Have you read the one about . . .?

When I go to Mom's house it's quite common to see a stack of library books on the end table by the sofa.  It's been this way for many years. If I want a suggestion of a new author or a book "guaranteed to please" Mom is my go-to person.  She keeps a small list tucked inside her wallet where she has written the names of authors she enjoys reading. . .Then a peculiar thing happened.  I noticed that over time the stack of library books in the living room began to be smaller and then disappeared entirely.  I found it strange that she had stopped going to the library.  I questioned her, and her response was quite vague.

Now I understand.

She has since been diagnosed with "mild to moderate stage" dementia.  Reading, which has always been such a joy and a refuge for her, has become difficult.  She finds the twists and turns of a novel complicated and the many words on a small page overwhelming.

She is coming to live with us very soon.
I have wondered about what I could do to keep her mentally stimulated and emotionally happy.  Children's books seemed to have many of the features she needs, but the pictures and the stories seem almost insulting for a woman in her 80's. . .Then, I discovered Shadowbox Press, a company who makes interactive books for memory-impaired adults.  Who knew?  Certainly not me!  These books are wonderful!  They are colorful, large,  hard cover books.  The print is large and the subject matter is for adults.  The variety of subjects are such that either a man or a woman could enjoy them.  The one I own is, "Seasons".  It is creatively written and the photos are BEAUTIFUL (and large, for aging eyes).  The photos are actually vivid and nice enough to be framed and displayed on the wall if one was so inclined! Sometimes my ulterior DIY decorating persona comes through - Forgive me!  Of course I won't destruct this lovely book which I'll soon give to my Mom!!  Still, the fact is that the book is such that it could be a coffee-table book, left out and easily within reach for an eager reader.  At this stage of dementia, I think Mom will be able to read this book herself and will enjoy the pictures as well.  If the time should come that she cannot read, I feel the pictures will still give her joy.

I've also noticed there are suggested "Conversation Starters & Activities" (at the back of the book) which a caregiver could use to coordinate with the reading of this book.  What a great resource!!

The only thing I wish I could change is the notation at the bottom of the cover, "An Interactive Book for Memory-Impaired Adults" (which is also repeated on the title page).  I know Mom will find this "offensive, and maybe even depressing".  I plan to cover this with some type of sticker - that way she will enjoy the book and never know it is a "special type" of book, which to me is the beauty of these books.  They are written in such a way that one would never know they are "specially written" for one with some very special needs.

I'm already looking at other books offered by Shadowbox Press.
Mother's Day will be here in the Spring and I'm gonna order the "Dogs and Puppies" book for her.
The books are very affordable.
Doncha just love that?!

* * * * * * * * * * * * * * * * * * * * * *  

Shadowbox Press gave me the book, "Seasons",  for the purpose of review.
The opinions are my honest thoughts.
I am happy to recommend these books!

Waiting.

I don't know anyone who really enjoys waiting.
Since early childhood we're taught to "take turns" and wait patiently for it to become our turn.  We don't usually like it, even though we understand it.

We're waiting for a court date, and it's been a slow wait.
The court date will mark a BIG day in our family life.
The evaluations have been made.
Backgrounds have been checked
Information has been gathered.
And depending upon the Judges decision, Mom will either stay at the assisted living center or she will come to live with us. It's an eerie thing to realize this big decision will be made by someone who doesn't really know any of us.  Mom's future hinges upon a stack of papers full of personal information.  I don't think I would like to be a Judge and have to make these decisions. . . I have decided to be at peace with however the Judge rules.  I hope that Mom can do the same.

The court date inches closer each day
and the waiting continues. . .

Look what I found!

I've been looking for some puzzles that would be suitable and enjoyable for my Mom.  I've read that  puzzles (for those with dementia) should be wooden, or very heavy cardboard with not more than 80 pieces, and they should not be child-like in composition, but rather something for an adult's interest level.  I've been pricing some online made for those with memory issues.  So glad I didn't order those as I happened across these today at "Tuesday Morning".  They have a wooden frame, and 48 pieces which are made of heavy-duty cardboard.  They were marked $6.99 each.  I thought these were a real "find".  I chose my two favorites.  When I went to pay I was told the yellow tag on them meant they were on sale for $1.40 each.  I ran back and grabbed up one of each puzzle.  What a deal!  I think Mom will enjoy these, and if not I'll donate them to the Senior Center so someone else can enjoy them.

I think they're beautiful!
What do you think?
 

The "G" word.

The entire process of becoming a Guardian for one's parent is something I hope you never have to experience.  It's an awful thing to need the court to declare your parent "incompetent".  Who wants to do that?
Not me.
Not my sister.
How we wish Mom had understood the need for signing Power-of-Attorney papers, but that was not the case.  She feared giving up control of what she and Dad had worked a lifetime to accomplish - their finances and their independence.  Sometimes one can hold onto things they love too tightly and that's exactly what happens when one has dementia and no Power-of-Attorney in place.  It's understandable, but also regrettable.  I will definitely sign a Power-of-Attorney when the time comes - the alternative is an awful option.


We are going through the legal process of Guardianship after being told by healthcare workers that it is the responsible thing to do at this time.  It's one of those "I don't wanna, but I gotta" type things.  It involves lawyers, lots of time, extra expense, lots of paperwork, and a judge.  It also makes for rough going when your parent doesn't understand why this is happening and how this is necessary for their well-being and protection.  When Guardianship is granted it is official that the parent/child relationship has flip-flopped, and the child has now become the "parent of the parent" to a major degree.  If you're a praying person I can guarantee that you will be on your knees seeking God's wisdom when this happens.  It's not an easy road.

"Hurry Back. I am waiting!!!"

Mom sent me this Christmas card after I had visited her mid-December.

So much has changed since then.

She is an assisted living center now.
She doesn't understand why my sister and I are seeking Guardianship.
She doesn't understand why she is no longer allowed to drive.
She doesn't understand what has happened to the world as she knew it.

We have no words that make sense to her,
so there will be no understanding.

Dementia is UGLY.

"It's too Late to Turn Back Now"

This is a RANT! 

So aggravated with the attorney we have for the Guardianship case for my Mom. 
He doesn't know the next court date, nor the time- he will call and ask Mom's attorney. Really? 
He has to call to ask HER? 
He seems to defer to her for many things.  He is definitely not the Alpha.

I had several questions today and his answer to each one was "I don't know". 
Then when I gave him some more information regarding our situation, his response was, "well you can tell the judge that.". 

Sooooo, I'm wondering what the heck are we paying this guy for??? 
He doesn't seem to know anything and we are gonna have to tell the Judge everything ourself. I thought an attorney would argue our case for us. 
This guy is a Goober!! 
I feel we're too far into this process to fire him and begin again with someone else. 
So aggravating!! 
My sister and I are two, loving, stable people, and we've passed all background checks. 
My sister is a degreed accountant. She works as an accountant, and is bonded...One would think this would be a "Slam/Dunk case", but noooooo. I feel like we're in the midst of Crazyville... 

Now, I wish I had a Margarita, and it's not even noon yet.

Keys

Mom had a terrible time coming to terms with the fact that the
doctors had told her she was NOT to drive.
She cried.
She spewed anger.
 She wanted to die.
She decided to ignore the doctors words, after all "they just said that because they wanted her money".

So went the conversations between Mom, and my sister and I, for several weeks.  Finally my sister and I decided Mom was regaining some of her physical strength and there was the frightening thought that she might actually try to drive.  We decided the right thing to do would be to take Mom's car key from her beloved key ring and replace it with a "different, but similar key".  Hopefully Mom would not notice the key as being "different", but if she should try to actually drive it wouldn't work.  Problem solved.

I managed to buy a key which looked much like hers.  I even went so far as to stress the key by scratching it across the parking lot pavement.  I was proud of my work - the key looked very much like the one I was planning to replace.  I was going to visit Mom the next weekend and would make the "switch" while I was there.

"The switch" never happened.
Mom had managed to keep a step ahead of our thinking.
She no longer hung her keys on her key holder, nor did she put them in her purse, instead she kept them in her pocket during the day and at night she slept with them under her pillow.
Our plans were foiled.
She had certainly out-smarted us, but the problem still remained.

I left for home, unable to have made "the switch".
I handed off the key to my sister who was going to try her hand at making the switch in the next few days.

The driving issue came to a head within days.
My sister was at Mom's preparing to drive her somewhere, when Mom got into the car, keys in hand and tried to back the car from the garage.
She.Was.Going.To.Drive.
Mom started the car but had problems putting it into Reverse.
My Sister lowered the garage door so Mom could not leave.
There were heated words exchanged.
Mom stomped back into the house with the keys clutched tightly in her hand.
The phone rang.
Without thinking Mom laid the keys down to reach for the phone.
That's when it happened - My sister grabbed the keys!
Realizing what had happened Mom reacted with fury.
She hit.  She cursed.  She raged.
My sister took the key and left, as there would be no calming or reasoning with Mom on this occasion.

The very next day Mom was admitted to an Senior Adult Behavioral Facility for evaluation of her dementia.  After a two week stay we were told that Mom could never live alone again and that  my sister and I should seek Emergency Guardianship, to be followed by Permanent Guardianship.

We had seen this coming, but it was still a very sad day.

"I Wanna Talk About Me. . ."

"I wanna talk about me. . .
What I think, what I like, what I know, what I want, what I see
I like talking about you you you you, usually, but occasionally
I wanna talk about ME".        ~Bobby Braddock

I'm preparing for Mom to come to live with us.
The house is ready, but now the real work begins,
the readying of "Me".

I'm a "Slow-Starter".

I've had the luxury of going to bed when I want

and getting up when I want for a very long time.

It's gonna be a hard thing to change, 

but I know it's a must if I want things to run as smoothly

as possible with Mom in the mix.  I need to get up early

and get everything rolling in an orderly fashion.

No more "late starts".
I like organization.
I like a schedule.
I just don't like getting up early.

This old dog is gonna have to re-learn an old trick.

The alarm is gonna go off at 7 am.
Ready or not.

Boogy-man

We (my sister and I) received what we think will be the final court date for our Guardianship for Mom.  I'm carrying a mixed bag of emotion upon hearing this news...

I'm happy.
I'm sad.
Mostly I'm afraid.
Afraid of the dementia boogy-man who is lurking.

                                           "What would you do if I sang out of tune,

                                          Would you stand up and walk out on me?

                                          Lend me your ears and I'll sing you a song,

                                          And I'll try not to sing out of key.

                                          Oh I get by with a little help from my friends,

                                          Mmm,I get high with a little help from my friends,

                                          Mmm, I'm gonna try with a little help from my friends".

                                                                       
                                                                         ~John Lennon, Paul McCartney

Indecision

I've been looking, no searching, for some type of Adult daycare for when Mom comes to live with us.  I really HATE the term "Adult Daycare" - that sounds totally condescending to me.  What adult would want to go to "daycare"?  I digress. . .I've been reading and listening to people "who know" and it's a unanimous agreement that if I stand a chance on not burning out as a Caregiver it will be essential for Mom and I to have some "apart" time.  I'm also told that daycare can be a wonderful tool to help Mom function at her best.  It does make sense to me, even if I don't like what it's called.

Today I went to the only "Senior Services" I could find in our area.  I put the address into the Garmin and it lead me to a very dilapidated area of town.  The building was old, but well maintained.  The inside of the building smelled like old books. . .I was greeted by a lovely, well-dressed, late 40's woman.  She gave me a "Calendar of Events" and took me on a tour of the facility.  She bubbled with enthusiasm and pride as we toured.  Soon I found I had forgotten that the building was old.  She was AMAZING!  At one point we stood in front of a huge bulletin board which held photos of the Senior participants at many of the events held at the center.  She assured me that Mom would fit right in and soon make friends with the others who came regularly.  The programs run from 7 am to 11:30 am, five days a week.

Maybe Mom would enjoy going here once a week.
Maybe twice a week.
Maybe it would be more appealing if I referred to it as "school or classes".

Maybe Mom will bristle at the sight of the old building.
Maybe proper security is lacking.

Indecision.

"Call Me Maybe"

I called the assisted living center today to talk to Mom.
The first time I called she was having her hair done.
I called back and this time I got her.

I asked about her hair appointment...
I reminisced about the soup I was cooking for dinner, reminding her that she was the one who had first taught me how to make homemade soup...I asked about the meals at the center...We discussed the weather.

She asked about my daughter (her grand daughter, who is expecting a baby soon).
She asked about my husband.

I told her I called because I wanted to hear her voice.

She told me it was almost time for her dinner.

"We'll talk again soon", I said.  "I love you.  G'Bye".

"No you don't", I heard her say as she hung up the phone.

When is a lie not a lie? Wondering.

I am a Christian.
Mom actually led me to a saving knowledge of Jesus Christ when I was eight years old.  I remember it clearly and fully understood the decision I was making.  I was taught right from wrong.  I was taught the ten commandments.  I was taught the infallibility of God's word.  I've built my life on these truths and raised my children by the same standards.

The last time I visited with Mom she became very angry, which is not unusual for her these days.  Mom has always had "spunk", but the dementia seems to have heightened this tendency while at the same time dulling her behavior filter.  Now when she is angered it's not terribly unusual for her to say cruel, profane things, and at times to even hit at whoever has offended her - which has always been a family member thus far.  That said, Mom is not wild.  She knows when she can act like this and when she can't.  She became angry with the judge at times when we were in court.  She spoke directly to the judge at appropriate times, stating her opinions clearly, but never once raised her voice or spoke in a manner that was disrespectful.  She totally knew what was acceptable and "behaved" accordingly.  When our case was adjourned Mom became irate with our family members.  She spewed profanity and told us over and over that she hoped we died before she did.  She accused us of terrible things and approached a stranger in the hallway telling her how awful her family was.  The poor stranger sat in silence as Mom ranted.  It was obvious to anyone near that something was not right.

I tried to calm her.
"You don't mean that Mom, don't say those things."
"You know that's not true", etc. etc.
The more I tried to calm her the more irate she became.

I've been doing a lot of reading lately.
I'm trying to educate myself and learn techniques of dealing with this type of behavior.  The first thing I learned was that I've been doing it all wrong, and saying all the wrong things.

I've read from various sources and they each advise to never scold, and certainly to never tell someone with dementia that they don't mean what they are saying.  They tell me that people with dementia do certainly mean what they say, even if it's not based in reality, it is their real feelings based on how they are perceiving the world at the moment.  The best method is to sympathize and validate their words, then calmly redirect to another subject if possible. . .Soooo, what I should have said was more along the lines of, "I know we've made you angry. . .Now, would you like some pie?"  OK, I'm being silly, but you get the idea.  I'm such a beginner at this.  I'm learning but have not yet had the opportunity to use my new found knowledge.  We'll see.  Honestly, it seems to me if the person with dementia knows when and how to behave but chooses not to adhere to this, then a gentle bit of scolding would be acceptable.  I would think, "Stop hitting.  You know that's not right and there will be no pie for you until you calm down", would be advisable, but the experts I read don't seem to think this is the way to go.  I told you I'm learning.

Perhaps the biggest problem I have at this moment with the things I'm reading is the "validation" of things I know are not true.  This is where the advice bumps up against my morals.  I really try very hard not to lie about things.  Example: If Mom asks if I have her car keys, I hedge.  I don't want to say, "Yes, I have them", because I know it will upset her and probably cause her to spiral into anger and a rant and make her terribly unhappy, so I hedge.  I try to avoid answering the question directly, but at the same time I try not to lie.  I'm told the best technique is to give her the answer she actually wants, then to redirect her.  If I did that my response would be something like, "No, I don't have your keys.  I bet they're in your room and you can look for them after you have a snack; care for pie?."  That feels like a lie to me.  I wonder if God sees that response as a lie or if he understands and sees this as simply a technique for dealing with someone who often lives in a different reality than the one around her?  I'm sure some people find it odd that I would question this, but I do.  The Bible is pretty straight forward about lying.

This bothers me.

Thoughts?

"Vertigo" - not the movie

Mom awoke very, no, extremely, dizzy.
She tried to walk, but swayed, catching herself by leaning into the wall.  She had just been released from a two day hospital stay for a heart arrhythmia, she had mentioned "a little dizziness", but nothing to this extreme had been present in the hospital. . .I was in town to spend a few days with her after this hospitalization.  We called her doctor about the dizziness and he advised we take Mom to the minor emergency center to be checked over.  Mom was willing to go, but wanted me to help her to her bedroom before we left.  I did.  Mom knelt down in front of her bedroom dresser and stretched her arm far beneath it, pulling out a wad of folded money.  She wanted me to take it with us to the emergency center.  I assured her we wouldn't need the cash, but wondered silently why she had felt the need to have this cash hidden away in such a manner.

I helped her into the car and we were on our way.
When we got to the center we were sent back home to retrieve her insurance cards.  She refused to carry these cards in her purse for fear that someone would steal them.  We had talked about the need for keeping them with her before, but to no avail.  She kept them sealed in a baggie and tucked away in the back of a bedroom drawer. Each time we visited a doctor this was an on-going issue.

When it was her turn to see the doctor I followed along.  When the doctor asked about what was bothering her she stared blankly ahead, not knowing how to answer.  Finally she pointed to her ears, but could not verbalize that her ears hurt and she was dizzy.

It was the first time I had seen this "blank" look in Mom's eyes.  There was no embarrassment in her silence, just dead air.  I spoke for her, something Mom would NEVER have allowed in days before.

They washed out her ears and sent us home.
Two days later I took Mom to the Emergency Room for the same issues.
A CT scan showed that at some previous time Mom had experienced a couple of small strokes. She was also diagnosed as having Vertigo.  She was sent home with the proper meds this time and told she should "NOT drive" until she saw her primary care doc at a later date.

"Not Drive?"

She was devastated and sure the doctor "just wanted her money".
She was also determined she would drive again in a few days.

There was a continuing dialog about her determination to drive.  She also began to obsess about her key ring.  I had removed her car key from the ring, fearing she would make good on her threats to drive.  My sister and I discussed the driving issue.  We knew this was going to be a BIG DEAL.

Over the course of a week or so Mom's Vertigo began to subside.  The better Mom felt the more angry and determined she became to drive again.

At this point it seemed that each day spun a new behavior that seemed "off balance".  Still, there were good days and happy, reasonable conversations from time to time.  We were concerned, but hopeful that Mom could recover to a good quality of life, even if she was deemed permanently unable to drive.  Family was willing to step in to be sure that she could go to church and also have several outings a week.  We hoped this "new normal" would soon be something she could adjust to.

This was not to be the case.