  Loved it all. 

It felt so good to get out and act "normal".  I wanted to forget all about Alzheimer's.  I wanted to feel like I used to feel.  It worked for a few hours.  I actually laughed, and had a weird sensation.  I had felt it before, but, kept trying to put my finger on it.  Finally, I realized what it was.  It's called relaxed.  I remember that feeling, a long time ago.

Yes, it was nice.  I re-played the whole day in my head yesterday.  So, so nice. 

Oh, a funny thing happened while at the restaurant.  We were waiting for our food, the place was jammed packed.  Suddenly, I heard a loud commotion behind me.  People were yelling and banging.  I looked ready to dive under the table when my Marie said, "relax Mom, it's sort of a little thing they do when there is a special occasion".  Anne looked at me curiously and I said, "You'll have to forgive me. I don't get out much."  Oh, what a good laugh we all had.

Husband had not been doing well, so, it was nice to get him out.  He has been very confused.  Sleep has been difficult.  His wake hours have been difficult.  He's just, well, leaving us. 

As we were sitting around this big table at the restaurant, noises, laughing, talking, I looked at my husband.  There he was, completely oblivious to everything around him.  The blank look as he glanced around the table and all who were his family, nothing.  No recognition of anyone.  But me.

I shrugged it off, refusing to let it bother me.  Not then.  Let me just play pretend we are like any other normal family out for a Saturday night dinner. 

Yes, it was nice to play pretend.  I got to act normal again.

My children.  Oh, what a wonderful time this weekend.   It gives me such a warm feeling.  I will cherish this weekend for a long time.

Friday, March 22, 2013

Pruning

Because I can no longer go to Church, I was looking on line for a Bible Study of sorts.  I found a daily bible study and devotional.  As I read it this morning, it talked about how God prunes us in times of sorrow, making way for an even greater outcome once we begin to blossom again.

How powerful is that?  I felt as if that was written for me only.  Who knows what I'll be like when husband is gone.  Is God pruning me for greater things?  Will I blossom and be a stronger person through all of this sorrow?  Only God knows, but, after reading that, well, it just made sense to me.

I can't wait to read tomorrow's passage.

Husband still holding steady.  No big changes to talk about.  He became a little depressed in the afternoon, slept some and woke up forgetting all about being depressed earlier.  It's like that.  He can be focused on something, goes to sleep, wakes up and forgets what he was focused on before.

Another perk of Alzheimer's.

Today is bath and shaving day.  He loves his baths.  He relaxes in the tub and while he is doing that, I make the bed and put fresh clean clothes out, along with a fresh diaper for him.  Once in awhile, he will ask me if I'm putting out clothes for "the man".  I tell him yes, but, not his clothes, "the man's" clothes.  He is satisfied with that answer.

After his bath, I will fix his breakfast, he eats and back to the bed to lay down.  His legs are not so stiff after a bath.  After about 5 minutes of being out of the tub, the stiffness comes back.  That's the hard part.  Trying to dress a grown man with stiff legs.  My back always hurts for a good while after dressing him.

Husband wants to go to Walmart and Best Buy today.  He wants to get a hand held GPS.  Why, I don't know.   I explained to him I don't have money for that, but, he says he wants to look anyway.  I will have to make up an excuse as to why we can't go today.

When the rough patches come today, I will imagine myself as a plant that is being cut down to it's roots.  It will hurt, this pruning, but, in the end, I will emerge stronger and better than before.

Thursday, March 21, 2013

A Brand New Laptop

Coming to you live from my BRAND NEW LAPTOP!!

A member of my family bought me this wonderful machine.  I can't thank her enough.  I was so used to my old one, I didn't realize just what a dinosaur it was.  It was a good laptop, 8 years old, but, oh, this one?  Why, it's so state of the art, it'll probably cook your meals if you ask it!

I'm still learning all the functions and features, but, I'm in heaven.  Oh, be still my heart.

Father in law came for a visit yesterday morning.  What a different man he has become.  I enjoy his visits now and look forward to going to his house for visits as well.  He is very tender with husband.  You can see the pain in his face, but, he does his best when around husband.

Husband has been OK this week.  No big changes to report.  Mostly constant state of confusion, but other than that, it's been OK.

I was reading my blog yesterday, back to when I first started blogging.  As I was reading some of my earlier posts, I kept saying husband didn't have long to live.  Here we are, 2 years out and he's still here.  I was warned by all the professionals that with his type of disease, you just never know.  They weren't kidding.

We are approaching his 48th birthday.  One that his mother, brothers and father never lived to see.  While I am happy to say he's still here, there is also a feeling of dread inside of me that this will be his last.  But, who knows? 

There are days that if I dare think to when he is gone, I lose my breath.  Then, there are days as I watch him struggle and suffer, I pray the Lord to take him Home.  Then, the guilt sets in and I feel horrible. 

Man, this is hard.

I am still trying to get some Home Health Care here. Seems if you have Medicaid, all doors are open to you.  But, if you have Medicare, you have to pay for nurses to come to the home.  Obviously, they, the "professionals" think if you have Medicare, you've got money to pay for private, in-home care.

One day, I shall go to Washington, DC and change all of that.

In the meantime, I care for him myself.  It's not easy, no sir, but, I'm all he has.

Jack has been working at the Recruiting offices, so, we haven't seen too much of him.  He will be done the end of this week.  Then it will be time for us to spend together.  Looking forward to that.

So, my first post on a brand new laptop.  It was fun!!

Tuesday, March 19, 2013

Rolling with the punches

Laptop is cooperating again this morning.  The charging post on my laptop has become loose, making charging almost impossible.  Once the battery goes dead, well, good bye all connections.  It's quite costly to get it fixed.  Plus, the laptop is old, very slow and sluggish.  Almost time to retire the old gal.  But, I'm here this morning.

Husband had a quiet day yesterday.  He was very confused in the morning, came around a little during the day, and as soon as the sun went down, confusion set in again.  I believe he has a form of Sundowners.  I read that if you start turning on lights as soon as it starts to get dark it's helpful.  It does seem to help him.

The "man in the closet" is still here.  Husband has come to terms with it and is no longer afraid of "him".  In fact, he talks to him daily.  The other morning, he was standing at the closet telling "the man" that it was going to be alright.  I asked him why he said that and he said, "He's scared."

He is now "sharing" clothes with "the man".  When I get him dressed, he asks me what is "the man" wearing today?  I tell him "he" is wearing Levi's and a T-shirt.  Seems to satisfy him.

Yesterday morning, as husband was going into the bathroom, I heard him say, "Leave me alone."  He then asked me to tell "the man" to get out of the bathroom.  I did.  He liked that I "spoke" to "the man".

Who is this "man?"  I don't have any answers for that.  I believe husband is in a constant state of delusion now.  It's ever present and for me to have gotten used to it is something I could not have imagined.  It's just there all the time.

Ironic how one can get used to anything.  I'm living proof of that.

I'm rolling with the punches nowadays.  One day this will all come to an end.  Who knows?  I may miss "the man".

Monday, March 18, 2013

Family Time

Sorry for the lack in posts.  I had family in all last week, Tish & Jace came, plus, this laptop is really giving out.  I need to take it in and have it fixed.  Lack of funds prevents me from doing so.  So, I'll make this post quick.  Oh yes, Jack flew home on leave last Tuesday!!

Husband is not doing well at all.  Memory issues abound.  Early morning and night time are the worse.  During the day is so so.  Tish got to see first hand what my day to day living is like now.  It's not easy, nor, is it fun.  Her heart broke when she saw husband.  She just went to him and gave him a big hug.

We had two family get dinners this past week as well.  Husband enjoyed them both.  It was so nice to get out and laugh.  Oh, the family stories we told.  Yes, that made my heart happy.

Father in law got Jack aside and told him his dad is not doing well.  I had warned Jack before he came home.  For father in law to actually realize this, and to actually say it out loud, well, you know it's got to be bad.  Father in law told me he was going to step in a be a dad figure now that our dad is basically gone now.  That made me cry.

For my father in law to come as far as he has come is hard on him.  That is his only son, his only child.  I see his heart breaking, I see the pain in his eyes.  He is so gentle with husband.  Talks to him softly, helps him to a chair.

Yes, my Jack is home until April 6th.  He leaves that day and flies to Germany where he will be for 2 years.  My has that boy grown.  So proud of him.

Yes, it was a very nice week, with the exception of husband, I couldn't of asked for a better week.  My heart is full.

Tuesday, March 5, 2013

Alzheimer's Seminars

Well, Dr appointment went well.  The Psychiatrist was very nice.  She said she didn't think he needed to be seen on a regular basis.  I agreed with her.  She said the delusions will become more and more apparent, but, do what I've been doing so far.  Don't make a big deal about any of it.

She asked him about the "Man".  He said it was real to him but, did not think he posed a threat to husband.  He just said he is always there.  And, wears his clothes.

Glad that is over with.

Husband has been in good spirits these last few days.  We did however, have a rough night last night.  He was thinking we were on a plane and kept telling me to duck my head.  Around 5:30 this morning, he woke me up and asked me to get his brand new white sweater he had just bought.  I have a white sweater, so I gave that to him, told him to put it on.  He looked at it over and over and finally said, no, that wasn't the one. I got him back to bed now, he is asleep.  Seemed a little agitated and confused.

My neighbor brought me an article in the paper about the local Alzheimer's Caregiver's seminar they are beginning.  It's every Thursday from 10 am til noon.  It starts this Thursday, and goes for 7 weeks.  I am going to attend.  It may give me some information I may not know about.  She has offered to watch husband and the dog.  I have to start somewhere.  Actually looking forward to going.

After being woke up from a deep sleep with husband acting as he did, I am in deep thought.  I'm also tired.  I shouldn't think.  It's not good for my health.  I don't know why I get this way when he has delusions.  Maybe because it's still pretty new to me?

Husband is beginning to get restless again.  He is not in a good frame of mind this morning.

We shall see what today brings.

Sunday, March 3, 2013

I'm a Super Hero!

My husband thinks I am so smart.  He told me so yesterday.  He was excited when he told me this.  He actually chuckled as well.  Know what I did?

I changed his light bulb on his bedside lamp.  It had gone out.  Husband was fretting about it all morning.  As I was changing it, he kept saying, "It's broke.  It won't work."  I put the new one in and turned it on.  Oh, the look on his face.  Priceless.

Last night, he would sit up in bed, turn the light off and turn it back on.  Each time the light came back on, his face would light up.  He told me he was proud of me.

Alzheimer's patients are something, I'll tell ya.  They keep you on your toes.  You never know what side of the rainbow you're on, day in, day out.

They get excited at the smallest things.  Like changing a light bulb and it magically works again!

Yes, it was a good afternoon.

We are having what I call "fake" spring weather.  It was beautiful yesterday.  I coaxed husband outside in his scooter chair.  He loved it.  He spent about 2 hours outside.  As my neighbors would walk by, they would say "hi" to me, then look at husband as if to say, "who's that?"  I introduced him to our neighbors.  He would nod his head to them.

Been here almost 2 months.  He finally got to meet some of our neighbors.

I am still fighting this Home Health Care.  Seems a lot of organizations only go by state Medicaid, to which we don't have.  Husband is on Medicare.  I was told by one organization that they only charge $20 per hour, 3 hours a day, 3 days a week.  You do the math.

My next step is calling Medicare and have them do the work for me.  Let them find me a program that Medicare will cover.  Until then, I'll care for him myself.

Tomorrow, I take husband in for his Psychiatric Evaluation.  I wonder how that will turn out.  Stay tuned.

Jack graduates from Tech School tomorrow.  He said it's no big deal, not like Basic Training.  He is graduating with a B+ average.  Smart boy.  He is coming home on a 14 day leave sometime in the next few weeks.  Be good to have him home.

A good weekend.  I'm in a better place than I was earlier in the week.  God has given me renewed strength to keep marching on.  It's not easy.  Just when I thought all was lost and thinking I can't go on, He swept in and renewed my Faith and Strength.

And,  I thank Him.

Amen.