Saturday, April 30, 2016

Verbalizing the Dementia Patient's Brain Activity

We have been blessed three nights in a row with no "accidents" in the bed.  However, last night was very "noisy". 

Here is a sample of what I heard:
"1601, 1602, 1603,1604,1605,1606.  (pause) 10,11,12,13,14,15,16,17,18,19,20.  201, 202,203,204, cinco, seis, siete, ocho, nine, ten.

Be quiet (parroting me telling him to be quiet).  Be quiet.  Just be quiet.  BE QUIET.  Lay still.  Lay Still.  Be quiet.  Be quiet.  Shut up. 

Scoot down in the bed.  Don't hit your head on the headboard (I tell him this when he gets in the bed with his butt next to the pillow).  Be quiet.  21, 22,23,24,25,26,27 .............28,29,30.  I need to comb my hair.  I have to pee."

So, I get up with him and assist him to go to the toilet with coaching of standing close to the toilet so drips go in the toilet, not on the floor.  He stood there for about 10 minutes.  Suddenly, Diva asks to go out so I took her downstairs to take her out.  When I got back upstairs, Gary was fixing his pants and flushing the toilet.  I'm not sure what happened but he had dribbled a lot on the floor and all down his pants.  I took off his pajamas and put them in the shower floor for laundry in the morning.  I put Gary back to bed on top of the new gigantic mattress pad that I bought.

A few minutes later he started verbalizing all his thoughts again:

"Bless you.  Thanks for letting me pee.  1500.  1600.1700. 1800.  Did you hear Diva cry?  No?  Why not?  Is that Diva on the bed?  Does Diva have to pee?  12, 13, 14, 15, 16........501,502......"

After Gary continued counting until 800, I decided to roll over, put a pillow on my head and try harder to sleep.  It just wasn't working.  My big mistake is that I keep talking to him and trying to get him to be quiet, stop talking and just let me sleep.  I know better but after a while my mouth engages and I try again.  "Gary, please let me have a moment's peace and let me sleep for a few minutes.  Please?"

"Be quiet Gary.  Have peace.  Have peace.  Have peace.  Be quiet. "  He did. 

At 6:40 a.m. he asked me to help him go to the toilet.  I did and he started the verbalization again. I covered my head and decided that if he at least laid still rather than wiggle constantly, I could sleep.  He then realized that he did not have on his pajamas and started feeling around the bed.  He thought he had taken off his pajamas and was trying to find them.  I got up and gave him an alternate pair.  Miraculously, I don't know what happened until 9:40 am.  I slept!!!!!

During these periods when his brain activity spills from his mouth, his body motions are very active.  He wiggles, moves his arms, puts his hands through his hair and just moves around the bed.  It is very disturbing to one sharing the bed and hoping to sleep.

After showering and dressing, we walked out our bedroom like every day and he stopped next to the guitars hanging in the hall and asked to play his guitar.  I took it off the wall, dusted it and brought it downstairs for him.  I put him on the sofa with his guitar and he picked at it while I fixed breakfast.  I do not mean that he picked as like in playing the guitar, I mean he literally picked at the strings like he was trying to remove a hair from the guitar.  It was the first time he showed interest in music in quite a while.  I have not put the guitar back on the wall in case the spirit moves him again.

Right after lunch, he crashed on the sofa.  He slept enough that now he won't take a nap. 

Saturdays are hard.  I have so much to do around the house but I always have to keep one eye on him.  Its okay because I love him.  I guess if things get too tough I could just start, two, three, four.......

Sunday, April 24, 2016

Pure loneliness

It is Sunday.  This weekend has consisted of a tremendous amount of organization, cleaning the garage, many loads of laundry (normal and incontinence related), cooking meals and straightening our "home office".  Gary and I just finished a great meal of pineapple/jalapeno pork, red and purple jasmine rice cooked in Mango juice and garlic sautéed kale and bok choy.  It was a delicious meal and Gary ate every bite....quickly.  The fact that he ate it all in less than an hour was an indication that he liked it.

All this activity and the only emotion I can identify is pure loneliness.  Gary is just a few feet away in the massage chair, Diva is begging for a post-dinner treat and Heather and Xander are in their living room......

Have you ever been all alone in a house full of people?  What is missing here.....Gary's real brain.  He no longer really looks at me.  He still knows who I am but he looks past me unless I hold his chin and force him to look at my eyes.  It is not the same connection. Just like I said, it is forced. Its a horrible realization that your husband is somewhat gone.

So, since he is still here and I feel so lonely, I can't help but wonder what it will feel like when the body is no longer here either?  He is healthy other than the brain so it could be years.  I am thankful for his other health.  For widows and widowers, I wish them peace.  The agony of their death must be of the worst kind of agony.  My loneliness and agony is only half....our dog Diva is so sensitive that she is feeling my pain now....she came and sat next to me as I type and put her head on my wrist.  So sweet.

Of course, its the same wrist that had a trash can lid slammed on it yesterday by the wind when I was cleaning the really hurts but her head trying to comfort me is so very gentle. She just switched to licking my hand instead.

God just keeps giving me breaks.  I don't know how or why I deserve the kindness. So, I will stop typing and enjoy my loneliness dissipating.

Sunday, April 10, 2016

Finding my True North

Many years ago when we lived in the Bay Area of California, we spent nearly every weekend sailing on San Francisco Bay.  In the beginning, I hated it.  Taking sailing lessons was incredibly HARD work because if you weren't doing it correctly, pulling the lines and adjusting the sails was difficult. 
We learned to sail in preparation for the then coming Y2K crisis.  Remember that?  We knew that if the world as we knew it went to hell-in-a-hand-basket that we would have enough skills and supplies to sail out the Delta, under the Golden Gate and off to paradise.  Needless to say, that never happened.  However, nearly $15k later and a gazillion hours on the bay, we were accomplished sailors.  Except for one thing.

Navigation.  Sure, its easy with a GPS.  But, what are out at sea and lighting takes out your electronics.  Your backup GPS got zapped, too.  So, one must know the old fashioned way of navigating the currents, waves and stars.  We took a navigation class at the local Sailing Club which had never failed us.  (Especially the time I ran one of the boats in to the Berkeley Reef and knocked a gash in the keel.  That is a story for another day.)

I failed the Navigation class with a miserable "F".  I just didn't get it.  Not the math, not the just took my breath away and for a while, combined with getting my hand caught in a traveler and sustaining an injury that hurts to this day, I almost quit sailing.

There was one concept of navigation that I did understand and that was the Concept of "True North". Find the following description from Webster's Online helpful:

"True north differs from magnetic north, which varies from place to place and over time due to local magnetic anomalies. A magnetic compass almost never shows true north. In fact over millions of years, magnetic north wanders considerable and occasionally reverses so that the magnetic north pole has been near the geographic south pole at some periods in the earth's history. In the arctic region, a magnetic compass is not very useful.
To find true north from a magnetic compass you have to know the local magnetic variation and how it is varying over time. For ordinary folk this is difficult (although good maps will have magnetic deviation marked on them).
Magnetic Deviation Scary variation

From Websters Online
Finding true north is essential for accurate navigation. Hence the metaphor.  In life's journey we are often uncertain where we stand, where we are going and what is the right path for us personally. Knowing our true north would enable us to follow the right path."

As a person, I always understood that my True North seemed to be my husband Gary.  He taught me so much about love, life, business and now in his Dementia, how to be a caregiver. 

I always relied on him.  If I was ever having a bad day, I would connect with him and he would put me right back on track, like a reliable compass. 

Now, I realize who I thought was my True North is no longer a viable tool.  Just like a GPS on a boat that has been disabled by lightning, Gary has been disabled by Dementia.  So, what is my back up compass?  Good question and I have an answer.

This morning while watching a televangelist (impossible to take Gary to church), I heard that our True North is really God.  Well, duh.  I can pretend all day that I didn't know that already but I'm not that talented an actress or writer.  God is in control of all this that we call life. My brain and anxiety relaxed ten fold. 

It is important to me that I remember this concept when the waves are crashing and we are headed upwind with a strong current in the fog.  Just turn on the back up GPS and set it to True North. 

Many might ask what this has to do with staying sane as a wife whose husband is experiencing the day to day Hell of dementia.  It has everything to do with it.  I hope that any reader of this blog never has to find out how it feels.  Meanwhile, tune into your True North and enjoy the sail.

Sunday, April 3, 2016

Urine and Grief

It seems my posts lately have all been urine related.  I am sorry if this offends any of the blog readers but there is not much I can do to pick topics these days.

We had several incidents this week at home.....interestingly, not many accidents happen while Gary is a day care.  We are not sure why but accident free days are accepted with glee.

Laundry seems to also be a hot topic because I do so much of it.  I cannot stand the smell of urine, fresh nor stale.  So, immediately following an "oops", I do laundry.

Weekends have now become stay-home-and-get-stuff-done days.  I make no plans to go anywhere as it is too taxing on me to take Gary away.  I have arranged for a caregiver one whole Saturday this month so I can finish arranging the garage which was mostly never organized nor unpacked.  There is probably a large charity donation in the works.  I am looking forward to that day .....just so I can be free and have no ties. Just need to feel some personal accomplishment.  Sad, I know.

I am also thankful for a carpet shampooer.  One thing I will add to my personal resume is "carpet cleaning expert".  Just because one is good at a task does not mean they like it.

"Gary, why did you turn off the t.v.?  Gary, turn the t.v. back on, please.  Yes, I will show you how."

The conversations between us are very shallow now.  Today, I came downstairs after a nap.  I listened carefully for him to awaken.  I missed it until he was in the hallway with a dripping penis.  There is no recollection in my recent life of me running upstairs as fast as I did.  I managed to pull his diaper in front of the stream to stop the flow.  I screamed "stop!!!!!! but he was in a fog....not hearing nor reacting to anything." 

After cleaning the carpet, he was sitting on the sofa apparently feeling sorry for himself.  It is amazing what he does and does not remember.  He knew he had done something to upset me but did not know what.  I was emotionally overwhelmed and put my head in his lap and started to cry.  I did not know what to expect.  In the pre-dementia days, that would have invoked an "I'm sorry" and patting my head until I recovered. 

Not anymore.  He did not move his arms from underneath the blanket and just sat there.  He did say "Oh, my."  No other response was given.  I immediately felt like I was wasting my time licking my wounds and sat up, sucked in some air and moved on to another task.  Guilt is a powerful emotion.

I have turned to the emotion of grief in moments like this.  My true husband is not there.  In fleeting moments when he does show up....well, I cherish those.

Meanwhile, I fight the waiting-on-insurance battle to start the next round of Neurology appointments.....I guess I am still holding out for a miracle.