Funny Friday

If I can, I want to make my posts on Fridays lighthearted.  She may not intend to and certainly has no idea, but mom can be quirky and make me laugh.  The best times are when she is like this and she laughs at herself.

This week, I have been trying to finish off some garden projects so when Frank comes home, we’ve hopped in the car to dash off to the nearest home improvement/DIY place to get supplies.  One afternoon, I told mom to get ready to come with us.  She jumped out of her seat and hurried to the kitchen.  I turned and asked her where she was going and she said, “Upstairs!”.  She realized where she was and laughed at herself!  See what getting her excited can do?

This weeks favorite anecdote was during one of our daily walks.

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Mom putting on the shoes she won’t give back to me.  She says she loves them and they’re the best!

Mom’s social skills are waning so when we see folks from the neighborhood walking, I gently reminder her to smile, wave or say hello.  She spotted a familiar pair of older ladies walking towards us, looked at me with her graying eyes and said, “Jog!” and started jogging!  The ladies passed us and we exchanged a pleasantry while mom tried to look like Harriette Thompson (the oldest woman ever to run and finish a marathon).  The minute she was satisfied that the ladies were past us, mom stopped and said, “Enough!”  Her vanity will pop like a heated popcorn kernel and not only surprise us but make us smile for miles.

 

By the way, she walked two full miles today.  Well done, mama!

This one thing

There is a story in the Bible that I love.  It is the story of Mary and Martha when Jesus comes to visit them and has a meal in Luke, at the end of chapter 10.  Martha is scurrying around (like I would be) trying to be a good hostess especially since it is Jesus visiting. Mary chose to sit at the feet of her beloved friend.

Our mom was like Martha – she scurried after her girls and pushed us to finish tasks until they were done.  Of course, all three of us rebelled in one way or another – mostly because we were challenging her authority.  But, should I follow that thought, it would be tangential to what I mean to write about.

Although mom loved to read, she was most happy when she was busy.  I could not say whether she loved the tasks, but they kept her occupied.  So, at any given time, you would catch her doing laundry, washing dishes, cooking or cleaning.  She rarely sat because there was always something to do.  It is no wonder she tried to fight off giving up everything she liked to do.

At our house, she is the dishwasher.  She hunts down dishes and has her radar on for coffee mugs, frying pans, little snack plates, and yes, even paper plates.  I don’t know if you know anyone else who does this, but she washes paper plates!  I try to tell her that these are disposable, but all I’ll get in her deeply Filipino accent is, “See, huh!  You can still use this!”

Frank and I used to share this chore and I think he misses it more than I do, but he understands that she NEEDS this.  She needs to stand at the sink and feel the running water over her gnarled fingers.  She needs to feel like she has accomplished something.  Then comes the tinkering.  She dries what she can and puts them away wherever she can find a space.

I kind of feel bad about having her do all the dishes, but it is the one thing she is good at that she can still do.  Just like Jesus said about Mary sitting at His feet, this one thing shall not be taken away from mom.  She was just at the stove peering into a pot. Her eyesight is not bad, it is just not good so she couldn’t tell you what was in it, but I bet she was wondering if she could transfer the stew and wash the pot!

Oh mom!

There was a piece of me that resided in guilt.  No matter how I tried to justify myself, I came away with the same burdensome weight.  I think I understand this so I’ll try and explain.  Mom was diagnosed with dementia about three years ago.  It was not a good time – it never is.  She’d call me in tears telling me all that my sister and brother-in-law were accusing her of.  Then I’d get a phone call about mom getting lost by driving south instead of north or putting metal in the microwave, or leaving the stove on for hours.

Mom sure could talk up a believable story back then.  Her coping mechanisms are still pretty sharp until she starts waxing eloquent about life “back then” and all her past gets scrunched up.  So, I believed her (notice this is past tense).  I believed her because I never saw what my sister saw.  I never really did my research.  I never took the time so spend enough time with her to see the deterioration that was slowly taking our mother away.

Could we have done something to at least slow this down?  My sister deserves all the credit for how well mom is doing presently.  She invested so much time and effort to make mom comfortable, but we still have to live so we all had to work.  My portion came through a guilt trip and now that I see mom 24 hours a day, 7 days a week, I wonder what would have happened if we instituted some of what we are doing now earlier.

This condition is disarming.  Mom is disarming.  You can ask her how she likes her food and she will say delicious every time.  You ask her how she is doing and she is fine all the time.  She can look up from her plate and say that she will change her diet to include some of the things we are eating.  Her favorite thing to ask for is the recipe.  Folks, she has not cooked in years nor can she plan a meal or understand when mealtime is.

So, the guilt was like a trailer being pulled by a locomotive.  The train lead us down familiar tracks, but more often than not, we were on new ground almost daily.  I’d chase after the train scrambling to look up what the new ground meant.  How come she couldn’t tell some colors apart?  How come she couldn’t smell (this is bad when something is burning!)?  How come she was never hungry, tired or sleepy?  How come she could snap back with a retort and mumble about all the injustice I am dishing out but she couldn’t sort out whether it was morning or evening.

One day, I had to tell her that we could not use her debit card for a couple of days.  She obsessed about that until she simply cut it up.  Just yesterday, she was studying her arm and laughed.  “Look!”, she told me after I asked her what was funny.  “I can see my vein when my arm is down and it goes away when my arm is up!”  Oh mom!

She’ll probably get to heaven before I do and I know the first thing she will tell me after she exclaims, “Thank God you made it!” will be why, how, and when.  Why her.  How did it happen and how the condition worked.  And finally, when – when God showed her what happened during her time with dementia, could she see how much we loved her, cared for her, and missed her?  She’ll say yes, especially after you let go of the guilt.

The lasagna story

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

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

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.

Not Friday yet…

I used to look forward to Fridays.  After all, it would mean the end of a work week and some relief from the daily grind.  Not really a complaint since I enjoyed all the jobs I ever had and took pride in what I did.  But, we could sleep in a little, shop, be lazy, putter in the yard, and generally do what we wanted.

There are no Fridays in care-giving.  Nope.  Unless you are fortunate enough to get help or if there was someone to tag team with or if you had a part-time job (just long enough for you to make a little money while getting out of the house), the weekend is light years away.

I looked up what our county offers in terms of services for “senior” adults.  I just happened to be curious on the day the Senior Center is closed for their “Staff In-service Day”.  You should have seen me rehearse exactly what I was going to say.  Me working these words several times over, “My mother is a senior visiting for 6 months.  She has dementia and is about Stage 5.  Is it possible for me to bring her for an activity?  I plan on staying with her – would that be okay?”  No, I have no idea what the answer is yet.  But you can be sure I will make the phone call tomorrow.

It has only been a little over two months since mom came and I am already needing intervention!  Yikes!  This morning, contemplating my situation over coffee, I realized that I am beginning to speak loudly in stilted sentences only to have her look at me and say, “Were you talking to me?”

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Ay yai yai!

I am also beginning to count my interactions with people from Walmart, the phone company, the doctor’s office, and the mail delivery person and my text message threads as adult conversations!  Warning bells went off in my head.  Time to change my reality.  I don’t have to fall into the death trap of self pity because of my selflessness and it is not selfishness to self-heal by looking out for myself.  You see what I mean when I say I need help.

I am hesitant to go to a support group because quite frankly, I know I’ll hear the same stories where the names have been changed.  I think that is one reason jobs are nice unless the job I go to is working with folks who have dementia.  Just sayin’.

 

 

 

 

Reality check

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!

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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

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.

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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

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.

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