I’m Not Staying Here, Take Me Home

          Wow.  What a day. 

          Mom was discharged with a great bill of health.  Great . . .  

          The paper work had not yet been processed for the assisted living.  Mom didn’t have to go to a rehab center as had been speculated earlier.  She was discharged.  And it was up to me to drive her away from the hospital.
          It was disheartening as I watched the nurses wheel her to the curb and load her into my car.  Less than nine years before, I had given birth to Jenna.  And it was mom who was driving while the nurses wheeled me out and loaded me up.  It still brings tears to my eyes when I think about it.  I absolutely HATE this role reversal thing.

          So I take her to the house where she has lived for the last fifty years (and she has not lived anywhere else during that time) and we actually have trouble getting in the door (I don’t think my key got cut all the way) and have to really work at getting in.

          She doesn’t have a problem until we have walked through the door.  She sits down and checks HER MAIL – mail addressed to the house where I had taken her.  I say I am fixing lunch.  She says she is not hungry.  I still fix her lunch.  She childish refuses to eat.

          I tell her to take off her coat. 

          “I don’t want to stay here!”

          “Where do you want to be?”

          “Home.  My home.”

          “Do you have an address?”

          She was irate – thinking I was just playing games with her.  I guess I was.  But not to be funny. But it’s just better to give in to her reality than to argue.  But her reality doesn’t have an address. 

          But she doesn’t want to stay in the house where we are because it’s boring!  So I ask what makes it boring.  What makes her other replica house more exciting?

          She said it’s not the house itself – but the location.  Her other house is in the city.  And there is a store on every corner!  She doesn’t want to live in this boring house in the “country”.

          I cover my mouth and hope that she doesn’t see the laughter in my eyes.  Mom’s house may not be downtown city – but it is definitely NOT the country. I’ll admit that the location was on a bit the desolate side 50 years ago – but the city has built its way around her house.  There are at least thirty eating places that can be walked to.

          A former neighbor from across the street knocks at the door.  He came to talk to Nate.  Mom told him that Nate didn't live there.  Then she practically ordered the neighbor in to explore her “weird house” with her.  He seemed to provide more comforting words than I did.  She still wasn’t convinced, but he seemed to calm her nerves.  And he helped to lighten my load. 

          I had to go get Jenna from school.  Mom was ready to go at 2:30.  Jenna’s school doesn’t let out until 3:20.  Her school is only ten minutes away.  I wasn’t planning on leaving and told mom hang tight for another 30 minutes.  We played Taboo.

          Both Kayla and Sunny offered to sit while I went and got Jenna – but I knew that mom was anxious to leave and so I told both that it would be an hour less that each of them would have to deal with if I were to take her and have Nate come pick her up from where I currently reside.

          So after I picked up Jenna, I brought mom to my home.  She hasn’t been here often, but hasn’t ever been comfortable with being here.  I don’t blame her though.  I’m not all that comfortable myself.

          But yesterday she was content.  She finally ate something and watched one sitcom while we waited for Nate to come get her.  For in her mind, Nate and Ellen live in her new house.  So even though I couldn’t remember her new address, Nate would know where to take her.

          Poor mom.  I hope that when we are able to move her into assisted living – which hopefully will be soon this week – she may “recognize it” as somewhere she’s been before and will feel more at home there than she does in the house where she actually does live but doesn’t want to anymore.

          I’m certain that once she gets going, she will be comfortable in the community and know that she is not alone.  She will be on a consistent schedule and she’ll have peers that will share in her limited time frame.  Of course we will all continue to visit her – but as her children and not her primary care givers.  And that will be a blessing to ALL of us.

We Might as Well Just Write a Book!

          I went to several assisted living facilities by myself during November and December.  Many facilities would say they had no room but that we could get on a waiting list.  That seemed okay as my brothers weren’t looking to move her until maybe June or July.

At each location I was asked, “Does your mom need assistance with the shower?”

          “She can shower by herself.”  She could.  Two months ago.  Even just two weeks ago.  And then she’d forget to use soap.  And then she would just forget.

          Last Tuesday I created this post.  It was a good day for her.  It turned out to be the last good day at home.  Her home.  The one she has lived in for the last 50 plus years but has forgotten.  We’re moving her into assisted living.  I don’t know when.  It should have been a lot sooner in my opinion.

          Last week she was smiling.  Giggling.  That’s right – giggling.  And she called me crazy.  We had fun.  And then her friend called.  And she was alert enough to know who she was talking to.  I don’t know how soon after I left that she became withdrawn.  Disconnected.

          On Thursday she was almost in a stupor – though not quite.  She would answer my questions.  “No, I don’t want to do it”  “Not right now”  “I don’t know why I’m so tired . . .”

          I had suggested (several times) for her to lie down.  I did give her drinks from the fridge. Perhaps not enough.  The next two days were nightmarish for Nate and Ellen as mom would pass out which in turn would freak Ellen. 

          Newlyweds shouldn’t be in that position to take care of a grandma that rapidly declines.  Sunday morning was really bad for Ellen especially, who had found grandma in soiled sheets and apparently her room reeked.

          Patrick and Sunny took her to the hospital that morning.  It sounds like they all missed Church as Nate and Ellen had gone with them.  Apparently they were in the emergency room for what felt like forever – other cases were given a higher priority.

          When they did finally call mom back, only two people were allowed to go with her.  That ended up being Patrick – the only one of the four who has power of attorney, and Nate, who has been acting as mom’s care giver in Corey’s place.  Sunny and Ellen returned home and Sunny started in with phone calls to the rest of mom’s children.

          I had just barely started my lesson when the first phone call came.  A frantic caller as the person on the other end called three times.  When the lesson was over, I returned the call to my sister who related the events.

          I went to Kayla’s ward right after attending the meetings at ours.  Kayla had told me she was speaking.  I was sooooo glad that I went as she did an awesome job. 

While the sacrament was being passed, my phone went off again.  Fortunately it had been on vibrate all day and no one aside from Jenna and I seemed to notice.

          Sunny finally got a hold of Bill (Kayla’s husband) who has been through hospital administration many times with his first wife.  He’s got a deeper insight and understanding than the rest of us would like to experience.  But here we are.  Mom is in the hospital.  Quite confused.  Disoriented.  But happy.  Positive.

Or so I heard. 

          I was told to talk to a social worker about getting mom moved over to one of these facilities (there’s one we like that actually has an opening right now)  I was there for five hours yesterday before the social worker arrived. 

          At first glance he didn’t seem legitimate.  For me personally, he seemed to come across as a patient from the psychiatric ward – a happy go lucky fellow with mussed up hair.

          I was told that she’d probably be released today.  Really? But we need another day at least.

          Sunny picked up a packet from the assisted living.  A large packet.  She said there were over 35 pages to be filled out and that there was no way she and Patrick would be able to get it done just by themselves in the allotted time frame.

          So Roland and I went out to mom’s house to assist with the paperwork.  We Skyped Corey and fired questions at him.  We could see him, but evidently he could not see us. 

          For the most part we were laughing.  Corey came across like one of those old Japanese movies in which the lips are not in sync with what’s being said.  And when it came to personal questions – do we say how it really was or provide today’s reality which is only about 40% truth.

          Mom really has been to Europe and Greece, Alaska and Hawaii.  But in her mind she’s also been to Egypt, South Africa, Russia and China (to name a few)  Provide the name of any state and she claims she’s been there – usually just for the day.  And usually she drove.  She’s been to a quarter of the states at best.  She’s never been to Asia or many other places she’s claimed.  She was not driving when she was fourteen.

          It’s funny.  Mom has no clue why she was at the hospital – even after we told her.  She doesn’t retain information.  Corey had asked why she was in the hospital.  Her answer amused both me and Corey.

          She said (over the phone), “I’m not sick or anything – I had to come to take a shower.  And it’s here so I have to be here”

          Yet when “Everybody Loves Raymond” showed on TV, she was able to relate the events that were about to happen.  How is that even possible?  I mean, I know she’s seen it again and again.  It just floored me that she seemed to have it memorized.

          She’s worried about her purse.  She often will look for it while she’s home.  Once she finds it, she can relax – until she’s forgotten and has to search for it again.  It has become a part of her the way the cell phone has become a surgically implanted part of many people or a security blanket a child may drag around and refuse to part with.

          I don’t know where she’ll wake up tomorrow.  They say it takes a couple of days to process the paperwork.  We’re really not ready for her to be leaving the hospital today.  The transition will be so much easier if we didn’t have to take her back to her house. 

          Don’t guess I will know for a while yet.  Perhaps I’ll have be able to post more tomorrow.  Hopefully I will be too busy with transition to make the post.  We’ll see.

Producing Salty Water (and a LOT of it)

          This post reflects stirred emotions that between October and mid December 2012

          Poor mom.  For the most part we don’t know where she’s at.  The reality of her world is so far different from our own.

          In her mind, she believes that while State Street was under construction, she and all the other residences in her neighborhood were evacuated.  The construction crew had asked them to move somewhere else.  Mom doesn’t remember where it is that she moved – but she is back – along with many of her neighbors.  For a while she wanted to make certain that everybody knows she’s back.  Now she wants to go back to wherever she thinks she lived before.  She doesn’t know the address though – but she says it’s a house.

          She called Bill.  She always calls Bill’s cell phone when she’s trying to get a hold of Kayla.  She left a message to make Kayla aware that she was back in her old house.  Kayla called me to inform me of the events that had taken place.  I told her that Nate had posted his comment on file that all of mom’s children (and some spouses) all have access to.

I don’t know if she called Corey, or if Corey called her.  Same story.  Corey asked for her address.  Mom didn’t know.  She had to ask Sunny (who happened to be watching her) She returned to the phone and gave Corey the name of the city which she has lived for the last fifty years.

          Corey said that is the same address that all of us have and she didn’t need to call anyone else.  Mom was highly confused as to how everyone was aware of where she was but herself.  Sunny was super freaked out and had stayed longer than she usually does.

          Roland and I were on our way to pick up mom and take her to a dinner at the Church she attends.  I called to say we were on our way.  I guess I should have talked to Sunny instead of mom.  There was an accident on the Freeway.  It took us 20 minutes longer than normal.

          Sunny was wide eyed and felt a sense of relief when I walked through the door.  Mom was all ready to go.  I told her to head out to the car and I would be there momentarily.  Sunny expressed her concerns.  And I said I was a little hurt that mom hadn’t called me to tell me she was back.  That made Sunny laugh.  I’m glad I could give her that.

          Mom was fine at the party.  She wasn’t restless as she had been less than a month ago when it was just the family and she was overwhelmed by the tremendous amount of people.  I was overwhelmed by the huge turnout.  Between 240 -260 people.  We stayed for the whole event.  I hadn’t expected that.

          Patrick spent the night with mom as Nate and Ellen had gone out of town.  Not too long ago mom was independent and didn’t want to be babied.  She is, after all, a big girl and she can do things by herself.  Now she dreads the idea of being alone.  She often seems surprised by letters or people who show up at her door.  They think we all know where she used to live.  But it’s all in her mind.  She’s been in the same house for over 50 years.

          I met my husband 12 years ago.  Corey graduated from high school almost 20.  But for some reason she has the two crossing paths before Corey graduated.  For the most part I’ve been a pal that was raised in San Francisco alongside her – but there was one occasion that she did introduce me as her daughter – it was to a friend that was well aware of who I am – possibly better than mom does.

          Each time we mention the name of a state or country – she claims that she has been there.  It was always “just for a day” though.

          I didn’t want this to become a “dementia blog” any more than Corey wanted his to focus on dementia.  Actually dementia isn’t the biggest focus thus far as there are less than ten posts.  I can’t say I hope to have more – but as it will be on my mind I’m sure there will be more that mention the wretched thief.  There have been days when the dementia is really bad - moreso for me than my mom.  Sometimes I can take it with a grain of salt – and even laugh.  But often I am an emotional wreck.

          The neighbor across the street has a gathering of sisters once a week.  She suggested I bring mom but just drop her off and not stay myself.  But I wanted to visit.  I miss the socialization of those that I used to associate with.  Mom, who claimed she was bored, was not interested in going.  And if I persisted, she would become mean.

          So I cried.  I cried because I wasn’t invited.  I cried because mom was acting like a childish brat.  I cried because I was crying over something I couldn’t control.  I was pretty good about holding it in until we started playing games.  I took off the minute Nate returned home from school.

          That all took place in November and December.  Since Christmas, mom seems almost comatose at times.  Just as disheartening as trying to coax the child inside.  She lost her driver’s license over a year ago and became mean – well with me anyway.  I’m the one who had taken her to the Driver’s License renewal.

          There had been a few days when she had become her mother and greeted folks in a friendly way, without a care in the world.  And she was always pleasant when she went out with Sunny – at least in the beginning.  But Sunny has seen the mean side of my mom since. 

          Next week we have another family meeting.  Kayla and I are ready to take action.  Corey and Patrick both seemed to express a denial. But we may all be on the same page now.  Mom needs a community.  She needs a routine.  And the rest of us need to return to our roles of children and not the caregivers that we’ve become.

          I was so diligent about going through Jenna’s folder once she returned home from school – but have been quite slack for an entire year now.  I need my focus to be where it was.  I need to keep my mind clear of heavy tears.

Lucy and Ethel and Dementia

          Mom and I used to refer to ourselves as Ethel and Lucy, which I have mentioned here 

           Yesterday we were laughing together.  It felt almost like it had a very long time ago.

          Of course I don’t remember all of the conversation – just pieces.  But it went something like this

          During the Password game show:

          Mom:  “Humphrey.  What kind of name is Humphrey?  Who would name their kid Humphrey?”

          I laugh.

          “Humphrey.  That sounds like a hump.”

          “I never liked the name Dylan.  Whenever I hear that name, I think of dill pickles”

          Later we were working on a crossword puzzle.  Let’s get real.  Sometimes the puzzle creators reach for definitions. Or else it’s taken for granted that the puzzle solver just automatically knows the name of every geographical location (including fictional ones) and the histories behind them.  Give me a break.

          So we’re laughing at some of our rationalization and realizing just because the word fits doesn’t mean it goes.

          “Viola relative.  Do they mean a flower?  Or are we supposed to know the actual person?”

          “Or it could mean an instrument.”

          As it turned out, mom was spot on.  The answer was cello. 

          We had asked all of the “across” questions, but not all the downs.  She decided it was taking us too long and looked the answers up in the back – writing down some and still asking, “What the heck is that?”  or “Oh, yea. Right.” Followed by the rolling of eyes.

          And then the phone rang.  It was her friend, Erin.  For mom, the phone call came totally out of the blue.  I wasn’t as surprised as I had just mailed a card to her daughter’s address (which you can read about here) 

          Mom related what we were doing and Erin asked to speak to me.  Mom handed me the phone saying, “It’s my friend, Erin.  She wants to talk to you.”

          Of course Erin and I couldn’t have the conversation that’s been missing all of these years.  She thanked me for finding her. She said she had no idea.  Well, of course she had no idea.  That’s understandable.  We only learned about it less than a year ago.  And mom’s mind seems to have gone downhill rapidly since she was first diagnosed with dementia.

          Erin gave me two phone numbers, her mailing address and email address to pass on to Fran (which I did once I got home) and I sent Erin a more detailed message than the one I had sent her at Christmas time. 

          I visit mom again today.  I hope it’s as pleasant as yesterday’s visit.

Is There Justification in Lying?

          When your child hollers: “Mom! So-n-so is on the phone!” 

And you respond with, “Tell them I’m not home.”  What are you teaching your child?

          Several children will go in for shots and will ask, “Will this hurt?” of course they don’t always get the truth.  But hey, it’s easier to lie than to wrestle them to the ground and make it hurt even more.

Is it okay to lie?  Is it acceptable to have your child tell a stranger that you are not home?  When a child is home alone, he’s been taught to say that “my mom is sleeping”  “dad’s out in the shed.  I’ll go get him” and runs and hides or calls an adult with a plea in his voice, “What do I do?”

          I’m not big on deceit – though I have told Jenna there’s a Santa Clause and have been sneaky about surprises.  Is that the same?

          When my grandmother went back to work to support herself and her three children she lied about her age as she feared age discrimination.

          When my brother-in-law’s first wife was diagnosed with cancer, Bill had just lost his job.  Annaleigh decided not to seek treatment – knowing full well that there was no insurance and that they wouldn’t have the finances to meet her medical expenses.  So Bill lied to her.  He said they were covered, even though they weren’t.

          We’re taught to always tell the truth, because then we don’t have to remember whatever falsehood we may have said.  In my mom’s case, she doesn’t always remember from one minute to the other.  We can have the same conversation seven times in less than thirty minutes.

          My mom believes all sorts of crazy things.  She gets angry if we would attempt to correct her – so for the most part we don’t.  It’s not as though she’s going to remember in two minutes from now anyway.  When we’d express concern over her medication or finances (as there are so many scams out there) she behaved quite childish and all but throws a tantrum.

          Corey has called around to have mom’s name removed from several caller lists but has been told that the request has to be made from HER phone.  So now someone else will need to call these organizations (whether real or bogus) from her phone – probably a female – so that we can have her name removed and if they should ask, “Am I speaking with person in charge” we can lie and say “Yes” because really, how does one prove him or herself over the phone with a solicitor?

         

          Sometimes we have to take mom places that she just doesn’t want to go.  So we’re not always truthful about it.  Or sometimes we are and she forgets and accuses us of wrong doing.  It’s been frustrating, really.  Or at least that’s how it was in March.  It’s not even been an entire year later and her memory is going rapidly. 

          For two years the main road off hers was under construction. She believes during that time the entire neighborhood had been evacuated to elsewhere.  She is always surprised by certain items of mail she receives or when her children are able to find the house she’s lived in for the last 52 years as she believes that she has lived elsewhere.  Except for the other day.  I think it’s the first time in a month that she hasn’t mentioned the move.

          The other day I had a caregiver and nurse drop by to give mom an evaluation as Patrick and Sunny had scheduled an appointment with a facility today and I thought it better to find the right fit (as there are three locations).  Mom answered their questions – offended at how personal it was getting.  I figured she’d forget about it the minute they left.  But she asked, “Just who were those girls?”

          “Those weren’t your visiting teachers?” I knew that they weren’t.  But she might not know. 

          “I’ve never seen them before.”

          “Really?” I know for a fact that she doesn’t know even half the people in her ward (church boundaries) although she has known many of its members 20-40 years or more.  But she’s forgotten most of them.  I was surprised to see her smiling at the ward Christmas dinner and staying for the entire program.

          “Oh, I’m sorry mom.  Maybe I shouldn’t have let them in.  They seemed nice”

          She forgot about them.  I told her that I had to leave in about thirty minutes to pick up Jenna and would she like to come with me.  I was surprised when she said “yes” but of course she changed her mind when it came time – which was okay.  I needed to get home to start dinner for Roland.

          As I was getting ready to leave, she kissed me and thanked me for coming.  She doesn’t remember her conversation with “the girls” at all.  Even if I had told her the truth about who they were and why they were there, she wouldn’t have remembered.  So why have her be upset for two or three minutes with the truth?  I hate having to lie – but I hate having her upset with me even more.

          Funny.  Whenever we tried to cover up a wrong-doing with a lie, we got into more trouble with the lie than we did for the “crime” itself. I remember one time when we didn’t get punished at all because even though our actions were less than desirable (I had let Patrick drive the car a year before he was eligible to get his driver’s license) we had been truthful about it.

          Mom doesn’t remember that.  I don’t know if she remembers how against deceit she was at one time.  I think she’s oblivious for the most part.

Welcoming the New Year

A year ago today, mom lost her driver’s license.  It’s hard to believe how much of her memory has been wiped out in such a short time.  Yesterday she seemed almost comatose to me.  Her birthday is not until June.  Jenna asked if we could go to her house to celebrate.  There were tears in my eye because I honestly don’t know where she’ll be six months from now.

On the Saturday before the New Year, we took my mom to the movies with us. We were late getting to the movie and so had to sit in front.  “Life of Pi” is NOT a comedy – unless maybe one is watching it with another who has dementia.

          I sat between my mom and Jenna.  Jenna rattled on about the movie and animals and explained things in detail (as though I wasn’t sitting there watching it myself) and my mom would make these off-the-wall comments that made me laugh.

          Mom’s memory right now doesn’t allow her to retain what she has watched from scene to scene. I don’t know if she remembered why the pair was in the water.  But she did ask,   “Why doesn’t he just throw the tiger out of the boat?”

          “The tiger is too big.  He can’t just throw it out.”

          “Well, if it was me, I would just shoot him with a gun.”

          I start to laugh.  How does one obtain a gun if marooned in the ocean?  He hadn’t chosen to be stranded out there. And then the very idea of my mom with a gun is laughable.  We had found one in her mother’s apartment several years ago (before I had met Roland) and treated it as though it was a dead mouse.

          I took Jenna to the library on Monday afternoon.  The auditorium had been set up with plastic water bottles, streamers, paper plates, beads, and icicles.  Children were encouraged to make noise maker (shakers) and party hats to welcome in the “new year” – which wouldn’t officially start until twelve hours after the celebration. 

They played a few games – including “hot potato” and “Simon says” before the “New Year’s” countdown. It was cute watching the children countdown to noon with all the enthusiasm of it being midnight.

Jenna enjoyed herself.  What she seemed to enjoy the most was being in the company of a friend from Church.  His mom invited Jenna to do a family home evening with them later on.  And so Jenna went over to her friend’s house for pizza and a lesson on setting goals.  I think there was another celebration to welcome in the New Year.  She was home before 9:00.

Roland and I started in on the pizza while she was gone.  No new year’s snacks this year.  But it was typical of my new year’s holiday – boring. 

Bill had talked to Roland about meeting at my mom’s house.  He called when Jenna was gone.  But Roland wanted just a quiet evening at home. Unlike last year, Jenna made it until after midnight.  She could have probably kept on going if I hadn’t wanted to go to bed myself.  I was tired.

So on New Year’s Day itself we met Kayla and Bill at my mom’s house.  We played a few games.  Not much.  The kids were getting restless.  We all left to return to our homes about the same time.

Corey called shortly thereafter.  First he talked to mom and asked what she’d been doing.  She remembered that all of us were there, but she also informed Corey that we had gone for a hike.  Really?

Corey then called me to get the truth of the story.  It’s been less than 40 degrees outside.  Like I’d really take my mom and the babies out in 40 degree weather.  Like Roland and I are even in shape to go hiking. 

It’s been a tiring year.  I hope our families may be less stressed in 2013.

Another Visit with Mom

She had just finished eating when I arrive.

I don’t bother to ask if she has checked her blood.

We go for a walk.

I point to a house where a family had lived

Many years ago.

I asked if she remembers.

She says that she does.  That’s good.

She didn’t have a clue on Saturday.

I take her to my house to eat lunch.

I put her at the computer while I prepare the food.

She enjoys viewing the pictures that Kayla had taken

And had posted to facebook.

I make some suggestions on how to complete the day

I ask if there is anywhere in particular where she would like to go.

She says she wants to go home. Just home.

Her mother was a homebody, too.

I take her back home with a reminder that I will have to leave again.

I have to go pick Jenna up from school.  I’d like her to go with me.

She doesn’t want to go.

Just as I’m about to leave, I decide I will call Nate and ask if he could pick up Jenna.

Nate married my niece.  They live in mom’s basement.

Mom is overwhelmed at the idea of my knowing Nate

And having his phone number is such a foreign concept to her.

Why would I have Nate’s phone number?

I cannot get a hold of him.  According to her, it’s just as well

How would he even recognize Jenna?

I look at her as though she has sprouted horns

I end up driving to Jenna’s school while mom takes a nap

Or so she claims.

Nate opens the door when Jenna and I return

Mom seems a little more with it than she had been after lunch.

She seemed fine before lunch.

Nate says he has to run an errand

Jenna hands me a sheet of paper and orders me to write a story

“What story?”

I’m so not in the mood for making up something

“I will tell you”

As she starts in with her own story of an alien visiting a factory she sees that I am

using a pen and writing in cursive

“Use a pencil, mom.  And don’t write in cursive!”

“You write it with a pencil.”

“Okay, fine.”

She gets another piece of paper and says she will write her story but now I have to write my own.

Grandma dismisses herself so she can “look outside for a minute”

I stop writing. One of us has to watch her.

Jenna and I take turns watching mom standing in the driveway observing the sky

And then she walks into the back yard expecting the weather will change.

It doesn’t.  She comes inside and announces that she would like to take a walk

but that it’s just too windy.

Personality number three.

Instantly she becomes another person as she retrieves her puzzle book and hunts for words.

Jenna and I continue writing.

Mine is a Christmas story.  Unpolished.

I will post it next month.  Most likely it will still be unpolished.

Nate returns. Jenna and I leave mom’s house to return home. 

Still worried about my mom.

Liberty Mutual NEEDS to STOP Calling My Mom

          Mom has been tested for Alzheimer’s at least twice.  We’ve been told that she doesn’t have it. But she does have some form of dementia.  A distorted memory loss.  Some days she’s been there, others she has not.  For the most part it seems she’s been elsewhere – first on exotic vacations and then sharing her childhood and teenage years in San Francisco.   She just didn’t seem to be anywhere today. 

          She was just finishing the dishes when she let me inside.  I greeted her and asked if she had taken her blood.  She had to process the information as she always does when I ask the question.  She said she hadn’t.  I then asked her if she’d eaten breakfast.  She said she had.  And so I told her that we’d have to wait in order to get a proper reading.  She looked at me with childish eyes and confessed that she had forgotten how. 

          She said that she needed to go to the store.  She said that she wanted to purchase some cough drops – a large bag of them.  I took her to Sam’s Club as they sell items in bulk and would have more cough drops offered in their packaging than the regular stores.

          The mail usually doesn’t come until I’m just about to leave – or when I’m pulling out of the driveway.  But today it was early.  Very early.  I guess because of having had off Veteran’s Day yesterday?  What a boatload of mail, too.

          Mom dismissed herself to go to the bathroom, and I hurriedly fingered through the mail and pulled out mail from various charities and Capitol One and set them aside to go through later to make certain it really was all junk.  It was. 

          Corey received five pieces of mail.  I’m certain that two of those could have been trashed as well.  But mom insisted he needed it all and we ended up going to the post office as she’d put it all in a large manila envelope.  Note to self:  make up labels to give to mom so that she can just forward Corey’s mail without having to pay for it.  Even after I show her, she could still forget why she has all these labels with Corey’s name and address.

          We drove passed the school that my sibs and I had all attended.  Mom says, “There is the school that I went to . . . that’s probably the same one that you went to.”

          “Yes.  I went to that school.”  She didn’t.  Not as a student anyway.  It wasn’t even built until 35 years after she was born.

         We were going through Taboo cards trying to get each other to guess the words on our cards.  I explained how to play it a few times. Each time she would answer the phone  I would have to re-explain.  

         One of the calls that she received was from Liberty Mutual.  According to her, they call on a weekly basis.  It is never a human being.  It is always a machine asking to press this number or that number.  Why doesn't she just hang up on them?  What is Liberty Mutual thinking to have a machine call their clients?  How many of those clients are capable of pushing the correct numbered button? 

         Mom showed me her supply that came from Liberty Mutual.  She's set for a while.  They don't need to call every day or every week or every month.  She's good.  Seriously.  She isn't in the right frame of mind or patience to be pushing buttons.

          We finished the puzzle book that she and Kayla had started.  And so we left the house again to purchase some puzzle book replacements. They seem to be helping.

          We had started the third puzzle when I excused myself to return home.  She seemed disappointed.  But expressed gratitude for having had come. I needed that.

          I want my mom back.

Don’t Yell at Aunt Gertrude

         Somebody had suggested that someone take a mom for a drive to look at the fall.  Knowing my own vehicle wasn’t going to make it up the canyon (it actually was too sluggish to get near the base) I chose an alternate, perhaps a more scenic route and asked if she would like to visit my 91 year old great-aunt. 

          Aunt Trudy has ALWAYS been active.  Over the years she has become hard of hearing, but she is still sharp as ever with brand new driver’s license in hand.  She was so excited to see my mom and me (as it has been a while) and we visited just briefly.

          “Well, it was so good to see you,” my mom kept on saying – as though we’d be leaving fairly soon.  What was her problem?

          Aunt Trudy would ask a question which mom would answer – but in her quiet voice and then I would loudly repeat it for Aunt Trudy.  Mom excused herself again.  “Well, I need to get back home.”

          “What do you need to get home for?” I asked.

          “I just need to go home!” she yelled.

          “I guess our visit is over,” I said to Aunt Trudy, while trying my hardest to use an apologetic tone and expression.

          It hadn’t dawned on me until almost three hours later that my voice raising or yelling was the cause of what was bothering mom.  Corey confirmed that when he said she didn’t like loud noises.  That would explain the tension between her and Jenna – though all of us have complained that Jenna’s volume really can get too loud.  Our level of tolerance seems to be more civil than my mom’s. She gets frailer with each passing day.

          Daddy was frail before he left this earth.  But he still had his mind.  Mom’s physical condition is okay, but her mind is not.  That’s a lot harder, I think.  On us anyway.  I think it’s hard on her – but not the same way that physical pain is. Soon she’ll forget that there was any emotional pain.  She’ll resort back to a place where we just won’t be able to find her.  Often she already thinks that I grew up with her in San Francisco and is always surprised when she asks me and I tell her that I have never lived in San Francisco, only visited.

          I need to visit Aunt Trudy again – but without mom or with mom on one side of the room and me on the other.  I think I ought to invite Kayla and her two to come with me.  I don’t know that Aunt Trudy has ever seen Garrett.

Who Are You? and Can You Stay?

          Dementia is a thief which robs the mind and interferes with the souls of all associated.  Last week mom was living in another world for the most part.  This weekend hit hard.  The way it’s been described to me, it sounds like she lost was between worlds – panicked at not being able to communicate.  Just not getting a grasp on anything.  Being transported to another dimension is bad enough – the “between worlds” thing is worse overall – at least from my viewpoint.

          Probably all of us, at some point in our lives, have seen the child that just isn’t understanding direction and becomes more and more frustrated with himself or the instructor or the other kids or what have you.  He throws a tantrum and won’t allow himself to be rational.  And the harder we try to explain or understand, the more irrational the child becomes. That is what the “between worlds” is like.

          Even before the Dementia set in, mom seemed to favor Corey over the rest of us – not that she meant to (or means to) but it just seems that way.  And now with the dementia, it seems much of her world revolves around Corey who is able to get her to do things (even over the phone from another state) than the rest of us have.  But evidently I became the favored one on Saturday.  She was in a very confused place and couldn’t seem to get out of it.

          Sunny had dropped off a small bag of items that she wanted me to have.  The idea was for me to retrieve it from mom’s house on my next visit.  But mom had it in her head that the bag needed to be in my possession RIGHT NOW.

          When she couldn’t get a hold of me by phone, she decided that she would walk to my house.  One does not walk to my house from hers – not unless one wants to make a day of it.  (I's about 20 minutes by car in regular traffic) She’s been to my house twice – but always with somebody.  She didn’t know where I lived before dementia robbed her of her memory.  She doesn’t even recognize the city name when I tell her.

          But for convenience, her mind has moved many into her neighborhood – often just up or down the street.  As she left the house, my nephew-in-law followed to make certain she didn’t get lost.  I don’t know if she ever found where she thought my house was.  I’m thinking not.

          Nate and Ellen had a dinner appointment with my youngest son and his wife – but because of “grandma’s” strange behavior, they didn’t want to leave her alone.  And so Ellen called Sunny and told her about “grandma’s” strange behavior and how she was a bit concerned and freaked out at the idea of leaving her alone.  And so Sunny and her two youngest stayed with mom while Ellen and Nate went to dinner.  Sunny said my mom talked about me and my visits and was very anxious about seeing me again but couldn’t get a hold of me (mom had finally gotten a hold of me before Nate and Ellen had gone to dinner; we had talked for a few minutes)

          Her mind was still quite distorted the next night when she called again.  She misdialed and had meant to call Corey, whom she thought was having car problems and was quite worried about him.  I knew she was frantic and too far away to calm her down. 

          I called Corey to ask if mom was worrying for nothing.  He said he was on his way home and would be to mom’s in about ten minutes.  I called her back.  She was so relieved – like the child who has been missing her tangible security (a blanket, a toy) but finally gets it back.  I still wish I could have embraced her in person and not just over the phone.

          The thief took a vacation only a few days this week – I had hoped for something more permanent, but knew that is all it was.  A HOPE.  And I don’t know what makes her personality change from visit to visit – the distorted mind last week, the turmoil and frustration set in her own mind this weekend, and the still forgetful but almost normal yesterday and the day before.  Even this afternoon over the phone – but not in person.  The theif returned.  Dementia hasn’t robbed only her – it’s taken from all of us.  I want dementia behind bars PERMENANTLY!

Losing My Mom to Dementia

          I go to my mom’s twice a week to make sure she is eating lunch and learning that she doesn’t always have breakfast.  I didn’t know how we would introduce her to the idea of taking in a stranger (a companion who would help us watch her) but perhaps the idea may appeal to her if we introduce her as permanent company – so that mom won’t be so bored. 

          Corey is on vacation this week.  My niece leaves the house at six.  I am not certain of her husband’s hours – but do know that he’s not always there – which is understandable.  Ellen and Nate are a newlywed couple and shouldn’t even have to face this dementia challenge while starting out their life together.  But mom had invited them to stay.  And so even though mom has people living with her, she is still often left alone – and actually does get lonely.

          Four to six months ago she didn’t seem to have a problem with it.  Said she preferred it.  Liked being able to spread her wings without her children’s interference.  Now, for the most part, at least into my ears, she has admitted being bored.  To cure that boredom, she often goes shopping – which is fine if somebody drives her – but she is not always coherent enough to even remember where she’s going or how far it may be.

          This Tuesday I was late getting to her house – which wouldn’t have been that big of a deal if Corey had been home.  Actually – mom’s car was there when I arrived, and since she can’t drive it herself, she has allowed Nate to take it.  So he was there.  But he was in the basement.  She thought she was by herself. 

          I had called to tell her I’d be late.  And she waited for me.  I had some errands to run and took her with me.  She was really disoriented.  She hadn’t eaten.  We ate lunch at 12:30.  And we went for a drive.

          She had no idea where we were and kept on asking, “Now where are we going?”  I could have said Mars and she would have continued to ask me.

          She did enjoy the ride for the most part – but my car does seem to make dysfunctional noises – especially when going over a bump or pothole in the road.

          “What was that?” she asked me.

         

          “My car was in an accident a while back, and ever since it has made that noise.  Kind of sounds like I have a body in the trunk,” I joked.

          Great.  The one thing that she remembers.  Every time it made that noise she would ask, “Do you really have a body in the trunk?  Sounds like that body is still back there . . .”

          I had to stop off at the bank.  She had wandered off – Not only did she not know the area, I was afraid she wouldn’t remember how she got there that she was with me.

          After we returned to her house, she opened her mail.  There was an ad from Shopko (a variety store) and she decided that she must go to see what clothes were available. 

          Shopko is not far from her house – and she has walked there.  She has also come out of Shopko and left in a direction that does not lead her home. 

          I HATE leaving her alone.  And because of her comment about Shopko, I pointed to my own blouse and said, “I got this at Wal-Mart.  You have looked at the clothes at Shopko.  I’m pretty sure it will be the same selection as they had last week.  Why don’t I take you to the Wal-Mart near Jenna’s school, and we will just pick her up before I bring you home?”

          In the event that Nate returned while we were gone, I left a note that mom was with me.  She looked with interest at some things and disapproval at others.  She ended up with two blouses – which I don’t think she needs.  But at least I could watch her.

          Picked Jenna up and she was so excited to see her grandma.  And that made my mom feel good – for that moment.  I drove mom home.  She was exhausted and I figured she was too tired to leave the house again.

          On Thursday I arrived early.  She was at the house by herself.  She hadn’t eaten yet and so we had a fast food breakfast.  I should have taken her to a senior day care – she was dead set against the idea four to six months ago.  Perhaps she’d be more receptive to the idea now.

         There have been times when she's asked my two year old niece to go walking with her.  Oh, there's a scary combination.  We've learned to hide Anna's shoes so that we can say to mom that we can't find her shoes and she can't possibly take a walk without them.

          She said she wanted to go for a walk the other day..  I thought she meant around the neighborhood.  She decided that we would go to Sam’s Club.  The road is under construction.  I tried to discourage her from going – but she was determined.  I said the sidewalk was closed.  She said she was aware that the sidewalk was closed and that we could walk in the right lane of the road because “that is what it’s for”

          My eyes bulged as I tried to dissuade her, but struggled on nonetheless so that she wouldn’t be alone.  As we got closer to the store, she asked why we were going to Sam’s Club.  I told her that we were having a walk and that we should have just stayed in her neighborhood.

          “Well, let’s just look around while we are here.”

          As we approached the doors, she found amusement in watching two seniors pointing here and there and asking each other where they had parked.

          “They don’t even know where they parked,” she said.

          I found it ironic that she was seeing humor in a situation that has been part of her life even before the dementia.

          She said she didn’t need a cart.

         

          “That is good,” I said.  “Because whatever you get has to be carried home.”

          “Why?” she asked.  “We drove here.”

          “No.  We did not drive here.  We walked.  And I’m not even wearing decent shoes to walk in.”

          “We walked?”

          We’re not even in the front door yet. 

          At least she felt warn out again.  We both took naps.  I wasn’t happy about leaving her.  But I have to be home when Jenna returns.  And I need to start dinner for Roland. 

          We need to find a trustworthy companion.  Someone who is willing to watch out for her in exchange for room and board and meals.  And if she drives, she’ll have thirty or so restaurants to choose from.  Mom does enjoy going out for lunch.