Wednesday, January 30, 2013

"I'm Not Dead."

 "I'm not dead."  "I feel happy.  I feel happy."
Monty Python and the Holy Grail, 1975

Why does it feel like my mom has died?  She most certainly hasn't.  In fact, today she was quite coherent and happy to receive my phone call.  She said she was really grateful I called because even though the people at her new home are very nice, it's not the same as when your own family members call or visit?  She even remembered an incident that occurred last summer that I really thought she wouldn't remember.  She sounded good today.  Still wants to go home, but she sounds like she's adapting.

I think part of why it feels like she's died isn't so much to do with who she's become but because I'm spending so much time lately poring through her journals, looking at old photos, and dealing with her mementos.

This picture hung Mom's bedroom for many years:

It is now hanging in mine a few hundred miles away from where Mom lives.

I think Mom and Dad got the painting as a wedding gift, if I am not mistaken.  From whom, I don't know.  I see no sign of it in Mom's wedding gift registry (yep, I have that, too), but I feel like one of her San Francisco friends (where Mom grew up) gave it to her.  Perhaps I'm wrong.

It hung in Mom's bedroom for many years.  Then she moved it downstairs and replaced it with an old family photo.  Anyway, as the house has been prepared for cleaning, I asked if I could have it.  I don't know if anybody else cared.  But I'm glad it's hanging in my and Jonah's room and that when I wake up I can see a picture that will always remind me of Mom.

Just below it is another memento that has hung in Mom's room since 1977:

That's my hand.  I made this for Mom in elementary school.  I don't know if it's always lived in the same place, but it hung in her room for years and years.  Right below it was a nearly identical one my younger sister made a few years later.  It's still there as far as I know.  Mine now hangs in my bedroom.

It feels both right and wrong to have it here.  It really should be in Mom's room.  But then so should Mom.

As I was leaving Mom's house to come back home, my sister-in-law suggested I make a video recording of the house before it all changes for good.  I did.  It will never be the same again and if we're to pay for Mom's future care, it likely won't be in the family for relatively much longer.

I was noticing that one of the oldest pictures in the house was hanging to the newest.  This picture has been in Mom and Dad's house almost since the beginning:

Sorry.  It's not a great photo.  It was cropped from an old photo from the 70s.  I think my dad's parents may have even given this painting to them as a housewarming gift.  I'm not sure.  All I know is it's been in our living room almost as long as the house has existed.

It was painted by an artist named O. Yeline.  I think several prints exist of the painting, including my mom's.  It's called Swiss Chalet.  And based on my search online, this may have been the only work he did.  I found one selling on eBay for $80.00 (although it doesn't look like anyone purchased it).  I also found one that sold for $9.99.  I think it was a fairly common print when the one my mom owns was originally bought.

It's actually not my favorite painting in the world.  It's also rather large.  I thought about asking if I could take it, but not only doesn't it fit my personal taste, but it's too large to really put anywhere in my house.  It's also faded, scratched, and has some stains on it.  It's outdated.  But it reminds me of home, and I will miss seeing it.

Next to it was a set of framed photos Jonah and I had given Mom just this past Christmas.  I was sad she hadn't gotten to enjoy it longer, so I took it to her new home and hung it up with the other many photos my family had taken over there.

I guess change is part of life.

I found an interesting entry in one of Mom's journals, dated November 10, 1986.  Mom's original grammar and spelling are basically intact.  I have included some punctuation, however, for clarity (Mom wasn't very fond of periods for some reason):

            "Yesterday in Relief Society we had a lesson in death in the plan of eternity and how we as survivors deal with the death of a loved one.

            "Not because I’m going to die soon or anything but I feel the need to write a few of my thoughts down.

            "Of course death is eventuall.  Everyone is born & everyone dies.  When we are born we are leaving loved ones to go to other loved ones.  When we die we again are born again and return to loved ones.  It is hard to see our loved ones go but we are also glad for their continual growth whether it be off to school, college, marriage, a new job or a mission and we are happy for them.  It is hard to be separated from them but I guess it isn’t so hard because we can still write or call but then not always as we look at people missing in action in the war or runaway children where we don’t know where they are.  At least in death we know that they are in a beautiful happy place.

            "I guess death is hardest on the living.  They tend to blame God, or the person who died.  They can’t understand why they were chosen to deal with this death of a loved one, they are numb, they don’t want to accept that this has happed.   Perharps Perhaps they even blame themselves.  “If I had done thus & so” they say.  Forget it!!  Everybody spends so much time regretting this & that.  It happed now pick yourself up and get on with life.  Don’t blame yourself or me and don’t blame God.  Stay close to him and live by his guidance.  I would hope you would let me live on in you and that you know I love each of you for the “special” (I know you think that word is overused Keith) person you are.  Always love and help each other and do the best you are capable of.  I must go to work but perhaps I can write a special letter to each of you later."

I do love the lines,  "I would hope you would let me live on in you..." and "Always love and help each other and do the best you are capable of."

Words from a wise woman.  A very much alive woman.

Tuesday, January 29, 2013


Surprisingly, today's post has nothing to do with my mom.  Instead I would like to write about a friend of mine.  I have written about him before here, here, and here.

My friend went to prison about five years ago for a foolish mistake that took a man's life.  He has changed his life while incarcerated.  He is a better person, has been sober for quite some time, and has become more responsible....I thought.

During the last few months, Jake has been on a work-release program working a job as a waiter as well as serving as artistic director for a local community theatre company.  During this time, Jake has worked hard and was in the process of transitioning to house arrest.  Jake was going to move in with Jonah and I.  We have put in time and money into helping him get situated here and made him fully aware that while we are his friends, we would tolerate no screw-ups.

One things Jonah and I have worried about is that as Jake has gotten more freedom, we feel like he has gotten a bit more cocky.  Jake has always been one to skirt the rules and cut corners, and we were concerned that his pride and impatience at not being a fully free as he would like to be would cause him to do something stupid.

Apparently, he has, although we do not know any details at this time.  All we know is that last night the police came to his workplace and took him back to the prison.  He has been charged with a felony, although we do not know what he did specifically.

We do know that he did not abide completely by the rules.  We know that he was only to go to work and the prison, and we know he that he went to other places.  We also know he was caught with an iPad, which he wasn't supposed to have.

Needless to say, we are very disappointed in Jake right now.  Jonah just paid $250 (which Jake is supposed to reimburse) to pay for his ankle monitor; I paid to have a landline installed in our house because that was one of the requirements; our house has been inspected by the police to prepare for his move, and we have vouched for Jake; I was going to have to give up my mouthwash because there can be no alcohol (including mouthwash) in the home; we have moved much of his stuff from storage into our house and the extra rent money he was going to provide would have been useful.

Aside from any sacrifices and inconveniences, none of that really matters; we are just disappointed that his impatience has probably landed him back in prison for another couple of years with little chance for parole.  Like I say, we don't know any details and until we do, I can't really judge the situation.  But if my friend has slipped up because of his inability to abide strictly by the rules that govern him, it really upsets me.

He was so close to being free.  He would have had probably a few months of house arrest, and then we would probably be on parole for a bit, and then he would be free.  Instead he now likely faces two more years of incarceration.

I wish I were surprised.  Jake thinks rules are inconveniences and are meant to be broken.  Sometimes I wonder if he thinks this is all a game; that somehow he's entitled.  His actions caused a man's death and a family's loss.  I wish he would take his sentence more seriously.

It's very disheartening.  Jonah is especially upset.  He was very upset today - more upset than I have seen him.

Anyway, I don't know what's ahead for Jake, but I am feeling very disappointed in him right now.  I hope it's all a misunderstanding, but I fear it is not.

Anyway, that's what's up.

As for Mom, she still would like to go home, but I feel she is starting to adapt so I am grateful for that.

Sunday, January 27, 2013

The Sad Tale Of Dominic

I've decided to scan and transcribe Mom's journals so that my family and I will have a written history of her life.  It feels weird to be reading Mom's journals while she's still alive.  I hope she doesn't mind.  It's good therapy for me to read about Mom's life.  I'm in a period of mourning, and reading about her life from her point of view when she was still "with it" is helpful.

She wasn't doing very well today.  Very confused and incoherent.   It's days like this that make me very glad she's being taken care of where she is.  I feel a sense of sadness, though.  Even though she's being well taken care of where she is, I just wish she didn't have to spend the remaining years of her life in a home.  It isn't what she would have wanted.  It's what she needs, but it isn't what she would have wished.

I also am sad to watch everything she worked so long and hard to build be sucked away to pay for a home she doesn't even want to be in.  But such is life.

As I've begun transcribing her journals, I am trying to copy what came from her original hand - spelling and grammar errors included.  The editor in me would like to correct some of that, but I think it's important to keep her words as she originally wrote them.

I just picked the first journal I saw.  It happens to be about our trip to Europe in 1994 right after she picked me up from my mission.  It's fun to read and also fun to see what was important to her on the trip vs. what I remember from it.

One thing she commented on was a tour we took at night in London called Bus Trip to Murder which took us around to the scary parts of London or the areas that dealt with murders or ghosts.  It was interesting that Mom commented about our tour guide at the time because I remember him very well.

He was young actor (he would have been 22 when we met him) who did these tours as a side job.  His name was Dominic and he had recently been in a TV movie portraying the younger version of a character played by Michael York.  He was charming, funny, knowledgeable, charismatic, and, in Mom's words, "delightful."  He was a great tour guide.

As I read about our trip, I was curious what might have become of Dominic.  In this Google age, I figured it wouldn't be too hard to track him down, especially if I could just find the name of the movie he had been in with Michael York.

Sure enough, I found him pretty quickly.  I found out his name was Dominic Knutton (we never knew his last name at the time).  The first thing I found out about him was this article.  As I read it, I thought, "Oh, that's cool!  He became a director and started his own theatre company.  Good for him!"

My joy soon turned to sadness when I came upon this obituary.  I guess he committed suicide in 2008.  I didn't even know the guy, but felt a strange sadness for him.  He really did leave a positive impression on Mom and me when we took that tour 18 years ago, and I just felt sad for the loss of such a delightful person.  In a pre-Google age I likely never would have ever known what happened to Dominic.  I didn't know him other than that one brief night, but I'm sad that he was in such an unhappy place at the end of his life.

Here's to you, Dominic!  Wherever you are, I hope you're happy.  Thanks for entertaining my mom and me one lovely March night in 1994.

Saturday, January 26, 2013

The Power of Music

I find it interesting that my sister wrote a post on her blog with the exact same title I had planned for mine.  But like she said, there can be more than one post in the world with the same title.

I had talked in this post about how Mom and I had been playing a game of Trivial Pursuit.  One of the other questions was "What airplane did Shirley Temple sing about in the 1934 film, Bright Eyes?"

The answer was "the Good Ship Lollipop."  Mom has always been a big fan of Shirley Temple.  She loves so many of her movies and pre-dementia, she would have had no problem answering this question.  But this evening she did not know the answer.

I decided to give her a hint and started humming the song.  I could see Mom's eyes register recognition and she even mustered a few lyrics from the song and finally was able to come up with the title.

It reminded how powerful of a tool music can be in assisting the memory.  Sometimes music can reach a person in a way that other means are unable to do.  I started singing a song to Mom recently (I can't even remember which one), but she knew all the lyrics started singing them herself, so I let her finish unaided.  And yet, she no longer remembers the name of the city where she has lived for nearly 52 years or how her own mother died.  I find that fascinating.

My younger sister grew up with a developmental disability that made it hard for her to retain information.  My mom would spend hours and hours with her helping her study, and one of the methods she used that helped my sister greatly was creating songs to help her remember stuff, and that seemed to help a lot.

I remember a physiology class I took in college.  I remember very little of what I learned in it, but I do remember that the word coalesce means "to come together" because my friend and I used the Beatles' song, "Come Together" as a mnemonic device to help us remember the definition.

The song "Our House" by Madness always makes me think of waking up in my brother's bedroom, which I was sleeping in while he served a mission, because I had fallen asleep with the radio on, and that song was playing when I woke up.  I was walking through a market in Belgium with my missionary companion the first time I ever heard Whitney Houston's version of "I Will Always Love You."  Those are just a couple of examples of music being tied to very specific memories.

I think music transcends verbal communication and can speak to our hearts and minds on a whole different level.  I remember watching a ballet and hearing the music and being brought to tears for no reason than that the beauty of the music spoke to me in such an emotional way.  Samuel Barber's "Adagio for Strings" always makes me cry even though I associate no particular sad thought with it.  It is just a powerfully sad piece of music.  Likewise, ABBA's "Dancing Queen" always makes me feel so happy.

I may have said it in this blog before, but if I had to choose between going blind or deaf, I would choose blindness.  I could get along without seeing, but I would find it very difficult to get by without music.

When researching different memory care units for my mom, one of them sent me power point presentation which included a fascinating video on reaching Alzheimer patients through nontraditional means.  I find this video absolutely stunning and amazing:

It's really amazing what music can do.

I like this one, too:

As I was driving the big rental truck with some of Mom's stuff in it back home, I was listening to the only CDS I had which were a bunch of Barry Manilow compilations given to me by my brother-in-law.  Some of Barry's songs seemed more poignant and sad to me given Mom's current situation.

One song I like of Barry's is called "When October Goes."  The music is by Barry Manilow set to some old lyrics by Johnny Mercer, one of the great songwriters.  It's a sad tune.  I don't know Mercer's original intent, but as I really listened to the lyrics, it seemed to me to be about getting older; of one season ending and another beginning.  It seems October represents a season before it gets cold and everything starts to die.  It just made me think of my mom and how the youthful season of her life has ended and the season that leads to death, whether slowly or quickly, is upon her.  And it made me think of how hard is sometimes is to "let October go." 

Maybe that's not what the intent of the song originally was, but that's what it means to me.  Here are the lyrics:

And when October goes
The snow begins to fly
Above the smokey roofs
I watch the planes go by
The children running home
Beneath a twilight sky
Oh, for the fun of them
When I was one of them

And when October goes
The same old dream appears
And you are in my arms
To share the happy years
I turn my head away
To hide the helpless tears
Oh how I hate to see October go

And when October goes
The same old dream appears
And you are in my arms
To share the happy years
I turn my head away
To hide the helpless tears
Oh how I hate to see October go
I should be over it now I know
It doesn't matter much
How old I grow
I hate to see October go

It's hard to let your loved ones go into that season, wanting to help them, but feeling helpless at times.  I was a sobbing mess as I listened to it, knowing that things will never, never be the same for my mom again...or for us either.
A family friend who is advising us on some legal matters that may potentially save some of Mom's assets wrote the following to me:
 "Here my thoughts.

"First, accept that things are happening that you can't change, and then ONLY stress about deciding on the things you have power over.

-Your mom needs to be in a care facility
-She won't respond like she did before, ever
-Your role, and that of your siblings has changed from your mother's children, to your Mom's caregivers. She's totally dependant on whatever you do, and nothing will come "back to you" from her as the parent she once was.
-Plan on getting NO inheritance so long as she is in the care facility (this info you are sending me seems like an amazing exception to this)

"What you have power over
-The facility she will be in
-How much time you will spend visiting her - even though she probably won't remember your visits or even you
-Can you save some of her money as an inheritance and STILL provide for her fully? This option from Callister seems excellent. I know this firm by reputation and trust them. Even if it costs you a bit, its all money you would never get. I say do it.
-Acceptance of your Mom's condition and that she will soon, if not already, forget who you are.

"These are difficult times for you. I love your Mom. She's special to me both as a person and as an old Cub Scout Den mother. I know what you are losing. Just know that this is the time of life you are in, as is she. My mom is also starting to decline and lose her memory.

"Hang in there. All the good parts of you have a lot to do with her gifts to you over the years."

I appreciated his thoughts and words of counsel.  You could tell he was sending them as a concerned friend and not just a lawyer.  And his words help put things in perspective.
Mom still wants to leave.  Probably will for a long time.  I hope she can adapt and find happiness with where she is.  It's a challenging road we walk these days.  10 years ago I never would have fathomed we'd be where we are today.

Wednesday, January 23, 2013

Two Steps Back

Well, today I was the mean son again.  Mom tried everything she could to get me to take her home: guilt, pleading, bribery, persuasion, logic, threats, etc,  She said if I really loved her, I'd take her home.  Little does she understand that it is precisely because I love her that she is where she is. 

She said she could come live with Jonah and me.  When I said that wouldn't work, she said I could just drop her off at her home on the way to my house.  When that didn't work, she said she'd get my sister and her husband to let her live with them.  ---sigh---

She said we were all mean for making her stay there and said she thinks she's just going to sneak out one day.  I told her to please not to and later told the attendant to be warned that Mom was planning her escape.  I'm so glad there are two doors with coded locks she'd have to get through to escape.

Mom says there's nothing wrong with her.  It's so hard to reason with somebody who neither recognizes the problem they have nor has a clear grasp on reality.

She tells me her memory is fine.  I ask her what city she lives in or whether she remembers being in the hospital.  She can remember neither.  I say, "See, Mom, this is what I'm talking about."

When I tell her I'm going back to my home and that my niece and nephew are moving out of the house, and therefore, she'll be alone, she says there are other people she lived with (there aren't.)  I tell her they aren't there either.  She doesn't care.

When she asks how she got here, I tell her about the hospital again.  She asks who brought her here.  I tell her it was my younger sister.  "Yes; she doesn't like me."  I've never heard her say that about my younger sister ever.  My sister adores my mom and has always had a good relationship with her.  But today, Mom seriously thinks she's out to get her.

I play Trivial Pursuit with Mom to take her mind off of escaping.  One of the questions is, "Where was the first atomic bomb detonated?"  The answer is "New Mexico."  But Mom thinks and says, "It's where [your brother] lived, up in the hills."

"Sandy [UT]?" I ask.

"No, it's where he used to live.  During the war."

"What war, Mom?"

"World War II?" she guesses.

"Mom, [Patrick] wasn't even alive during World War II.  You were a little girl when that war ended, remember?"

She looks puzzled.  "Yes, but [Patrick] is older than me," she responds.

I'm feeling very glad she's in this place.

"Mom, [Patrick] is your son.  You gave birth to him.  He came out of you.  You're older than him."

A look of realization comes across her face.  "Oh, that's right." 

By this time she has forgotten what the question even was.

Jonah and I think it would be so fascinating to see the world as Mom sees it.  The thing about dementia is that Mom's reality is just as real to her as mine is to me.

Yesterday was such a good day for her, but today, as I feared, she is not doing as well.  It's good she's where she is.

I talked with the staff today.  We might be able to get her moved to another room.  I looked it over; it's slightly bigger, has a better view, and isn't right next to the kitchen.  If it isn't too much of a hassle and if there's no charge, I'd like to move her.  I think it will be better.

Mom wanted me to take her basket of clothes to her home with me so it will be there when she gets out.  When I again implored her not to try any escapes and said it would be dangerous, she told me she thought she knew how to get home and described the way she thought she would go.  There's no way she'd ever find it.

I can't blame her, but I sure hope she starts getting used to staying.  I hope she starts enjoying it.  She's says it's boring, that there's nothing to do.  She had the same complaints at home, and frankly, I'd rather her be somewhere where she is well-monitored.

I said goodbye for the last time in a while.  I'm heading back home tomorrow.  The weather may be a bit dicey.  I'm hoping not.  I kind of wish yesterday had been our goodbye.  She was much more pleasant.  That would have been a nicer memory to hang on to.

My brother no longer wishes to serve as trustee over Mom's trust.  It's gotten too stressful for him.  I called Mom's attorney today.  He'll draw up a document relieving my brother of his duties and putting me as the new trustee.  I wish my brother weren't so stressed by it.  It would be easier for him to do some of the trust duties in Utah than it will be for me in my state.  But I don't mind doing it.  I'm a bit of a control freak anyway; I think I'll be better suited for it than my brother.

A family advocate put us in touch with a lawyer who claims he can save some of Mom's money from being used before Medicaid takes over.  I'm not sure how this is possible.  It seems those who approve Medicaid are pretty thorough about penalizing anyone who tries to circumvent the system.

I am intrigued, however.  I'm interested to see what he says.  I wish I could stay in town longer to talk to him face to face.

Anyway, that's where we stand.  Perhaps tomorrow I'll share the story of the Miracle of the Elliptical Machine.

Tuesday, January 22, 2013

At Last, A Good Day For Mom

I'm getting ready to go back home to Jonah.  I canceled my flight and am renting a truck from Penske instead.  Not exactly what I wanted to do, but Mom and I co-purchased an elliptical exercise machine, and it's clear she won't be using it, so I'm taking it back home along with some other stuff.  Most of the stuff I'm taking is Mom's personal papers (journals, genealogy, school and childhood mementos, love letters my dad sent her when he was in the Navy (what a treasure to have those - who knew Dad could be so flowery and conversational?  I certainly didn't see much of that growing up.  lol), letters from her mom to her, etc.

I'm also planning on taking our old reel-to-reel home movies and my grandfather's slides.  I just want to preserve my mom and dad's histories.  I hope to scan Mom's journals and other papers and put them on disc so my siblings can have them.  I'm sure I'll discover some interesting things.

It looks like I'll be leaving Thursday - Friday at the latest - It looks like the weather might turn during the weekend, and I certainly don't want to be caught in anything in a huge truck.  Besides, I have a job interview on Tuesday, and Jonah is lonely, and I miss him.

I've been on the phone quite a bit today trying to deal with legal matters and Medicaid stuff.  A family advocate referred us to a lawyer who feels he can save some of Mom's assets from being taken by Medicaid.  I'm not quite sure how it works, but it might be worth looking into.

I did some more cleaning today.  No matter how much I do, it looks like I haven't made much of a dent.  Still, each thing I do is one less thing another family member has to do. 

I also want some of the photos.  My sister is currently scanning them but said I could have the originals nobody else claims.  Just what I need, more stuff.  lol

I wish I was happy with just a digital image, but actually having a tangible photo is important to me.  It makes me feel more like I'm touching the history of it.

My sister and I took some boxes to a local charity organization.  We had some nice alone time, too, so that was nice.

I had hoped to visit Mom earlier in the day, but my nephew had Mom's car.  My sister offered to let me borrow hers, but I passed.

My brother and sister-in-law invited me over for dinner.  I visited Mom first.  She was actually doing very well today, which was nice to see.  When I came in, the residents were just finishing dinner.  Mom wasn't around.  One of the aides saw me and told me Mom had been sitting in the empty seat, ate her dinner, and quickly skedaddled. 

I said, "Yeah, she'll probably be like that, at least for a while."

The aide and the nurse (I think) told me the ladies Mom had been sitting with liked her and that they and Mom had been social and that they would try to put Mom with them more often.  I thought that was nice of them to look out for Mom like that.

When I entered Mom's room, she was standing up and actually seemed almost her normal self.  She was quite coherent and "with it" today.  Almost felt like old times. 

I had brought a set of pictures of Jonah and me in a large frame.  I had given it to her just this past Christmas and wanted her to enjoy it more than just the short time she had.  She asked me who the baby Jonah and I were holding was.  I said it was my nephew.  She said, "Oh, yes."

I put the frame up and she helped me.  I also brought her a journal.  She used to be really good at keeping a journal, and I have even found journal entries as recent as last year, so I told her it might be good therapy to write about how much she hates the place and how horrible it is. 

She said, "Oh, don't worry, I will."  I suppressed a smirk.

If she does write in it, I think it will be good for both expressing her thoughts and keeping her mind active.  And it might be an interesting read once she passes.

I try to keep her mind busy when I'm there.  We played Trivial Pursuit yesterday.  She used to be really good at it.  It used to be one of our favorite games to play together.  She kind of sucks at it now.  Can't remember anything.  I thought for sure she'd remember that Gary Cooper was the star of High Noon, but nada.

But while she can't remember a lot of answers, her mind is active when she's reading the questions, which she does quite well.  And it does keep her mind working somewhat when she's trying to remember an answer.  I often let her cheat.  I'll give her clues or first names or relate the answer to something she may remember, and if she gets it, I let her have a wedge.  I always win, though.  But she has fun.

After I gave Mom the journal, I went to sit on her chair.  Her coat and purse and some folded clothes were there.  I moved the coat and purse to her bed and the clothes to the dresser. 

[Sidenote: when I was there yesterday, I saw that she had a laundry basket of nicely-folded clothes.  I said, "Oh, it looks like someone did your laundry."  She replied, "No, those are the clothes I'm taking with me when I get out of here."  I noticed today that they had been put away...either by her or somebody else.]

We talked about her dresser.  My younger sister has put little labels on her stuff so she'll know where things are.  Each drawer of Mom's dresser is labeled with what is in it.  She seemed to think that was helpful, although she was confused by why one drawer looked like it said "SODA" (it really said "SOCKS").  I said that my younger sister's writing just made the "c" and "k" look like a "d." 

"But wouldn't it be funny if that's what was in the drawer - soda?"

Mom seemed to think that was funny.

She also told me in great detail about a photo taken of her and a friend we used to work with together who has since become a locally-renowned pianist.  She said she had been at my sister-in-law's school, and the friend had been performing there and was surprised to see Mom there as she was the only one he knew.  He excitedly had his picture taken with her.

When I later repeated Mom's story to my sister-in-law, she confirmed that it pretty much happened that way except that it was at a church, not a school.  But Mom was very coherent and clear when she was telling the story, and I was happy she was able to recall so much.

Mom was very pleasant and cheerful and talked about how she and some of the other residents had gone outside today and that she had talked with one of the ladies, whose name she couldn't remember.  She also talked about my younger sister and her children visiting today, which they had (and I later found out from my younger sister that Mom had participated in a bowling game the residents played this morning and was laughing and having fun.  I had asked Mom if she had bowled today; she did not remember doing so).

We talked for a bit, and I said I had to go eat dinner.  Mom said she had already eaten, and I said, "Well, I haven't, so I should go."

Mom said, "Well, thanks for bringing the clothes."  (These are the ones I just removed from her chair and put on her dresser.) 

"No problem, " I said.  "Anything I can do to make you more comfortable."

Mom gave me a hug and a kiss and said she loved me.  No sullenness.  No guilt trip.  No pleading for me to take her home.  No asking why she had to stay there.  Yes, she had briefly mentioned hoping I would take her home before I distracted her by asking if her TV volume needed to be turned up, but when I left, she seemed relatively content and said she'd see me tomorrow.

She knows I'm going back home.  At least she did when I left.  I will miss her a lot.  I wish I could be here more while she transitions, but I know my siblings will take good care of her.

I was glad to see Mom finally have a pleasant day after a week of somewhat unpleasant ones.

I went to my brother and sister-in-law's house.  My brother and I discussed some of the Medicaid stuff.  He is stressed beyond belief.  I think he would enjoy it if I took over Mom's trust, which he currently oversees.  I am willing to if it gets to be too much.

My brother wonders if Mom will get well enough to come back home.  I think she could stabilize, but dementia, by its very nature, just gets worse.  I also think if she went back home, she would regress again.  Here in assisted living, she is being regularly monitored, taking her medications consistently, and being fed nutritious, regular meals.  If she went back home, she just couldn't receive the kind of care she is getting now and would likely deteriorate faster.

And today may have just been an exceptionally good day.  I've seen it happen before: one day she's great, the very next day she's problematic.

My older sister said she won't recognize her home as being her own anyway.  I think today she might have, but I think it's better for her health if she remains where she is.  And who knows, she may grow to love it.

The fact is, her dementia will get worse.  It just will.  She can be better taken care of where she is than we are currently able to do elsewhere.  I do want to get her room changed, if possible.  That kitchen is very noisy, and I think the noise agitates Mom.

Monday, January 21, 2013

The Past Three Days: Something Just Broke...

...and I think it's my heart.

There is nothing so heartbreakingly difficult as leaving your mother in a care facility and being able to make her understand why she can't go home with you.  That's what I experienced Thursday night.

I flew in for my audition on Thursday.  My sister-in-law picked me up.  She was down and depressed.  You could tell it had been a hellish week.  She was obviously emotionally drained.  She asked me if putting Mom in a care facility was the hardest thing I'd ever had to deal with.  Strangely enough, the answer is no.  Believe me, it's up there.  But I would still put coming out of the closet as the most challenging thing I ever had to do.

My sister-in-law took me to Mom's house and our neighbor from across the street came over and chatted with us.  My sister-in-law asked me if I wanted her to go in with me; she explained that Mom's room, in particular, was in shambles because of our rush to get her moved to the facility with her furniture.

I said, "No."  It was kind of something I wanted to deal with myself.

Mom's room was, indeed, a mess.  In the rush to get Mom's clothes and bedroom furniture and pictures to the facility before Mom got there, things had been dumped in boxes and baskets.  It was a sad sight.

I was really glad nobody was home.  I don't know where my niece and nephew were, but I was glad to have to go through this on my own.  It felt appropriate to me.  Jonah has been feeling bad that he hasn't been able to be here with me, but I said that somehow it feels like I'm supposed to deal with this alone - at least initially.

I pretty much immediately started trying to organize Mom's room somewhat.  It was like I was trying to preserve her dignity or regain some control.  I started throwing away anything that was absolutely junk and putting others things in a box to donate to charity and then separating things that might have value, either sentimentally or materially.  Mom isn't necessarily a hoarder to the extreme, but she has certainly accumulated a lot of stuff over the past 50 years, and much of it is, indeed, not worth saving.

As I was going through her stuff, it felt really wrong, and I thought, "If Mom knew I was going through her things like this and throwing away stuff she's collected over the years, she would be so upset."  Never mind the fact that she wouldn't notice most of it missing or that much of it wasn't worth hanging onto in the first place; it would still upset her.

Another feeling I had was, "Oh, my gosh!  I am my mom."  Whenever I came across something and thought, "Why the heck did she hang on to this?" I realized I save almost the exact same kinds of things myself.  Cleaning Mom's house is making me realize how much stuff of my own I need to depart with.

Still another feeling I felt was that this is what children do when their parents die; they clean their houses out.  In a way, it's as if my Mom has died.  And yet, she hasn't; she's very much alive in another building just 4 miles away.

Yes, perhaps a part of her has died.  The mom we all knew growing up certainly is not fully there anymore.  She's become very childlike and confused.  Her reality is altered.  She isn't and will never be the same.

And she's never coming back home.

That was the fourth thing I felt: Mom is never coming back here to live.  And in a way, it made it a little easier to throw some of her stuff away.  She's not coming back for it.  She's the only one who has any attachment to it.  She won't miss it.  Some of it she hasn't looked at or touched in years.

Soon my nephew came home.  I asked if he still needed Mom's car.  He said no.  So I decided to pay her a visit.

While I visited several assisted-living facilities before I left Utah, this particular one I had not seen yet.  I trusted the judgment of my siblings who said it was nice, more economical than some, and small enough that Mom wouldn't get overwhelmed by crowds of people or noise.  It's also secure, which we desperately need for Mom.

There are two sets of security doors at this place.  One leads into a lobby, and the other leads from the lobby into the dining and residential area.  There's a plate glass window in the lobby where you can see into the living area, and the residents can see out.  As I approached it, I saw the majority of the residents sitting at tables either getting ready for dinner or finishing up (I wasn't initially sure which).  Mom was sitting at one of the tables, and she glanced up and saw me and was so excited and happy to see me.

I went in and gave her a hug.  She said to the other residents, "This is my son!" and then literally pushed me towards her room, muttering, "I'm so glad you're here.  Let's get away from here; these women are driving me crazy!"

Her room is quite small, but I was really impressed with what had been done with Mom's furniture and photos.  I think my sister-in-law did much of it.  Anyway, it's nice.  They were able to fit Mom's bed, dresser, TV, TV table, and one of the chairs from her living room.  And there are photos from all around her house in the room including a set of me and my siblings arranged exactly the way it was in Mom's house.

I do wish the room were a little more spacious.  Actually, I wish the whole facility were a bit roomier.  It seems a little cramped to me.  Mom doesn't even have a personal shower (which maybe is good - that way they'll be sure she actually takes one).  Mom's room is also right next to the kitchen.  I hope maybe we can get her moved eventually because the noise from the kitchen is distracting to her.

I asked Mom if she wanted to play a game of Scrabble.  She did, and we did.  Meanwhile, "Project Runway" was on the TV in the background.  Mom does not watch "Project Runway."  It's one of Jonah's favorite shows, and he has even gotten me watching it, but I don't think Mom has ever seen an episode or would care to and yet, that is what we watched while playing our Scrabble game, and she seemed fine with it.

We talked for a bit.  She was very confused.  She said she just wanted to leave.  I tried to sell her on the place.  We took a little tour.  The dining / recreation area is designed to look like a 50s diner, and there are 3-D-type paintings of famous movie stars like Elizabeth Taylor, James Dean, Rita Hayworth, Marilyn Monroe, Laurel and Hardy, Annette Funiciello and Frankie Avalon, Lucille Ball and Vivian Vance, Dean Martin and Jerry Lewis, Audrey Hepburn, Katherine Hepburn, and Humphrey Bogart.  I thought that might appeal to Mom.  She's always loved old movies and movie stars.  I had her tell me who each star was.  She knew some, but didn't know others.  Five years ago she would have known them all, I'm sure.

In the recreation area, the TV room has a couch that is made out of the back end of an old car (actually, I think it's fiberglass, but it's made to look like a car).

The place is decorated nicely and is secure.  Again, I just wish it were bigger.  Many of the places I've visited or looked into just seem roomier.

When we got back to her room (she remembers her room number (#10) well), I commented on how nice her room looked.  She said it was all like that before she got there, and even though she certainly recognized the pictures as being her family, I don't think she connected the dots that everything in the room is actually her stuff.

We went through her clothes, and she said some of it wasn't hers; but of course, all of it is.  She kept saying, "This was already here.  This isn't mine," and I would point out the name tag on her clothes that had her name on it, and she would reluctantly agree that, yes, maybe it was hers after all.

I soon realized that Mom had not just been excited to see me because I was her son and because she missed me, but primarily because she thought I was going to get her out of that place to go home.  She was glad I had come because she didn't know how to get home from where we were.  She said she had no way to pack all of her clothes, but that she would rather just leave them and buy new ones when she gets out.  When she realized this was not to be, she just started sobbing and kept saying, "I don't understand why I just can't go home.  Why do I have to be here?"

It was devastating.  It really was one of the most heartbreakingly difficult things I've had to do in my life.  I just wish I could make her understand why it's safer for her to be there. I just keep trying to focus on the fact that she's safe and not alone where she is.  Trouble is, she feels very alone.

I went back to Mom's house and did some more cleaning.  It's funny what you can learn about a person by what they save.  Mom's mementos seem largely based around her family, friends, religion, and trips she has taken.  Old letters, Christmas cards, birthday cards, and Mother's Day cards from friends and family; photos; souvenirs from trips; some old school work from her children; old cassette tapes of recordings of family members; old church lessons and programs; a friend's graduate thesis; tons of genealogy papers; sewing supplies from her younger days; yarn and knitting and crocheting supplies; mementos from my dad and his and her parents;  tons of costume jewelry, clothes, purses, and hats; old coins my grandpa collected that were passed on to Mom when her mom died; lots of books; lotions, empty medicine bottles, and a ton of Rolaids and Listerine pocket packs; old bags and menus from an ice cream parlor she worked at (all of us kids did, in fact); and many, many, many, many notebooks and journals. (quite a few in which only the first couple of pages were written in).

Some of the more interesting things I have found:

a pair of my dad's old cuff links, which I remember him wearing
the 1978-1981 minutes from Sacrament Meeting and Priesthood meeting in the ward I grew up in (Dad was a ward clerk)
a rough draft of the letter Mom wrote me when I said I was thinking about starting a life with Jonah
a journal entry Mom wrote the day she lost her driver's license - both surprising and telling
journal entries that talked about her mom's death and my dad's illnesses
a card with the location of where my grandma's ashes were scattered
a picture of my mom in San Francisco when she was a little girl
a dinosaur I made out of clay when I was in elementary school
a photocopy of my dad's parents' wedding certificate
some old drawings my brother drew that hung in our kitchen for years
a letter Mom wrote Dad on their 31st anniversary
a tape with some songs I wrote and performed that I gave Mom for Christmas, I believe

Some stuff was easy to go through; other stuff, I thought, "Someone else has to deal with this box.  I can't deal with it right now."  It was too hard at times.  I feel like I'm surrounded by the ghosts of my Dad's parents, my Mom's parents, my Dad, and who my mom used to be.  Every photo or letter or journal entry or document or memento I take time to look at brings up their memory.  It's been a hard as well as sadly nostalgic task; but it's also been fun to stroll down memory lane, and I have been eternally grateful that the memories are more often good than bad.  I have come from a wonderful family, and I am grateful that even though each of us will die someday (some more slowly than others), that legacy will last forever.

It felt weird sleeping in Mom's house without her in it, knowing she's not going to be sleeping in it again.  It felt wrong.

Friday I had my audition for Les Miserables at Pioneer Theatre Company here in Salt Lake.  My nephew usually uses Mom's car, but said I could take it after he ran an errand.  Well, the errand took longer than he expected, so I was almost late to my audition and had to park illegally in order to make it on time (luckily, no ticket).

Funny, with all the chaos of dealing with Mom, I didn't even think about my audition.  I was prepared, but not very focused.  A couple of friends greeted me at the audition and said they were sorry about what and family and me are going through.

The audition went well, I felt.  I sang well and was asked to sing another selection.  Alas, no callback.  Such is the life of an actor.  I almost don't care.  I just feel like so much else is going on, I just don't have time to be concerned about it.

It is troubling that I don't see much in the way of employment opportunities in the future, and my unemployment benefits will be gone relatively soon, so I just wish I could find some work, even if it's not acting.

 I went and visited Mom when I was done auditioning.  When I got there, my younger sister and her little girl were there, and soon my sister-in-law and two of her kids (who looked thrilled to be there) as well as my older sister, her husband, and their daughter showed up.  In trying to cheer up Mom, my younger sister was trying to get Mom to see how great the place is and said, "I wouldn't mind living here myself."

"Don't oversell it," I muttered.

At one point, in an attempt to get Mom to be more social with her fellow residents, we sat down with two of them - a woman named Lula and a woman named Rita.  Lula is pretty severe dementia-wise, but Rita seemed about where Mom is, maybe just a tad worse.  What I'm learning in my associations with Mom's fellow residents is that it's not all that different than being surrounded by a bunch of first- or second-graders.

Lula kept pushing a folded up bib across the table like it was a game.  So there we were, Rita, Lula, Mom, my youngest niece and nephew, my sister-in-law, and me shoving the bib at each other as if it were a game.  Mom even joined in.  And I thought, "This is pathetic."  And poor Rita just wanted to drink her cocoa, and when Lula got a little aggressive with the bib hurling, she almost knocked Rita's cup over.  I cleaned up the droplets of spilled cocoa and tried to prevent the bib from coming her way.  She thanked me for that.  She seemed nice.  I'm hoping maybe she and Mom can develop a friendship.  She seems a bit more on Mom's level.  Some of these people are quite far-gone, it seems, and I feel bad for Mom because even though she's very confused, she's still aware enough to not have a lot in common with some of these individuals conversation-wise.  I did catch myself thinking, "It's no wonder Mom doesn't like it here."  Although I don't think Mom is aware enough to understand that everyone (including her) has a form of mental illness.  She probably just thinks people are strange rather than mentally "not altogether there."

I was glad the majority of my family was there.  It gave me a chance to slip out early.  Being the last one to leave Mom is the hardest because that's when she gets all mournful about her situation.  When she's occupied with other activity, she's more pleasant to deal with - not that she doesn't always have the overlying desire to go home; she does.

I had told Mom I was coming back that night, but had forgotten we had scheduled a family meeting to talk about where we go from here, so I didn't make it back to her that night.

The family meeting was mostly about financial stuff and practical stuff like what we do with her stuff and whether we sell the house or not and how we're going to pay for her care in the future.  It's uncharted territory for all of us, and it's a bit daunting.

I'm planning on renting a truck and taking some stuff back with me.  There is an elliptical machine and a fax machine that Mom and I purchased together, and I really want to preserve her journals and photos and home movies and stuff pertaining to her history.  We don't really have the room for it, but Jonah's and my house is the largest, so we have the best ability to take care of it.  What I'd like to do is scan her journals and have a digital copy, and then I can discard the originals.  But that's quite a project and could take a lot of time.

If I do rent the truck, Jonah may even fly down and ride back with me.  We don't really have the money to do that (or rent the truck, really), but it may have to happen.

I did not sleep at all well on Friday night.  The next morning I watched my niece while my younger sister went to visit Mom with my baby nephew.  My niece was really good.  It had been a long time since I had changed a diaper, however, so that was an interesting (but successful) challenge.

My niece brought me this old Fisher-Price clock that I played with as a child.

I kept turning the knob on it and playing the tune, a tune I remember learning in second grade and which has become very familiar because this old clock has been played with by all the grandkids:

"Ninety years without slumbering,
Tick, tock, tick, tock,
His life seconds numbering,
Tick, tock, tick, tock,
It stopped short
Never to go again,
When the old man died."

I remember when I first learned the tune, it always seemed so sad to meThis day it seemed even more so and somehow more poignant, especially each time the music got slower and eventually ran out.  I just kept mindlessly rewinding it.  And I was reading an old children's book that's been around the house since before I was born and was probably read by my mom and dad to my older sister and brother.  And I was reflecting on how many memories this house holds and how the things that represent those memories and the house that stores them will probably all be gone by next year, and it made me very sad.

It's been good for me to be with Jonah.  It's been good for me to be removed from the situation.  It has given me the opportunity to look at things with fresh eyes and renewed energy, and I no longer feel as emotionally attached to things and can be more objective than I was.  Certainly, the situation makes me sad, but I do feel I can be more objective and practical about things than I was when I was last here, and that's good.

I am actually surprised at how well I seem to be doing; my brother, sister-in-law, nephew, and niece are wrecks.  I am ready to let go of Mom's house and stuff, if needs be, whereas before I was really having a hard time with it.  But what needs to happen needs to happen, and we will likely need that money to care for Mom, and she's the priority.

Besides, each time I come back here, it feels less like home.  My home is really with Jonah now.  My one big regret is that I will not be here as much as Mom continues to deteriorate.  I want her to constantly feel my presence, and that will be harder now.  I can still call her, but it isn't as convenient.

Another thing I thought as I watched my niece was that it wasn't all that different from watching my mom these days.  It really isn't.

After my younger sister returned, my brother and I went to the bank to get Mom's accounts put in our name so we can write checks for her.  Mostly, I've been handling Mom's finances online, but we also need to be able to write checks from time to time and withdrawing cash from ATMs to pay her bills is not convenient.

Because much of Mom's money is in a living trust, and because my brother is a co-trustee, it should have been simple to assign his name to her trust accounts; it wasn't.  We were at the bank for an hour and a half.  And the sad thing is that we will have to go through this same process with all the companies Mom has investments with.

One thing I am extremely grateful for was that as Mom was declining, we had the foresight to get her power-of-attorney and trust documents in order.  Without that power, this process would be so much more complicated.  I'm also grateful my parents had the smarts to invest some money.  That gives us more to work with.  And I am grateful that Mom has been pretty good about saving and is debt-free.  I'm also grateful for my dad's parents for leaving him and Mom some investment money which gives Mom about $5,000 extra each year.  And I'm glad we've spent time preparing for this day.

Even with all that, I do foresee that Mom will probably outlive her money, and Medicaid will have to cover her expenses.  The good thing is that I believe the facility we have her in accepts Medicaid, so we won't likely have to move her when we reach that point.  Right now, I think we're good for a year or two (maybe a bit more depending on what we do).

I'm in contact with a Medicaid advocate, and I am hoping he can help us know what we're facing and what needs to happen to best serve Mom and ourselves (because when she dies, we will have funeral costs to cover (although I'm also glad Mom had the foresight to buy her plot, headstone, vault, and internment rights in advance; that will help)).

Even though our bank visit took a while and even though my brother looked very haggard, I told him that the bright side was that we got to spend some time together and really talk to each other.  We don't do that often.

My brother has not been sleeping well at all.  I think he is overstressed and so focused on the details that it's really affecting his health.  He's even come down with the flu, and he rarely gets sick.  I was talking about all the positives of the situation, and my brother said he really needs to learn to look at the bright side of things.

Anyway, one financial hurdle jumped; 97 more to go.

After our adventure at the bank, I took some clothes to Mom.  I was greeted with a sullen-looking mom sitting on her bed staring ahead.  She looked at me and said, "How did you know where to find me?"  I said, "Oh, I know where you are, Mom.  I know how to find you."

"Are you going to take me home?" she asked.

"No, Mom."

She started whining, "Why?  I just want to go home.  I don't understand why I have to be here.  I feel like my family has just thrown me away"

That sucked to hear.

I tried to explain to her that it's precisely because we love her that she has to stay here.  I feel Mom is slowly resigning herself to the fact that this is her new home, but with much annoyance and sadness accompanying that resignation. And she is very much clinging to the hope that she will get out.  I just keep encouraging her to make the most of it, but I also know if I were in her place, I would feel the exact same way.

Mom and I played a little bit of Scrabble, but there was a Bingo game starting, and I wanted to try to get her socialized with her fellow residents.  At my urging, she reluctantly joined the game, but seemed like she'd rather be getting a root canal. She did pretty well.  She was the first winner of "blackout" and won some sugar-free chocolates.  I could understand why she might be bored, though, too.  It wasn't the most fun I've ever had.

It's certainly a challenge, but we're muddling through the best we can. I know she'll adapt in time, and I also know based on her behavior and my conversations with her that we have done the right thing. There's absolutely no way she could successfully fare well on her own.  She hasn't consistently been able to tell me where she lives or even who she lived with, and details about her life and home are very muddy right now.  Not to mention, her full-time care has simply become too much for my family to handle; we've done the right thing, but it is soooo hard to watch.

I chose to leave just as they were serving dinner; that way, Mom was distracted.  I told her I loved her.  She said, "How much do you love me?"

"Very, very much."

"Then why won't you take me home?"

Daggers to my heart.

I tried to tell her that it is precisely because I love her that she has to stay in her new home. I don't think she was buying it.

I came home and did some more cleaning.  I made the mistake of listening to the tape I made for Mom.  There was a song on it I wrote for her.

I used to write music a lot and play songs on the piano.  I don't do it as much as I once did.  Mom would always ask me why I never wrote a song for her.  After all, I wrote one for Dad (never mind that it was while he was dying).

Anyway, I was compiling a tape for my family of songs I had written over the years and hastily wrote one for Mom as an extra bonus.  I enjoy the melody (which perhaps I will include here one day when I become more tech. savvy and transfer the tape to digital), but the lyrics are a bit clumsy.  I think I could do better.

But as I listened to this simple song, the words struck me as even more poignant than they were when I originally wrote them who knows how many years ago.  And as I hear these words, I start sobbing uncontrollably.  I feel such sadness for what was and what is:

For years
You've been asking me
To write you a song;
I'm sorry I took so long. 
I just want you to know
That I love you more than words can show.

I know there were times when I caused you some pain.
I know there were times when I practically drove you insane.

I love you.
You help me in all I do.
I don't know 
Where I'd be
If it hadn't been for you.

You've supported me,
You've encouraged me,
 And you've always been there when I needed a friend.

I never want to see the day
When you're not there for me.

I love you.
I only wish I could tell you just how much.
I don't know
What I'd do
Without you in my life.

There were times
When I abused you
And ignore your advice
Only to find out that I had made a mistake;
But now as I walk through my life,
Any advice you could give me I'll gladly take.

I love you,
And I never want you to leave.
I'm glad 
You're my mother,
And I'll never have cause to grieve;
For I know
That we can be together
This I believe.

For years
You've been asking me
To write you a song.
I hope that you liked this song. 

I wish you could hear the melody.  The words alone just don't quite capture the moment for me.

You have to know that even though today I may seem like a doting, loving, attentive, caring son, there were some years in my youth when I treated my mother very poorly.  Happily, those days eventually passed as I matured, and were well gone when I wrote this song.

For a good portion of my life, Mom was my biggest champion and supporter and my best friend.  I've said previously in my blog that my siblings call me "the Golden Child" because I seem to be able to do no wrong in Mom's eyes.

Now I think Mom expects the "Golden Child" to come racing in on his white stallion to save her from this terrible prison she's in; the problem is, the "Golden Child" can't do it; all he can do is try to save her from herself.

 In Church today, I was hoping they'd announce Mom's situation in Sacrament Meeting.  I guess they don't make general health announcements in Sacrament Meeting anymore (at least in Mom's ward), but it did disappoint me not to hear some acknowledgement given to a woman who has lived and served so long in this ward.  I know they announced it in Relief Society, though.  It just made me kind of sad.

After church I visited Mom again.  My older sister and niece were there, and Mom was actually laughing a bit.  The very minute my sister and niece left, Mom got all sullen and crabby again pleading for me to take her home.  I was pretty stern with her today, explaining that the situation is not desirable for any of us, but it is what it is, and that how she responds to it is all dependent on her attitude.  I said, "You can either make the most of it and get to know the people who live her and make friends and participate in the activities or you can sit in your room and feel sorry for yourself.

"I'll just sit here and feel sorry for myself, " she said, petulantly.

I said, "Fine.  That's your prerogative."

I said I couldn't take her where she wanted to go, but that I would take her on a walk, emphasizing that we were just taking a walk and returning to the assisted living facility.

It was cold.  We took a very short walk.  I think Mom was trying to figure out where home was in relation to where we were and seemed very frustrated that nothing was familiar.  She couldn't escape anyway.  The building is quite secure.  And Mom knows she can't find her way home.

On our very short walk, I was reminded of this walk.  Of that walk, I said:

"I remember when I went on my mission and hugged my dad for what turned out to be the last time, I felt a prompting to make it count because it would be the last time for a while.  Dad ended up dying while I was away.

"I felt that same feeling today as I walked with my dear, sweet mother.  "Make this count," I felt.  "It won't always be like this."

"That isn't to say that Mom will pass away soon or that we won't take other walks, but something told me to recognize what I was feeling with my mom in this moment and to hold on to it because it was precious and wouldn't always be like this.  It felt almost heavenly."

"Make this count.  It won't always be like this."

It turns out I was right.  We shall probably never walk through her old neighborhood again.  That was about a month before I moved back home with Jonah.  And while Mom was not doing great, I would not have predicted that we'd be where we are today.  I would not have thought she would deteriorate so quickly.  I would not have thought she would be in a home just three and a half months later.

We returned just in time to play Bingo.

I like the activities director.  Her name is Elisa.  She transferred from another facility I had previously checked out, and she too is frustrated by how much smaller this one is.

We played Bingo.  I also reminded Mom there was a movie night that night.  (She likes movies).  Mom didn't seem very into Bingo.  I felt like I was surrounded by elderly children.  Having taught in elementary schools, I can confirm that the behavior I saw today is not all that much different, and I thought, "It really takes a special person to do this type of job."  I actually think I would be good at it myself, but I also think I would burn out quickly.  And I imagine it is easy for anyone to burn out.

As one woman chattered incessantly and as another kept repeating "Bingo" over and over again and as one guy basically kept telling the first woman to shut up and as one guy wandered around trying to open doors and as another lady just lined her Bingo chips in a row of stacks, I thought how childlike these people are, Mom included.  It was all Elisa and I could do to stop laughing.  She said, "This is every day for me."

I am so impressed by how cheerful the staff seems because I'm sure there are frustrating days.  I know.  I've been there myself.  All of my family has.

After Bingo, Mom reiterated that she felt like a prisoner.  I told her I was leaving, but that I would be back the next day.

"To take me home?" she asked, hopefully.

"No, Mom."

"You're mean."

"I know."

The circle of life is so interesting.  The child becomes the adult, and the adult becomes the child.  I think it has to be that way.  It teaches us to care for one another.

There is a social hour with the staff tomorrow afternoon.  I think I'm going to go.  I'd like to get to know better the people we have entrusted my mom to.

This certainly is not the most fun I've had in my life.  I know we've done what's best for Mom, but it is incredibly hard to watch, and yet equally hard not to be as involved as I would like to be.  I catch myself second-guessing our decision even though it was the most necessary thing to do.

As I was driving home, the very irrational thought crept into my head, "Why couldn't you take her back home, just until you leave?  You're going there anyway, and she would probably do okay as long as you're there."  But it's just because I don't like seeing her so unhappy.

Fortunately, the rational thought came into my head, "What, and traumatize her when she realizes all her stuff is gone and that she has no bedroom to sleep in?  And doubly traumatize her when you have to take her back to her new home when it's time for you to go to yours?  I think not!"

Well, it was a fleeting thought.

I feel right now we're trying to acclimate Mom to her new home, but I would eventually like to take her out on outings and maybe to her regular hairdresser or to a movie or out to lunch.  Make her feel as normal as possible while still making her know that this new place is where she'll be living.  I wish I were able to be with her more.

And I look at some of these other residents who are further along than Mom in their dementia, and I think, "---sigh--- That's what we have to look forward to these next however many years are left."

I wish things didn't have to be this way.  But they are.

I keep posting sad posts on Facebook.  I have some amazing friends who have given me so many words of love, support, advice, and encouragement.  I am eternally grateful for that.

Well, this was a long one, but that's what my life has been like these past three days.  The adventure is just beginning.


Tuesday, January 15, 2013

Doomsday Approaching

I'm flying into town for an audition on Thursday and have extended my stay to help out with my mom.  My sister-in-law was hoping I could come today.  I really didn't see what difference two days would make.  I know everything is chaotic and my family is stressed and panicked a bit.  (Mom may be moving into the home tomorrow (Wednesday)).  Everyone is grappling to get everything ready for her move - doctor's visit, evaluations, packing and moving her furniture, etc., and I know I could be of help.

At the same time, I can't just pick up and leave.  I have obligations and duties here with my husband.  I told my sister-in-law so.  She never responded, so I don't know how she felt about it, but my sister gave me a call and applauded me for standing up for myself and said she understood why I feel the way I feel.  She said I've taken care of Mom for so long, and that she and my siblings have got to be able to handle things without me.  Her words: "You've done more for Mom in the last four years than all of us put together."  Whether that's true or not, I sure appreciate the sentiment and am glad to know that at least somebody has my back.  She indicated my other sister probably feels the same way, too.

This isn't to say my brother and sister-in-law don't.  I'm sure when my sister-in-law made the request for me to come early, she was just feeling overwhelmed and stressed.  But I did feel guilty for choosing not to come early even thought I knew it was the right thing to do.  But my sister assuaged my feelings of guilt, and I sincerely appreciate that.

As for Mom, she came home from the hospital today.  She apparently was being childish and difficult when my sister was trying to get her to eat.  She was also absolutely convinced she was not in her house (yes, the house she has lived in for 50 years) and wouldn't take her gloves and coat off because she had no intention of staying.  She took a tour of her own house, and while much of it looked identical to her REAL house, she was adamant that it was not.  I'm hoping she will take to her new home at the assisted living facility better, although I have a feeling she will least, not right away.

We're all exhausted, though, and it will be better for both her and us in the long run.  Expensive, though.  But better.

Can't wait to go back and enter the fray.

Foundations and Transitions

Mom is in the hospital with a urinary tract infection.  She had had an accident in her bed that morning and was very out of it.  My brother and sister-in-law came and got her and, along with my niece and nephew, took her to the hospital.  Mom was very confused and still doesn't understand why she is there.  She seems to think she was put in the hospital to take a shower (as my sister said, "That is one expensive shower!") and is quite annoyed that none of us will take her home.

Mom went into the hospital on Sunday, and actually my sisters and I felt it was kind of a blessing in disguise as I think it has spurred my brother to realize she should probably be moved to the assisted living facility as soon as possible.  We spent this evening filling out the paperwork to get Mom moved in, and I anticipate that by the end of the week she will be in her new place (and I'm sure she won't be the least bit thrilled about it, either).

I've been able to detach myself from the emotion of it and just deal with the practicalities for the most part.  The only time I was getting a little wistful was when my siblings were talking about which of Mom's pictures to move to the facility (because she has a lot of them and won't have room for all of them; that made me kind of sad).

I still wish we could afford to put Mom in the first facility we saw, but it is way out of our budget.  The place she'll be going to is fine, but it's not my favorite.  But I still feel good enough about it.

Saturday night (before we knew she had the infection) I was feeling down and anxious about Mom because of her particularly odd behavior (and it turns out that the infection may have exacerbated her dementia, although I still think it's best for her to be moved).

Suddenly, I received a phone call.

A voice started sing/speaking, "I just called to tell you I love you."

It was Jonah's mom.  She was actually trying to sing the Stevie Wonder song, "I Just Called to Say I Love You."  Mainly, she had called to invite over for lunch on Sunday and to attend a 25th anniversary party for their church.  But I was so touched that her first word were, essentially, "I love you."  That meant a lot coming from a woman who I neither knew or particularly liked just two years ago.

I've actually developed a good relationship with Jonah's parents.  I think they both like me and have basically treated me like a member of the family.  His mom and I were on the phone for a while talking about Mom, and I was very grateful for her words of support.  It was a nice and needed conversation.

Jonah's mom had invited Jonah and I over for lunch and to this 25th anniversary party.  Jonah couldn't go because he is volunteering as head of wardrobe for a local community theatre company.  I decided to go, however.  Much of the time I was on the phone talking to various family members about Mom and her condition and prognosis.  A selfish (or maybe not-so-selfish) thought went through my head that wished Mom's condition was serious enough to take her from us early.  I know that might sound awful, but the thought of having to watch her slowly waste away and live the rest of her life in assisted care is not one I relish.  But I have a feeling Mom is going to be with us for a while.

Jonah's parents and I had a really nice lunch.  I think I've mentioned that his mom is a terrific cook.  We had some time to kill before the celebration party, so I sat in a chair to read a book about America's independence called 1776.  I'm not that far into it, but it's pretty good thus far.

There was also a telenovela on TV that I got sucked into even though I couldn't fully understand what was being said.  I also zonked out for a few minutes.

Jonah's brother, mom, dad, and I went to the church.  We were pretty early so we sat there for a while.

I think I've mentioned that Jonah's family are Pentecostal.   I can appreciate the faith and love the members of this church have, but I could also tell that the Pentecostal faith and style doesn't quite gel with my own.  After the meeting, Jonah's mom said, "I bet we have a very different speaking style than Mormons do."  I said, "Oh, yeah.  You guys have a lot more fire than we do."  There's also a sort of impromptu style that Mormons don't have.  Mormonism seems very structured; there isn't much room for ad libbing or unscheduled interruptions.  The Pentecostal religion (at least this one) seems to encourage and celebrate off-the-cuff moments.  And that's cool.  I'm just not used to it.

I do like their music, though.  And, truthfully, Mormons could use more spirit in their celebration.  Sometimes LDS meeting feel more like...well, meetings than worship services.

The presentation was talking about the church's past, present, and it went from being this small church to growing a large international church.  It was cool to hear about all the miracles that went into building this church, and it dawned on me that God probably doesn't really care what religion you do or don't belong to...He blesses any of his children who are anxiously engaged in a good cause...and even some who aren't.

One man talked about foundations of buildings - how important foundations are, but how nobody buys a house or building because of its foundation.  Nobody says, "That is an awesome foundation!  Let's get this house."  And yet, without the foundation, the house wouldn't be able to stand at all.

And I thought about the foundation my parents have created.  My siblings and I would not be who we are without the foundation my parents created for us.  And I thought about how much my mom has given me all my life and how much I am who I am is largely due to her.  Even if she is gradually slipping away from us mentally, she has left a legacy that will outlive her by far.

I miss who my mom was, but I have also found much joy in who she is.  I know watching her deteriorate the remaining years of her life will be challenging at times, but I celebrate who my mother was and is: a good woman who did her best to raise her children right and who was and is kind and loving.  There are days when she can be difficult or challenging to deal with, but the essence of her is still there.

I love my mom dearly, as you all know.  I wish I could be there more during these remaining years of her life.  But I am also grateful for the relationship I am building with my dear husband and with his family.

This is a time of transition.  All I have ever wanted is to love and protect my mom and keep her safe and healthy.  Moving her into this facility is what is best for her at this time...and, frankly, what is best for her family.  Just as she took care of us all our lives, now we are trying to take care of her the best we can.  No one ever wishes this for their parents and often children promise their parents they will never move them into a home.  But some promises can't be kept and sometimes an assisted living home is what is in the parent's (and the child's) best interest.  As my sister says, it's time to stop being Mom's caregivers and just be her children again.

Saturday, January 12, 2013

The Time Is Dawning Near

We're getting to the point where we're all in agreement that Mom needs to be moved to assisted living.  It's truly amazing how much she has declined just in the last couple of months.  Mom is very confused about where she lives.  She's lived in the same house for 50 years and now doesn't even know her address or the city she lives in.  She thinks she has two houses and wants to go back to the other one.  She keeps talking about how she lives "high up" in a tower.  The other day she thought my nephew and niece's room was hers even though it's nowhere near her own room.

Yesterday my nephew found that she had thrown up and passed out at the dining room table.  I think he should have taken her to the hospital and had her checked out.  Instead, he cleaned her up; practically carried her back to her room; and let her lie down.

Later, when my niece went to check on her to see if she was okay, Mom was on the floor next to her bed holding her jewelry box on her chest.  When my niece asked if she was all right and why she was there, Mom couldn't remember how she got there and said she was fine, but that she couldn't get up.  My niece helped her up and was kind of freaked out by the incident.

Needless to say, my niece and nephew feel like caring for Mom is getting to be more than they bargained for and want out.  They've already started looking at houses so they can have their own place.  My sisters are both at their wits' ends and are pushing for Mom to be moved into assisted living.  We had originally toyed with getting her home health care, but I am of the opinion that she needs to be moved into assisted living.

My brother seems to be of that opinion, too, but is stalling for some reason, and I don't quite understand why.  I think he's concerned about the financial aspect of that and wants to get that sorted out before taking action.  I think we've reached a breaking point, however, and need to get Mom into a facility as soon as possible, and we can worry about the financial aspects later.  I know we have enough to take care of her for at least a year, and I figure we can figure out more about our financial options during that time.

We're already talking to a Medicaid advisor who is trying to help us out, and I think Medicare will cover some of it if Mom is unable to do certain things such as eating, showering herself, toileting herself, etc., and I think we may be reaching that point anyway.

I'm supposed to go back to Utah on the 17th for an audition, and we are going to have a family meeting.  My sister-in-law said my nephew starts school this Monday and will be busy and because of the added strain on my already exhausted sisters was wondering if I could come down early and help watch Mom.  Unfortunately, to change my ticket at this late date is more than I have in my budget, but I could stay longer if needs be.  However, I think it should be with the goal that we're going to take action and get Mom moved.

While I never wanted this day to come, I feel it's time.  It will be best for everybody, including Mom, in the long run.  I just wish it weren't so expensive.  My mom has been financially smart and prepared, but even so, it is likely she will outlive her funds.  It shouldn't have to be that way.

Anyway, I hope we can get her moved in soon, and mostly, I hope she will transition well.  I have a feeling it will be a bumpy ride at first.