Support

For those of you that have asked (thank you for the comments and concern) I do have help.

We have a Nurse that comes 3 times a week but, that will be changing to 5 times a week, due to husband's condition.  She is a great woman with compassion, but, also, has developed a bond with all of us.

My daughter, Kristen also lives with me.  She is such a great support system.  She cares for husband when she senses I have reached my limit.  She is patient, loving and kind with him.  At times, she will break down and cry at the thought of losing him, but, for the most part, she doesn't show it to husband.

My oldest daughter, Tish lives here in the Springs too.  Her husband, Jace is stationed at Ft Carson.  They come every weekend (with visits from Tish during the week) and Jace will chop wood and visit with husband.

I have a great support system, but, the every day reality of just living and caring for someone afflicted with Alzheimer's can test the best.

I don't know why God has chosen me for this journey.  I didn't think in a million years my life would be like this.  There is nothing in this world compares to this.  But, it is my life.  My reality, as crappy as it can be, My Reality.

Sometimes I feel as if I'm whining.  I hope it doesn't come across as whining.  Kind of like, "boo hoo, poor me".  It's not what I want readers to think.  It's just.................I have bad days.

I believe snow has come to the Springs with a vengeance.  It won't stop snowing.  And, cold.  It's 10 degrees right now.  Must be our high because it's afternoon now.  Brrr.

I want to say "Thank You" to the person who offered Pizza Hut.  How sweet of you.  Know what I'd like better?  Love to meet you somewhere between Denver and the Springs.  Coffee, lunch, dinner?

Thank you all for following me in this journey.  Each and every sweet comments means a lot to me.  It helps.  Maybe one day we can all meet. 

Until then, thanks for hanging with me.

Alzheimer's - Hollywood Style

I am so sorry for the lack of posts.  Life is giving me a run for my money and Alzheimer's is permeating the very air that I breathe.

Husband is not doing well at all.  He has slipped further and further away from me.  When he tries to speak, it's barely above a whisper, and pronouncing words is almost impossible for him.

He forgets everything.  Everything.  He will ask what's for dinner, I'll tell him.  He will glance around the room and ask me again.  Within 30 seconds.

Last night, I got his night diaper on him, gave him last pill for the day and tucked him into bed.  Got a fresh glass of water, sat down, picked up the TV remote and he called for me.  I went in and he asked, "Did you change me and am I ready for bed"?  Took him about 2 whole minutes to forget I had just been in there.

The other night, while eating dinner, he turned to the wall and said, "Do you like it?  It's good, isn't it"?  Now, let me clarify something.  When he talks to "the visitors", his voice and speech is clear and normal.  It's almost a haunting sound.  Not of this world.

I'm just........done with it all.

For some reason, I am missing my Mom.  The ache I feel inside can really get to me.  It will be 1 year on the 30th of March.  Why all of a sudden now?

Sometimes it's just all too much for me to handle.

I know it's time to place him in a home, but, if I do, I lose his Social Security.  I can't live without that money.  So, I've picked my poison.

I was talking with an old childhood friend yesterday.  She told me how often she thinks of me and cannot even process what I am going through.  She said she has tried to imagine her husband with Alzheimer's, and said its just too painful to even fathom what it's like.

Yes, I know.

There is a movie out and Julienne Moore just won an Oscar for her part playing a woman who is diagnosed with Early Onset Alzheimer's.  I have the book.  It's called Still Alice.

Now, first of all, everyone is raving about this actress and the movie.  I have seen the trailers for this movie.  It's all bunk, I tell ya.

You want to come to my home and see it live and in person?  Or, go to the movies and see a make believe story about someone afflicted with this monster? 

Yea, what they should've named the movie is "Alzheimer's - Hollywood Style".

Yes, life is grabbing me and shaking me to my core right now.  I'll be OK, it's just this rocky road right now is tough.

Hang in there with me ya'll.  No place to go but up.

It's been a while since my last post.  Just haven't wanted to talk about Alzheimer's.  Been a rough week.

Last Saturday, I took husband out for the day.  I had planned on it for 2 weeks.  I was excited for him as well as for me.  Big mistake.

Being around husband all day, every day, I did not realize just how sick he really is.

By evening, I was exhausted and jittery from his bad behavior.  Oh, it was something, I'll tell you.

Husband has become very mean towards me.  I have heard that Alzheimer's patients do this, but, just never thought he would.

Everything is my fault.  I think deep down, somewhere in his brain, he can tell the difference in how I can walk, talk and deal with everything.  Unlike him, who cannot walk, has garbled speech, and cannot even think anymore, I think he thinks it's just not fair and will take it out on me.

After our day trip, I let him know of his bad behavior, (I know, but, sometimes I have to make him aware of bad behavior), he seemed sorry, but, continued to say if I hadn't of done this or that, maybe he would've acted better.  Exhausting.

I am fighting a losing battle here.  Right now, I think I would like to bat my head against a brick wall than try to make him understand bad behavior.

I have been having problems with him waking in the middle of the night and having conversations with "the visitors" again.  Last night, he was telling "someone", "No!!! Leave me alone."

I stayed in my bed listening to him wondering what was going to happen.  Finally, he laid back down, still muttering, still restless.

And, I wonder.  Just who was that?

Part of me wants this all over.  The other part longs for a normal life with a healthy husband.  And, it makes me so sad that I will never, ever, have a healthy husband or, for that matter, a normal life.

Sometimes, like today, I think it's just not fair.

Laughter, the best medicine!!

Thought I'd change the main  page.  It was time for a face lift.

We woke up to bitter cold and snow.  It has been foggy all day.  I like it, except, I had to go to the pharmacy, Petco and grocery store.  Roads were pretty bad, but, I took my time and made it home safe.

I like to get out like that and challenge myself.  Driving slow, watching for the other guy, trying not to skid, I love it.  I know, sounds crazy and not so normal, but, I never claimed to be normal.

On the Alzheimer's side,  things are just about the same.  There has been lots of strange behavior and delusions but, other than that, it's OK.

For some reason known only to husband, on his way to the bathroom, he will open the closet door then proceed to the bathroom.  Lately, when coming into the living room, he will forget to get his walker.  When I remind him to get it, he gets really confused and starts to spin while holding onto my bed.  He also starts to move the bedroom door back and forth.  It may take him a good 15 minutes before he calms down and gets his walker.

As I was putting him to bed Saturday night he said, "Wasn't that a good idea I had?"  Now, me being the actress that I am said, "which one?"  He smiled and said, "the one where I took popsicle sticks and put them in wax and made new popsicles, remember?"  "Oh, yes, I do remember, good idea."

Later, I got a popsicle out, looked at it and had to chuckle.  And then, I had to laugh out loud.  And, as I ate it, I said to no one, "Funny, doesn't taste like wax."

Leave it to husband to make me laugh.

An Alzheimer's Poem

"Do not ask me to remember,

Don't try to make me understand,

Let me rest and know you're with me,

Kiss my cheek and hold my hand,

I'm confused beyond your concept,

I am sad and sick and lost,

All I know is that I need you to be

with me at all cost,

Do not lose your patience with me,

Do not scold or curse or cry,

I cannot help the way I am acting,

Can't be different though I try,

Just remember that I need you,

That the best of me is gone,

Please don't fail to stand beside me,

Love me 'til my life is done."

"Just me"

Awwh, as much as I enjoyed the Holidays this year, I am relieved to get back to more of a routine.  And, I have been posting more again.  It all feels good.

Husband woke up Saturday morning completely lost.  He didn't know where he was, who he was, and kept telling me he did not fit into our apartment.  This lasted all day long.  I kept thinking that him saying he didn't fit, maybe he was telling me he didn't fit into this world anymore. 

At one point, in the afternoon, I finally got him to sit in the living room on the couch.  He kept staring all around, trying, I think, to find something familiar.  Our dog jumped on the couch.  Husband looked at the dog and said, "Well hello little dog, what is your name?"

Unsettling.

Yesterday was OK.  Still lots of confusion, still that blank stare, but, better.

When Nurse J came this morning, I told her about his weekend.  She said she would check him over.  When she got ready to leave, she was rattled by his sudden change in behavior.

My wood man came on the first.  Boy, he stocked me up with wood.  Jace came on Saturday and split a lot of the big logs.  He does that every weekend.  Nothing better than a nice big fire, crackling wood and the warmth it gives off.  I love it.

My lease was up here, but, I decided to re-new the ease for another year.  The thought of moving makes me tired and, with husband so lost, I didn't want to further aggravate the situation by moving to a new, unfamiliar place.

We live in the southern part of the Springs.  Practically every place I go to is in the northern part.  We do however, have a big shopping center at the end of our street.  I do my main grocery shopping there, but, Costco and Trader Joe's are at the upper end of the city.

When husband is gone, I plan on moving a littler farther north.  I'll get a small, 1 bedroom.  Room enough for just me.

I think that way a lot lately.  "Just me" is what I now end a lot of my conversations with.

A little scary at times to think about it, but, on the other hand, I am ready.

2015

2015.  Time is going by so fast.  Some New Years Eve for me.  I went to bed at 9:30.  It just doesn't mean that much to me anymore.

I woke up around 2 AM, laid there and started thinking.  I should not think that deep, even in the early morning hours.  This feeling has come over me.  As I mentioned before, the Dr's told me 3-5 years.  Time is up.  I know it now.  I feel it now.  I dread it now.

Yesterday morning, one of the head nurses came by to do their home visit update.  Our regular nurse had just left.  She started talking to husband.  Of course, his response was hard even for me to understand.  When she was done, she gave me that look, shook her head and asked me if I had completed the paperwork for his DNR.  I told her I had and she said, "Good.  You will need that."

Husband looks forward to the nurse coming though.  She is a great person and relates to husband.  We have come to love her.  When husband does something out of the ordinary, she will make light of it and just continue with her care for him.

She did, however, tell me yesterday that she has noticed a big change in him.  She said that he cannot understand her when she will ask him to lift a leg into the bathtub or, hold arms up so she can put a clean shirt on him.  Any directions, he just can't grasp it anymore.

His eyesight is really bad as well.  When you talk to him, he does what a blind person does.  He will look in the direction of your voice, but, does not look directly at you.  Usually, he looks over the top of my head, towards the ceiling.  It's disturbing for me to look at him.

Dr A in Albuquerque told me the optical part of the brain was involved and he would continue to lose his eyesight.  When we moved here to Colorado and saw his new Neurologist in Denver, Dr F, he agreed.

Now, it has come to pass.  Husband is going blind. 

Husband doesn't talk much anymore, but, when he does, it's garbled, making no sense. 

The other morning, he called me into the bedroom.  I went in and there was standing next to his bed.  He said, "What do you think, 16 or 17?"  I, being used to this by now, said, "16 will be fine."

I had to chuckle at that one. 

So, here's to 2015.  I will hold on tight.