Voicemail messages...this is your husband

"Hey honey, this is your husband." 
"Hey honey."
"Hey there."
"Hey."

These are all greetings I have in my voicemail messages from Gary.  Hundreds of them.  All the beginnings are similar.  Of course, messages followed with contents like the following:

• Where are the keys to the BMW? (Gary's license was invalidated by the state when he was diagnosed with dementia and I have to hide the keys because he does not accept the decision and appeal.)
• Where are the plates?
• I can't find Diva's water bowl.
• The bus is late.
• If you don't tell where the BMW keys are, I will hot wire the car, do you understand?
• I can't find my wallet.
• The maids stole my wallet.
• Is my wallet in your car?
• I'm sitting in the massage chair and I can't turn on the television.
• Is there anything you need me to pick up at the store? (He can't drive, remember?)
• Is there enough room in the new house for us and the kids?
• Have I told you lately how much I love you.
• I can't find the green pepper plant.  Is it in the yard?
• I just left you a message to tell you I love you.
• I want you to take me to the DMV so I can take my driver's test.
• Can you tell me where to find Diva's poop bags?
• I need the credit card number....
• I have a customer service rep on the phone and I need the credit card....
• Diva and I walked a really long way, can you come get us?
• I applied for a medical job today.  Why won't you let me get a job? 

Everyday is the same.  Everyday is different.  No worse, no better.

I am starting to interview companions for him for when he is home on Thursday and Friday.  I haven't told him yet....not sure how I am going to present that idea. 

Here is the job description:  "....must have computer skills, be bonded, be able to walk two+ miles and keep a 65 year old, high-functioning dementia victim out of trouble..."

A day of self imposed anger

Today was rather odd.  I was the one who was overwhelmed, upset and funky all day, not Gary.

For a couple of days, I have felt really tired, achy and down.  Not depressed really, just low key and found it hard to find a happy place.  Sad commentary for a Christian, but true.

I awoke this morning after 10 hours of sleep to the smell of hot coffee.  Gary was downstairs making breakfast. Awesome, I didn't feel like it.  When the alarm sounded, I picked up the Galaxy to turn it off and saw news of the Napa earthquake.  I went downstairs to watch television to see the latest.  Its hard to believe that is has been 25 years since Loma Prieta.  So much water has washed under the bridge since then.

After breakfast, I took a shower and still felt really weird...just kind of angry but not sure why.  When it was time to leave for church we melted into an argument and I left saying, "We better go to church and pray...we sure need it."  By the time we arrived at church I was in full meltdown.  I told Gary to go in and get coffee while I cooled down in the car.  After a few moments, I joined him and said good morning to everyone before going into the sanctuary.

I always soften in church.  We have the good Lord to thank for that softening.  After church, we went to eat lunch and for groceries.  Everything Gary did disturbed me.  When he forgot a napkin and I had to go back in to the restaurant, I got angry. 

While we ate, I asked him to take off his husband hat off and be my friend for a few minutes.  I needed advice.  How do I handle a life partner with dementia?  How do I handle the anger created from his disease and my life not being what I want or signed up for?  How do I get relief?  The answer came back with no answers.  He basically left me alone to deal with my emotions....only he was sitting there the whole time.

When he did not move a cup out of the car when I asked him to before the bottom fell out and got soda on the car, it aggravated me.  He didn't even ask for clarification.  After 500 little things, I just shut down.

All the way home, I said nothing. I fumed.  We came home and I went to sleep.  The 2.5 hour nap left me wanting more sleep.  He took his GPS, telephone, wallet and Camelback and went on a very long TRIKKE ride.  I followed his movements on the GPS while I paid bills.  My thoughts were scattered but still angry. 

He came home and took a shower while I sat in the massage chair. When he emerged from upstairs, he had on a beautiful new golf shirt, silk shorts, knee-high dress socks and black dress loafers.  He never looked goofier and like an old tourist.   I couldn't help but laugh...and laugh...and laugh.

He asked if I wanted to go out for dinner.  Not in those socks!!!  I once again shared that I did not want to go out but would prefer to go out one night this week after a long day. He agreed and I fixed dinner.  The laughter helped wane the anger.

Now, Gary is in the massage chair and I am feeling tired again.  Guess I should take my iron supplements and find another reason to laugh.

Sick, frustrated, tired and perturbed.

For those reading this blog who know me, you know how much I love my husband, Gary.  For those who don't know me or us....we have an immeasurable love that will have its marital anniversary of 29 years in September.  I love him unconditionally.  With that said....

I'm very sick of dementia.  I'm frustrated with not knowing what I am going to encounter everyday.  I'm tired of being tense when the phone rings wondering what is going on with my husband in any given moment.  I am perturbed everytime I hear certain phrases or answers to questions.  And, there is nothing I can do to stop it. 

Tonight I came home from work while Gary was still walking our dog, Diva.  We communicated via his Amber Alert device and I knew he was nearby on a walking trail and he seemed very happy.  He was on his way home so I told him I would start dinner.

A while later, I called him again and he said he was trying to get in the house.  Since I was standing on our front porch looking for him, I had to ask, "Where are you?"  Perhaps he was at the wrong house?  No, I could hear him responding to me from a few feet away.  I walked further out on the sidewalk and saw him at the neighbors front door.  He was one house away.

He came to our house and said that he wanted to go next door and explain what had happened.  I asked if anyone came to the door when he knocked and he said no.  Upon further questioning, he said that he was in the neighbors open garage and was trying to get in their screen door.  Speechless, I was.

With that information, I agreed to go next door.  The woman of the house was next door in the driveway and I explained what had happened.  I told her that he has dementia and was confused and meant no harm.  She stared at me as if to be a deer in approaching headlights.  Suddenly, I realized that I had lived here, next to them for 1.5 years and I didn't know if she even speaks English.  She clarified that she understood (Si, ella habla Ingles.) what had happened and said that everything was okay with their door.

(The blank stare was probably disbelief). We came home and then Gary worried for the next hour that he needed to go back and explain further.  I told him that he had done enough and he subsequently worked himself into a frenzy.  A relaxation bath is in progress.  The massage chair is not enough tonight.

Further, while fixing dinner, I walked to our kitchen sink and stepped in a soaking wet foot mat.  After moving all the crap out from under the sink, I found a puddle with no way of tracing its origin. It is now dry and I have run every possible water source to find the leak.  Nothing.  Needless to say, Gary cannot help as he has no capacity for thinking tonight. 

The irony is he was SO CLEAR when I talked to him earlier. 

So far, I cannot predict what triggers good or bad moments.  There is no magic or science.  For now, I am just numb. 

Disbelief
Anger
Frustration
Melancholy
Depression
Love
Thankfulness

All words that describe the emotions felt by a in-love caregiver on any given day.

Last night's dream.....

I awoke last night with the following song pounding in my head.  I dreamed that Gary was a lot further along in his dementia and I was singing this as a result of him being mentally "gone".

Lyrics written by John Waite (most famously performed by Tina Turner)

"Everytime I think of you, I always catch my breath
And I'm still standing here, and you're miles away
And I'm wonderin' why you left
And there's a storm that's raging through my frozen heart tonight

I hear your name in certain circles, and it always makes me smile
I spend my time thinkin' about you, and it's almost driving me wild
And there's a heart that's breaking down this long distance line tonight

I ain't missing you at all since you've been gone away
I ain't missing you, no matter what I might say

There's a message in the wire, and I'm sending you this signal tonight
You don't know how desperate I've become
And it looks like I'm losing this fight
In your world I have no meaning, though I'm trying hard to understand
And it's my heart that's breaking down this long distance line tonight

Chorus:
I ain't missing you at all since you've been gone away
I ain't missing you, no matter what my friends say
And there's a message that I'm sending out, like a telegraph to your soul
And if I can't bridge this distance, stop this heartbreak overload

(chorus)

I ain't missing you, I ain't missing you, I can lie to myself

And there's a storm that's raging through my frozen heart tonight

(chorus)

Ain't missing you, I ain't missing you
I ain't missing you, I can lie to myself
Ain't missing you, I ain't missing you
I ain't missing you, I ain't missing you
I ain't missing you, I ain't missing you, ain't missing you, oh no
No matter what my friends might say, I ain't missing you... "

So, is this type of heartbreak in my future?  I sure hope not....

Unnecessary Resistance

Sundays are special days that Gary and I share together, starting with praising our Lord.
This morning we slept a little later than normal after an exhaustive evening of trying to find my Galaxy 5 charger that Gary moved to plug in his electric shaver.  No problem as long as he leaves what he unplugs nearby.....I still don't know where he found it but he did.  We also cannot find the electrical cord for the new neck massager.  This house is not that big.

We ate spicy sausage gravy and biscuits for breakfast and then headed out to church. THe music today was spectacular and Pastor Jerry was "on".  One of my favorite parts of the service was watching the family of four in front of us.  Two young teen girls and their mother were singing, holding each other, holding hands, hugging and happy.  THe one girl reached out for her dad to make sure he was included in the praise.  It was such a geniune, beautiful expression of their love for Christ.  I got pretty choked up.  To me, it was how we should all be everyday and probably how Jesus feels when we praise him.

The service taught me again about leaning on Jesus because he died for us.  He took away the chains if we just realize it.  So, of course, I started thinking about Gary and our relationship.  It is so filled with love.  At the same time, filled with a lot of pain, torment, confusion, frustration, disappointment, etc.  In reality....we choose to see it that way. 

I think of times when I get frustrated with Gary and yell or push him more than I should.  That is MY problem.  I am still healthy and should understand that he cannot help the things he does.  He can't remember, Ada. He loses things.....so what?

After church we headed to the mall for the first time in the seven years we have lived in Elk Grove.  I needed to buy two gifts for some friends.  Gary helped my navigate through the jewelry sections at Macy's and Norstrom until I found the right gifts.  He was a great help and has very nice taste.  I hope my friends like the gifts he so carefully chose.  Of course, he wanted to buy me something, but it was not my day for gifts.

We discussed our upcoming move quite a bit and he was helpful in planning rooms, etc.  He was "on" today.  Thanks, Lord.

We went out for lunch and then home for a nap.  No frustration today.  We sat out and enjoyed the sunset while we ate popcorn and fake beer for dinner.  (its nice to not have to be a role model for any children).

 

He is enjoying the massage chair while I write.  If I can just remember what I learned and realized today, maybe I am one step closer to better managing the situation.  Where I run into trouble is when I try to take control when in actuality, God is in control anyway.  I am just providing unnecessary resistance.  Right?

Turbo massage chair to the rescue!

I read an article today in the Sacramento Bee (part of a series) about a family having to put their Alzheimer's infected Mom into an assisted living facility. 


First, understand that other than this one article, I think the Sacramento Bee is an example of poor journalistic showmanship.....and I have many examples to cite.   There, that is out of my system.


Anyway, the article referenced the mother's decline over the years to include memory loss, paranoia, panic, confusion and how she had gotten to the point that a family member had to be with her always.  It was a terrible toll on the family.  It discussed the feelings of guilt the family had because the mother accused them of broken promises. 


I feel many of the same feelings and we are nowhere near her advanced stage of the disease.  Gary has some very good days.  Then, there are the others.


Heather and her son were here for a week to assist because Gary's CLUB was closed.  She is an angel with waaayyy more patience than me.  They got along well and she settled several discussions between us.  At one point, I was trying to explain to Gary (for at least the 100th time) why he could no longer drive.  It got louder and louder.  We were in his office on the second floor and I yelled down to the kitchen, "Heather come help me!"  She did and eventually, he calmed and for that moment, accepted the fate whether he agreed or not.


The hard part of sharing these stories on the blog are the judgment I experience by all the people who "know better".  On one hand, I know that many people do know more than I do and that is why I do share....perhaps I can help someone else.  On the other hand, it makes me angry because I don't know it all.  The control freak in me screams silently when I do not know how to navigate a situation.


I'm going through an extremely stressful time at my job.  Most of it I don't share with Gary as it would just overwhelm him more.  So, I try to find other sources to replace my once brilliant businessman who used to help me so much with minor and major issues.  About two years ago, he told me that he could no longer help me with my work problems as he had taught me everything he knew.  How sweet.  I guess that statement was a precursor to a loss that was to come. How sad.   At least I learned while I could.


We bought a turbo, super awesome massage chair at the State Fair.  Its like a small sports car.  Gary and I had spent at least an hour apiece in it every night.  He loves it.  This also explains the decline in blog posts.  If you could have your entire body massaged or write a blog, which would you do?



Here, Gary is just trying the chair.  When properly reclining, the arms are completely covered by massaging, pressure airbags, has zero gravity and blue tooth for music.  Instead of going on a luxury vacation this year, we now have luxury every night.


Wow, what an experience.  The best night yet for Gary was a hot anti-stress bath and THEN the massage chair. 


I recommend this chair for everyone who has any stress in their life.  In fact, Gary wants to call the company and become a salesperson for them.....