Thursday, April 19, 2018

Every day is a wave

**This blog post is part of a series on death after a long illness.  Just as I shared the journey of losing my Grandma to dementia, I am sharing our journey to healing as well as any tips or lessons learned that helped us cope with the loss.  Your experience may be different.**

Tuesday night, as we were watching more of our show, we were on the episode called Space and Timing where Brenda's father dies.  When it's the death of a character on the show compared to the other deaths the Fishers deal with, it's just a little closer to home.  He passed of gastric cancer, but it was the way she described his death that was so familiar.

Watching him die, it was like watching someone get washed out to sea only they're sitting right there in bed.  A wave comes, takes them a little away.  Another wave comes, takes them a little away.  Every wave is a day.  Then they go.

I was a little teary during the episode but not bad because as any SFU fan knows, all of life's pain is tempered with humor.  After the episode, the Mr looked at me and asked what I was thinking based on the look on my face.  I started crying and said I couldn't help but think of how she described her dad dying and how much that sounded like what happens with dementia patients.  Her character only had to deal with it for 3 months, but we had to deal with it for over seven years.  When you don't see someone every day, the wave can feel like a tsunami because so much of them are gone from the last time you saw them.  It is so rapid that you feel like you're drowning and panicked because if X has changed that much, what else is going to change so fast the next time?

The wave analogy has applied a lot to many parts of this process.  The day of her passing, a dear friend told me "think of it as a wave in the ocean, where the emotions come in up to your chin (sometimes feeling like they might drown you), and then they go back out.  Multiple times a day this will probably happen so give yourself permission to just feel whatever you feel in the moment."

Tuesday night was one of those moments.  I cursed myself for being so emotionally weak and that I wish I had the strength to have seen her more.  No matter how much I saw her in the beginning, I would inevitably end up with tears filling my eyes and need to excuse myself.  Obviously, I couldn't cry in front of her especially when she had more of her faculties about her because I couldn't say "I'm losing you and I am devastated of how much more of you is going to be gone the next time I see you."  It's like holding on to someone with one hand dangling off of a cliff, and you're desperately trying to hold on.  The Mr said she understood how sensitive I was and gave me that pass, but it doesn't make it any easier especially when it feels like you're being judged for not being 'in the trenches' with everyone else which I totally understand.  He talked about the last family reunion we went to in 2014.  It was actually for the other side of the family, and this is when they were more about trying to get her husband out of the house and not really assessing what kind of day Grandma was having.  This was before she was on meds that truly zoned her out and she was very irritable.  She was not having a good day at all, but she was taken anyway.  She was in a short-sleeved shirt but had a sweater on too, and this was August, and it was HOT.  I was sitting beside her, and people kept overloading her with questions.

"Are you hot?"
"Are you thirsty?"
"Do you want some more food?"
"Do you need to use the restroom?"

This was literally every five minutes for half an hour.  *I* was getting irritated with everyone for the constant yammering.  I was talking to someone else, and someone asked me to ask her if she was hot and I said she wasn't sweating, she looked fine, but she also looked like she was in pain.  (Something I was kind of brushed off on several times so it made interacting with her even harder thinking she could be in pain from the potential static in her head.)  I was told again to ask her, so I said "do you want your sweater off, Grandma?" and that was it.


I was devastated and became 4 years old, looked down and said "I'm sorry" as my voice cracked.

She said, "not you."

I forced a smile and tears filled my eyes, and I excused myself.

The Mr said that moment always stuck with him because even though she was so angry, confused and just wanted people to leave her the hell alone in peace, she recognized that her words hurt me and her love to correct that situation came through.

We laughed over a time earlier that year when she was having a day where she was staring into space due to the drugs.  It was after our trip to San Francisco.  Her husband always picked us up from the airport, and this was the first year he couldn't but still wanted to hear about the trip, so we went over.  We were telling him about it, and I was sitting by Grandma, and we were talking about how expensive the Cliff House was, and I said how little food we got but paid $75 for lunch.  Out of nowhere, she looked over and said, "WHAT!?!?!"  We all busted out laughing because we didn't know if she could hear or understand what we were saying.   Another time a few weeks later, he gave us a check, and she said "I'll take one of those," and we were cracking up.  Then the cell phone rang, and she started dancing in her seat to the ringtone.  It's a good memory, but she didn't know me anymore at that point, but it was good to see those little glimpses of her personality.  It was truly the last moments of hanging on to herself on the outside before dropping into the abyss.  You have to be thankful for those moments.  You learn to cherish the little things that are left of them because too quickly those things will be gone and you'll wish you had them.  That's the thing with dementia, just when you think you've gotten to rock bottom, a new bottom seems to be dug out.  When you hit actual rock bottom, you'll know it, and nothing can prepare you for it.  So it's even those small moments of coming out of the fog for a moment that can sustain you during the loss.  I wish I'd started doing the gratitude journal/one happy year when she was diagnosed.  There are so many other things I wish I could remember but I think it was all so overwhelming that I didn't think of it.  It's not those times I wish to hang on to anyway even if I'm grateful for the few moments where we were able to see the real her.

I choose to remember the woman who would tell me to "put my shoe-bees on" or not to stub my "toe-bee."  These are words that are part of our everyday vocabulary in this house.  It isn't unusual for me to tell the Mr to put his shoe-bees on and he doesn't bat an eye.  He loved that about her too.  I remember the woman who bought me a black and white TV for my bedroom back in the day as well as this creepy ass 1980's replica of a 1960's ventriloquist doll called Willie Talk.  That effer is like straight out of a nightmare, but because I wanted it so badly, she made sure I got it.  This is from a girl who would turn stuffed animals around at night so I couldn't see their eyes, but I wanted that friggin' doll...what a freak ass kid, I was.  When I was 3 years old and walked onto the pool cover to get my ball...a potential disaster in waiting, I think Grandma was the one I went to as three people tried to coax me off.  She would let me play "radio station" in her house that had the room with the stereo that was wired to the entire house.  I'd write some fake radio station name on a sign, slap it on the outside of the pocket door, close it and start my "shift" to broadcast to the whole house.  Since I was a super dork, in between each song, I'd open the door and yell "that was the Oak Ridge Boys with their hit song Elvira!  Now, on with the show!" since she didn't have a mic that would broadcast out.  It was no surprise to her when I went to school for broadcasting, I'm sure.   I try to search my mind for more memories like that from childhood.  The time that I truly idolized her when I had her to myself for the first 8 years of my life, and she doted on me.  I even remember the way she'd yell at me when I was getting on her nerves and trust me, I'd have gotten on my nerves as I understand more about being sensitive to noise.  She had this fridge that came with the 'radio station house' that you would push a button and it would open the fridge door with this "whirrr-errrr" sound.  I was fascinated by it.  Sometimes, I would just walk by and push the button to open it and then shut it a few times.  It gave me some kind of joy like dialing a rotary phone.  After a few times, I'd hear her yell in from the other room "that's enough!!"

Tee hee.  😆

As I sit here at 12:30am typing, I'm surrounded by many cards she gave me with special messages written inside.  In the middle of them is a framed picture of her and I together where I had my head on her shoulder at my birthday dinner 8 years ago.  My mom saw she was getting mushy with me and grabbed my camera.  It's the moment she is telling me I was her first grandbaby and the moment is so full of unconditional love from both of us for each other.  It's a moment that I am forever thankful for having captured especially now.  Seeing her hand over mine and almost kissing my forehead as my head is on her shoulder is like having her here to hug and comfort me all the time.  My mom was never a picture taker, but I'm so grateful she took that one.  Just as the emotional wave felt drowning that night, almost two hours later after having written this post, I felt better.  The wave pulled back, and I was able to laugh thinking of examples to write of the woman I loved so much.  I know one thing for sure, that woman loved me as much as I love her and death can't break that bond.  It will never be the same as hugging her or smelling her White Diamonds in the house, but I have that picture that speaks of over 40 years of love in one wave of tenderness that will sustain me until I see her again.

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  1. This is the best analogy of what happens with diseases like dementia but even cancers too. Losing my father to cancer and having the odd gift of getting a chance to say what needs to be said only covers up the fact that every day they are slowly being taken from you. I am grateful for being a part of the family and having your Grandma to share with you and I am so glad your mom took that particular picture. Truly a gift now!

    1. I think it's a good analogy for any loss, sudden or lingering. You have to have faith that the wave will recede. It helps to have those good memories, something that makes you laugh through the tears. Thanks for sharing.

  2. This is so beautifully written and takes all of us on the journey of your life with her. The pain of the more recent years, as you saw her slipping away, are the most gripping for you right now because it's so tangible. But then the older, more "innocent" memories started to filter in you could find genuine deep humor in the antics of old. I was cracking up picturing you doing your 'radio host' stint and the refrigerator story was a hoot! I can just picture her saying something like "it coss money every time you open that dang door!" (because that was the big thing back then when it came to new-fangled I think it's wonderful that you are surrounded with cards and notes from her with the picture of the two of you together. That is the lasting memory above all others because that one picture alone captured an entire lifetime of love and the history that goes with it. Thank you for sharing all the hills and valleys you're going through. I think every single person reading this can relate on some level with someone they've loved.


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