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.

Invisible passenger

After 2 1/2 hours of working on my laptop, I finally got my internet fixed and cleaned up.  I was concerned that I would have to take it in and pay a lot of money to get it fixed.  Thankfully, that wasn't the case.  I apologize again for the lousy post yesterday.

While in California, having had 4 days alone, I came back refreshed and with a different mind set.  Gosh, just in those few short days I had plenty of time reflecting on the airplane and late at night after everyone had gone to bed at my sister's.

It's hard to explain, but, I'll try.

I have had a dread in my chest for about 4 years.  It's just been there with me on a daily basis.  During my Mom's Memorial Service, we were given a big white balloon, attached with a card.  We each wrote a message, and released them at the same time in her back yard.  While watching those balloons float up toward the Heavens, a burden seemed to lift from my chest.  I didn't recognize it at first, but, once again, settled on the plane, homebound, it dawned on me that this heaviness and dread was gone.

It has not returned and I've been home for over a week now.

Something else happened to me. 

I had never been to Denver Int'l Airport. If you get the opportunity, go to Denver Int'l, the place is huge!!  Tish took me, and, all the way there, I was a nervous wreck.  I couldn't put my finger on it, as I have no problem flying, even alone.  It was just such an uncomfortable feeling.

Once on the plane, they kept asking people with carry on bags to check them in at the gate, with no charge, as the flight was full with no available seats and overhead bins were filling up.  I had already had my bag in the overhead bin, so it was not a problem with me.

As I sat there watching people board, I became emotional and just so nervous.  Being that I had a window seat, I looked out the window and started whispering to my Mother.  I asked her to please be with me as I was so scared and did not know why.  During this time, the flight attendants kept informing us of the full flight and how there were no seats available, and, be respectful of passengers and the overhead bins.

We pushed off from the gate and started down the runway.  Tears were running down my face as we took off, with me still whispering to my Mother.

Once we were up in the air, I started reading a magazine, trying to relax.  I got a warm fuzzy feeling and looked to the seat next to me.  It was empty.  And then this overwhelming feeling came over me and I knew my Mother's spirit was sitting next to me.

What  a beautiful feeling it was.

Life without my Mother has been challenging, but, I now feel her.

Life with Alzheimer's is challenging, but, it is "Well with my Soul". 

Well, I looked at the date of my last post and I must admit, I'm ashamed of myself for not posting sooner. It's been a very busy 6 or 7 weeks. Excuse the looks of this post. There is something wrong with my internet search engine, so, I have to use a search engine I am not familiar with. Bear with me as I try to get this post up. I flew to California on the 16th of May for my Mother's memorial service. My sisters went all out for her final goodbye. It was beautiful. So many people came. After landing Friday afternoon, we went out to dinner. I had a little meltdown at the restaurant, feeling so lost without husband and feeling guilty for leaving him. I have not been away from him in 4 years. Needless to say, he did fine with Kristen. I had 4 days to myself, and it felt strange. I flew home on Monday, the 19th. Husband is holding steady. We have moments where he is fine and other moments where he s not so fine. I hate this roller coaster. Husband's birthday was the 23rd. He turned 49. I never thought he would see this birthday. I was teasing him saying next year he was turning the big five O. He said he would not see his 50th birthday. Huh, I've been told that before, and take it with a grain of salt. I have gotten past the thoughts of when will it happen, when will he die. Now? I take each day as it comes and do not dwell on the fact that yes, he is very sick, but die? I hardly think about it anymore. I m taking husband down to Albuquerque next Thursday, he wants to see his Dad. It will be a quick trip, coming back home Saturday, but, it will be nice for husband to see his Dad. I am also looking into getting husband into an Adult Day Care program. It will do him good, and me too. I pray I will be able to find one..Well, being that I don't trust this site, I am going to sign off for now. I promise to update more often. I am so sorry for not posting like I used to. I just get so tired of this life with Alzheimer's. It makes everything seem so gray. Thank you, faithful readers for hanging in there with me.

Easter 2014

I reached for the phone to call my Mother yesterday to wish her a Happy Easter.  Her first words to me would've been, "Yes, He is Risen."  I would've teased her, asking her if she had been a good girl and what did the Easter Bunny bring her for Easter.

And then I remembered that I can't call her.  She's dead.  Gone.

This thing they call Grief can be overwhelming to me at times.  I'll be fine and then it hits at the most unusual times.

My sister is having a Memorial for her on the 17th of May.  She made sure I will be able to attend.  Of course, making arrangements for husband was tricky, however, plans are made, got my airline ticket and away I will fly.  Not to see her, but, to honor her and say "so long."

It seems like the days are flying by.  Each day melts into the other.  Nothing unusual happening around here. 

I will be taking husband back up to Denver to see the Neurologist at UC Denver.  They are now accepting his insurance, and, I felt very comfortable with Dr F, plus he is a colleague of Dr A's in Albuquerque. 

I had been taking husband to a local Neurologist here in the Springs, but, the last time I took him, the Dr told me that husband is so far advanced, that, in his opinion, he needs to be seen up at UC Denver.

We go May 7th.

For the most part, husband has been holding steady.  I used to love this reprieve from Alzheimer's.  Now I am very uncomfortable with it.  It won't last.  And when it hits, it hits.  Imagine a brick thrown in your face?  Kinda, sorta like that.

I've noticed the legs are getting very stiff.  Very stiff.

As far a sleeping and night terrors, we have had none.  He sleeps pretty good.  "The man" comes and goes. 

He just sits on the couch and nods off.  All day long.  He will occasionally raise his head and "talk" to "someone".  Or, he will snap out of sleep, grin and try to whistle for the dog(s).  Or, his eyes will roll in a very dramatic way.  Disturbing and not a pretty sight to see.

A few weeks ago, I woke in the morning to hear a knocking sound.   I couldn't find husband.  The bathroom door was closed.  Jumping out of bed, I ran into the bathroom and found him cowering in the corner, knocking on the wall, asking for help.

Each day, I try to find something good in the day.  I try to fill my mind with good thoughts.  I try to laugh and fill my heart with warm memories.  As time goes on, it's getting harder and harder to do this.

I have been talking to God and my Mother a lot lately.  It helps. 

So, taking husband back up to Denver, where they will probably tell me it won't be long now, or, shake their heads and tell me they can't give me a time frame, and, flying out to California for a final farewell to my Mother.

Some tuff stuff for me right now.

Memories

I remember when I was a little girl, I was sitting on my Mom's lap.  It was past my bedtime, we had company over.

I was leaning against her chest, hearing her breathe and listening to her voice through her chest.  I remember thinking how soothing that was and how much I loved my Mom.

My Mother had a baby girl long before I was born who only lived for 10 days.  Throughout my life she talked about her.  Carol was her name.

For the last few years, my Mom talked of how she wanted to be reunited with my Dad.  She missed him so.

My Mom's last words to me were, "I love you very much, honey."  That was only 4 weeks ago.

And now?

My Mother's chest is silent.  The voice is gone forever.

She now is with her long ago lost baby girl, Carol.

And my Father, her husband.

I'm Ok.  Sad, yes.  But, OK.

There will be no services.  She will be cremated and a get-together at a later date.  I, obviously, am unable to travel at this time. 

So, for now, as I go about my day, thoughts of her will come.  Sadness will come, I will cry. 

But, I will think back to that one night, sitting on her lap, listening to her breathe and the sound of her voice.

And her very last words to me.

Comfort.