Well, That Didn't Last Long

He's been home for 6 hours and I am already going nuts.  Where's the great caregiver? Flew right out the window.  Just regular old Terry is left.  Oh, I was good and didn't yell at him for taking 2 1/2 hours to prepare to walk our dog on our 0.25 acre of land.  Nope, I sure didn't.  I didn't even yell at him when he packed more gear in his black bag for a 15 minute walk around the yard than some people pack for a month on the Appalachian Trail.

You have NO idea how badly I wanted to shout "Get the hell out of the house for pity's sake!  Just walk the dog so we can go back to watching our movie!"  Yup, rented a movie on Xfinity for $3.99.  Got to see about 7 minutes of it.

The "Great Caregiver" has left the building.  Grumpy Cat Terry is going to bed.

It's Show Time, Folks!

Calvin is home. It's showtime!  Time for me to step up as a caregiver!  So, why do I feel so hesitant?  I received wonderful instruction today from a day-long seminar with Teepa Snow, who has been working with people with dementia for over 36 years.  Her seminar provided so much insight that I can officially say that my mind was blown and Teepa's instruction has helped me to see Calvin in a different light.

So now I am the one responsible for Calvin's care.  That is an incredible responsibility.  Perhaps calling it "showtime" seems frivolous.  Please know, gentle reader, that I use humor to try and cope with difficult situations and challenges.  I have been doing that since I was a child.  There are times where people misunderstand and thing that I am trivializing the situation.  Always know that I take this responsibility, this sacred trust, very seriously.  I spoke vows before the altar of God twice, promising to care for Calvin in sickness and in health.  As a devout Catholic, that is some serious stuff to me.

But, I can do the job with a smile and some laughter in my voice.  And for Suzy, who was my partner at the seminar today, I can do with with my right amygdala by my side.  *grin*

Hooray and Oh, No!

Calvin is being discharged from the dementia unit of the hospital today.  I just received the call less than 6 hours before discharge time.  I have missed Calvin so much.  I love him so much.  I am so excited that he will be home.  Kruger, the dog, and all the cats will be so happy to see Daddy.

I am so scared that Calvin is coming home.  I don't have home health care completely in place yet.  The house is not all clean like I wanted it.  I have been on the phone with the insurance company, home health agencies, Calvin's mother, just to try to get things in order.  I am afraid that Calvin will get himself into trouble. 

I admit that I will miss the quiet evenings to myself when I could watch what I wanted to on T.V., play on the computer, crochet, all the things I enjoy doing.  Perhaps that sounds selfish.  But, imagine having to work 24 hours a day.  In the morning, I have to make sure Calvin is either at his mother's or his home health aide is there.  Then, I have to go to work, wondering if I will get multiple phone calls from Calvin.  I come home and the home health aide leaves.  Calvin's care is completely up to me at that point.  I need to cook dinner, clean up from dinner, do the cat boxes and any other chores, all the while taking care of Calvin's needs.  When I say my prayers before bed, I know that I might very well be woken up during the night because Calvin might pull some weirdness, like going out for a walk at 1:00am.

I am so delighted and so scared that Calvin is coming home.

Fortune Cookie Truth

This is just a short one today.  I had a wonderful visit from my dear friends Karla and Mike.  My daughters came and visited my husband at the hospital.  My husband seems to be doing better.

I picked up some sweet & sour chicken from China Garden on my way home from the hospital.  After munching some for dinner (and having enough for lunch and dinner tomorrow!), I decided to eat my fortune cookie.

Here was my fortune:  "You will always be surrounded by good friends." So true! So true!

Blessed be God.  Blessed be God forever!

How aboooooooooooouuuuuuuuuut No.

Sometimes, the body is wiser than the mind.  Today, I was all prepared to do dishes, clean up the library, start in Kruger's room (yes, our dog as a bedroom.  don't judge me. *grin) and go to visit Calvin.

My sciatica was so bad that I couldn't get out of bed.  My daughters had come over last night and helped me with the cat boxes last night, so I couldn't imagine why my back was acting up.  In tears, I called Calvin and told him I couldn't come to see him.  I feel so guilty!  Calvin was fine, but I felt bad.

However, I began to ponder as I was laying in bed that my body is being wise.  It knows that I need to rest.  I have pretty much stayed in the air conditioning, resting.  I did get the dishes done.  I shouldn't have but I did.

Gentle readers, I am feeling better than I did yesterday.  It goes to prove that if you listen to Grumpy Cat, you can't go wrong!

Our Lady of Sorrows, Please Pray For Me

Our Lady of Sorrows, please pray for me.  I thought making the decision to put my husband in a dementia psychiatric unit would be hard.  But this, this, oh my God!

The door slammed and locked as we entered the unit.  The first sound I heard was an old woman wailing: "I'm alone!  I don't want to be alone! Why did they leave me here!"  My heart wrenched.

A man sitting in a recliner fighting a lone overworked nurse struggling to get an I.V. into him, while bored nurses aides look on, completely immune to the nurse's distress and pleas for assistance.

My husband is finally led into a room and told to change into scrubs.  He does so.  He looks into my eyes with a cocktail of terror and fury running across his face.  "Are you really going to leave me here?" "Yes." I answer softly.

Oh my God, what have I done?  

Our Lady of Sorrows, please pray for me!

I gotta do WHAT?

This morning, I rummaged around for a clean glass to drink my juice out of.  I realized that I have a small pyramid of dishes in the sink.  I opened the refrigerator to get my juice and a bizarre miasma wafted out.  I realized that tonight is trash night.  I have to do the dishes, clean the cat boxes and clean the refrigerator TONIGHT!

Now, gentle readers, you are probably thinking, "well, big deal."  Am I right?  It is a big deal.  I have had a househusband for almost 27 years.  I have always been very grateful for what he does but now he is not there to do it.  It falls to me and it's an impressive amount of work! 

Amazingly enough, at age 56 going on 57, I have never lived by myself.  In my adult life, I have lived with roommates, lived in a single room in a dorm (that does not count as living by myself), lived with my first husband, lived with my son, lived with Calvin and my family but never by myself.  I talk to Kruger and the cats a lot.  I will just have to get to used to it, I suppose.

Time to grow up, I guess.

Making THE Decision

Today I made THE decision and agreed to have Calvin moved to the hospital's dementia unit.  My mother would have been proud of me.  I made the decision without flinching and without tears because I knew that Calvin would get the help he needs and I would be safe.  My mother and my maternal grandmother had this ability to face terrible situations and make the decisions needed, sometimes almost dispassionately, never showing the raging inferno inside.

Please don't misunderstand, Calvin and I both collapsed into tears when the doctor left.  I could not begin to tell you all how much I love Calvin.  I cannot even explain it myself.  There is something mystical and sacred about what Calvin and I share.  I think even trying to describe it would almost be sacrilegious.  Does that make sense?  Hell, I don't know.  I am not sure if most of what I write to you all makes sense.  But, I open my heart to you all, my beloved family and friends and to you, gentle reader, who might have stumbled on to my blog while researching C.T.E., quaking in fear at what you are finding.  Take courage, if you truly love the person who has C.T.E. and are in the position to have to make THE decision, you will be given the courage to do it out of sheer love.

This song was running through my head as I was listening to the doctor explain what was required and the decision I had to make:

 
Later, I was driving home with tears cascading from my eyes.  As I drove home, the wind blew them dry.  Even though this song is written for someone who has ended their relationship, much of it rang true in my heart.  The house is strangely quiet.  I don't know how I am going to use my time.  I know I have lots of housework to do, but for now, I will sleep and find courage to face tomorrow.

Good night family, friends and gentle readers.

Removing Rocks

I've had a couple people say that I am not walking this valley alone, that I have many people supporting me.  I do, but please let me explain gentle friends.

Every decision I make, I live with.  I sleep with it, I awake with it.  In the dark of the night, I weep bitterly with Kruger and my kitties as company.  I attempt to keep the house.  I haul the heavy trash cans out by myself..  I figure out how to pay the bills by myself.

So, walking this valley is like walking with a massive sack of rocks on my back.  Each rock is a pain or a challenge.  It is so heavy. The valley is lined with my family and friends.  Each of you reach into the sack of rocks, take one out, and throw it away.  My sack is lighter.  I can lift up my head.  I can walk with more of a spring in my step.

And so many of you, more than I can even count, reach into my sack and remove the rocks of fear, anxiety, loneliness, despair by your prayers, your phone calls, your notes on Facebook, the food gifts, the financial help, the practical around-the-house help, the laughter and the hugs.  Each day, I stand straighter.  I walk the valley with more confidence.  I make the plans with more determination.  I face each day with more hope.

You, my dearest family and friends, make this all bearable.  You are all my heart.  You really are.  "Thank you" does not seem to be enough to say.  Please know that I treasure all of you and all the hope you give me.

Grace Amidst Despair

This evening I went to the hospital to find Calvin writhing in his hospital bed, completely restrained, with no I.V. fluids and no one checking on him.  I knew no one had been in there because his rump was dirty.

He does not eat.  He does not drink.  He has completely lost touch with reality.  My heart has been shattered into billions of brittle shards of despair.  Will he live?  I don't know.  I have no idea what is going on.  He twists like a captured animal and speaks a combination of English and Who-Knows-What, usually barking out commands for our dog Kruger.  No one from the nursing staff ventures near.  No one checks on him.  He suffers in a dark room.  I will be there all day tomorrow.  I will begin to make arrangements to have him transferred to another facility.

In the midst of this spirit-numbing despair, I received a visit from Father David Mary (Engo) of Our Lady of Sorrows, Brother Pio Maria of Our Lady, Co-Redemptrix and Brother Bonaventure Maria of Our Lady Spouse of Saint Joseph of the Franciscan Friars Minor.  I had called Father David Mary and asked him to come and pray over Calvin.  He came prepared to perform the Sacrament of the Anointing of the Sick with Viaticum, which is also called the Last Rites.  It is a beautiful sacrament of hope and healing.  I don't think that Calvin is going to die but I think we are in for a very long haul.  And, if it is his time, Calvin's soul is prepared to meet the Lord because he has been forgiven of all his sins.  Anything Calvin does now is not a sin because his mind is so ravaged, it is almost like the mind of a child.  I look in his eyes and I do not see the man I married.  But, even in this state, I love him.  Calvin is my sun in the morning and my moon at night.  Because I do love him, I will fulfill my vows taken before the altar of God that I will care for him in sickness and in health.

The beauties of the grace of the Sacrament of the Anointing of the Sick gave my soul peace, but I don't think it will heal my splintered heart.

Here is Father David Mary preaching.  He's a wonderful priest and a good friend.  I thank God for him.

 

Mr. Asshole

Hello gentle friends, if profanity offends you, please skip to another post.  You've been warned.

Give credit where credit is due:  the inspiration for this post came from my eldest sister Lisa Rainsong.

Calvin is in the hospital because he is dehydrated, had acute renal failure and is having a bad reaction to his new medications.  Today, I arrived to find him in restraints because he had been combative over the night.  I tried to be sweet, loving, supportive, hell - I even sang to him.

My husband was no longer there.  He was replaced by Mr. Asshole.  He will not eat.  He kicked a respiratory therapist so now he is in 4 point (hands and feet) restraints.  I spent part of the afternoon in tears, repeatedly apologizing to the staff and feeling like a failure.

I stumbled across this song.  I love my husband with all my heart.  I have given him 2 children and 28 years of my life but baby, this gem is for you:  Asshole

Love, your wife who is not a damn failure. See you in the morning, baby.

Listen To Your Heart & Your Intuition

Listen to your heart and your intuition.  That was my big lesson today.  Last night was rough, really rough.  Instead of going into detail about that, I'll just say that Calvin was pretty confused and unresponsive.  It was bad.  I got to bed at 4:00 am, got up at 7:00 am long enough to hand my boss a great big bucket of "Nope" when it came to showing up to work today.  After much pleading and cajoling, I got Calvin to come to bed.  I woke up to find Calvin in the backyard in nothing but his underwear.  I know you laughed right then and there and you might feel a little guilty about that because I was so burned out that I was not one drop of amused.  But it's okay that you laughed because, in hindsight, it's pretty funny.

After an hour of frustration and effort, I got Calvin dressed.  There was no way I was going to leave him at home alone.  I could just imagine the dizzying array of demented mischief he could get into and I really didn't want to experience it.  So, I packed him in the car and off we went.  Calvin was barely mumbling answers to questions when I asked simple things like, "what do you want to eat?"  After our first stop at Meijer's pharmacy for a prescription for me, it was off to Lowe's.  I would like to venture to a sidebar here.  Do not, and I mean DO NOT use Lowe's website for store pick-up unless you know what you are doing.  I ordered wire for a ceiling fan to be installed and what I had actually ordered was heavy enough gauge wire to install an electric range with.  D'oh!

After I was done at Lowe's, I got back into the car and looked at Calvin.  I heard a murmur inside saying "Something is wrong."  As I drove to my last stop (Walgreen's) the murmur had erupted into a molten shriek "Something is wrong with Calvin!  Get him to the hospital NOW!!!!!!!!!!!!!!!!"

So, here I am at home, alone.  Calvin was admitted into St. Joseph's Hospital with acute renal failure from dehydration and possible neuroleptic malignant syndrome which is a dramatic side effect from one of Calvin's new medications.  He was having trouble breathing, he wouldn't wake up, when he did finally wake up, he didn't know who I was and denied being married.  I know that when he gets well, he will remember who I am but tonight, I am tired, bone tired and I am going to bed.

Listen to your heart and your intuition, they will not deceive you.

Dude, Where's My Husband?

Did you know that people with C.T.E. wander?  Yeah, that was quite a revelation for me yesterday.  My first preview of this was the other night.  Calvin and I are sitting in the living room in our chairs.  Calvin is fast asleep.  Suddenly, Calvin jumps up, grabs a large dowel rod that he has been using as a cane, and announces: "I have to get to the park!"  My reply: "No, I don't think so, baby.  It is 11:30 pm and you, sir, are in nothing but your underpants."  Calvin:  "Oh, OK" retreats to his chair and falls asleep.

Pretty funny, right?  Well, last night, I'm in my chair enjoying some leftover pizza and Calvin announces that he needs to go find his cane tip.  These things do fall off so I was fine with it.  I checked out the window and saw Calvin looking around in the yard.  My mother-in-law calls.  As I am chatting with Inez, I look out the window and I don't see Calvin.  Panic- I mean hard-core-I'm-so-scared-I'm-gonna-throw-up panic.  I jump up, set my dinner down someplace safe, and hot foot it out to the car.  I start driving around our "suburban" neighborhood which is lovely by day but can get a little weird at night.  The sun is setting and there is no sign of Calvin.  I call my daughter and my daughter-in-law.  As I am talking to them, I spot Calvin.

I pull up to Calvin and ask what he is doing.  Oh friends, he looked at me with this confused look, like a lost and scared child.  "I don't know. I don't understand what I am doing."  This job of caretaker takes more ability to hide one's emotions than being a mom ever did.  You can fool a child.  If Mom isn't scared, it's OK.  But even an adult whose mind is being ravaged by dementia has enough savvy to know when we are scared.  So how do I hide my heart being torn into many small pieces by the look of fear and confusion on the face of the man I love?  I don't know.  I'm not even sure I managed it.  But I tried.  For Calvin's sake, I tried.

Now, I need a real solution to this and you, my friends, do too.  Thank God for the Alzheimer's Association.  No, this isn't a commercial, I'm sharing a solution to this problem.  The Alzheimer's Association has teamed up with MedicAlert (the medical bracelet folks) and created Safe Return for Alzheimer's (and C.T.E.) patients that wander.  If your loved one wanders off, you call the emergency number and the appropriate authorities are alerted to retrieve your loved one.  It's about the closest thing to peace of mind that we are going to get when our loved one, who is thoroughly confused and wandering alone.  I'll take that little bit of peace and gladly lay down $55.00 even though I can't really afford it.  Heck, I'll lay down the additional $35.00 to enroll myself because of my diabetes and my heart condition.  If I went down, Calvin would have no idea what to do or how to communicate with the emergency personnel.  So, for $35.00 I purchased peace of  mind for Calvin and he didn't even know it.  Here is the link for the MedicAlert + Safe Return program:  http://shop.alz.org/Care-and-Safety/MedicAlert-Alzheimers-Association-Safe-Return  While you are at the Alzheimer's Association website, be sure to check out all the cool resources.

Oh, and when I got Calvin home, safe and sound and in his chair.  I looked over at my dinner plate which I had put in a "safe place."  It was licked clean by our 125 pound pit bull Kruger.  Thanks, Kruger, you stinker.

Welcome to You Gotta Walk It By Yourself.  This is a blog that details out my journey with my husband Calvin and his diagnosis of Chronic Traumatic Encephalopathy.  Some of my posts will be about the early days while some of them will be about what is happening right now.  This blog is for my grandchildren, so hopefully they will get to know their Papaw and it is for you, the person who is scared, lonely and confused about C.T.E. and how it is impacting them and their loved one.  There are people all around that can help but the honest truth is that we have to walk this lonesome valley by ourselves.  

The title comes from an old Appalachian folk song  We sing it at my parish sometimes.  The song began to sneak into my heart as I lay in bed trying to sleep.  Some days I will be positive and full of hope and encouragement.  There will also be days that I will write about how hard all of this is and some of my audience will go "Geez, what a whiner!"  Well, that's just how it is, friends.