Back from my Coma

The ice on the pond is frozen solid and there are still remnants of snow on the ground.  Yesterday, Jerry and I walked Montana out to the beach and saw the most beautiful sunset; an array of blues down to yellows and orange, the purple horizon line, then turquoise out to the shoreline with a pop of orange on the sand.  Amazing! Our house has been like grand central station with occupational therapists,  physical therapists and companions coming in.  It took several days of craziness to get the schedule worked out, but it’s doing better.  Jerry likes everyone who is coming, however, he has no idea why they are coming.  Sometimes, I wonder why myself.  The diversion of seeing other people is a good thing and the women are so gentle and sweet.  The occupational therapist observed that not even one word commands work for Jerry because by the time the word is spoken to him, it is lost.  Of course, he made a liar out of me yesterday and showered all by himself while she was there.  Go figure!  Then, it took one hour for him to dress for her because she wanted to see if he could do it himself.  NOT!

She’s sending another girl out on Monday who is knowledgable on VA benefits.  Did I tell you that Jerry might be eligible for Aide and Attendance from the VA?  Oh!  What a relief!  If he qualifies, he should be getting some funding to go toward the cost of Homeplace.  I’ll keep you posted on that.

Somehow, I fell off a cliff the last few days and just couldn’t get up the words to write. I think I’ve been in a coma. I’m back now.   Whenever I get cold feet about sending Jerry, I receive confirmation that I need to stay the course.  It’s pretty weird.  About two days ago, my friend, Rose, was up in New Bern for an eye appointment.  While she was sitting in the waiting room, she noticed a van drive up.  Three elderly people got out and were ushered into the doctor by an aide.  The words on the side of the van were HOMEPLACE.  She watched at how gentle and positive the aide was to her people.  One of them said, “We don’t know what we would do with out our helper.”  Rose couldn’t wait to get home to tell me.  How random was that?  My friend "just happened” to be at same New Bern eye doctor on the day that the Homeplace people were there.  Too cool.  I thanked her for that.

There’s a lot more to write about, but the words just aren’t coming.   We’ll have to wait for another day.  Talk to you soon.  Kiss Kiss

A Moment of Clarity

The last two days, we’ve been snowed in.  Yep, 6 inches, here at the beach.  It’s been a great “hunker down” time.  You know the kind of “forced” slow down.  I mean, we’ve hardly been out of our jammies.

Today, I got up before sun up.  (We went to bed so early last night...I mean, 10 hours of sleep was plenty.)  Anyway, after finding out I had painted an entire commission piece vertical instead of horizontal, I decided, I’d better get my thinking cap on straight.  (Thank heavens it was a small piece.  Whew!)

Snow days work great for Jerry.  His world is reduced to a perfect little world with all he needs:  his house, his dog and me.  Maybe that’s why he’s done so well the last two days.  He’s been less anxious, he’s let me go downstairs to paint for an hour at a time, he even got dressed all by himself.  (Remember, we kept on his flannel jammie bottoms.)  He’s been fairly alert and communicative.  (sort of)  The only time we got in a little “tiff” was when I had scooped up a hot plate of spaghetti, turned around, and bumped into him.  I had placed him in his chair with the news on, but he kept getting up.  He was ON MY TAIL and no matter how many times, I asked him to step back, he couldn’t.  So when I turned around, I nearly spilled the whole thing all over him.  It scared me to death and I yelled, “Back up!”  Then, he got mad and grabbed the leash to leave.  I put down the plate,  retrieved him, and desperately tried to smooth things over, saying, “It’s dangerous.  I’m not trying to be mean.  I nearly spilled a hot plate on you. I need you to sit down."

This poses a new dilemma.  Do I still place him, when he’s alert?  It will kill him...or at least send him into a complete frenzied  downward spiral.  In the last few months, I’ve seen him “disappear”, but now, he’s back.  I know this thing comes and goes, but does this mean, I can hold on a little longer?  Oh, what to do.  What to do.

Remember the Detox?

Remember when I started the search, I went on sort of a “detox”?  I fasted “somewhat” from alcohol, sugar, junk foods, etc.  I wanted to get all the toxin outs so that I could think clearly....and, honestly, I lost my appetite.  WELL, at about 4:00 yesterday something happened.  I was hungry!   With a sudden burst of energy, I opened a bottle of cabernet and said, “Jerry, let’s go to the grocery store.”  We piled in the car, headed over the bridge, and I said, “What are you hungry for?”  No answer.  “Chinese?”  “Steak?"  No answer.  I grabbed a cart and we went in. Before I knew it, I had filled my cart with spinach, garlic, sweet potatoes, steaks, blueberries (for cobbler), whipping cream,  ice cream, and beer (for Jerry).  Oh yeah, and fritos.  (random!)  Guess it was time.

It’s the Runway Lights LIghting Up! (per Ann Graham Lotz)

What I mean by that is that it looks like things are on their way for the next phase.  I’ve chosen Homeplace of New Bern as Jerry’s new earthly home.  All signs lead there...  the 99 year old resident, Presbyterian minister, named Ivan, who reads his Bible every day. (Ivan was my dad’s middle name);  Calvary Baptist church services (Jerry grew up in a Calvary Baptist church), the director of nursing named Jerry, the happy residents and the feeling of home...and blue grass music once a month!  (that was the final piece.) I visited again yesterday just to make sure I wasn’t delusional or something.  I met with Kathy, the director, and Jerry, the director of nursing.  They spent over an hour with me as we sat in the living room by the fireplace.  I asked questions, like: how many showers per week,  what do they do when Jerry  wanders in the middle of the night, and end of life care.  They reassured me at every turn, and then we proceeded to talk about what to do next.  Right now, the rooms are full and Jerry is first on the list.  This gives me time to prepare.

It turns out that Jerry, the nurse, lives about a mile away from us, so when the time comes, he’s going to come over for coffee and strike up a friendship with Jerry.  That way, when he goes to his new home, he’ll recognized someone.  (hopefully)  Jerry also, cautioned me that the first month would be the hardest ..for me, especially.  I tried to tell him that I was ready.  I have acquiesced to the fact that I cannot handle Jerry’s needs anymore.  He gently told me, that when I turn and walk away, I won’t be ready.  He told me that there would be times when he doesn’t recognize me or when he gets angry.  After every caution he gave me, he said, “But, he will be fine.”

This morning, I checked my facebook and saw all the precious comments and the healthy picture my daughter posted, along with “I miss you, dad.”

I’m at peace with this now.  God is good.  It’s now the long awaited phone call, then the good bye.  For now, I am watching Jerry disappear, more and more, each day right before my eyes.  His decline is evident, almost markable.   It’s all coming together now and the runway lights are lighting up.  It’s time to let go.

Give a Cup of Water Away

Today, two girlfriends came over to have a quick lunch with me before they headed off to art. Now, these girls are my buds and seem to know what’s best for me, when I can’t think for myself.  While eating, I commented how I hadn’t put anything back after all the ceiling and window replacements in the house.  All my stuff was upstairs and I just couldn’t get motivated.  So, their eyes lit up and said, “We can decorate your house!”  “Have at it!” I said.  So, after three hours of putzing around, rearranging, placing things here and there, and retiring old things, we were finished.  It was three hours of shear fun. Watching them, caused me to reflect on the gratitude of how so many  people have brought  cups of water to us over the last 11 years.  Some water came in HUGE BARRELS, like the friend who just volunteered over 100 hours of his time to repair my failing retaining wall or the nights when someone would stay awake with Jerry for his “sleep deprived” MRI.    Some  were delectable  little tastes, filled with richness, like the neighbor who left a little jar of daffodils by my front door when we both had the flu or when I checked the mail and found a jar of homemade applesauce with a ribbon around it.  I wanted to dedicate this post to some of those things, so that when you ever encounter a loved one or friend who has been caregiving for a long time, you may take a moment to pass them a cup of water.

Please don’t ever let the fear that you can’t “DO ANYTHING” or “SAY ANYTHING” stop you from expressing the gifts of kindness and compassion.  After the initial shock, there were calls of concern pouring out all over the place.   Friends helped me get my house ready to sell.  Another sold it and waived the fees while taking care of all the details and the backbreaking work of digging up my septic tank!    Our oldest daughter was getting married, so people volunteered to be runners and coordinators at the wedding, baked cookies and goodies for the gift bags, and took care of lots of little details.  As a beginning caregiver, the initial shock is overwhelming, especially with this type of diagnosis.  Being so overwhelmed doesn’t exactly lend itself to details.  Your too consumed with trying to make sense of the loss to worry about selling your house or putting on weddings.

But as an illness drags on for years, lives go on and move on.  Friends get busy.  The caregiver becomes isolated.  As the  disease grows worse, the needs actually become greater.  Especially, when the person who is ill is your spouse.  Now, not only does the caregiver care for the spouse, but she (me) has to take up all the responsibilities that the spouse use to take care of....down to taking out the trash.  I can tell you, it’s gives me a little smile  when I come out of my house and see that someone walked by and brought my trash can in.  What a little thing, but what a wonderful thing!  More things, like: when my neighbor walks his dog, he sometimes walks mine too; and having a little casserole for two dropped off in the morning.  My contractor even brought my mail to me and someone washed my car, changed my oil and had my tires rotated. Even a text message that says, “You are in my thoughts today.” can lift one’s spirit.

Then, of course, there were the JV’s (the Jerry volunteers) who coordinated outings for Jerry.  AND, the volunteer who takes him every Monday.  AND, the friend who calls and says, “Can I take Jerry to lunch?” Or the friend who rides with me to check out facilities.  The list goes on and on.

So, next time you are thirsty, take an extra cup of water to someone who God places on your heart.

Wandering

When blog began, it was story about love, challenges, and endurance all wrapped up with a little humor.  At the end of a year’s writing, 206 posts to be exact, it’s not funny anymore.  I’ve tried to find some humor in all of this, but at this particular stage, it’s hard to get on that side of it.  I’m sure, in time, the look back will find it’s humor.  But not now. So, for the next little while, instead of blogging “downward”, I going to try to focus on facts and comparisons and education.  Starting today.

For years, I’ve been asked, “does he wander?”  I would always answer, “What do you mean?”  “Away?”  “No, he doesn’t wander away.”   Last week, while visiting one of the celestial facilities, I met Lo Lo.   I say that tongue in cheek...because these facilities all look like purgatory to me.  Places where the spiritual beings are waiting for their final home.  Hmm.  Maybe that’s why they wander...maybe they are anxious.  Anyway,  I was being shown the bedrooms, dining rooms, nurseries, activity centers, etc, when Lo Lo walked up.  She said, “I’m trying to go home.”  With her softened light blue eyes, she looked straight into mine and asked, “Would you help me?”  The aide, said, “Hello, Lo Lo.  Come with us?”  Then turned to me and asked if I minded.  I watched as Lo Lo “wandered” along with us, following the aide within 3 feet, in and out of each room.  She even turned to me and said, “I think I’ll just follow you.”  So, we both took her hand on each side and she “toured” with us.  I learned all about this precious and stately woman.  She had once been a high society corporate woman in New York.  What a transformation!  I wondered if she was a ruthless, go getter, or if she was a gentle lamb like she is now.

Anyway, as I watched her wander, I began to notice all the others wandering.  They would just walk from room to room, up and down hallways, sit for a while, then get up again and walk a little more.  Then, it hit me.  This is what Jerry does.  Up and down our stairs, in and out of my studio and onto the porch.  He is wandering.  I get it!  No, he doesn’t wander “away”, he wanders “around”.  (around me, mostly.  Ha!)

The blinders came off.  He’s like  Lo Lo.

The wandering is what these folks do when they are not engaged.  However, they can’t be engaged in an activity on a nonstop basis.  But, even if they’ve been in a room of music or card playing, when the music stops....they wander.

Speaking of wandering.  My wandering is here now and I must go “engage”.  Off to the showers.

Headed Home

We’re headed home today from a two week holiday with our kids.  Our daughter’s houses were filled with all the Christmas flair with cookies and candies at every grabbing point in the house.  The diversion of warm fuzzies was well needed but but it’s time to go home and start the new year.  I even managed to get a painting done for baby Charlie’s room.

The crazy sinus bug hit me on Friday so Jerry and I were taking a nap upstairs near baby Charley's bedroom.  I had a slight inclination that our son from California was trying to fly this way.  While sleeping, I heard the dog bark, then the bell ring when the door opened.

I snuck out of the bed and headed downstairs, and there he was.  Our dear, Mark, built like a mighty oak tree, was standing at the bottom….along with his wife who I haven't seen in 4 years. Stunned, I took a few steps down and threw my arms around him.  Mark, “Can I see dad?”    We slowly walked upstairs, Mark, slightly ahead  and then I heard wailing.  Mark and Jerry were literally wailing at the sight of each other. We all squeezed as if we couldn’t let go.   He kept saying, "You are a wonderful person, dad.  You are a wonderful person.”

Our family has been through life’s experiences just like other families.  The culmination of life’s good and bad have developed a very close kinship and we have always pulled together when times were rough.  Mark had not seen Jerry since August and his decline is very marked.  His facial expressions are now of one with dementia; kind of stone faced with confused eyes.

Mark has a way of pulling Jerry out of his “state”.  That night, he turned on the bluegrass music and we all watched and joined in with the toe tapping.  No joke.....there’s Jerry sitting in the chair, toe tapping, and three grown adults dancing a jig in front of him for entertainment.  It was the happiest time of the night.

So, we’re headed home today.  There didn’t seem to be any facility answer in Raleigh, so the search will resume in detail when we get back home.  In the meantime, we’ll take a breather or two and utilize the in home health care for a while.

How do you juggle immense sadness and joy at the same time?

It’s 2:19am on Friday, New Years Eve day. I do my best thinking in the “am” and there’s not been much sleep lately. We all know that I’ve been searching for new homes for Jerry.  I think I’ve grieved for quite some time and I’m grieving over it still.  So far I have visited 10 “homes” and have seen too much of the next stage that’s coming.  I’ve grieved because, now, when I look into Jerry’s eyes, I see a vacancy and confusion.  I want so desperately for him to know how much he is loved.  I just want to shake him and yell “I love you so much.  Do you hear me? Do you know that?”

This is killing me.

The decision to place him, in some ways, has given me relief; yet the relief has  left me with this incredible feeling of loss; this time with no return, yet not completely finished.  The emotional struggle of making the final decision is so intense.  My heart is hurting.  Yet,  while coping with the emotions of saying goodbye to the life we once knew together, other doors have been opening for me alone.  (It’s not right.)

Today, I received a request from a shop in Chapel Hill asking if I would be willing display my paintings in their store.  It was one of those “OH MY GOD” moments.  “Well, uh, yea - ah!”   Then this disbelief set in....then this overwhelming and humbling feeling .....then this sadness....One minute I’m a sniffling idiot, then I let a little squeak of excitement , then it’s back to sniffling.

It will get better in time.  “This too shall pass."

The Way It Should Work

Ok guys!  Today was another good day.  I’d say doable. Sarah, Jerry’s little helper, came  and I stayed here too.  I wrote out a  schedule that was similar to the adult daycare schedule.  Example:  10:00 exercise , 11:00 game time, 12:00 lunch  1:00 wrap presents, 2:00 nap  3:00 walk dog, etc.  At 11:00 the physical therapy assessment was done by Home Healthcare, so Sarah took part in all the events that were happening.  I wanted her to observe so that she could continue the routine on the days that the therapists do not come.  It worked great.  At times Jerry just had one person, Sarah.  At times, he had three.  We yinged and yanged perfectly all day.  Ha!

I was able to go in and out and up and down, getting bills paid, portraits finished, and even a couple of Christmas presents done.  Jerry stayed pretty much with Sarah.  I WAS HAPPY.  I told Sarah...."now this is the way it should be done.  This is the way a full time nanny should work.”  Only, Sarah only comes one day a week.

Speaking of nanny, thus “child”.  Robert reminded me the other day that Jerry was like a child.  You moms out there....remember when you had all those little ones running around?  Every time you tried to wash a dish or open the refrigerator door, that little kiddo was hanging on to your leg. You’d open the dishwasher and a baby would crawl right into it.   I’d get them all settled playing, and as soon as I went in the other room, they came tagging along.  Why I remember locking the bathroom door several times just to take a bath.  WELL, HELLOOOOO!  That’s exactly how Jerry is.  (accept he’s not running...he’s shuffling.)

Keeping that in mind has really helped my psyche.  Instead of being in denial and expecting Jerry to respond “normally”,I am reminded of how he’s not cognizant of what he is doing.  Just a child.  Just a child.  Just a thought.  By the way, I FINALLY FINISHED FULLER.

His mommie is pleased.  Whew!

Maybe an Option

Yesterday, there were two places  I wanted to visit.    The first place was actually a rehabilitation  and  skilled nursing facility.  When I arrived, I knew right off the bat this hospital like atmosphere was not the place for Jerry.  The director of nursing was my tour guide.  As we were walking I told her all about Jerry.  She stopped me in the back hall and told me that she was also a hospice nurse and has worked in every assisted living/nursing home in the county.  She could give me the low down on every one of them.  She cautioned me to watch out for the ones that were "it’s all about the money”.  Watch out for “upcharges” where I would be charged for every additional service, such as an extra 5 dollars if a meal had to be brought to the room.  She cautioned me to make sure it was adequately staffed, so that I would not have to hire and “additional” caregiver.  She gently told me, that he would eventually become a skilled nursing candidate, but not right now.  She referred me to one particular “home” that she felt was staffed adequately and where the residents were well cared for.   I visited there last summer, so that was good to know.  She also loaded me up with medicare/medicaid knowledge and different physical/occupational therapy  options.  Great!  Great information! The next place on my list wasn’t too far away.  I mentioned to the nurse where I was going next.  She said the she had never worked there, however, they often receive their patients for rehabilitation.  Every one of their residents always seemed very happy and that I should visit over there.

I drove on over to the  next facility, where it seemed very warm and friendly.  The administrator, Kathy, came out to meet me and took me into the living room where we got acquainted.  I immediately like her.  She was kind and not “salesmanlike”.  Once I told her that Jerry was only 62, she looked down in a sad way and said, “I’m not sure he would be happy here.  Most of our residents are older.”  I asked her if she’d take me on a tour anyway.  “Sure.  Of course.”  Then she took me down the hall to Gracie’s room.  The room was bright and cheery..looked just like a bedroom from home with her little side table where she sat and did her beading.  Gracie was 95 years young, dressed up in red, and after being introduced, said, “I just want you to know that I’m happy here.”.  I smiled and said, “I’m so glad to hear that.  You are the cutest thing.”  As she toured me around her room, she said, “Well, thank you, honey.  I just love to make people laugh.  Let me show you my closet.”  She was as sharp as a tack and obviously very happy living there.

Next, Kathy wanted to show me a larger room.  There, I met Pat.  Pat was sitting at her desk writing Christmas cards.  She was headed to Raleigh to see her children for the holidays.  She also was very bright and happy.  Our stories were similar in that she had to put her husband in a place in Raleigh where her children lived, while she stayed in their original home in New Bern.  He has now passed away and she now was very happy in this new “home."

I told Kathy that it was obvious that this was a good place because every resident seemed to happy and the place was full of positive energy. “Would you show me the memory care unit?”  As we walked in the memory care unit, I was pleased.  Several of the residents were off on a field trip, but one man was there.  Earl, had a demented look on his face, similar to what Jerry has occasionally.  Earl seemed happy and walked right up to me to visit.  The aide came to his side and said, “Earl.  It’s time to go to the bathroom.  Let’s go.”  Immediately, Earl began to balk.  He dug his heals in, straightened up those legs, and pulled the other way.  The aide handled it beautifully.  She turned to face him,  gently took both of his hands, and said, “Come on Earl.  Let’s go to the bathroom.”  As quickly as he resisted, he calmly said, “Ok.  Are you going with me?”  She said, “Sure, I’m going with you.”  Then off they went.

Kathy and I went to her office where she gave me the prices, told that they do take medicaid once the money runs out.  We talked about the transition and I met the male nurse who had worked there for 10 years.  I was very impressed and comfortable.  Then, in came Ivan.  Ivan was a 99 year old perky man who lived in the memory unit.  He was a retired minister and full of spunk.  He actually had just come back from a field trip and was filled with vim and vinegar.  When I shook his hand, he said, “Do I  know you?”  What’s your name.”  I said, “Sue.  I’ve heard so much about you.”  He said, “Good, I hope.”  Then he turned to Kathy and said, “What have you been telling her about me? Don’t you know I have to live up to it?”  He looked back at me and asked, “What’s your name?”  Funny.  I said, “Sue.  I  heard you read your Bible every morning.”  He said, “I sure do.  Don’t you?”  Then, he wandered on down the hall.

So..there ya have it.  At least I know there is a place where I would feel comfortable placing Jerry...if I had to.  At least there is one option so far.

Correction

Ok....so I am so confused these days I don’t even know whether I am coming or going.  Please don’t think I don’t truly appreciate the love and support of my children.  They are the best and only want what’s best for the both of us. I asked them to help me sort through some things and  they are willing to help me. What I meant by the last post...is that whatever decision is made for Jerry, I will have to be the one to live with it.  There are a whirlwind of decisions and  emotions running through my mind . With that said, I had a friend remind me that there is a difference between having 24hr/365 day a week care so I can be healthy, verses so I can have a new ME life.  Another friend said getting 24/365 care actually IS taking care of him and may even be a change for the better for him.    Oh....such confusion.

Today, the second consecutive day with just Jerry and I hunkered down in cold weather, was a tad testy.  Poor Jerry does not deserve my impatience.  We went out for a little ride and I bought a newspaper.  After our coffee and newspaper, we tidied up the house a little and I made some soup.  Things were fine.  But as the day went on, Jerry became more and more clingy.  No joke, he followed me everywhere.  I put on a great golf movie hoping he would watch.  I reminded him that “we’ve done so much work that maybe you should rest.”  He agreed, but within minutes he was up again.  I went down to finish some children’s portraits I’m working on, and every time I would turn around, there was Jerry standing behind the glass door.  I’d take him back upstairs again and get him seated.  Within 5 minutes, he was back again.  I became so frustrated that I threw my brush down and quit.  My being stressed does not help him at all.

We were suppose to go to a little cookie open house, so we went up stairs to dress.  After doing the whole toothbrush and shaving thing, I wanted him to wait for me to take a shower.  I’m sorry, but this is where I gave up.  He would not wait.  He kept standing outside the shower door and opening it.  Normally, I would have just had him come on in, but we didn’t have time for that.  ANYWAY, I didn’t even get upset.  Giving up, I just leaned against the wall and said, “would you please leave me alone?”  There ya have it....I felt so guilty after that.  So guilty!  He doesn’t deserve to have his feelings hurt.  He doesn’t understand.

I’ve really been struggling with some anger lately.  Anger that I’ve been put in this position to decide.  Anger that this disease has outlived my endurance.  Anger that this diseased has drained all our finances.   Anger that I don’t have it in me to continue.  Anger that I’m not stronger.  Anger that he is still so nice.  Anger that I am not.

Sorry.  It must be a PMS thing.  Uh, no.  It’s a little late for that.

The Buck Stops Here

I can’t believe I might devulge these thoughts to the internet world.  Is anyone else this transparent? I’ve pretty much been an independent thinker who really is not influenced by what others think.  The only thing that really matters to me is that I do not give God  a " black eye”.  Don’t know if that makes sense to you or not, but....

My son called this afternoon after a long phone call with my youngest daughter.  Evidently, the subject  of their call was ME.  We talked about the upcoming plan for Jerry’s  and  my well being.

Ok, people, I am going to be completely honest.  Evidently, my kids (and son-in-laws) are going to present me with the cold hard facts and options about our future.  My independent stubborn self is not going down without a fight.  While I truly appreciate their concern, I understand that their viewpoint is from the perspective of  a "30 something” .  I’ve been a “30 something” before.  Really, I have.  Now, you must understand that I am writing this at 7:30 on a Saturday night, with Jerry asleep by my side. We WERE watching some sappy Hallmark Christmas movie.  Let’s see...how many years have I seen these Hallmark movies? Snore!

My kids are to the point where they think I should move on with my life.   They are pretty sure that I am at the end of my rope being a full time caregiver....and I must say...they may be right.  Sniff!   I might be near the point of crying “uncle”.  I will admit....there are times that I dream of another life where I’ve moved on and started over.  I imagine being independent, free, growing, painting, traveling, and maybe...just maybe...meeting someone who can hold my hand, and carry on an intelligent conversation over a fine dining evening and even become a kindred spirit spiritually.  Ok...there, I said it.

But, dearhearts, I cannot, absolutely cannot “go there” right now.  While I have been entrusted with Jerry’s care, I must be faithful.  Oh yeah, I could say, “ I was only 19 when I married Jerry.  I didn’t know what I was doing.”  No!  A man is only as good as  his word.  (a woman also.)  That was the decision I made, and I must be faithful.  I can only imagine if the roles were reversed.  Would I want my loved one to hang in there with me?  I know I would place my security in the one who promised to stay by me.  I would only hope that my life long partner would be faithful, not dump me along the side of the road and move on.  Course, then...I would want him to be happy.  At some point, if I were completely “gone to the world” I know I would want him to be happy.  Course, I would never know it.  Oh...HOW COMPLICATED.  All I know is,   I will  come before God someday and  have to answer for what I have done with my life.  I want to live a life with  no regrets.

So many people...caring people...concerned people...have offered their help and their advice with the most loving of intentions.  But, I know the decision lies with me...the buck stops here.  I will have to be the one who signs on the dotted line, turns and walks away.  I will have to live with it and have peace in my decision.   I will have to sleep at night.  No one will have to answer for these future decisions but me.   So, in the end, there is only one that I have to answer to... no one but ONE.

Making Progress

Last night we went to a little Christmas get together with our friends from church.  These folks are a bunch of wild and friendly characters with caring hearts.  Many of them make up the JV’s (the Jerry volunteers).  The message was sent out  to these folks, asking for prayer, so many of them know I’m in the throws of a need for change.  (I sound like Obama).  Anyway, with a tinge of sadness, I’m sure they question why I’m “putting Jerry away”.  First of all, let me assure EVERYONE reading this that I am NOT putting Jerry anywhere where I  am not  confident he would be happy.  Never!  Second, this is not happening tomorrow, but I have a feeling (like it or not) that it may be a reality sooner than later.  Knowing that, I’d better be prepared. One precious person asked why I didn’t use the JV’s more, since they are willing to help.  To tell you the truth there are a couple of reasons.  One is that I am having a hard time scheduling paid workers and volunteers.  Another is my own reluctancy.  I see Jerry is getting harder and harder to understand and his needs are getting greater, so I feel a little afraid that some JV’s may have bitten off more than they can chew.  That may totally be generated by my own fear and imagination.  One other thing is that Jerry may not even know who in the world is taking him.   Actually, the only time I have not used the JV’s is when we’ve been out of town or a JV has been sick.  They have been perfect.

The truth is that Jerry requires a team of people...even at one time.  Let me give you an example;  the party last night.  When we entered the room, Jerry immediately had a deluge of men who came up to him and “took him over” with greetings, back pats and guy talk.  I probably didn’t even see him for 10 minutes.  One person got him seated and brought him a plate.  Another brought him a drink.  Someone else came to tell him a joke.  That’s 3 people right there.  Ya see?

Jerry was all smiles the entire night.  There was a meal, a gift exchange and then some caroling.  During the gift exchange, Jerry was completely entertained and even was encouraged and assisted when opening his present.  He basked in the attention brought to him.  Then, during the singing, Jerry actually looked at me with weepy eyes and said, “I did it.”...  meaning he remembered the words to the song.  He desperately wants to remain “in the game."

The events of last night were actually an example of how a good daycare should be.  Love, attention, structure, continuous activity.  Even the most well intentioned person cannot do that alone.  That is our dilemma.  There are no daycares in this area.

A note of progress, however....yesterday I said I was taking a break from Alzheimer world.  I lied.  I received some good news from a great male nurse with hospice.  While Jerry does not qualify for hospice yet, this nurse was also very involved with the "home health care" division.  He suggested I get a referral from our doctor for occupational and physical therapy.  They will do muscle strengthening on his arm and also his walk  (hopefully to avoid any falls) and the occupational therapist can work on his eating.  We've done this before, but this time, since I'll be using these services, I can have a CNA also to shower and dress Jerry.  So that's three services .....all paid for my medicare.  This is only a short term fix, but any "fix" I'll take it.  We'll get the evaluation in early January, the maybe that can hold us over for the next few months.

We’re making progress.

Real Quick

Jerry and John just left the house a few minutes ago.  Today is the first day I’ve had to myself  in my own house in weeks.  I’m just all giddy about it! I am officially taking the day off of researching and blogging.  (Accept this one.)

Just a quick bit of good news.  After getting Jerry dressed this morning, I was feeling a bit tired.  ALREADY.  (remember, I was writing the previous blog at 3:30am.)  Jerry was fairly perky, so I asked, “Jerry, how would you feel if I brought someone in to get you showered and dressed everyday?” I reminded him that his brother, Jimmy, had someone in to get his mother bathed and dressed.  Jerry, said, “I guess so.”  I tried not to get TOO EXCITED, but calmly asked, “Do you want a girl or a guy?  I know, if you it’s a girl, you want it to be a pretty one.”  He didn’t get it.  Anyway, I asked, “Does it matter to you if it’s a girl or a guy?”  He said, “no.”

SO YIPPI!  I know he won’t remember the conversation, but I will gently remind him from time to time.

I’m taking this as a YES.  YES!  YES!

New Website Info

This has been happening a lot lately.  Waking up at 3:30am , I mean.  I’ve discovered that it’s better for me to come blog and put my thoughts down on “paper” than to have them running around in my head.  It amazes me how the brain works (or does not work). Tonight, one of my friend’s from Chapel Hill called to check on me.  You know how girls are, sometimes.....a bit silly.  She is now “nurse Ratchet” caring for her husband who is recovering from hip surgery and was resting under the comfort of her new electric blanket.   She seemed relieved to hear my voice, that I wasn’t all downtrodden and tired, but was upbeat.  Whew!  I told her that I had begun a “fasting/detox” regimen so that my mind would be clear while I was in this decision making process.  However, as we talked, I would run out of breath in the middle of a syllable.  I told her since I wasn’t taking my allergy medications that now I am wheezing.  We began laughing so hard and talking so funny about how my detox was making me sick.  Go figure!

While researching tonight, I decided to check out Hospice services.  I never really knew that much about hospice but had only heard good and wonderful things about it.  Early last year, a hospice representative came to my house and presented information.  At the time, I decided that Jerry was not ready for that.  Tonight’s internet perusing brought me to several websites that I’d like to share with you.  I wish I had known about these in the earlier in the earlier Alzheimer days.

1. www.helpguide.org     This website provides a plethora of information on mental and emotional health, family relationships, healthful living, and seniors and aging.  The senior/aging menu takes you to caregiving and housing, caregiver burnout, respite, end of life and much more.  More helpful information than one can read in one night.

2. www.nhpco.org  The National Hospice and Palliative Care Organization.  Click on Learn about End of Life Care.  This will take you to Caring Connections.  Under caring connections is more than you’ll ever want to know about safety, organization, decision making, quality of life, more and more again.

I didn’t realize that Hospice can be a business for profit or nonprofit.  I’m a little sketchy about the “profit” ones.  So, I’ve found the only non-profit hospice in our county is through our local hospital.  On their website it shows that Alzheimers is included under covered diseases.  There IS that question of the “less than 6 months to live”, however, the last agent said that we did qualify as long as Jerry was not improving.  I’ll check that out tomorrow.

3.  www.aarp.org   Check out their caregiver resource center.  Read about “Loving dad until the end.  AND  Lessons in Love and Loss.  CBS News Corespondent Barry Peterson’s story on his journey, caring for his wife with Early Onset Alzheimer disease.  There is also a “Prepare to Care” planning guide to download for family and friends.

4. www.longtermcareliving.com  This website is sponsored by the American Health Care Association and the National Center for Assisted Living.  It offers information regarding advanced preparation, coping with transition, paying for long term care and additional resources.

Well, that’s enough for today.  Is it morning yet?  Nope, it’s still dark outside.  Maybe I can get another hour of sleep in before I get up.

PS.  Notice there has not been any painting lately.  I desperately need to.

Still Processing

The thought of moving Jerry is still a huge reservation for me.  I mean moving him to Raleigh, just to go to a daycare...just to avoid a full time facility.  Taking him away from the friends he has now and life as he knows it, I think, will send him into a tailspin.  A tailspin will surely send him into a full time place. Last night, we had dinner with our friends, Bruce and Nancy.  Remember Nancy went with me to look at places.  Bruce is the SAINT who volunteers every Monday to “hang” with Jerry.  No one knows Jerry better that Bruce.  (accept Robert)  Last night was just like any other time with another couple.  Everyone was comfortable, funny, and Jerry was in his confused but “with it”  state.  Bruce knows just how to direct him.  We were opening presents and Jerry was coaxed into the living room to open his.  Perfectly simple gifts.  While Jerry didn’t know what to do with the packages, Bruce kept coaxing him to open them.  A white chocolate candy bar.  That was the perfect present for him?  Then he got  open another.  It became a cute project to watch him open the second and the third.  The second being another chocolate candy bar.   Jerry can’t have too much chocolate, you know.

My mouth was running ninety miles a minute.  Bruce knows how to ask questions of me that set me off and running on a 15 minute trail of chatter.  Jerry delighted in the whole evening.

Now, how can I take him away from that !

We’re doing a day trip down to Southport today to check on the gallery.

HONESTLY! Can’t Cry All the Time....

Thought I give you all a good laugh. After one of my blog writing sessions, I had blogged myself right into a depression.  Ah, it felt so good!  Now that that was all out of me....I went upstairs to get Jerry ready for bed.  He was on the bed, fully clothed asleep.  When I walked into the room, I bounced on over to him and said, “Come on, let’s get out jammies on.”  I tugged on him and pulled him up.  As I pulled  his sweatshirt over the back of his head, I brought it forward.   Then, I put my head inside with his and brought it over both of our heads.   He laughed...I laughed.  I said, “It’s dark in here.  Oooooo, you “stank”.  He said...."You stank too."

Good smiles to sleep on.

Revelation

At 3:30am, I awoke finding myself wedged between the cushy softness of our bed and the warm back of my sweet husband, Jerry.  For months, now, I’ve been asking God what he wants of me.  Since the age of 29, I’ve either been in the throws of  dying parents, the heartbreak of a rebellious child, and now, the 12 year long agonizing  death of a young beautiful husband.  I said, “Lord, I’m tired. What do you want from me?” As I pondered, I kept hearing the thoughts, “ I don’t want anything FROM you.  I want YOU.”  I thought, “Lord.  I want my life  to be a gift to you.  I don’t want to look like some kind of martyr or hero.  I don’t want attention brought to me that I’m some wonderful, sacrificial wife.  I want whatever happens to show others who YOU are.  I am ready to give up my home.  I am ready to give up all that I have.”

My eyes were open and they were not going to close.  I snuck out of the bed, put on a robe, and went downstairs to read.  I thought of how much I have grown to love this place and it had been the first time in my life that I had truly been in love with where I was in my life.  But, with the changes coming regarding Jerry’s care, it’s silly to try to hang on to material things.  Why am I doing that anyway?

I picked up David Platt’s book, Radical and began reading about how Jesus required abandonment of our own lives to follow  him.  Nothing is to be of more importance.  Maybe it’s taken Jerry’s illness to get me to this point.  I always thought I had felt that way, but I suppose now is where the rubber meets the road.

It seems our lives have been focused on building our “American Dream”.  We began in our little $200 a month apartment with a card table for a kitchen table and milk crates and boards for our bookshelves.  We’ve climbed the coorporate ladder, moved from home to bigger homes, educated and raised 3 successful children and are now watching them build their "American Dream”.  I suppose that’s what we’re engrained with in this society.  To succeed. To accomplish.  To acquire.  The possibility of losing all that we’ve accomplished is probably  why Jerry was so in need of edification the other night about doing a good job caring for his family.  It was his self worth.  He desperately needed to know.  Now, he is about to lose everything.  Not just a physical illness to death, but he is going to lose his life as he’s known it and his mind.

As I am watching and waiting, I can’t help but be even more convicted that there is more.  And that the “more” requires giving up life as we’ve known it.  That is what Jesus was saying.  Jesus gave it all and so must I.  Jesus, however, DOES want what’s best for us but how can we know what it is, if we’ve not trusted him.  He promises eternal treasures that will never fade away.   What could be better than that!

So, Lord.  I’m ready.  It’s all yours.

Big Mistake

I’ve  wondered how in the world I was going to make this transition as smooth as possible.  I mean, whatever we do is not going to be easy.

So, I thought, maybe I could try to appeal to Jerry as to how WE can plan OUR future.  Engage him.  We’re a TEAM. Always have been.  Always will be.  Right?  Wrong!

Poor Jerry.  I thought I’d try to test the waters tonight and see if he could vaguely understand that things are going to change.  He realizes he’s declining, in fact, cries a lot.  He also hovers over me when I’m on the computer and listens when I am on the phone.  I think he’s been suspicious that something’s up.

So, tonight, I fixed dinner (what a surprise).  Once we sat down, he began  struggling to tell me that he did a good job.  I reassured him that  “you’ve been wonderful and have taken such good care of your family.  You’re the most wonderful hubbie anyone could ever have. “  He was happy to hear that.   I, then,  reminded him that we are in this together and that we have been a team for 39 years and will always be here for each other.   But, since he’s having a little more trouble these days, I need help.  He started to cry.  I asked him how he felt about going to Raleigh for a little while.  We could “travel" (to Raleigh)...just he,  I and "the dog".  Then,he began trying desperately to talk or explain.  The harder he tried, the more confused he became. The more confused he became, the more he cried.   As much as I tried to be patient and listen....stroke his hand to calm him....it became evident to me that trying to involve him in this decision was a big mistake.

I remained calm but would occasionally attempt to say something funny or lighthearted.  Then, I gave up.  I calmly got up and started clearing the dishes and he stomped up the stairs.  THEN, get this......he came back down as if nothing had ever happened.  Unbelievable!   I honestly don’t think he even knew what had happened at that table.  WIthin 15 minutes he had gone from terribly upset to completely oblivious and wondering where the dog was.

So, I’m going this alone.  The decision will be mine.  In a way, it’s better.  I won’t be trying to explain or reason or convince or whatever I feel I need to do to make it a happier experience.  Its going to SUCK.  (I can’t believe I just said that!)

Day Two

My dear friend, Nancy, came with me today for day two.  It was good to be with her so that we could bounce ideas off of each other and write down pros and cons.  She is more objective and able to see what’s  good for the both of us and not only Jerry.  Sarah had Jerry and was suppose to take him to the senior resource center in Morehead city.  Jerry has balked at that in the past, but I thought he’d cooperate with her.  Turns out, she said, that he was very anxious that she was going to leave him.  UH OH! Nancy and I came armed with my computer, note pads, and drinks.  (non alcoholic, of course)  (Not until 5:00)  As an aside, I’ve decided to go on a “fast” until this is resolved.  Not a big legalistic fast, but a fast from toxins, medications, alcohol, etc.  Mostly liquid.  I am just trying to be as clear headed and focused as  possible.

We made it to the first place by noon.  I’ve visited this facility before, and I was pretty impressed.  It was clean, friendly, and the memory care unit was small and intimate.  Every bedroom was private and homey.  There were lots of windows and a small courtyard.  Montana would also be able to visit.  The TV room felt like family room.  A year ago, when I visited there, I didn’t feel Jerry was ready for it.  I still don’t.  Even though I was very pleased with the personnel, I felt the residents were not a good fit.  There was only one little gentleman, who I think Jerry would have liked.  But the rest of the residents were elderly women.  Very elderly and very far advanced.  This is still an option, though, for a future time.

Nancy concluded that it looked like things were leaning toward going back to Raleigh.  TEMPORARILY.  No permanent decision right now.  We both felt Jerry was not ready for full time residency yet. HOWEVER, that could change in six months.  Who knows?  To go back to Raleigh would be quite a task.  I’d need to rent my house here and rent one there.  That means moving logistics.     She was also concerned that since I would be so close to my grandkids, and there are 4 of them (almost 5), that I would be trading babysitting Jerry for babysitting grandkids.   She stressed the importance of my being in an environment where I would be inspired to create.  She offered two very important suggestions.

1.  When we go for the holidays, Jerry needs to go to the daycare everyday to see how he responds.  There’s no sense in completely changing my entire life, if Jerry won’t go.  What if he digs in his heals,  becomes obstinate and completely refuses to go without a fight.  Honestly, this could happen.

2.  I must have a conversation with my girls and set boundaries about grandchildren.  She said, after this transition, I probably won’t be good for anybody for a while and will need to be able to adjust.  Also, this would be a time to further my art venture, focus, and work.  A time for me to bloom without Jerry.  Besides, I will need to be able to bring in an income.

By the time, we came home, we both concluded that his entire journey is one big can of worms.  Worms all twisted together.  The more you learn, the more convoluted things get.  AND...there is no perfect answer because each dementia patient has different needs, different personalities, different physical needs.  Now...how do I approach Jerry with all of this to get the best results.  That’s next.