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.

Grace

In the grand scheme of things.......GRACE.

Have you ever felt confused?  Have you ever had a nagging pain in your neck or your back?  Or have you ever tried to keep a migraine at bay?

Most of us have experienced all of those things.  Think about it.  When you are trying to keep a migraine at bay...it's all you can do to smile.  If your back is giving you nagging pain, it's all you can do to stay upright.  When you've had a confused moment...doesn't it kind of set you back a notch or two?  Don't you question yourself?  I do.  I wonder if I'm losing it.  I tell myself to slow down, keep calm and think things through.  It's totally self absorbing.

I can imagine this is the way it is in the beginning to moderate stages of Alzheimer's Disease or dementia.  The fact that you are aware that you are "losing it"...just the awareness...must be totally mind consuming.  "No.  I'm going to beat this.  I'm NOT going to get confused.  I'm going to keep it together."  I remember Jerry saying those things.  I know he tried so hard for as long as he could.   It was so difficult....then add to it the self doubt, discouragement and depression that underlies it all knowing you're not who you once were.  AND, fighting off knowing what lies ahead.  It's unfathomably difficult.

Looking back, I regret times when my demands were too high.  I regret the times I expected him to put the chair back under the table or close the cabinet doors and drawers. How much was the disease and how much were these things just laziness?  I regret the frustrations that got the best of me when he just "didn't get it".  Why he would let the dog in, then out, then in again.  I promise I'm not beating myself up over it.  How could I have known that it was a part of the disease.  What did I know?  I didn't know a soul with Alzheimer's disease.  Every day was a new learning experience.

For all you newbies, remember the word GRACE.  GRACE,  emblazon it on the back of your hand so that you are reminded every day to give your loved one grace.  In those AWARE days, when they know they are losing it....they need grace.....they need unconditional love and mercy.  They are trying.  Even when they are grumpy and negative.  Even when they slap you on the butt in public. Even when they repeat themselves among friends and say things totally unrelated to the topic of conversation.  They are trying to keep it together.  They are trying to be normal.  Whah!

Dear caregivers, I know it's hard.  It is the hardest task you will ever have...to care for this loved one.  But, you can do it.  With God's grace and strength YOU CAN DO THIS.  Our loved ones need us.  This is our mission for now.  The rewards will be great so keep it up.  WE CAN DO THIS.

Those Vows

Scrambling to get my shoes on, I snuck into a wedding, late, this afternoon and sat in the balcony.   The view from the balcony, overlooking the wedding party and the guest, conjured up lots of reflection and I found myself smiling with the sweetness of the moment.  Such a young couple, just starting out, the bride all dressed in white and the groom all dressed in his tuxedo with pink tie and boutonniere. Such naiveté as they entered into the promise of their lives together.

Unless we're fortune tellers, most of us don't know what lies ahead.  We have no idea of the promises that we are making when making those wedding vows.  We enter into this thing called marriage, as idealists.  But, what about when the outer beauty and perfection wear off?  What about when the days are numbered or one gets grievously ill.  What about when the "cuteness" wears off and we have to wipe bottoms or spoon feed the other person?  The wedding vow is so starry eyed and romantic at the time it's being spoken...but what about later on down the road?

Very vintage!  Hippy days.

I am so thankful that Jerry and I didn't have big grandiose ideas of marriage. I suppose we really didn't think too far ahead.  We didn't have a 5 year plan.  We just made the commitment and never looked back.  This was the same example set by both of our parents, for which I am so grateful.   Maybe I had more romanticized the idea but Jerry was more of a realist.  In reality we were, and still are, life partners more than anything else.  Whatever life threw at us..we would tackle it together. That's a pretty serious commitment!!    I couldn't help but get a tear in my eye when this couple said their wedding vows.

So, here we are.  Now.  43 years later. 

Earlier, when I drove into the parking lot the shuttle bus was in front of the facility. The unit was going on a field trip and Jerry was on board.  I parked the car and walked to the front of the bus and watched him as I came around front.  Once into clear view, our eyes connected and he raised his arms into the air...as if to say, "hallelujah".  What sweetness!  His eyes are still glazed but so sweet and vulnerable. Like a new born baby.  (I just had one of those...will write about that later.)

Jerry was eager to get up from his seat and we moved the resident who was next to him so he could get out.  I took his hands and as he rose, ours eyes locked.  Honestly, I don't know if he really knows who I am...but he knows I am SOMEONE. Someone who is important to him.  Sniff!  

There is no understanding this or explaining this to a newly wed.  No possible way of understanding.    I could never have understood this kind of love connection either, if we had not stuck it out.  

The activity director and I decided that Jerry would be just as happy going with me for the day.  So we shuffled over to the car.  Jerry's long arms and legs can be quite stiff and resistant so it is a bit of a challenge to get him into the front seat of a car. It's like folding up a piece of Styrofoam...bend it until it breaks...accept I don't want him to break.    And the whole while that I'm trying to manipulate his body, he's looking perplexed.

Once he was in the car, I noticed that he was wearing someone else's old sweatshirt and that his pants had a hole in the crotch.  Honestly, I've been a bit neglectful in getting him new clothes.  So it was time.  TJMaxx was around the corner, so I said, "Self.  What the heck.  Take Jerry in and get him some new jeans.."  So what if people stare.

Now this is the first time I've taken Jerry into a store in at least a year. In fact, I rarely take him off campus.   His state has been so fragile and I haven't wanted to put him in any confusion.  But, actually, this worked today.  He's actually so unaware that he wasn't confused at all.  I held his hands onto the cart and talked to him the entire time.  I'd hold a shirt up in front of his face and talk, as if he could understand.  He couldn't.   I'd place jeans up to his waist as if he knew what I was doing.  He didn't.  I bought him new jeans.  A new shirt or two.  New jammie bottoms and long sleeved t-shirts to warm up his freezing arms. I kept my arm wrapped around his skinny waist and we shuffled around for about 15 minutes.  

I wouldn't trade that time for anything.   Short but beautiful.  The kind of time that a wedding vow cannot fathom.  But a good time.  A reward that can only be experienced after a long life together.

Re-energized for Year Fourteen - An Alzheimer Journey by Susan Scoggins

As a caregiver, consistency in routine seems to keeps things working at their best.  VIsits twice a week, once during the week and one weekend day, keep the time with Jerry pretty positive.  We used to have lunch dates, but because of his declining state, I now go just after lunch, around 1:00.  If the weather is nice, I still put him in the car and we drive around town to see his favorite waterfront, the birds and the boats.  If the weather's too cold, we head to the facility dining room, which is white table cloth, and have a coke or coffee and a cookie.  (I'm always prepared with cookies or peanuts.) After months on end, my mental energy tank begins to run low, so I've found that I HAVE to get out of dodge for a couple of weeks a year to refuel. I can feel myself sinking, my paintings lose their energy and so do I.  Luckily for me, my son lives in California, so it's the perfect escape.  In our 41 years of marriage, Jerry and I rarely left each other (accept for his business travels.)  I wasn't one for girls weekends and he wasn't one for guys golf trips.  I suppose you could say that we were stuck to each other like amyloid plaque and brain cells (not funny).  The first time I ever left Jerry for over one night, was a year and a half ago.  He was at the facility and I went to a two week art school in the mountains.  We both survived.  Then, last spring, I went to Santa Barbara for a week of intense painting.  It was wonderful.

Capitola By the Sea

20x24 oil on canvas

January and February are overcast and dreary in the Carolinas.  That type of weather in Alzheimer world is a recipe for depression.  So over the last few weeks, I went back to California.  With my paints neatly packed, a rented car, and US 1, I drove through Carmel and Big Sur, then ended up in Pasadena with my "old same", my son, Mark.  He's good for reenergizing me.  We worked on a new website, created a new art video, played great music, laughed and celebrated being together. It was a beautifully crazy fun time.  And even though I felt the need to call Jerry almost every day, just like in the old days, each day, his nurses who are well versed in knowing how to make the families feel good, would say, "He's fine.  He danced with me today."  This trip was the perfect thing to refuel my emotional and mental energy tank so that I could go back to him.

Refreshed after two weeks, I walked into the facility curious if Jerry would know who I was.   The aide had him back in his room, bathing and dressing him, shaving and putting all his "smell good" on.  When he walked out, I melted as usual.  He put his arms out, but he did not know who I was.  (He gets lots of hugs from everyone who sees him).  I wrapped my arms around him, pulled away and told him it was me.  Hugged him again and laid my head on his chest.  As we walked down the hall, I could tell he had a happy countenance. His eyes had a brightness to them.  Even though he didn't know who I was, he knew he was with someone who made him happy.  We wandered down the hall to the living room but he wasn't content staying at the facility.  WIthout words, I could see he wanted to go.  This is our routine...go, get in the car, and drive around.  He knew.  He knew who I was.

If you have any opportunity to enable a caregiver to get away and have a re-energizing retreat.  Please do so.  It will help them go the distance.  Thank you all for encouraging me.

Caregiver Tips from Santa Barbara - an Alzheimer Journey

Today, I'm going to take a minute for caregivers.  Tips on surviving and thriving.

In an earlier post, I mentioned it's taken a year and a half before I was healthy enough to continue this blog.  That's because I had reached a breaking point of exhaustion and grief and it was taking ALL of me to express any kind of laughter or light heartedness.

Step one.  Breaking point.   I got so angry that I made a resolution that Alzheimers was claiming  Jerry, but it was not going to take me too.  That decision changed my life.  I began to schedule my visits with Jerry to every three days, so that I could be "normal" in between.

Step two. Exercise.  Exercise, you say?  Listen, I was so beaten down that I could barely walk around my block.  I am not exaggerating.  I started Zumba classes,  cried through the first class and almost walked out with my head hung low.  I was a mess!

Set goals to keep on living.  It's been  7 months.  Today, I actually lifted my feet off the ground in a "jog" step  for 6 CONSECUTIVE  minute intervals  and I'm working myself up to my first sprint triathlon.  (well…..maybe)

Step Three.   Acknowledge the grief.  There are still times when I get overcome with grief.  While Jerry is still living, our life, as we knew it, is gone. The most that is there is the essence of who we were.   When tears of grief overcome you, let them flow.  You may as well NOT try to stop it.  When you feel you are drowning in tears and you've taken your last gasp of air, reach down into the inner most of your being and, with a mammoth stroke, thrust yourself back up  to the top.  You'll come popping out of that sea of despair  and you'll gasp in the largest breath of your life.  THAT IS LIFE!

Step Four.  Change of venue.  On occasion, get outta town!  Refresh your spirits.  Keep on trucking.  Move forward.  Make goals.  Don't dwell.  Become focused on flourishing the new you.  A new you will make a much healthier caregiver.  A positive caregiver is a better caregiver.  A happy caregiver makes your loved one happier.  Now, instead of hanging on Jerry and crying in his arms, I can go back and dance with him.