Spiritual

 Since so many have commented on how candid this blog is..I feel that I have to share this.  It's what keeps me going.

Wednesday, the social director from Hospice called and regretfully told me that they would have to discontinue services again.  Jerry danced with the nurse!  Three months ago, he could hardly stand.  The Hospice staff have grown attached and tried their best to keep him on services but he has stabilized again.  What does a caregiver do with that information?  How does a caregiver of 14 years cope with knowing that this will continue.  Do I feel happy?  Do I feel discouraged and exhausted?  Do I panic over the financial devastation again?  Do I feel guilty?  Do I feel comfort that I don’t have to face a funeral quite yet?  All the compartments in my little brain are so jumbled and confused.

Many of you will not understand these things.  How could you?  I’m being honest.  The long period of grieving sometimes gets the best of me.  I CAN’T BELIEVE I AM SAYING THESE THINGS “in public”.  I am very much “in love” with my dearest Jerry.  He is the love of my life and has been since I was 17 years old. We made a vow to love, honor and obey. Til death do us part. I wonder in mind ...This beautiful man ....oh...what is going on here....where did you go? When will you be freed from the shackles of this disease?  Your beautiful eyes are still here and you still light up when you see me.  The road is long.

I’ve just come off of a whirlwind month of art events, a new grand baby girl and a trip to New York with my favorite son. Life was exhilarating and very far away from Alzheimer world.  Now, I’m back and it is quite an adjustment to come back to my empty house and isolated beach.  As beautiful as it is....it is a place of solitude and can be dangerously depressing if I’m not careful.

SO...here’s what happened to me this morning.  When the sun came up my eyes popped open as if calling me out to the beach.  I put on my jogging shoes, downed a cup of coffee, and called the dog.  Montana was so excited when she saw me pick up her ball and chucker.  Today, I grabbed my music and put on my Pandora gospel station....a little meditation music.  It began with Fernado Ortega and his beautiful piano...no words.  God drew me so near.  It was as if He and I were all alone on this magnificent beach. As the music took me away, I prayed my questions out to the Lord.  What is going on?  What do I do?  Where do I go?  Then a song by Cece Winans came on ....Alabaster Box.  I didn’t really know who was singing but I could hear the words

And I've come to pour
My praise on Him
Like oil from Mary's alabaster box
Don't be angry if I wash his feet with my tears
And dry them with my hair (my hair)
You weren't there the night Jesus found me
You did not feel what I felt
When He wrapped his loving arms around me and
You don't know the cost of the oil
Oh, you don't know the cost of my praise
You don't know the cost of the oil
In my alabaster box

Mary adored her Jesus.  I understood her grief and her sorrow.  I understood her praise as she washed his feet with her oil from her alabaster box.  As a visual person, I found myself “out of myself” and envisioning this God, unfathomable, and how how blessed I am to be his.  I relished in that time as the waves rolled over my feet,  the silver sunlight glistened on each crest as it moved onto the shore and the birds skimmed in precision over the surface.

As the music ended, I realized that no earthly condition can rob me of this.  Nor can anything match up to it.  The piano, again, began to play and my heart became light but full with a sweet sense of contentment that I am right where God wants me to be. It's was as if God said, "Be still and know that I am God. Listen. Walk with me. I'm here."  

Perhaps this is another gift...a bit more time to love and be loved in Alzheimer world.  There are still lessons to be learned. It is good. 

As I made my way back across the sand my time of worship was coming to an end.  I had been so moved by this instrumental,  with no words being put into my head, that I pulled my phone out of my pocket to see what was playing.   There on the screen read,  Til Death Do Us Part by Steven C. 

Just wanted to share.

Hospice - An Alzheimer Journey by Susan Scoggins

Here’s Jerry about 9 months before he entered his facility.  Pretty handsome, huh.  He cleans up good!

Yesterday I received a phone call from our hospice social worker.  She had just been to see Jerry and wanted to assure me that he was being well taken care of.  She arrived after lunch and wondered why the lights had been turned down.  On most days, after lunch, the residents are wheeled into the activity room for rest time.  The TV and lights are turned down low and most of them nod off while sitting in the circle, one next to the other.   She told me Jerry was taking full advantage of it and was sleeping peacefully.

The first time I saw Jerry like that it really upset me.  Seeing a once vibrant man sleeping upright in a chair, surrounded by other sleeping people just looked so pitiful.  (Course, I don’t know why that would be any different from the good old days when he slept on the sofa “studying” the TV.)  I’ve gotten use to it though, and actually get a peaceful easy feeling when I see it now.  Sort of like seeing a sleeping baby.

I asked the social worker about his weight.  She hadn’t checked his weight this visit, but recalled from the nurse, that it was still going down.  I think, at last weigh-in, he was around 140lbs.  Pretty thin for a man of 6’4”.  Jeddy, his aide, had told me that he was eating well but that it was just passing right through him.  The social worker told me that this was called “failure to thrive”.  It’s when, no matter how much the patient eats, the body does not process any nutriments anymore.   They just continue to lose weight.

There is a misconception that hospice services are only for that last six month of life.  Actually, there have been patients under hospice care for years.  What keeps Jerry qualifying for services is his “failure to thrive.”  His condition continues to deteriorate, which makes hospice available for the long term.  I have been so pleased with the hospice workers.  Unfortunately, I have not met them all, but I have met the social worker, nurse, nurse’s aide and chaplain.  They visit every two weeks.  It’s good to have an extra set of eyes on Jerry’s care.  Each time they visit, I get a call and an update.

Just wanted to give you hospice update.  I’m going to see Jerry tomorrow.  For sure, we’ll visit the FroYo place for a cup of frozen yogurt and not worry one bit about the calories.