Real

I once heard a radio psychologist suggest that we should not write when we are fatigued, hungry, angry, (something else, I forgot). Well, .......

People have said that I will have extra jewels in my crown.  Don't know about the jewels in the crown...I don't want them.  It's getting too heavy.

There's a country band that comes to Jerry's place once a month.  It's Jerry's favorite ole timey country music.  After such a great "respite" I thought I'd go and dance with him tonight.  BAD IDEA!  He is so pitiful.  Don't know whether to be happy or sad.  When you see these beautiful people…besides the smell of urine, the food drippings on the top of the shoes, the bruises on their faces from falls, the glazed eyes…..what else can I say….I try to see what positive that I can.

Jerry is still beautifully handsome…very skinny…but handsome.  His eyes are still radiant blue…but they see far off in the distance and they are "wanting".  Tonight, he was completely unaware that I was sitting by him….I was sitting on the wrong side.  I should have been sitting on the left.  I am so grateful to these talented people who give of their time to bring these tunes to these forgotten folks.  There is a "mean" fiddler and a blind bass guitar player with a great sense of humor, the woman with a velvet voice and then there is the man that slides on his steel guitar. They smile bravely and joke but there is one singer who insists on playing the old woeful whining songs that bring the room to a downward spiral.  It takes two Orange Blossom Specials and a Good Ole Mountain Dew to get the hands clapping again.

Screen Shot 2013-02-12 at 10.00.37 PM

Jerry was rather unresponsive tonight which brings me such sadness.  I think he was even hallucinating but I couldn't tell. There was no dancing. Oh how I wish I could hear a cohesive word come from his voice.  We held hands tonight...all four of them, his and mine.  His hands are so soft.  If there was anything that use to get a rise out of him…it was foot stomping country music.  When the Orange Blossom Special was over, he got so excited that he gingerly rose to his feet and walked to the front of the room amongst the singers.  He had no idea where he was going.  It was so pitifully sad but a smily type of sad.

Ok….now that you are probably crying.  I'll stop. I realize this is sad.  People say this is cathartic for me.  Yes, it is.  However, it is real and I am not the only person to experience this.  There are many.  We will cry.  We will be blessed.  We will be stronger in time.

Now, I think I'll go eat some toasted raisin bread with extra sugar on top....along with a gin and tonic..then go to bed.

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.

The Good Book - An Alzheimer Journey by Sue Scoggins

Jerry’s been doing pretty well lately.  Today, he was a shaved and dressed up in a beautiful blue striped button-down shirt and khaki pants.    When I walked through the door, he was  rounding the corner of the hallway.  His eyes caught me, he came running, wrapped his arms around me, then they drifted off across the room.  Once my arms are around him, I want to hold him tight....but, he was ready to go.  He liked the Christmas music playing on the radio and even attempted to turn it up by reaching for the air vents.  I knew what he was trying to do.  After a while, it becomes easy to read the mind of an Alzheimer person. It was a gloriously beautiful day in New Bern.  Perfect for a picnic.  So we rode by the local KFC (haven’t eaten at one of those in 20 years) and got lunch to go.  The park was the usual one by the water where all the people come to feed the seagulls.  I placed a towel on the bench so it would be a little warm and soft for his boney behind, then another towel for a table cloth.  Jerry actually was able to maneuver himself  into the picnic table which is something he hasn’t been able to do in months.  The nuggets worked just fine but he loved the cold slaw and sweet tea.

Lately, Jerry has been carrying around the Bible that the hospice Chaplin gave him.  So, today I thought I’d bring his own Bible from home.  As we walked across the street toward the water, he tucked his Bible under his arm like he always use to do.  Once we sat down again, he pointed to the cover, and said, “Holy.”  He began to thumb through it.  He randomly stopped on a page where he had underlined some verses from years ago. Matthew 7: 13,14.  “Enter by the narrow gate; for the gate is wide, and the way is broad that leads to destruction, and many are those who enter by it.  For the gate is small, and the way is narrow that leads to life,and few are those who find it.”  Interesting verse.  Especially when we come to the end of life...I can see that the gate is narrow and I’m so glad we found it... the only thing left is the best thing.....LIFE everlasting.  Thank you God.

After about 20 minutes on the bench, Jerry wanted to walk.  There’s a sidewalk that surrounds the park along the water and the seagulls are fluttering everywhere.  Jerry, frail, with his Bible tucked, me on the other side trying to keep him stable slowly continued our walk.  I could see, up ahead, two rather “thuggie” looking men sitting on their motorcycles at the end of the sidewalk....looking rather....well, ”thuglike” dressed in their motorcycle get up.  We hobbled on out in front of them to cross the street when one of them said, “I like your choice of books under your arm.  The Good Book.”  Jerry held it.   I smiled.  The other one said, “Yeah.  I wish everyone would read it.”  Whew!  WIth a smile of relief.....“Your right.”, I said.

Like I said, thank you God.  Until next time, the journey continues.  Christmas is coming.

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.

Our Thursday Visit-An Alzheimer Journey

I arrived around noon and the staff was walking several of the men in the facility to the activity room.  The activity directors were grilling hamburgers and hotdogs for the men in the unit.  It was their Father’s Day lunch.  NO WOMEN ALLOWED!  The minute I walked through the double doors I saw this long lanky man’s silhouette in the hallway.  They turned him around and pointed.  He came running, eyes gazed past me, but hugging me tight.  He mouthed, “How’d you do that?”  I had to squeeze him extra tight and hold his face to mine so he could see my eyes. We sat Jerry down with a couple of the other male residents and I began helping serve.  It seems to work better to actually participate in the activities, verses observe.  Once finished serving, Sherry (the assistant activity directlor), and I sat down.  She began to feed one of the residents, I held the conversation and made sure the other spoons were making it to the mouth with food actually on them.  Jerry can still hold his burger once I clamp his hands on it.  George, Jerry’s roommate, has to have his food pureed.  The reason being that an Alzheimer patient, in the late stages, looses the ability to chew and swallow.  It was still a positive experience and one that I am now use to.

Once our luncheon was over, Jerry was anxious to “go somewhere”.  I took him back to his room to do “the do” before we left.  Jetti, our lead CNA came with me to get Jerry changed and spiffed up to go out.  I watched as Jetti took care of Jerry.  She helped him brush his teeth and gently guided the cup  to his mouth, saying, “It’s a terrible, terrible disease.”   He depended on her and looked to her for his every move.  We talked about Jerry’s decline.  And George’s too.  She said, “I’m afraid, I’m going to lose several of them at the same time.”  They seem to all be declining together.

In a few minutes, I took Jerry to the car.  I could tell he was so excited because he had a little perk in his shuffle.  His eyes were smiling as we walked arm in arm down the hall. On the way out, he saw some of the other employees.  He had to break away from me to give them a hug.  They love that.  He does too.

We didn’t stay out long.  Just long enough to feel a short escape and while we were out, my oldest daughter called.  The minute Jerry heard her voice on the speaker, he began to cry.  It was only a split second, though, until his attention was elsewhere.  The most precious part was when little 4 year old McCauley spoke.  They had a special bond and use to eat speghetti together. He asked to speak with Papa J.  I encouraged him to continue to talk and that Papa J was in the car next to me.  Little McCauley wanted to invite Papa J to come and throw the football.    It was so cute and I actually think Jerry heard the word “football”.  There is still a tiny connection.  I love the innocence and the unconditional love that children bring.

That’s it for today.  It was a good day.

’Til Death Do Us Part - an Alzheimer Journey

This whole scenario with Dotty and Bob DeMarco (www.alzheimersreadingroom.com/) has really brought things home to me...  That this journey will eventually  come to an end. As with Bob, this Alzheimer journey has lasted for so many years that it has become a way of life.  Our way of life.  I honestly think of Jerry’s and my relationship to be nothing other than a beautiful love story.  It's about our saying “I do"... " til death to us part”  in our young years, when we had no idea what it meant.  We were so young.  I was 19 and he was 24.  I was entering college, he was graduating.  We were young and stupid and thought we knew everything.  We lived high on the hog.  We travelled.  We lived pay check to pay check.  We grew to become responsible.  We gave birth to three wonderful children.   We buried our parents.

I remember when he was returning from a trip, I ran down the halls of the airport and threw my arms around him.  It was like a movie. I remember to this day an elderly woman who watched and smiled. There were times, we fought.  Plenty of them.  But no matter how hard it got, we knew we would stick it out.  We had been blessed with parents who stuck it out...so would we.  We had made a commitment to God.

Well meaning friends encourage me to move on.  They say he’s not there anymore.  They say he's not the man I once knew.  While I will admit I would love to be held and have someone care for me...it is only a slight temptation. Very slight.  I am fully committed and  am reminded of our commitment every time he comes to me.  Now He throws HIS arms around ME.  He is still there, in fact, after we finished at the park yesterday, he abruptly got up, turned around and said in a shaky voice, "I love you".  Unbelievable how, he has no words and hasn’t for years, yet those words came out.

In his lucid moments, Jerry knows he’s in decline.  He tries to say it.  I think he’s afraid.  Not for himself, but for me.  He has always been my protectorate.  He knows he is leaving.  He doesn’t want to.  I cling to our few moments of lucidity. The depth of our unspoken connection comes only after many, many years together.  It is a reward.  A blessing from God that could never have been imagined.  There are no regrets.  I don’t know what it will be like when he’s gone.  I don’t know if I’ll be prepared even though I’ve had all this time. Others have experienced loss and have survived.  I will too.  Then I’ll move on, counting my blessings.  I’ll move on knowing we have experienced each other from the beginning to the end.....and I’ll be thanking God for a truly beautiful marriage.

Why I Paint - an Alzheimer Journey

At the young age of 50, my husband was diagnosed with Early Onset Alzheimer disease.  Declared 100% disabled, it was the end of our lives as we knew it.  This beautiful man, so full of life, patriotism,  and eagerness to care for his family, suddenly became the one who was in need.  He was way too young.  Determined,  we continued life as normal as possible with only a few modifications at first.  Friends stuck by our sides.  But, over the years, our lives changed.  New friends came into our lives.  I must say that God has provided through the entire 13 year  journey.

Seeing the writing on the wall, I needed to prepare myself for caring for him.  I left my job, we downsized, simplified our lives, and spent every moment together.  Inside of me was always this urge to create.  I began to paint.  Jerry would watch me .  He was my biggest fan, bringing visitors into our garage to show them what I was doing.  I knew nothing about painting, but it was the beginning of a new me.  When I had my first solo show, I couldn’t help but weep at how proud he would have been.  There I was....a fulltime artist!

Today, my dear Jerry is in a special memory care facility.  He sometimes knows me.  Sometimes not.  But each time I walk through those doors to visit, he shuffles those long legs and runs to me with open arms.  It is a love story to be told.  I tell him about my painting and he smiles.

On April 26, at Scout and Molly’s in Cameron Village, Raleigh, North Carolina, I will be hosting a solo show to benefit the North Carolina Alzheimer’s Association, in honor of Jerry and all of those who have been affected by this disease.   My paintings will be up for sale and I will be there for a meet and greet from 5p-8pm.