Dementia

The lasagna story

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One day last week, we visited a friend in a rehabilitation facility.  I have seen mom’s reaction around older folks especially if they are in wheelchairs or using walkers so I knew this would be a difficult visit for her.  Mom is getting skittish about being home by herself so I tried to prep her for the visit since she would have to tag along.

I told her that we had a dear friend who broke a couple of bones and was recuperating and getting physical therapy.   Her reaction to my prep work was priceless.  She quipped, “If there is a job opening, I would like to work in a care home!  I feel for those who can’t help themselves!”  Well, my heart smiled as I told her she was wonderful for thinking this.

Her bravado faded as we walked through the hallways past rooms with folks shuffling around, some moaning in their beds, and many simply sitting in wheelchairs wearing bibs, nodding off in front of the television.  She clutched her purse tightly to her chest and stayed close.  She was wide-eyed during the whole visit and tensed up during the walk out.  The whole time – there was a palpable fear in her posture and in her eyes.

Then yesterday she got a phone call from one of my aunts.  Bad news.  A cousin’s mother is in critical condition and is in hospice.  Mom got off the phone and told me the news, but added, “she is old anyway – when it’s your time, it’s your time.”  By the time she got downstairs and sat down for lunch not 10 minutes later, she had forgotten all about the call.  I think she sometimes chooses to force unhappy thoughts out or pushes them over the edge into the abyss where all her information has disappeared into.

Now for the lasagna.  Sunday afternoon, I had put two pans of lasagna into the oven.  It was our turn to feed the teenagers at church and all we had time for was frozen lasagna.  All was well until I tried to transfer one of the pans into the carry container.  The whole thing slipped and the hot mess splattered all over my kitchen floor and onto my legs!  I shouted out in pain (hot cheese and sauce burns!) and quickly tried to see if any of the lasagna remained in the pan.  Nope.  It was all over the floor.  Mom and Frank came running!  Mom was holding the bag with other supplies and got flustered.  I didn’t mean to get short with her, but I was afraid she’d slip on the sauce so I told her that I’d deal with it.  She hid.  She put herself in the laundry room and stayed there until we called to her.  She got scared!   We tried to reassure her that all was okay and that it was taken care of but for much of the afternoon, her eyes were big as saucers.  There it was again – fear.

Her fears are something new for me.  Her stubborn streak and tantrums are fairly simple to deal with but fear?  Fear of being left.  Fear of what being old brings.  Fear because she can’t cope.  Fear because she can’t process information fast enough.  Fear of the new and unfamiliar.  Fear that we may be so angry with her or each other that a conflict arises.  Fear that becomes a monster because though they are the same as our fears, she has no idea how to wrestle with it or how to rationalize it away and worst of all, to tell us she is scared.

So, we pray for her and keep our household calm – as calm as possible, but stuff comes up – or in the case of the lasagna, it falls apart on the floor.  Gotta run and rescue my coffee mug – mom is on the hunt for something to wash!

 

A little jealousy

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I shouldn’t have been offended but I was.  I read a blog post over the weekend similar to mine except the blogger’s mom has Alzheimer’s.  The similarity ended there.  The writing was inspirational and I wished I was more like her because it would seem that this blogger lives with the same challenges and rises to meet them like a champion.  Actually, a good word would be that she is angelic!  Her attitude and spirit is amazing.  Essentially, she is grateful to be a caregiver and gave her kids wisdom should they find themselves in the same situation as she.  Then, I read more of her posts and a little jealousy crept in.

So I found myself offended and jealous and now mad at myself for getting offended and jealous because her posts were so sweet, touching, and warm while mine….well….not so much.  Okay, I only claimed I wanted to journal our journey.  I took offense because I can’t claim to be without irritation or frustrated or feeling a little sorry for myself.  I do feel sorry for mom and know she’d be appalled and sorry for herself if she knew.  I know deep down though –  the other blogger is right – I need an attitude and heart check daily.

I don’t have the sweetest of stories of memories with mom.  Our relationship wasn’t particularly close.   The anecdotes I share aren’t going to be tied to warm chocolate chip cookies from the oven or sing songy ditties and private haha jokes we share.  The tidbits will be from her present sometimes with ties to my feelings and issues from my past.  I will catch myself looking at her to see if she is looking at me with even a hint of pride or admiration for having such an awesome daughter!

She never got to know ME – or really my children and now she is incapable of it.  That is partially (maybe most of it) my fault.  I was given many years to reach out and be more of a friend than a daughter.  Now, it is too late and what I do read in her eyes is uncertainty not an olive branch to make peace.  I want to be inspiring – I really do.  But the best I can offer is a peek at our reality.  So, stay tuned because I have a lasagna story for tomorrow!

P.S.  I may not mention it often, but I am a Christian and want to be obedient.  I love Jesus and want that love to flow through me to my family, my friends and yes, my mom.  I may not quote Bible verses or get “preachy”, but it is there.  He is in this with me – I am not alone and for that I am truly grateful.

Forever 21

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My sister was given a book that apparently explains how a person with dementia is thinking and feeling.  She is going to send it to me as soon as she gets home (she is on vacation at the moment).  So, me being impatient, looked up “how a person with dementia feels” and “what a dementia patient is thinking”.  What I encountered was a very heart rendering number of articles and blog posts about what could be going on behind the lost eyes.  I started a blog post entitled, “The fear in her eyes” – I just haven’t gotten around to finishing it, but it was the same thing as some of the articles I read.

The hard nosed part of me wanted to ask – how the heck would anyone be able to ascertain how a person with dementia was thinking or feeling?  Well, feeling is different because confusion, fear, listlessness, detachment, and lassitude are easy to see.  Mom can’t hide her dispassion and her lack of interest.  When I ask her what she is thinking she always says, “Nothing!” and laughs.

What did make sense to me is that no matter how much I try to remind mom of days gone by, she seems to be stuck in college.  She goes by the name, “Mom”, but I’m not sure if she understands any longer what that means.  After reading a few pieces, here is what I gather:

1 – I need to find out how old she thinks she is.  She will answer that she is 84, but her actions and responses lead me to believe she thinks she is in her 20’s.

2 – I need to look for and listen for clues and cues before responding or before leading her into situations.  She is very quick to want to follow me everywhere and when we are home, she “checks” on my whereabouts frequently.

3 – I need to understand that I am in charge.  She can’t be responsible no matter how strong she looks or even that she seems clear.  This does not mean that I am the general.  What it means is that with gentleness and love, I am to lead her – not direct her.

I wish I could have known this last year.  We were at the store one day – just shopping for essentials and got ready to go to the checkout line.  She always pushes the cart because it gives her a sense of security and gives her something to do.  I paused to dig around in my purse for my wallet when I heard a noise that I knew was mom’s voice.  There she was, riding past me on the cart saying, “wheeee!”  Yup, it was my 83 year old mom who thought she’d push the cart as fast as she could then hop on for the ride.  She laughed and said it was fun.

I know there will come a time when none of these lessons will matter because she will slip into stages 6 and 7 and the directive will certainly be different.  For now, I will save up her little bursts of what I call sunshine for a rainy day.

Reality check

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Yesterday, I posted about our “hero” – our mother who essentially lived for us after dad passed away 35 years ago.  Well lo and behold, my sisters read the blog post and we started a 45 minute text exchange full of laughter, some sadness, some regret, and a revelation that we still have things to deal with.  Thanks to mom’s dementia, we are  dealing with those things sooner rather than later.

Our mother was and is no angel.  Dictionary.com’s definition for hero is, “a person noted for courageous acts or nobility of character  2. a person who, in the opinion of others, has special achievements, abilities, or personal qualities and is regarded as a role model or ideal” and their definition of angel (leaving out the references to heavenly beings) is, a person who performs a mission of God or acts as if sent by God; a person having qualities generally attributed to an angel, as beauty, purity, or kindliness; a person whose actions and thoughts are consistently virtuous.”  So in many respects, our designation for her as one of our heroes is correct, but the record must be clear – an angel she is not.

She is a human being with all the faults and weaknesses to varying degrees.  She is a sinner in need of God’s grace, mercy, forgiveness, and love.  Maybe that is why my relationship with her remained what it was – fairly formal.  Although we talked and prayed, I could never tell her my deepest anything.  We were never around each other enough to see all the deep cracks in each others’ lives.  On the other hand, my sisters saw most of her cracks.  Apparently, there were many and some of them are of the type with shock value!

giphy

What?!  Her?! No WAY!!

Well, let me tell you the significance of this “rant” – some of those cracks are more prominent because she no longer is able to filter what she wants us or the general public to know.  For instance, we were at a store and she loudly declared how a lady had ruined her body because of all the tattoos she sported.  Whooeee – I ran to shush her, but the damage was done.

Don’t get me wrong, she is generous and still hard working – she does all our dishes quite happily (she loves to play in the water and all the more so after we got a brand new faucet).  But, mom was raised in the “old school” way.  Never argue in front of the kids, don’t talk about sex, no public (or private for that matter) displays of affection, feign normality at all costs, and it’s okay to gossip but never okay to be confrontational.  Whew!

I have been forewarned – chalk it up to one of my lessons.  Deal with my junk now.  Practice, practice, practice all the things Jesus wants me to do.  I need to forgive, let go, be honest, trust, practice KISS (https://en.wikipedia.org/wiki/KISS_principle), be generous, be thankful, and LOVE.  Love my family, friends, and all those I happen to be blessed with by them being in my life.

 

 

Our hero

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Our mother was born in 1933, the fifth of seven children to a poor, but happy farming couple.  My grandparents worked hard.  My grandmother’s family had some means, but the work was difficult.  There is an old Filipino song that goes something like this, “Planting rice is never fun, bent from morn to the set of sun, cannot stand and cannot sit, cannot rest for a little bit.” – this was Grandma’s life.  My grandfather, who I never met, worked as a prison guard – a slight man who contracted and succumbed to tuberculosis before his youngest child was five.

My grandmother loved to tell the story (and I loved to listen) about how Japanese soldiers armed with bayoneted guns, pounded on the door late one night.  Her children hidden in the rafters, covered by grasses, were told to hush.  She bravely opened the door and not understanding their demands after being dragged out by her long black hair, simply pointed to the corner of the meager hut where her husband was coughing up bloody sputum.  It was obvious that the small space was filled with the stench of impending death and a dreaded contagion.  Those soldiers left without stabbing their bayonets into the rafters or taking any of their pitiful supplies or touching my beautiful grandmother.  It was a miracle.  A miracle that honestly my family, cousins, and their families should be grateful for every day.

Fast forward a little and mom marries a young man who had big dreams.  He too had come from a poor upbringing and wanted much for his beautiful young wife.  They emigrated to the United States in 1958 and began their lives as Americans.  Dad had many friends.  He had an infectious laugh, a generous spirit, and a passion for life.  They weren’t perfect parents but they tried.  Dad passed away at the early age of 52, leaving mom to raise us.  I say that loosely, because I was married with two children, one of my sisters was just about to start college and the last just about to start high school.  One thing I learned is parents never stop being parents no matter how old their children are.

So, mom who had to be brave, probably pushed her grief down as far as it would go and forged ahead for our sakes.  This woman who had to learn to balance a checkbook, pay taxes, buy a house, and raise girls by herself put her personal needs aside to make sure our lives never skipped a beat.  She had to get a job in a nursing home while shuttling grandchildren to school and making sure we had a warm meal to come home to after our work days ended.  And she prayed.  She prayed a lot.

I mentioned the fact that Mom is (was) beautiful because she truly was one of the most beautiful women I have ever met.  She had gorgeous thick wavy hair, a lovely figure, and could wear a set of heels and red lipstick that made her look like a model always.  Truth be told, I wanted to look like her.  I not only want to remember her like in the photo below, but for the choices she made for her family.  She is our hero.

old family pic

Photo taken in 1970 – Just a normal family photo, but isn’t she stunning?  I am the pudgy one on the left.

There is a little more to the story.  Actually lots more but I’ll say this.  Mom could have stayed in Dad’s shadow but she didn’t.  She gained wisdom, earned respect from others and helped so many people.  Memories of that noble woman are hard to conjure up when what we see daily now is a woman whose life is simply survival – no longer able to find fulfillment in anything.  She would be appalled at what she has been reduced to – needing help instead of giving help.  But, she is still our hero and we don’t let heroes down do we?

Don’t be so serious

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I really didn’t mean for this blog to be only about mushy gushy stuff or my own hang-ups about taking care of my mother who happens to have dementia.  What I wanted was to have a place for some memories – yes, learning – yes, but also some of her more lighthearted times.  At least for me they were a source of levity and lots of smiles.

The other day, we were out running errands and she was sitting in the seat next to me just content to ride along.  Well, her cell phone started to ring and she did not want to miss a call!  Mom grabbed her purse and proceeded to unzip all the zippers and energetically rummage through the tissues, pens, and the paraphernalia.  The phone rang and rang until of course it stopped.  She stopped, looked at me and exclaimed, “My phone is not here!  I must have left it at home!”

I think honestly, this was one of those pivotal moments I determined to do this to the best of my ability.  “This” meaning – take care of her.  After all, who would find the pure joy and tenderness in her antics?  To think of that moment in the car still makes me smile big!

There was another time in the car (I should rename this post, “In the car…”) – it was hot and she loves ice cream, so we went through Chick-fil-A and I got her a nice milkshake.  It didn’t occur to me that she may have difficulty sucking that cold, thick, ooey goodness through the straw with her loose dentures!  So, being the good caregiver that I am, I reached over to the glove compartment and pulled out….a spork – dutifully pulled it out of the plastic and handed it to her.  She dipped that spork in, took a couple of mouthfuls then turned and said, “Why did they give me a fork for my ice cream?”  Ok, my face is smiling again.

IMG_0747

Mom (on the right) with Estella enjoying her favorite treat!

 

For me

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Famous last words…at least for mom are the words, “I forgot”.  Sometimes I want to be sarcastic and say, “Of course you forgot!  You have dementia!”.  But that would be cruel because she would not understand the unkindness and it would make me look like a heartless person.  I almost did not post today except I had made an effort to fill the time only for her to say to me a little bit ago, “I took a shower and spent all my time upstairs.”

Well, that was untrue.  Today was baking day.  Actually for mom it was a day of excitement because “we” created lots and lots of dirty dishes and she spent much of her time happily playing in the sink.  She was helpful in grating all the zucchini and carrots for our bread, but the best thing for her was the ever growing pile in the sink.  She was chomping at the bit to get to them and took a protective stance in front of the sink once she got there.  Her obsession with water is a curious thing to me because I never really thought of her as enjoying doing the dishes in the lifetime of memories that is now locked up beyond the grey eyes.

I suppose I need to be happy in this – that I am making memories with my mom for me.  Wow, that is a heavy statement.  She is right – she took a shower, but she did not stay upstairs.  She had come downstairs all giddy about her new shirt.  She had “found” all her new things in her closet and tried them on, modeling them in front of the mirror because she wanted to know how she looked in them.  (I forgot to mention that mom is a little vain – she does look awesome for all her 84 years!)  She then put on one of her new shoes and declared how pretty they were.  But, quick as the delight wore off, she was back in her comfy regular outfit and ready to grate zucchini and carrots with me.

All in all, the bread turned out quite nice.  I was happy except no matter what I concoct for an activity, she really only finds delight in the routine.  So, for the time that it was, baking day was a success.IMG_0788

P.S.  The breads are “healthy” adaptations of recipes I found online.  I used applesauce instead of oil and cut any sugar portions in half .  Of course, I plan on slathering our slices with butter or cream cheese but isn’t that the yummy part anyway?

She packed!

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On a whim, I decided to check on mom in the middle of the day.  She had been particularly quiet, insisting on sitting upstairs all day long.  She came down, to “work” and then would announce that her “work” was done and hike back to her room.  She also decided that she had laundry to do – which makes my heart happy because getting her to relinquish her favorite shirt and shorts was akin to me robbing her of precious jewels.  So, I went to check, bringing her an old pair of capri pants I thought she could wear.

If it hadn’t been for those pants, I would have not known that she had repacked all her clothes except for a couple of things!  No wonder she would declare – “I have nothing to wear.  I left all my clothes at home”.  Well, I knew better because I personally had taken her shopping and thought she simply had forgotten her new clothes in drawers.  No wonder she’d take an eternity to change or get ready for an outing or anything that had to do with making a choice on what to wear!

She expected my sister to show up any minute to take her “home”.  The only thing is that “home” is a figment of her imagination because it is a jumble of places – places that for some reason have remained in her mind.  She speaks many times of the rice farm “home” where they received a portion of the rice harvested.  “Home” is the townhouse that is on the farm next to the rice paddy that is surrounded by roads congested with cars spewing out exhaust fumes so that she has a hard time breathing.  “Home” is where she makes herself food because no one else eats the same thing, but she will take home all the recipes she has learned here though she has not touched pots or pans or a stove in years.  “Home” is tied to the one person she leans on the most and whose face and voice she depends on to tell her what to do – my sister.  I can’t fill those shoes so I will not try.  Nor will I try to replace her longing for my sister for other things or people.  It is something embedded deep inside her that keeps her going.  Just like I consider my home to be where my family is, she too has her own concept of “home”.  It is not wrong, it is her current definition of where she belongs no matter how content, or provided for or cared for she is in other places.  One day,  “home” will be with Jesus, but until then it is tied to my sister and soon, we will be without a choice, but to allow her to stay where she is at “home”.

This challenges me in many ways.  She does not consider my home, her home.  Our routines are foreign to her.  Our friends and acquaintances are foreign to her.  Our relationship is fairly formal because though she can’t remember why, she is a proud mama that can’t show weakness to her child.  This is July, but isn’t November just tomorrow?  Being truly unable to process the concept of time, she sleeps with the light on, is never hungry or tired, but understands that she will be picked up by my sister – when?  Well that could be any day now.

The cloud

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Mom came downstairs with an empty bottle of Robitussin the other day.  A large bottle.  While her caregiver was here, mom had a nagging cough.  I chalked it up to the new environment and who knows, she may have picked up a virus on the way here.  So, we made sure she got cough syrup every evening before bed so that she could get some rest.

Well, the caregiver has been gone now three weeks and the cough is gone, but the cough syrup bottle is empty.  Let me back up a bit.  I pray every day that I am a good caregiver to mom.  I want to make sure she is settled, reasonably content, given balanced meals and safe.  So, this morning on our customary walk, it dawned on me (I like to think God can speak to me since I am not moving quickly and mom is non-conversational so He has a chance at my attention).  This whole experience with taking care of mom, albeit short is challenging me to my core.  Do I love though the love may not be returned in the same way I need?  Am I selfish to the core because the kairos (due season) time is not so opportune and the chronos (calendar/clock) time seems to be consumed so quickly?  Ok – back to “The Cloud”…

Here was my “tada” moment…the cough medicine was like a cloud!  She already has difficulty processing data – hot/cold, happy/sad, hurried/slow – and then to put her on an OTC medication, even one meant to help her, was like putting her head in a cloud.  Here I was thinking that she was making tremendous progress!  I could hope, but reality keeps smacking me in the face – telling me dementia is not reversible.  Her recent “improvement” was simply the cloud of dextromethorphan and guaifenesin being lifted.  Don’t get me wrong – if she needs medication, I will make sure she gets what she needs, but I also need to work out how things will affect her.

I read somewhere that there are OTC medications that are somehow linked to the onset of dementia and Alzheimer’s.  There is so much information, conjecture, and postulation in regards to what causes these terrible conditions.  That may be good for me so that I can try to avoid it, but that does not change where my mother is.  At this point, it does not matter how she arrived at the place she is at, but how we, her family, are helping her deal with it by being the best caregivers we can be.

 

A “wow” weekend

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Before I start, I wanted to share something about mom.  She LOVES water.  She finds every excuse to wash dishes and hunts for things to wash.  If she can’t find anything to wash, she washes her hands.  She will rest her elbows on the sink and let the water cascade over her fingers as if she is playing.  It could take her 2 minutes to wash a coffee cup or a spoon.  Although I sometimes feel bad about her doing ALL the dishes, it gives her something to do – something she enjoys immensely.

This weekend was good for her!  She seemed to have a burst of energy that included some unsolicited laundry, an invitation to go out to lunch (which never happens) and a couple of conversations initiated by her.  The best was that she sat for a few minutes watching a movie and laughed at one of the funny parts – ok, let’s be really serious – she never watches TV nor can she keep up with anything on the screen.  Imagine our surprise when the chuckle came from her chair!  We went out for a meal and she handled her food by herself including mashed potatoes and cole slaw which she normally turns her nose up at.

So am I bewildered – you bet.  I would love it if she could be like this most of the time instead of simply just being there without reflex or emotion or opinion.  I read in some of my research that for folks her age with dementia, her senses are not only loosing their sharpness, she is losing her ability to process what she sees, hears, tastes, and even what she feels.  That is probably why she gets no pleasure out of watching television – she can’t keep up.

So, we move much more slowly.  We give her time to put her shoes on or go to the restroom one more time.  I shared mom’s little victories from the weekend with my sisters.  It was nice to be able to tell them she is doing well.  Still lots of work ahead to make sure she is comfortable and feels secure.  We have to make sure she gets lots of opportunities to play in the water.