Moments

Christmas is next week.  Where has the time gone? 

On the home front, we're in what I call a "holding pattern".  Husband's BP has been stable.  Memory?  All gone.  He retains nothing.  He sleeps 16-18 hours a day.  When he is awake, he sits in a somewhat stupor.  He still talks to someone, usually up in the corner of the ceiling.  It used to be every now and then.  It's daily now.  His jaw is jutted out, with his bottom lip turning outward.

Husband does not know how to use the toilet, or, for that matter, what it is doing in the bathroom.  He wants to move it away from the sink and when it won't move, he gets quite upset.

The "visitors" are coming more frequently, I've noticed.  "They" only come in the middle of the night.  I will wake up to hear husband laughing.  This laugh sounds not of this world.  It's a haunting, beautiful, Holy sound.  That's the only way to describe it.  It used to scare me.  Now, it's comforting, knowing "someone" is there.

And me?  I'm doing fine.  I am looking forward to Christmas.  I've bought husband gifts.  He will have a nice Christmas.  I am determined to be happy and not become bitter.  I think I"m doing an OK job of that.

I have come a long way since diagnosis 4 1/2 years ago.  I've grown.  I've changed so much.  I take it as it comes now.  Some days I wake up and look at husband still breathing and ask God, why?  Other days, I see him still breathing and thank God for another day.  It's like that.

Husband wants me to start reading him the Bible.  When he wakes up this afternoon, I will read him passages from the Bible.  I hope he likes that.

It's bitter cold now.  I try to keep a fire in the fireplace when husband is on the couch.  He tells me he likes that. 

I love making him smile.  When he smiles, I know I've made an impact on him.  I've made a connection with him. 

It's those very few precious moments that I will cherish.

Changes

Yes, I know, it's been almost a month since my last post.  Every time I come here to post, I am interrupted by nurses, phone or husband.

I have had a very scary few days this week.  Husband's blood pressure has been lower than normal for the past few months,  but, I've just been watching it.  However, on Tuesday, when one of the nurses was here, his BP went to 70/40.  We had him switch positions, switched arms, drank juice, to no avail.  She called the Dr, they said to hydrate him and if it got any lower, call 911.  Dr wanted to see him on Thursday morning.

Luckily, I have a BP machine here, only, I thought it was a battery operated one and I haven't used it in probably 4 yrs.  So, I got it out and to my surprise, it's one you plug in to the wall.

He was very pale with his eyes sunken in.  He turned to me at one point and said, "Am I going to kick the bucket?"  Both the nurse and I laughed it off and made light of the situation.  I remained calm on the outside, but, inside I was terrified.

It was one scary few hours.  I am still shaken over it.

I now monitor his BP throughout the day.  It's gone down a few times, but, not as low as 70/40.

We saw his Dr yesterday.  BP was OK.  I was given instructions on what to do.  Dr said it was time to sign all end of Life Instructions for husband. 

So, it's officially and legally on file now.  As I was signing these papers, the wording was so point blank.  Every sentence contained the words, "Resulting in Death."  Ugh.

We had a great Thanksgiving.  Went to Tish & Jace's.  It was nice.  Husband enjoyed himself.

Gearing up for Christmas.  The tree is up, lights are on.  Husband enjoys looking at the lights.

On December 20th, Medicare will stop paying for the home nurses.  Folks, I really need your prayers that somehow, someway, Medicare will approve for more time.  We have come to love these nurses and need prayer on this.  Thank you in advance.

Tomorrow is our annual Holiday dinner here at our apartment complex.  It will be in the Clubhouse.  I am looking forward to that. 

And there you have it.  I should be sad for all that is going on, but, I'm not.  I am actually looking forward to Christmas and a new year.  No poor pitiful me kind of attitude. 

Don't have time for that.

A staff of more than 1 now

Well, after 2 years of struggling with myself to letting go of husband's care, we now have a nurse 3 days per week and a physical therapist 2 days per week.  Can we all say, "yay?"

I was quite hesitant at first, what with strangers coming in my home, but, the weight has been lifted from my shoulders.  There is such a sense of freedom about me.  Something I haven't felt in a very long time.

Husband, at first, was not too keen on the idea.  Now?  He is so relaxed around them and has accepted them into our family, because, they are fast becoming family-like to me.

I had to take husband to Denver on Wednesday for his 3 month check-up.  Dr F was so happy about the professionals taking over his care.  He said probably the reason I always hesitated was because it just wasn't time yet.  Now, Dr F said, is the right time.  Yes, now is the right time.  The disease has taken over now.

 Everyday he seems to slip more and more into the unknown.  Everyday the clarity gets less and less.

I woke up at 4 am today and caught husband trying to walk in the living room with his comforter in his hand.  He said he was taking a walk with his Dad.

Loves, loves, loves to strip his bed and throw everything on the floor.  Loves, loves, loves to strip himself.

He will ask me questions about when he is gone.  Will I give something he cherishes to so and so?  What will happen to his TV?  What about his clothes?  This will happen fleeting, in a moment of clarity.  It goes just as fast as it came and he will once again slip away.

It's all good though.  On the drive home from Denver the other day, we were talking about Heaven.  He said he "hoped" he would go to Heaven.  I told him, "Well, then, you better watch your P's and Q"s".  He didn't laugh.  He didn't understand what P's and Q's were.  The clarity once again was gone, and he was once again in a stupor.

I now see light at the end of the tunnel.  I am doing OK.  I find myself laughing a lot more lately.  Good, healthy laughing.  It's just going to be OK now.

It's not just me anymore.  There's a staff of more than 1 now.

Free!!

It's been way too long since my last post.  There's just not much more to say.

Alzheimer's has completely taken over now.  Husband knows me, but, for the most part, knows not much else.

His left eye is gone now.  Right eye is fading.  Legs are just about gone.  Has no control over his body, including wetting himself throughout the day.

I now buy daytime diapers as well as nighttime diapers.  Along with the nighttime diapers, I have to buy pads to put in the nighttime diapers to avoid leaking on his bed.  For the most part, it works.  Except husband is now in the stage where he takes his clothes off in the middle of the night, strips his bed, gets back into bed and wets.  Exasperating.

I scolded him the other morning about this and like a little boy, he hung his head, and started to cry.  Realizing I had been too hard on him, I apologized, but, told him he must try not to do this anymore.  his reply was, "But, I am sick."

Yes, I know.

He retains nothing.   He gets confused after eating breakfast.  Within the hour, he wants to know if we are going to eat today.  Once I remind him that he's had breakfast, he's fine.  For awhile.  Or, he will ask me if he's eaten that day. 

Eating is difficult for him.  He hunches over when attempting to eat.  I now have to place spoon or fork in his hand because he can't see the silverware.

I got approval for a nurse to come to the home.  I don't know when she will start.  Haven't heard.  Hopefully soon.

I also purchased a Cremation Package for husband.  Well, purchased by paying monthly to the Neptune Society.  It's a start.  Social Security told me a few years back that at the time of husband's death, they will pay me around $800 towards burial.  I have no idea when that will be paid out. 

I have decided to finish the book I started 2 1/2 years ago.  It's a work in progress.  It's painful and stressful as well.  To go back to happier days when all we had to worry about was working, raising a family and keeping our heads above water.  As I look back on our life way back then, the saying, "don't sweat the small stuff" comes to mind.  How simple that other life I had seems now!!

I am hoping to have the book completed by Spring.  I have no idea how to go about publishing.  Will cross that bridge when the time comes.

Good news.  I got my car fixed.  Jace fixed it for a fraction of the cost.  Makes me so mad that you take it to the dealership, rack up all kinds of "repairs" when in fact, those "repairs" were not needed.  In going through my car, he said it's a great running car, just needed a water pump, timing belt, two drive belts and a pulley for the timing belt.  So thankful for Jace.  What a great Son-in-Law!!!

I will try to update more often.  It's just getting harder as my life is consumed with Alzheimer's.

One day, I will be free of this awful disease.

And so will husband.

Update

Fall is coming to the great state of Colorado.  Ever since husband's diagnosis, I dreaded Fall.  It used to be my favorite time of year.  This year, I am looking forward to it once again.  I feel like I have been dead inside for so long.  Too much sorrow, too much mourning for what has been lost and what could've been.

No more.  I feel alive again.  I am planning a future for me. 

Husband's Dr appt on the 20th was good.  I got so many answers. 

First off, I was right about husband's decline.  They said there has been a noticeable decline, but, it was expected.  This is what they found:

Husband's left eyesight is almost gone.  He can see somewhat, but, his vision is distorted and he cannot tell what is what out of that eye.  Because the damage involved is mostly on the right side of the brain, his entire left side is most affected.

He did not know the day of the week, date nor the year.  He couldn't tell you objects that they would show him.

Dr said the hallucinations will be more present now. 

I told the Dr about his sleeping most of the day and night.  He said to let him sleep, his brain is shutting down and that is to be expected from now on.

He advised me to take him to his Primary here in the Springs, as we are now to watch for signs of pneumonia.  He said that during end of life with Alzheimer's patients, their body will produce too much fluid that will settle in the lungs.  They don't have to get a cold or virus.  It happens naturally.

He wants a nurse to come as well as Hospice.  He knows of the trouble I've had getting insurance to approve a nurse, but, said now is the time, insurance will approve it now.

He informed me I have to start making final arrangements for husband.  I told him I didn't know where to begin. 

Funnily enough,  on Tuesday, I got an application from the Neptune Society in handling husband's final arrangements (I think the Dr did this) .  I did the application and is ready for the mail.  I don't know what the cost is.  At least I can make monthly payments.

On the home front, I took my car in for what I thought was a loose belt.  After 2 hours of diagnosing, I have $4,000 worth of work to be done on my car.  Great.

I prided myself on keeping up with my car.  So much for that.  I don't know what to do.  I am in no position to buy another car, nor do I have an extra 4,000 laying around.

I am taking one day at a time in regards to the car.  Whatever will be will be.

So, there you have it.  My life to date. 

A year ago I would've crumbled.  This year?

Whatever.  Keeping me on my toes for sure.

Peace

I'm still here.  Still fighting and kicking.  Surviving.  It's all I have left.

Life these days with husband has been quite difficult.  He has declined at an alarming rate.  We see Dr  F the 24th (I think) of this month.  They may tell me how much longer, or, worse, shrug their shoulders, baffled at this man who has survived longer than they first believed 4 years ago.  Well, me too.

Some may say, "But, aren't you glad you still have him, making memories?"  Uh, no.  I cannot make memories with him.  He, at times, doesn't even know me, usually at night when I take his glasses off with him sound asleep.  He will open his eyes, smile and say, "Well, hi there."  He may ask me what I'm doing here, or, ask me crazy questions.  Of course, I always find an answer for him.  He believes anything I say to him now.

He has lost total control of all bodily functions.  He is in protective underwear during the day.  I've had to get actual diapers for him, along with the pads that I insert in the diapers to help absorb any leakage.

He has been sleeping during the day, more and more.  Taking him anywhere is difficult.  He panics.  He has started taking his clothes off at all hours of the day.  He, for some odd reason, strips his bed at all hours of the day as well.  I will wake up in the morning to find him naked and all bedding on the floor. 

I have started telling him no at some requests he demands of me.  I usually give in to him, but, lately, I have found myself telling him no at some of his demands.  He does not like it one bit, but, there are times I think, "Enough is enough."  After awhile he forgets I have told him "No!!", comes out of the bedroom with that hazy crazy look in his eyes and be fine.

Since my Mother died, I have felt a peace like no other.  Oh, I miss her, so much so that it's an actual pain, but, this peaceful feeling is more prominent as days go by.

I no longer get sad or upset at anything related to husband or Alzheimer's.  Surviving the death of Mother, well, if I can do that, I can do this.  It's as if she's beside me, giving me comfort and guidance.

Sometimes in the afternoon when husband is sleeping, I sit in my chair and imagine him gone.  It no longer takes my breath away.  There is no pain associated with it anymore.  Not that I don't care.  Just the opposite. 

I am making plans.  For me.  For when he's gone.  It'll be just me then.  A new life.  New beginnings.  Funny, it's not scary anymore. 

It's not so bad anymore. 

Lead Foot

Where do I begin?  The dog days of summer are here and I am so glad I live in Colorado now.  Summer's here are just about perfect.

I took husband to Albuquerque the first week of June.  We stayed for 5 days.  I had a great time.  A lot of fun.  Husband did OK, spending a lot of time with his Dad. 

But, talk about hot.  By end of day 2, I thought I was going to spontaneous combust.  Miserable, hot, stifling heat.  My only saving grace was Pat & Christine's refrigeration air conditioner.  I can't believe I used to live in that.  Ugh.

Had a great drive down and the drive back home was going great until,,,,,,,,,right outside Trinidad, just as I topped a small hill, there on the other side was a cop!!  He also pointed his radar at my car.  Of course, I immediately slowed down, (well, more like took my foot off the gas pedal), and watched to see if he would follow me.  Thought I was in the clear, until I saw him pull out and speed towards me.

He was nice about it all.  I was so embarrassed about speeding.  I'm actually a good driver, but, my lead foot took over and didn't even think about the possibility of getting a speeding ticket.

Oh well, lesson learned, ($169.30 later)  Ouch, that one hurt.

Husband has declined once again.  He has just about lost control of bodily fluids, wetting himself and his bed quite frequently during the day and night.  I am going through diapers double that I did before.  I found night time diapers on Amazon.  Going to order those as soon as money comes in.  Expensive, yes, but, he needs something more absorbent. 

Hallucinations and delusional behavior has been constant for almost 2 weeks. 

Tish gave me two new bathroom rugs.  And, this is the craziest thing, husband is deathly afraid of the rugs.  He actually cried when he went in to the bathroom.  I now have to keep the rug over the bathtub, unless he is getting out of the tub.  When he steps, (with my assistance), he cringes, and starts to shake.  This is one the oddest things I've noticed about him.  Mind blowing.

All in all, things are moving right along.  Disease is taking full control now.  Who knows when it'll end.  

I actually don't think about "the end" anymore.  It's not a priority.

It's getting through the day that's a priority now.