January 7, 2010 – EVERY DAY IS A MYSTERY

01/07/2010

(Real-time Entry)

As if on a mission, I drove back to the nursing home and explained to Dad (like I had promised myself) that he isn’t crazy, he’s right, he isn’t at home, that it’s understandable he’s confused, that he’s safe, and that he isn’t alone.  This conversation took place just before his bedtime and so he wasn’t able to comprehend it all, probably somewhat based on the Alzheimer’s itself and somewhat based on the fact that nighttime is when his brain power is the lowest. 

My brother Todd was with me and together we lovingly explained to him, Just like you’ve had LOTS of homes in your lifetime (we listed 8-10 childhood homes, Air Force bases and marital homes), now this is your NEW home! (delivered with lots of smiles and excitement!)  He said softly, It is?  He asked why.  I explained to him that he has a disease called Alzheimer’s and it plays tricks on his brain and with his memories and that he needs some extra help throughout his day.  This made him cry.  He said he didn’t understand why he had to be in “this place”.  Todd and I explained that we all have jobs we have to go to during the day and, because we would NEVER leave him alone, we found some wonderful people who can take care of him while we’re at work.   He said Okay through his tears.  Brilliantly, Todd then explained to Dad that, just like a magic trick, if we weren’t here, in just a little while… you never know when… ABRACADABRA – POOF! we’ll appear!  This made Dad laugh simultaneously while crying.  I said, You know what the MOST exciting part is?!  Dad said, What?  I said, You have your VERY OWN bedroom… with a brand new bed – and a DRESSER!!!  He half-chuckled and said that was very generous.  I asked him if he wanted to see his new bed and have Todd and JoJo tuck him in it.  He said okay and followed us in the bedroom while holding our hands.

Through tears and confusion, we got him into bed, tucked him in, and I explained to him one last time, Now, Daddy, remember… when you wake up in the morning, we won’t be here.  You’ll probably get up, get showered, get dressed and maybe even have breakfast and then all of a sudden, POOF! we’ll be here!  He asked what WE were now going to do.  Todd said, Well, I’m going to go home to MY house and get into MY bed.  And Joleen is going to go to HER house and get into HER bed.  And you’re here at YOUR house and we just tucked you into YOUR bed!  🙂  I explained one more time that we wouldn’t be here when he woke up but that it would be okay and we would arrive like a magic trick really soon!  He said, And then what will we do?  And I said, We’ll PLAY A-L-L day!  We’ll spend the whole entire day together and have adventures and do anything we want, and it’ll be GREAT!  With that, we kissed him goodnight, turned out his light, wished him sweet dreams, and walked out praying for the best.

That was 3 nights ago.  Dad has told me numerous times since then how confused and afraid he is, how he doesn’t understand why he’s “here”, and he has asked me if I understand what’s going on.  I keep telling him in a very gentle voice that he has Alzheimer’s and just needs a little extra help with things, like sometimes finding the bathroom or cooking food to eat, and that here he will ALWAYS be safe and taken care of, even when we have to go to work.  He once asked what HIS job is, and I told him it is to stay here, be strong, believe in God, remember we love him, and to try to find peace.

Two days ago after trying to preoccupy him during the day with ‘50s and ‘60s songs from the jukebox, I finally suggested we take a time out and I led him to a quiet room with gauze curtains for a door, a rocking chair, soft lights and a CD player.  I put in an audio CD of Sunday’s church service which he hadn’t attended.  His last church service at his beloved Renaissance Unity Church in Warren was on Christmas Eve, a week before coming here.  In the rocking chair he closed his eyes, and I explained whose voices he was hearing on the CD while he responded softly, Yes, I know, thank you.  I recognize that.  About 5 minutes into the CD, the most amazing thing happened.  My dad opened his eyes, found me sitting next to him, looked me deeply in my eyes, and whispered softly but intensely, THANK YOU.  He closed his eyes again and I held his hand for the next 40 minutes and he went the whole time without crying.  It’s funny, everyone’s been so busy trying to distract him, amuse him, cheer him up and keep him busy, that I think we’ve all mistakenly forgotten to give him access to his faith and the quiet space to go deep into his spirituality.  I hope this is something that calms his mind every day from now on.

That night after dinner, we scrapbooked a photo shadowbox to hang outside Dad’s new bedroom.  We made it in front of him, hung it for him to see, and explained that it will help him find his room.  I told him that this new house didn’t feel like a home yet because it was missing an essential element – pictures on the walls!  He seemed to like that idea and the next day we hung over a dozen framed photos throughout his bedroom.  This way, instead of waking up afraid among four plain white walls, maybe it will seem homier and he’ll recognize some of the images and be reassured.  He awoke yesterday morning and then again yesterday from his afternoon nap and didn’t seem as afraid.  Then, Mom and I put him to bed last night and for the first it was without tears in his eyes.  It was a better day!  However, a checkup phone call at midnight informed us that he was back up, confused and sitting in front of the TV.  My poor Daddy-O is SO tired!  He has had so many sleepless nights back-to-back and yet he can’t sleep!  This must just add to his exhaustion and confusion.  Mom was put on the phone and Dad told her in a very tired, soft, dejected and defeated voice, Frances, I just don’t know what I’m doing here…  She lovingly told him that he had to get some sleep because his grandson Frankie was coming in the morning to play with him and he needed his energy.  He said okay but you could tell he hadn’t budged from that couch.  Mom then told him to go lie back in bed, close his eyes and meditate and think about God.  He said okay and hung up.  A half hour later we were told he was back in bed.

But the poor guy is living a hell on earth.  Every single time he awakes he has to figure out his surroundings all over again.  He has to understand where he is, why he’s there, who these people are, why no familiar faces are around, and sometimes he also starts wondering what he’s done to be stuck here and to deserve this treatment. It’s worse than the movies Ground Hog’s Day or Fifty First Dates.  It truly is a frightening, undignified process that I am positive Frank Firek does not deserve.  No one deserves this.

Based on some very bad advice we received, we had taken Dad OFF of his anti-depressants prior to moving him into the nursing home.  A very BIG MISTAKE we’ve learned!  He is now back on his anti-depressants, plus anti-anxiety meds twice a day, and sleeping pills will be added to the mix today.  We are hoping his tears will fade more and more by the day.  Visitors definitely help pick his spirits up and we hope for a constant flow of familiar faces for him!  Of course, he doesn’t always remember the next day that you had stopped by, but he’s in a world now where he’s forced to live in the moment and enjoyable visits definitely help make his day.

Amazingly, I made it almost through the entire day yesterday without crying (except when Mom and I cleaned out Dad’s bathroom).  I hoped maybe I was on to something new, a new phase of recovery.  But this morning I awoke with dread in my heart and couldn’t drag myself out of the covers for over an hour.  Over coffee, the tears started.  I’m not sobbing today, but a constant flow of slow tears keep finding their way out into the world.  I am grieving, I am tired, and I am so incredibly sad.  Just like my dad has to re-figure out his world every day, I now have to figure out mine, too.

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4 Responses to “January 7, 2010 – EVERY DAY IS A MYSTERY”

  1. Jill said

    And you will. Your father has taught you well and those lessons will continue even when he is not there to teach them to you. Big hugs my friend!

    • In just the past two days I’ve started to notice that each of those days has gotten a little easier for me. Less crying, less dread. More love. Don’t get me wrong, I’m still crying – just less of it and less sobbing. Last night I went out to dinner at El Nibble Nook (conveniently located one mile from Sunrise West Bloomfield) with my beloved cousin Karrie and it felt good just to laugh again at stupid things! xo

  2. Pat & Tom McGarrie said

    Dear Joleen,

    Mary Lou and Jim have been kind enough to send us info on your dear dad. I keep him in my prayers each and every night. I also keep your mom and you adult kids in my prayers for help from the above. We always thought your dad was such a great guy. He and your mom were the best match for each other. I wish I had that magic wand to wave over all of you and take this hurt away. Your dad is in the best place for him as by his living at home, he was wearing your mom down. He is getting great care and I know he looks forward to your visits.

    I told Mary Lou that we’d come to see your dad along with them and talk abt old times together. Please keep your chin up—you are doing a super job in helping your dad and he can be proud that he raised such a great daughter (and sons).

    Love and best wishes,

    Pat and Tom McGarrie

    • Thanks, McGarries, it helps to hear that people believe Dad is in the best place for him. With his ups and downs and occassional comments of feeling trapped and living in jail, it is hard to hold that important fact in place. As I am learning first hand, putting all your focus on making sure he’s happy wears you down little by little every day. I thought I was doing okay until – POOF! (see my Jan 12, 2010, entry). I really wish we had that magic wand! Love you guys and I know Dad would LOVE a visit from you! xoxo

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