I arrived around noon and had phoned ahead to tell the staff that I was taking Jerry out for lunch. Jerry was sleeping in a chair.  I see a lot of that these days.  Usually, he is sleeping or wandering.  One or the other.  Once he was shown that I was there, he popped up and came running.  Now, let me clarify this.  Running, in Alzheimer world, is a slightly less than slow shuffle.  Yet, his excitement to see me is evident.

One of the aides wanted to take him to the bathroom as a precaution before we went on our outing.  Jerry would not let go of my hand, so the three of us walked down the hall together.  Hate to be so personal, but Jerry is so thin, regular “briefs” (as Bob DeMarco calls them), which are disposable undergarments, do not fit.  So, now Jerry wears the kind that tape in the front.  Just wanted to keep you informed of what’s out there in that department.  Hospice provides these.

For lunch today we went to the local fast food chicken place.  Personally, I’m not a fast food kinda gal, but since Jerry is always eating cafeteria food, I figure he likes a “burger and fries” from time to time.  Besides, this way, he doesn’t have to go into an unfamiliar restaurant where he cannot navigate a chair or a booth.  (He doesn’t quite know what to do with a chair these days.  He usually circles them.)   So, we took our chicken filets, sweet tea, and fries to our favorite park for a picnic.

The decision was made to stay in the car and turn up the oldies country music station, like his daddy use to play.   Jerry’s foot actually tapped to the sounds of Conway Twitty and oomp-pahhed with “One Day At A Time, Sweet Jesus with Cristy Lane …when all of a sudden, Dolly Parton, in Mule Skinner’s Blues, belted out a yodel.  Jerry’s face broke into one of his “shit-eaten” grins and he actually yodeled!   (Excuse, the language, but there’s no other way to describe it.)  He yodeled, not once, but twice!  It was too good to be true!  Good ole Dolly did it again.  I think I’ll tape that song for another day.

The reason I told you that is because it was a good thing.  Alzheimer world was about to get me down today.  I was spinning myself right down the emotional drain of despair.  To be perfectly honest, it’s hard to find joy sometimes.   A year and a half ago, most of the residents were in, I’d say, the middle of the late stages.  Most were able to connect in some way.  Not many could talk,however, one could belt out a beautiful tune with gusto!  In recent months, however, it seems that many of the residents have declined very rapidly.  Including Jerry.   There is much confusion in the ranks and the staff has their hands full.  The needs are so great and even though Jerry is perfectly fine in his own world,  I feel this tug to be near.  The end stages could go on for weeks or years.  No one knows.  That being said, the caregiver (me), needs to pace themselves in order not to burn out.

After a desperate call out to my friends, I went about the day trying to focus on things that were positive.  Painting.  I turned on my best weapon.  Music!  Triumphant music!   First the Prelude and Title March of Superman, and the Super Crime Fighter from Superman,  The Stampede from the Lion King, concluded with An American Symphony…the masterpiece played by the London Metropolitan at the end of Mr. Holland’s Opus.  I can just see Richard Dryfus waving his baton in triumph and completion.  Waving my brush across that canvas, I was energized to fight another day!

Hopsice called a few hours later  to give me a report on Jerry.  She couldn’t see much change since last week but  agreed with me that he is not aware of his surroundings.  That is reassuring;  a blessing.  But  even though I miss his being able to respond, I still know he knows me.    Nurse Lucy reaffirmed to me that Jerry was in a safe place and getting the best care.  So, as instructed, I’ll remain in my scheduled routine.  Tomorrow, is my  next visit.

Today, when I drove up to see Jerry, the bus was out front.  The alzheimer residents had just returned from a “scenic tour”.  I think I mentioned in an earlier post about how cumbersome it was to carry these “tours” out.  It takes forever to load and unload.

When I approached the bus, one of the female residents was in her wheelchair on the ramp.  The activity director and a CNA were trying to figure out how to get her off the bus.  The ramp had decided not to work.   I looked up and asked, “What’s going on?”  The activity director responded with , “The ramp isn’t working.  Here.  Catch!”  The resident’s  eyes popped open!  We all laughed.  I watched as they painstakingly, picked each resident up and helped them walk…a slow shuffle…off the bus, then lift the wheelchairs down to the ground.  What patience!

It’s attitudes like this that are the little things.   The little things that are so important. In a year and a half, I’ve honestly not seen any instance where a staff member has lost their patience.  Not to say it hasn’t happened…afterall, it’s a thankless job and requires endless patience.  Last week, I witnessed a new patient acting out.  It was at the end of dinner time and the staff members were wheeling the residence out of the dining hall and into their activity room where they hang out an watch tv.  This gentleman began to get hostile.   Jerry and I managed to slink out of the way as we watched him stand up from his wheelchair, begin to yell, and push his wheelchair aside.  I witnessed as the staff calmly, but firmly  interacted with him, coaxed him back into his chair and swept him on down the hall.  They were well trained to diffuse the situation.

Anyway, today when I went to the back, I saw Jerry “sleeping” in the activity room.  That’s what they call it when he is dazed and out of it in front of the tv.  Barbara, one of the other residents, who always expects a hug, was sitting next to Jerry and began to wave.  I tiptoed over  to give her a hug and Jerry turned his head.  Up he “jumped” with his arms open.  I just love that!  Seconds later, he had no clue who I was, but he was ready to “get outta Dodge.”  I tapped in the code to the door and he opened it.  (I think he’s escaped from time to time because he knows just how to open that door.)  Our trip was to the Dairy Queen where I got him his favorite medium sized Butterfinger Blizzard.  That skinny thing ate the entire thing!  Trips to the “Queen” are good because it’s short, he doesn’t have to get out of the car, and well, …..it’s ice cream.

By the time we returned, the shift had changed.  He really didn’t want me to leave, but we used the old standby “divertion” tactic.  FOOD!  One of the CNA’s coaxed  him with some yogart.  The sweet kind.  He went right over and I slipped out without his even noticing.  Out of sight, out of mind.  He probably didn’t even realize I was gone.

Anyway, just because someone is diagnosed with Alzheimer disease or any sort of dementia, does not mean you cannot go on living.  In fact, once we were facing the future of such a crisis, we figured we’d better not waste any time, so  we lived life to the fullest with only a few modifications.  Those connections that were made, such as that kiss, are still there today.  The bonds of a relationship do not go away even though  the memories do.  I remember some advice that our neuro psychologist once said, “Don’t waste time worrying about what might never happen.”  That’s some of the best advise I was given and I’d like to pass it on to you.

To worry about the “end” of this disease will rob you of the present.  The end stages will be hard enough when you get there.  In the meantime, the present is a treasure not to be missed.  When the “end ” comes, the life you’ve  experienced  will still remain embedded.  Maybe not the details of places and events, but the essence will be there.

Today, life has changed dramatically for us. Our trips sometimes barely make it down the hall. At best, it is to the Dairy Queen and watching the ducks. I’m thankful for that. We may  not be in those galavanting wine country days, but we’ll still be taking advantage of the present.  It’s such a sweet, sweet present and, yes, that kiss still remains.

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.

Bob has cared for his mother, Dotty, for over 8 years.  He has shared their journey and his turning this journey from burden to joy.  I’ve followed him, along with thousands of others.   His devotion to her and their relationship with each other has inspired me.  It continually reminds me to be faithful to the very end, no matter how long the journey lasts.

Dotty has now gone to the hospital and is approaching the end of her mission here on earth, according to Bob.  He sits by her side, as we speak.

Today was so good.  It took about two hours to complete an interview with a representative from the VA.  He was there to appoint me fiduciary of Jerry’s funds.  I never really knew what a fiduciary was…..mainly, it means….I get sent to Guantanamo if I misuse or co-mingle funds.  No problem.  Just glad it’s final and that help is on it’s way.

Afterwards, he wanted to meet Jerry.  I suppose it was to make sure he wasn’t some fictitious character that I made up.  Don’t know why I would go through all this if I was making it up.  But, I understand.  There IS a lot of fraud out there and he couldn’t have been nicer.   Course, once he met Jerry, he was convinced.  (The picture above was taken several months ago. Look!  He’s actually making eye contact.   He definitely looks different now…but I  prefer to post some of his handsome pictures.)

We “ran” out the door for our outing, when the hospice nurse met us in the parking lot.  She had come in, but all the residents on the front porch pointed to us headed to the car. The hospice nurse was so sweet.  She didn’t want to make Jerry come all the way back inside, so she took his vitals while he was sitting in the car.  It was hot, so he wasn’t very responsive.  She was MORE than kind and gentle with him.  I swear…these people are angels.

Jerry and I had a nice little outing.   Since I couldn’t find a parking place on the main street in front of the ice cream shop, I drove over to the little convenience store next to all the yachts  in New Bern.  I crossed my fingers and told him to stay in the car while I ran in to buy goodies.  He’s definitely declined, so I don’t think he could have escaped even if he wanted to.  Once I piled a heap of junk food on the counter (snicker ice cream bars, a jar of peanuts, and a coke), I handed the guy my card while I peeped out the front window.  Jerry had undone his seatbelt and was in a frozen position, holding the buckle out in front of his face.  Uh-oh!  Still……he couldn’t get his body coordinated enough to get out.  We drove on over to Union Park and found a bench to sit on.  The weather was perfect, sunny, with a little breeze that kept things pleasant.  Ahhhhh.  It was so perfect..sunny…… ice cream bars and a coke. ( I think I just said that twice.)  We stayed for a good 30 minutes, then took a little walk. In case you’re wondering.  Our “walking” is a very slow shuffle and doesn’t go very far.  But, hey…..it’s still a walk.

When we returned to the facility, I noticed that the front porch was empty.  We walked in and could hear the singing.  A  group from a local neighborhood was singing to a packed house….the place was bursting with smiling energy from Hello Dolly.  Loved it!  While Jerry doesn’t respond like he use to….it looked like he heard it and he raised his eyebrows…so I think he liked it.  Don’t ever underestimate what it means to visit (or sing) at a nursing home.  The smiles are beautiful.

The financial expenses of caring for someone with Alzheimer disease can be devastating.

For those of you who are entering into this journey, I would recommend consulting with an experienced Elder Care Attorney to have an overall evaluation of your financial situation.  Your attorney can help you plan and watch out for pitfalls that you’ll want to avoid in the future.  You’ll need to check on insurance policies, living wills, health care power of attorney, property titles, etc.  You can find referrals for attorneys through your local Alzheimer Chapter  (in North Carolina, www.alznc.org/) or senior resources organization. ( in Wake County, www.resourcesforseniors.com)

Today I want to mention Veterans Benefits.  Even if your loved one did not serve for an extended period of time, he/she may still be eligible for some sort of assistance.  The application  process takes a long time, so check early and get the process started.  For us, I applied for VA benefits several years ago.  Jerry could have received medical visits, prescription medications and occasional respite visits, even glasses at a much reduced cost.   At the time, we were still very attached to our own doctors, so we did not take full advantage of the VA services.  However, once I placed Jerry in a facility, I began to panic about the cost.  I was afraid our money would run out.  Our situation is unique in that Jerry was very young, he was the primary income earner, he was not eligible for  medicare or medicaid assistance toward the facility cost, nor did our private medical insurance policy pay for anything.  EVERYTHING is private pay!

In a panic mode, I contacted the Veterans Administration in my area again.  I was told about  Aide and Attendance. All the information is online, but this kind gentleman explained, in a nutshell, what I might be eligible for.  The qualifications are pretty specific.  If you qualify, the veteran may be eligible for a monthly income to help offset the cost of caring for their loved one at home or  in a facility.  You can read about this online at www.va.gov/.  Again, the process is long and laborious, but well worth it.

Now, I know from experience that the information can be overwhelming in the beginning stages of this journey.  In fact, there were many days, I couldn’t read or absorb another thing.  I was so confused at all the disjointed information being thrown at me from doctors, social workers, insurance companies, alzheimer organizations, attorneys, etc.  It was too much!  After all, when was I going to do the laundry, sweep the floors, fix the leaky faucet and prune my shrubs!

Just take a deep breath, tackle one or two things at a time, then go out for a bike ride.  Try not to allow yourself to BREAK!  Trust me…..it WILL work itself out in time.

For a moment, I’d like to say something really personal.  Actually, the blog is very personal, however, this is the most personal of all.

In a recent discussion with someone, a comment was made, “You seem to think you need God in your life.”  I shook my head “yes”.  They respectfully but resentfully continued, “Well, I figure you’re an intelligent person so who am I to criticize you for that….but you certainly aren’t a sinner.”  I think this person views me as some sort of saint or something.  (Last time I looked in the mirror, my halo had a few dents in it.)  His words caught me a little off guard but it got me to thinking.

Here’s my belief.  Thus, “viewer discretion advised.”

I DO NEED GOD IN MY LIFE.  Having God in my life does not change my circumstances.  It changes my response to them.

Consider if I didn’t.  Jerry and I have been together for over 40 years.  We were childhood sweethearts.  We were, and still are, one flesh.  The “whole” that grew from innocence to seasoned.  Who experienced pain, struggled, played, fought, laughed, planned and built a life together.  We were a wink and a nod, the pea and the pod. (that’s from a song.)  We were the ying and the yang.  But, now ying has lost her yang.  Half of me is almost gone.   What if “US as a whole” was my identity?  Who would I be?   A fat old woman with a curvy hole in her side!  Incomplete!   Is it  possible, in the midst of such a dismal situation, to be positive?  YES!

Once I was someone’s daughter, but my parents died when I was a young adult.  I was a mom, still am, but my children have lives of their own. I’ve found art as a new passion and possibly a new identity.  However, what if my art begins to plummet?  Who would I be then?  A failed artist?   Is it possible to stay positive when life’s accolaides are so temporary?  YES!

At breakfast the other day, a friend and I were talking.  She is training for her first marathon and is a fabulous athlete.  Her practice  13 mile run, a month ago, was proof of her dedicated training and she was right on track to meet her goal.  Then her back went out!  For over a month she has not been able to move, much less walk or run.  Her disappointment and frustration was evident as she tearfully said, “I’m so frustrated.  I wanted to do this for myself.  I am an athlete.  This is who I am, my identity.”  Is it possible to stay positive when the goals seem unobtainable?  YES!

God is my “complete”.  It’s already accomplished, so I don’t need to search for my identity. I find fulfillment is directly proportional to the knowledge of God’s love for me.  His higher calling for me is the underpinning of my strength and a positive attitude.   The sword of Alzheimer Disease runs deep, yet wounds come as no surprise to Jesus who experienced them at his crucifixion. I’ve learned to serve in a way that  I never knew was possible. (And it’s not glamorous.)  The mission as caregiver is humbling yet an honor that has tested my faith and proved it to be true.

In the past, Jerry was the extrovert, off the cuff person.  I was the introvert, behind the scenes, analytical person.  Now, the rolls are reversed.  While it is energizing to put on these shows and meet people, I am still an introvert at heart.  Think way too much.  Verbalize my thoughts way too much.  THUS, THIS BLOG!

Sunday, after church, was the only day to visit with Jerry this week.  My normal schedule is every three days, but this time it had been a full week.  Deviating from the schedule  usually gets me into trouble.  I was tempted to stay  in my own positive world, away from him, avoiding reality.  But my heart told me I had to go.  The drive to New Bern is two hours.  Two hours of thinking!  Down and back.

When I arrived, Ro, my favorite CNA was on duty.  (I have lots of favorites.)  We all probably wondered if Jerry  would recognized me.  When I walked through the doors, Jerry saw me and his eyes lit up.  He reached out his arms and walked toward me and we embraced with bitter- sweetness again.  Sweetness that he knew me, bitter that it was in this way .  I was particularly emotional because it had been so long and I was reminded again of how much I missed him.  It never goes away.  I was still able to take Jerry out but soon realized that these types of ventures may be coming to an end.  We went to our pizza place but this time it was more difficult.  He was more confused and it was hard to get him to sit down.  He didn’t know what to do with that booth or chair and once seated, he kept getting up.  Thank heavens the place was empty.  The waitress was so kind.  After the confusion of getting him seated, I tried to make small talk to keep his attention.  There was no response.  But then I said, “I went to church today.”  He burst into tears.  THAT KILLED ME!  It was as if he had lost a child or something.  It told me that those things that he holds dear are still within him.

OK.  Onto positive thoughts.  Before going back, we drove over to the park and I put on an oldies station.  Jerry, immediately perked up and we threw a small football.  He loved that!  He even ran a few steps and threw a spiral!   I let Montana go and we played “keep away” from her.  It was a beautiful 15 minutes.  Whew!

The drive back forced me to think forward.  I couldn’t stay in the Jerry mode.  (otherwise, I wouldn’t have been able to drive.)  I’m hoping to think of ways to have more effective visits.  Maybe visit during an activity, or forgo the eating of a meal.  Maybe just a ride to get ice cream, then to the park.  Keep the music going, so we won’t get melancholy.  Keep the visit short, between 30 minutes and an hour.  Avoid staying too long, so that we don’t get too connected.  Hmmm. There I go analyzing again!