Thursday, May 26, 2016

Final Diagnosis from Neurologist.....

Lets do a little test.  Get a second hand watch and prepare to time how many times in a minute you can tap your heel onto the ground.  Go as fast as you can for 15 seconds.

Now, multiply times 4.  What you have just done is duplicate what Gary does a majority of any day.  Just a few minutes ago, I timed him at 212 taps per minute.  It is an uncontrollable reaction to his brain sending signals to his leg.

A few minutes ago, I assisted him to a standing position from as seated one and watched his leg shake uncontrollably for a few minutes.  The brain sends signals that the body would be miserable for those who are aware of this.....I don't think for a moment that Gary even realizes this is happening.

I received a call from Gary's UCI Neurologist today.  He confirmed after reviewing the MRIs (recent and two years ago) and EEGs and Ct Scans that indeed Gary's brain has shrunk at an " Impressive" rate.  Before, "impressive" always meant something good, but today the word has fatal qualities.

He basically said that the FrontoTemporal Dementia is expected to continue to shrink Gary's brain. Currently, the right frontal brain is shrinking at a significant rate.  This is the part of the brain that controls emotion and executive function. He anticipates that within 1 year, he will need full time nursing care either at home or at a facility.  The weird part is that he complimented me for the care he is currently receiving and inquired if I could continue.  I've never felt good about a compliment regarding dementia care....

I asked the Doctor about long term prognosis and he indicated that Dementia does not kill a patient.  He was very forthcoming to say that Gary will become vulnerable to every conceivable issue...falling, choking, not swallowing, heart attacks, strokes, etc.  Basically, the brain will no longer protect him.  Wow.  Wow. Wow. 

Upon further questioning the doctor said, "if he stops eating or swallowing, you need to call Hospice."  Hospice.  That means death.  I knew that already.

While the diagnosis is not that he will die within one year, it is that life will take on significant changes during that time.  I have four appointments next week to tour Memory Care Facilities.  It is not too early to start investigating options.  I have always said that I will keep him home as long as I can afford it and as long as he knows far, so good.

There is a special guilt that exists in the spouse.....How do I know in the future that he knows me?  What if he 99% of the time does not know me and I put him in protective custody of a care facility and the one percent occurs and he awakes in the middle of the night and wonders why I left him.  Stake through the heart.

On the other hand, I am 53 and need to protect myself and my own that an excuse not to take care of myself?  I think not. I need to make sure I am healthy and productive to continue paying for all this.

I need to make decisions as they come and ensure that God is in every decision.  Why is it that during these times the human naturally tries to take over and make all the decisions?  God is in Control, Ada.  God is in control.

What about the wedding vows?  I am still loving and obeying.  I remember now....I said "when we are separated only by death..."  What did that really mean?

So, I am spiraling right now.  In two weeks, I am leaving Gary at home for 4 days, 24 hours per day and going to the beach.  I need to do this for my sanity and to dry run being apart.  Pray for me.  Pray for him.  Pray for his caregivers.

Pray for his daughter and son. I am going to go into a closet and cry now.   Oh, that's right.  I can't.  Gary is on the toilet and I need to make sure he is clean and gets safely to bed.  Dementia is hell for everyone it touches.

Thanks to my sister in law Cheryl for being there as an extension of my sanity.  Her love and experience is worth more than she will ever know. 

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