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.

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.