Venting (Oh no, here we go)

OK.  Time for a little of what I call "Vent Session".  Grab a cup of coffee, settle in your favorite chair and read on.

There are many things I have learned in the last 3 years as I have walked this journey.  I have changed into someone I never knew existed.  I have become my own person.  I have grown up.

I also have met many people in this walk.  Some I hope never to meet again.  Some I would like to have in my life going forward.

I have watched my husband go from this big strong, hard working man into a shriveled up baby.  He is crippled up.  In mind and body.

Now, here is where the "Vent Session" comes into play.

When strangers, friends and yes, even family members tell me, "Well, at least he'll be in Heaven", lately, something inside of me seems to boil over.

I have been told this for the last 3 years.  And now, finally I am going to address this issue.

Why oh why do people think that by saying that, it somehow makes it all better?  Do they not understand that in order to get to Heaven, one has to suffer and die?  Leaving loved ones here on earth to be heartbroken?

No one knows what is it like to watch someone suffer, knowing the end result will be death.  That person will die, leaving a family who have loved him.  No one, that is, unless you have walked it.

Most of these "well meaning" people have never known such a loss.  They don't think when they speak.  I know, for I used to be among them.

Yes, I have learned so much.  Going forward, when I meet someone who is going through a loss, I will comfort them, do for them what I can, make them feel not so lonely.  I will never say to them, "Well, at least he/she is in Heaven".   Please understand, while we know they are in Heaven, we, selfishly, want them here, alive and healthy.

No, that won't make it all better for them.  It won't take away the pain of losing someone.  Frankly, it'll only make it worse.  Reminding someone of their lost loved one, gone forever? 

While I am a Christian and believe in Heaven, please don't remind me that that's where husband is going.  I will be without him, my life partner.  I will be alone.  My other half gone, forever.

Boy, this journey has taken some turns, I'll tell ya. 

Marching on........................................................................................................................................... 

Whos' in charge?

Not much to report for today.  Husband continues to be in his own world. 

I did, however take him with me to Social Security.  I needed a copy of his Award Letter for our insurance at UNM Hospital.  Good thing I did.  They wouldn't of given it to me if husband were not there. 

I have been named as his Power of Attorney a few years ago.  After diagnosis.  But, Social Security does not recognize any such outside Power of Attorney.  As the lady was preparing the award letter for me, she noticed husband and his nodding off and that haunting vacant look.  She asked me if I was his representative.  I explained about having power of attorney.  She leaned over and asked husband if she could make me his rep for the future.  Of course, he nodded, not knowing what she was saying.  She prepared the paperwork. 

As she was doing so, she asked me what was wrong with husband.  I said, "Late stage Alzheimer's."  Oh, the look on her face.  She kept apologizing, I kept saying it was OK.

Then came his signature.  He just could not sign it.  Finally, she said, "Honey, just have him put an X on the line."

So, I am now his rep with Social Security.  All decisions are to be made by me.  With everything now.  His benefits, his life and his death.  Whether they should keep him alive should it get to that point.  And where he is to be buried.  Everything.

All decisions.  Funny, I don't feel so powerful.  I don't like being in charge.  It's all on my shoulders now. 

Who would like to be in charge?  It's really not as fun as it sounds.

 

Sticky situations or how to diffuse a sitcky situation!

I kept telling everyone this nice weather wouldn't last.  Wind arrived yesterday, along with cooler temperatures.  It's now windy, cloudy and cold.  Again.  Some say snow is predicted.  Lovely. 

Father in law came for a visit.  He hovers over husband now.  We talked about Jack.  A lot.

After father in law left, husband began having trouble with the here and now.  He wanted me to find out how to get into the closet and under the bed.  I stepped into the closet and got on all fours to show him how to get under the bed.  He did not believe that I could do these things.   He was unsettled.  I suggested he lie down and take a little nap.  He was having none of it.

Then, he asked me why do I feed "him".  I tried to tell him that I do not feed "him".  He said that he sees "him" eating so he knows I'm somehow sneaking food to him.  Wanting to diffuse the situation, I hollered into thin air that I was not going to feed "him" anymore.  Husband got a kick out of that one.  We sat on the bed and chuckled.

He calmed down after that.  Wanted his TV on, I turned it on and left the room. 

As I walked into the kitchen, I was glad I got through that little spell.  I do not like this at all.  But, I have to play pretend it is all a game with him.  It's the only way to get out of a sticky situation.

There will be many more to come, I know that.  But, I've learned or am in the process of learning how to get out of a sticky, uncomfortable, scary situation.

Now, this is where my acting comes into play once again.  Hollywood, Hollywood, where for art thou?

20 Dogs?

Well, I did a post yesterday morning, and when I published it, it was all screwed up.  So, I deleted it and just didn't have it in me to start all over again.  Let's try this again.

My Saturday cleaning therapy worked.  My house was screaming, "I'm too clean."  My neighbor came to visit on our porch that afternoon.  I had husband outside, he was enjoying the beautiful weather.  I was joking that my house was so clean, I didn't want to go inside.  Afraid I would dirty it.  We laughed over that.  Don't get the wrong impression of me.  My house is always clean, but this Saturday?  Why, it was, CLEAN.

I did OK.  When I thought of Jack, there was a twinge, but, every time I got that feeling, I would find something to do.  The music helped.  I sang to the oldies. 

Husband has been pleasant.  Kudos to the drugs.  Not much in the here and now, but, pleasant.

I woke up around 3 am to find husband cross ways on the bed.  He had taken all the bed covers on his side and pulled them out.  He was halfway on the bed, with the rest of his body hanging over the side of the bed.  The dog was laying beside him, concerned over husband.  You could see it in his face.

I got up, asked him what he was doing, scared a little, thinking he was hallucinating again.  He was mumbling, out of it.  I fixed the bed covers, pulled him up and told him to lie back down against his pillows.  He said, "I can't.  I can't remember how to do that.  I'm glad you woke up because I've been laying here for about 20 dogs, hoping you would wake up and help me." 

Wait.  What?  20 dogs?  Yep, you heard right.  20 dogs.  Not 20 minutes, but, 20 dogs. 

Now, let me explain something.  When I quote husband, it sounds as if his speech is perfect.  I quote him as I understand him.  His speech is slurred, jumbled and a lot of mumbles.  But, this is what I understood him to say.

I got back into bed, he started mumbling and I thought, "No, Lord, please, not tonight.  Please, let him go back to sleep."  Within minutes, he was asleep. 

I don't like the hallucinations.  They scare me.  I mean, really scare me.  I feel like a child when it happens and want to run to my mommy.  Yeah, that scary.  When he hallucinates, he doesn't know who I am.  It's not tear your house apart, violent hallucinations, it's just that he sees people and things that are not really there, and when I go to comfort him, he will say, "Who are you?"

No, I don't like the hallucinations.

A comment was asked about if I have a good support system.  Well, yes and no.  The older children work with some only having 1 day off per week.  They all call on a regular basis.  Of course they ask if I need anything, or is there something they can do.  But, as far as care giving, no, I do it on my own.

That will all end next week.  I found out that Medicare will pay for a nurse to come to the home up to 3 days per week, for 3 hours each day, at no cost to me.  I am in the process of doing all the paperwork necessary for this to happen.  I will finally get a break from this madness.

Today begins a new week.  I survived Jack leaving.  I did it and did it well!  It's OK.  I'm OK.

Without me even falling to my knees, God came in and swooped me up in his arms and Said, "I'll carry you.  Rough seas ahead."

And that, my friends, is all I could ask for!

A chapter closed yesterday.  My son is now on his way to Germany. 

We had such a wonderful time at father in law's house.  BBQ'd, laughed, told jokes, remembered old times and felt love from all around.  We took pictures.

Husband enjoyed himself.  He was smiling a lot.  Father in law noticed his eating and how sloppy he eats now.  Together, we helped him finish his meal. 

Father in law and I.  United by this monster that claimed the life of his wife, now, here we are, once again, going through it with husband.  We have a bond now, my father in law and I.  It'll never be broken.  Ever.

Father in law and I spoke about the "when it happens" thing.  He told me he would be there for me.  "Little Jack and I will take care of everything, don't worry."  He said.  As he said it, I looked at him and there in his eyes I could see that he knows now too, that husband is basically gone, and said, "There is nothing left of him, But, look at little Jack.  That's the future of our family.  That's the hope."

Yes, we have a bond now.

I was dreading the good bye stuff.  I'm not good a good bye's.  I let everyone say their final good bye's.  I wanted to be last so I could leave quickly.  As I held this man/child of mine, I cried.  Then, everyone around us cried.  Then, we laughed.  It isn't a sad time, it's a wonderful time for Jack.  It's just our hearts are breaking that he will never see his daddy again.  We all knew it, that's why we cried.  Of course, we will miss him.  I was teasing him and told him I would like an espresso set from Germany. 

Thus, a new chapter begins for me today.  I am feeling OK.  When I think about Jack, there is a twinge, but, I think more of excitement for him.  The beginning of his life.  His travels. 

Today I will turn on my TV to the music station.  I will listen to the Golden Oldies.  I will hear songs popular when I was a child.  I will remember.  I will clean house.  My heart will swell with pride when I dare think about Jack.  I may shed a few tears.  My house will sparkle and shine.  My husband will be in his own world.  I will pat him on the head, give him a kiss on his forehead.  I will bathe him, dress him.  I will sing to the oldies while doing so.

I'm in a good place today.  Funny how God works.  How He has comforted me in this dark hour.  When I thought I would crumble and fall, He has restored me.

It's OK.  It's really OK.

Therapy

Jack leaves tomorrow for Germany.  Early.  Tyler is taking him to the airport.  We are spending the day at father in law's house.  Our last family gathering. 

Bittersweet.

Jack took us out for a late lunch, early dinner yesterday.  As we were eating, Jack and I were talking about husband.  There he sat across from us, in complete oblivion, eating.  His food was falling from his hands, back onto his plate.  He would try to pick up his burger, only to have it fall apart.  I would put it back together for him.  He never noticed.

After doing this, I looked at Jack and said, "You know, honey, this is it.  When he goes, I hope you will come home."  "Of course, Mom.  I'll give you instructions on how to call the Red Cross." 

With that, we finished our meal.

There it is.  A conversation I thought would never happened, happened. 

My, he's grown into a fine young man. 

Husband continues in his own world.  Pleasant.  But just not there anymore.  I hope he is happy in his world.  I hope he feels love and is comfortable wherever he is at.

I did my laundry yesterday.  Saving house cleaning for tomorrow.  Going to scrub everything.  Even if it doesn't need cleaning, it's getting a good scrubbing. 

All the while thinking, "My husband is dying, my son is on a plane bound for Germany".

It'll be good for me, this scrubbing.  Therapy. 

Yes, that's what I'll do.

A new day, a new dawn

I've had to take some time to reflect, to think, to plan, to make some kind of sense out of all of this nonsense.

Sunday, a day of rejoicing that our Savior had risen should of been filled with joy.  It was a very dark day in my house.

I took husband to his Dr appointment on Monday.  We had been there two months previous, and, here we were again.  Where in the past, we were going every six months, since December, this was our third trip to see the Dr.

Dr A was shocked at the sight of husband.  It was so obvious by the look on his face as he talked and examined husband.  When he was finished, he sat down, shook his head and began talking with me.  Husband was about 2 feet away from us. 

Once he sat down, I said, "Well?"  Shaking his head, he said, "He has entered the unknown world of
Alzheimer's.  Basically, he's gone, with a few small sparks of reality, he's gone."  I knew it,  I was right.  Why oh why do I have to be right?

Dr continues on, "By the look on your face, this has taken a toll on you.  There is nothing we can do for him anymore but up his medication, to keep him comfortable.  You have to start planning the rest of your life."

As he said this, he looked so sad.  I had never seen him this way.  He looked, well, human.

All the while we were talking, there sat husband, not 2 feet from us and he never heard a word, or, did not understand anything we were saying.  No reaction, no response.  Nothing.

I requested that we up his Zoloft.  Dr agreed.  We will keep him on the anti-psychotic as well.

Now, with the increase in his Zoloft, husband has been very pleasant.  It's doing it's job.  He is not in touch with reality much, but, pleasant just the same.  I'll take pleasant.  After last week, yes, pleasant please.

And me?  I have been very sad.  But, in this process, I am doing what the Dr ordered.  Planning the rest of my life.  I don't know what I'll do or where I'll go.  I'm thinking about it.  While I am sad, very sad, I feel something inside of me beginning.  Something that has been dormant for 3 years.

Reinvention of someone.  Me.

I've been on this journey far too long.  As Dr A said, it's now ending.  I am left with what I am left with.

Don't cry for us.  We've had a good life.  We've had our ups and downs, good times and bad.  But, we have always been together.  It's ok.  I have been holding my breath far too long, waiting for these words to be spoken.  Now it's out in the open.  Who knows how long he has?  Dr said 8 months, 12 tops.  OK, I understand, got it.

I am going to be OK.  I have my moments where I begin to panic, but, it goes away quickly. 

So, my friends, today is the beginning of the rest of my life.