Let's "play pretend" (again)

And the beat goes on.  Not much to report on lately.

Husband has stabilized somewhat.  It's like that.  He will have a sudden decline (with this last one being the worst), then, stabilize for awhile.  The next decline is coming, trust me, I just don't know when it will hit.

I've said it before and I will continue to say it.  It's like a roller coaster ride.  You just never know when the bottom will be dropped out underneath you.

I had to take Kristen to pick up her prescription yesterday, and, when I got home, there was husband in the storage shed again.  When I got out of the car, I asked him what he was doing.  He was not using the walker and holding onto the shed doorknobs for dear life.  He looked like he was going to fall flat on his face.  He said he was "consolidating" his tools.  I had to chuckle at that one.

My first response was to say, "Well, let's consolidate right here.  Bring all the tools out, I'll put up a "Yard Sale" sign and let's sell, sell, sell".

If only.  Of course, he will not get rid of those tools.  What a waste.  His answer to me always is, "One day I will need them again."

Husband fell asleep earlier than normal last night.  I went to check on him.  He was having some awful tremors in his arms.  Especially the left one.  The arm was hanging off the bed, so, I carefully put it back on the bed.  It was twitching.  I didn't like that.

I am now in "waiting and watching" mode.  It's a game I've learned to play.  You play pretend everything is normal.  Until it happens again.  Once it happens, you re-group, gather your strength and make do with what you have left.

How fun.

Another random post

This endless summer, yet, it is going by fast.  The heat has bothered me a lot.  I try not to go out in the middle of the day.  Mornings this week have been cool and refreshing.  A hint of Fall?

Every Fall, it's harvest season here.  The chili roasters are arriving at the farmer's markets and grocery stores.  Here, in New Mexico, it's how you buy your chili's.  You buy a big canvas bag of chili's, then, take it outside where they roast it for you.  The smell will get to you every time.  Love that smell.  I don't buy it that way anymore, but, I still park by the roasters, just to smell that smell and think back to days gone by.

When I leave New Mexico next June, and Fall comes to wherever I'm going, I will miss the chili roasters.

Husband had a decent day yesterday.  Didn't sleep much.  Wanted to go to the storage shed.  He spent a good deal of time out there, looking at his tools.  Just looking.

I checked on him and he seemed agitated.  So, I left him alone with his tools.

I have started doing stained glass painting again.  It keeps me busy and I love to see the end results.

Been staying up way too late at night and getting up way too early in the mornings.  This mental fatigue is the worst.  I do get sleepy around 2 in the afternoon, but, by 6 PM, I'm ready to go for another 6 hours.  Bad, bad habit.

I gave Jack an early birthday present:   money.  His birthday is next week.  Tyler is off on Wednesdays, so he and Jack took off for the gym and mall.  Jack got a nice pair of Doc Marten boots.  The two brothers had a great day.

Hard to believe that my baby is turning 18 .  He has turned out to be such a wonderful boy.  Oh, how I love that child.

I am having a BBQ on the 19th in honor of Kristen and Jack's birthday.  Kristen's was the 27th of July.  It's combination birthday and going away for Jack.  I don't have many get together's anymore,  mainly because of husband.  He does not do well around a lot of people.  At least, not anymore. Gets very confused.  Plus, you cannot have a conversation with him, so, you feel as if you're ignoring him.

My life in a nutshell.  As of today.

Turning a page

First of all, thank you for the comments.  I take each and every one to heart.  After reading recent comments, I will take it to heart and look into Home Health Care for husband.

He does not take well to strangers.  He is very modest.  He still, somewhere deep inside of his brain, is a very prideful man.  Somewhere.  I can see glimpses of it on occasion.

When I move in with Tish & Jace next June, I am putting husband in a nursing home.  It would be too much for the grandchildren to witness him on a daily basis.  That I know.  However, for the time being, yes, I know it's time.

Sometimes, late at night, I get scared when I think of putting him in a nursing home.  Will they take good care of him?  Will they keep him clean?  Of course, I will be there every day.  That is a given.

As I was thinking last night, (oh, why do I think so late at night?  Better yet, why do I think at all?)  I imagined myself next year this time.  I will truly be without my husband.  What will I do?  I have been married for so long,  I won't know how to act.  I know I will not work again.  The very idea of going back to work and dealing with what I think now are such nonsense, I know that is out of the question.

This chapter of my life will be closing.  A whole new beginning for me.  I won't know until I turn the page to begin a new chapter.

Lately, I have been thinking about me.  For the last 2 1/2 years, I only thought of husband.  Now that we're heading towards the end, I have caught myself thinking of me.  I will be the one left here on earth.  I know where husband is going.  I'm not worried about him.  Suddenly, I will make decisions for me.  This will be my life from here on out.

This will be all new to me.  Raising 7 children, caring for them, having a husband, caring for him, has put me on the back burner for so long, why, what in the world will I do?

Honestly?  With all this heartache, the pain of losing my husband, the agony of watching him suffer, the financial strain it has put on me, the everything about this journey, I am looking forward to turning that page and begin a new chapter.

Update Alzheimer's

I've really been slacking in my posts lately.  Sorry.

Update on husband:

Continues to sleep most days and all night.  Dr said to cut some drugs in half to avoid the sleeping cycle.  Did no good.

When I first started reading and researching this disease 4 years ago, I, of course, went to the final stages first.  In the final stage, they do tend to sleep more and more.  The brain is shutting down, and cannot function on any sort of normal level anymore, so, it basically puts them to sleep.

Husband has a bedside lamp on his side of the bed.  I asked him Sunday night to turn the light off.  He looked at me and said, "I don't know how".

We had my homemade Posole Sunday for dinner.  It was delicious.  Husband said it was the best.  Later, I commented to him that that Posole was so good.  He said, "Oh, was it good?  Did you eat it?"

The legs are dragging now.  Attempt at any walking is labored, slow and painful to watch.

I got him a pair of slip on shoes.  Easier to put on for him.  He forgets how to tie his shoes.

Help him most days in getting dressed.

Forgets where his clothes are in his dresser and then tells me I need to do laundry as he has no clean clothes.

Does not know day of the week, date or time.  Asks throughout the day during wake periods.

Urge to urinate is most bothersome to him.  One of the other "Final Stage" signs.  Has accidents as well.

Slurs his words.  Hard to understand anymore.  Sounds like he's very, very drunk.

I woke up the other night to hear him talking to one of his "visitors".  Suddenly, while laying there, it dawned on me that when he talks to the "visitors", his speech is clear.  Strange?  God?  Angels?  You be the judge.

I think I've covered it all.  The decline last month was rapid and sudden.  Where he used to go into his own world but come out of it is no longer the case.

He's gone.  I am left with this shell of a husband that once was.  It's all gone now.

Jack leaves in 4 weeks.  He too will be gone.

Oh my.

The monster that lives in my house

Took a few days off.  I just needed to re-group.  Reality has become my middle name.  I don't know where I've been the last 2 1/2 years.

I accepted a deadly diagnosis, quit my job to be home with husband, dealt with top Neurologists at UNM,  understood what we were facing, met that head on, asked all the "right" questions and became Caregiver and Cheerleader.

Suddenly, it has really sunk in that husband is really going to die.  He's really going to leave this earth and join God.  It has brought me to my knees several times this week.

I suppose it's the delayed reaction?

I took husband out with me yesterday.  He could not understand what I was saying.  A lady sitting next to me asked, "Is he brain damaged?"  (By the way, she asked in a nice manner, apologized for asking but said she felt compelled to ask).  I told her he has Alzheimer's.  She was taken aback and said, "No!  How old is he?"  When I told her his age, her mouth dropped open, then, I saw tears in her eyes.  I explained it is a very rare form of Alzheimer's, striking them in early 40's, and moves very rapid.

She then told me she has been a Caregiver to Alzheimer's patients for several years.  She said she knew he had some type of brain disorder, but would've never guessed Alzheimer's.

As I got up to leave, she told me, "God Bless You, honey".

Later, it hit me.  He used to be able to hide it when we were out and about.  Now, he can no longer control it, the monster has done some serious damage.

Yes, reality of it all has hit me.

This is really happening.  It's no longer forgetful here and there.  The monster has come to live in my house, and, he's not going anywhere.

No, he's made it loud and clear he's here to stay.

A whole new world

For some reason, I went to my very first entry when I created this blog, 1 1/2 years ago.  My, time has flown.

In this first entry, I said husband had Familial Frontal Lobe Dementia and that he had about 1 year left.  All that was before we had genetics testing done earlier this year.  Then, the diagnosis shifted.

We got a new name and a new timeline.  It didn't change the fact that he will loose touch with reality, will not be able to walk anymore and will, in all likelihood, pass away within 1 yr to 18 months.

No, nothing changed, except the name.

You know, folks, I read so many blogs.  They are about a "normal" nuclear family.  Daddy goes to work, Mommy may work, and the kids are going through stages that Mommy shares on her blog.  Mommy complains that the kids may be out of control, sleepless nights, messy home, can't get anything done because kids keep her busy, husband needs to help more around the house, Mommy spent too much money on a shopping spree, projects around the house that need tending to, eating out at this "fantastic" restaurant, going on family vacations and how grateful that school will be starting soon.

I remember those days.

I often think how vulnerable we all are.  B bopping through life.  Oblivious that the unthinkable could happen.  That all of our "normal", daily life could be taken away from us, thrusting us into a new realm, where we still can't seem to catch our breath.

And now that my life, or, the life I knew, has taken a detour, I've had to completely change everything I ever knew and learn to live with statistics.  And, watch my husband die.

I have changed so much.  I was forced to take my rose colored glasses off.  I see things in a different perspective now.

With all the sadness that permeates my home nowadays, with all that comes with dealing with the devastating effects this has brought to our family, with all the adjustments I've had to make, I like the change in me.


I'm so different now.  I see the world and life in a whole new way now.  I don't stress about the little things anymore.

Could it be?  Have I actually grown up?

Failure

Husband got fitted for his new wheelchair yesterday.  It's a process, I'll tell ya.  We now may have to go back to Physical Therapy for an evaluation.  I'm hoping we don't have to do that, as, it takes a very long time to get in to see her.

The rest of the day was spent quietly.  Husband rested all day.  Didn't sleep. which is good, but, rested.

I'm still in somewhat of a funk.  I have my highs and lows.  I wake up each day with the promise of a new day, and go to bed with the realization of what my life has become.

Husband was restless all night long.  Neither one of us slept well or very much.  He went to the bathroom several times in the night.  I have placed a night light in our bathroom so he won't stumble on his way to the bathroom.  Every time he got up, I woke up and watched him hold onto the walls for support as he headed towards the bathroom.

I gave up around 6:45 AM and got up.

Husband has been wandering the house this morning.  He seems to be in somewhat of a stupor.  Seems very quiet.

The people from the Scooter Store left a brochure on the chair they fitted for him.  I was showing him the brochure later in the afternoon.  He acted like he was concentrating on what I was saying.  But, then I did the unthinkable.

I looked directly into his eyes.  There he sat, with those bug eyes staring blankly back at me.  I almost felt as if I were going to vomit.  I usually avoid looking into his eyes.  Only for some reason, I didn't yesterday.  I had to leave the room and get away from him.

I left the room and sat down on the couch.  Every time I closed my eyes, I could see his eyes staring at me.  Funny, I can handle the way he attempts to walk, his spastic movements and even the total memory loss.

But those eyes.

How am I ever going to get over this?   I think his eyes will haunt me til the day I die.  There is such a haunting, dead, coma like look to them now.  Big and bug eyed.

And this is where I think I fail him.