Tuesday, January 28, 2014

Where does the time go?  It is already January 28th and we are preparing to begin the 2nd month of the new year. 

Life here with mom continues to be constant.  After 2 years in her present assisted living facility, she and I have decided that it is time to move.  I have spent many days looking at and speaking with new facility administrators and we have decided on her new "home". 

I cannot help but have a heavy heart every time I leave her, because she is miserable where she is at.  All she wants and talks about is having a friend.  Someone to talk to, someone who would make her life a little brighter.

While I love all of the residents where she presently lives, most are so advanced with their dementia and Alzheimer's that they no longer know who they are, let alone who anyone else is, or even where they are.

So her new place is lovely.  She will have a room on the end of the hall and have 2 walls of windows which will be wonderful for her vision.  She will be placed in the "memory care" unit, but after her psych evaluation it was determined that she is a level 1; or highly functioning. 

We have already given the mandatory 30 day notice to her present facility, and I am thinking that maybe we will move her this week . . or maybe in time for Valentine's day.

I have been running with her to doctors, getting paperwork in order, bringing her belonging to the new facility and setting things up, and going what seems like nonstop, but it is all for my Momma and for her, I would do anything.

Once she is in and settled, I will update and hopefully post some photos of her in her new "home".
These are photos from the facilities website.

Tuesday, November 26, 2013

Holiday Season

The holidays season is officially upon us.  Thanksgiving will be celebrated in households all around the US on Thursday and December will be right on its heals. 

As you sit at the table this year, remember to be thankful for your parents.

I was sitting the other day reflecting on how as a baby, we rely completely on our parents to eat, sleep, get dressed, stay clean and dry.  Our first method of communication is crying . . . we have a cry that means we are hungry, and a cry that means we are wet.  We have a cry that means we want attention, a cry for pain.  Each cry has its own meaning. 

As we begin to grow and become a toddler, we start to communicate verbally.  Often it is a point and grunt.  Then a word or two until we are fully vocal.  As we continue to grow and learn, we rely less and less on our parents for each action and start to gain some independence.

One day, we are old enough to go to school.  It may be preschool, or kindergarten, but we are away from our parent for several hours.  We begin to rely on teachers and classmates. 

As we progress in age, into teen then young adult, that constant tie to our parent for all of our wants and needs lessens.  We start to exercise our rights and our freedoms.

One day we leave the nest completely, either going off to college or simply moving out to test our wings . . . solo.

We start to neglect and take for granted all that was provided for us by our parents.  We want to do things our own way, in our own homes and in our own time.

Many of us get married, have children and begin the cycle again, living our lives as the provider; to our own families.  Our parents try to interject and to give us guidance.  Sometimes we take it, and other times we do it our own way.

Our children go thru the same cycle we did . . . from complete dependence on us to independence and so on.

Our parents also aging begin to rely on us as well.  We need to make decisions as to what is best for them.  How do we balance our life, that of our children and our parents?  It is a role reversal that many fear, and many have no idea how to react.

Our parents on the other hand become that little child, that we started as and need us. . . to care for them, to feed them, to clean them, to wash their clothes, to do their shopping, to lend them our guidance and help them survive.

Role reversal is probably one of the hardest changes in life that one can encounter.  It means now taking the lead away from our parents and making them understand it is for the best.

Role reversal means that our parents, who we have looked up to and admired our entire life no longer can provide that nurturing to us. 

Role reversal means that we are now a parent to our parent.

As the holidays approach this year, make an effort to touch base with your parent.   Make every effort to call them, visit them, share with them.

As you sit around the dinner table this Thanksgiving, be thankful for your parents . . for all they have given  you . . for all they have taught you . . .

BE thankful that you have them still and that you can say I love you . . .

One day. . . they will be gone and it will be too late.  

Friday, September 27, 2013

Photos from the last several years

New Jersey Cottage in the Spring

Mom just after arriving at the assisted living
facility in 2012

Winter 2012

Winter 2013

Winner of the big prize
Easter 2013


PJ Party and Ice Cream Social
Early summer 2013

Mothers Day 2013

Surprise from Ruby & Ikey
Spring 2013

Memorial Day

Beautiful Mama

Memorial Day Celebration

Summer surprise 2012

2012 with the Grandsons


Surprise!  Hugs from Ruby Bailey

Halloween 2012

Summer 2012

Mom & I

Corn Hole Tournament!

Dec 2012

Christmas Party 2012
Ikey, Mom & Ruby

Christmas Party 2012
Me, Ikey, Mom & Ruby

Assisted Living Christmas Party 2012
Santa gave Mom that stuffed animal which she
REFUSED to put down

Christmas Day 2012
Present from Guy & Cathy
the Florida Bailey's

Christmas 2012
Fra la la ra ra . . .
Chinese Buffet

Our Valentines from Mom

Mom on Valentines Day

Mom in July 2013
Returning from granddaughter's wedding

Thursday, September 26, 2013

Big Trip

In April Mom went on a BIG trip.  Kristen her granddaughter was getting married and her shower was in April.  She did not want to miss the bridal shower so off to Ohio we go.  On the way, we travelled thru Tennessee, Virginia, West Virginia and then Ohio.  The trip should have been a straight shot, but when you are travelling with a senior citizen, often they are not able to endure the long ride so we had to stop overnight.

We selected Ripley (believe it or not) West Virginia as our stopping point.  Once checked into the hotel room, and ready for bed it was like a teenagers sleep over party.  Mom got the giggles and was just talking up a storm.  She was giggly and giddy like a teenage girl.

The ride to our stop was fairly uneventful except for the Tunnels that mom read about and knew we would be going thru, she said there would be three in all . . . hello?  You read this where?  She said that the papers we had, with the directions told all about the tunnels that were coming up.

I knew nothing of them nor had I ever travelled this route before so I was totally shocked and a little scared when the first sign appeared stating we would be required to pay a toll, to go thru the tunnel.

Mom said I told you.  Why didn't you believe me?  I don't know how I knew, but I know there will be more. . . there were . .

Today, if you ask mom about the trip, she no longer remembers even going . . . or going back in July on an airplane for the wedding.  How sad it is that she travelled that distance not once, but twice and does not even remember. 

I was going away a few weeks back and when I told her  about my upcoming trip she said . . . you have been doing an awful lot of travelling . . . me?  What about you I replied.  Her reply to me was where have I gone?  I have been here in this "apartment" all alone and have not even gone to my condo.  Where have I gone. . . . so I told her.  She said Oh yeah . . that. . ..well I forgot about that.

What people don't understand or recognize is that while when you speak with her, she may seem okay . . she really is declining.  She continues to struggle to find the right word, or uses a phrase that is not correct.  She often does not remember names or places, but can describe them and usually I can fill in the blanks.

Mom and I
on her love seat in
her "apartment"

Fashion Show

Halloween 2012

I never thought I would be sharing this story, but it is comical so I felt the levity it lends to the saga that is Dementia would be welcome. 
Mom needed some new underwear so off to WalMart we go.  My friend Sheila had been staying with me from NJ so we both went and looked around at the different types, sizes, etc.  Not exactly sure which size to get because of Mom's recent weight gain we decided to get a package, but then also get a single pair, same style and size as the package.  If the single pair worked then we knew the package would work.  If not, we could return the package and exchange for another size.   

Mission complete off to visit Mom in her "apartment" as she calls it now.

Knock, Knock, Knock . . . who is it?  It is Kathy and Sheila . . .

We go into her room and begin chatting.  We tell her that we purchased the underwear that she wanted.  First statement . . . did you get the right size?
Well funny you should ask.  We got a package and one single pair of panties the same size.  If you try on the single pair we will know that the package will fit.   Oh she says, that was very smart thinking. 

As we continue chatting, she gets up and goes into the bathroom.  Not thinking anything of if, Sheila and I just look at each other.  Slowly the bathroom door opens and there is Mom . . . New Undies . . . and her shirt.  She says, "I think they fit, what do you think?"

Sheila nearly fell off the bed. 

"Mom", I say "You did not have to try them on now".

"Well you are hear so why not.  What do you think?  Do they look okay?"

Now, if Mom was still in control of ALL of her faculties, this would not have ever happened.  She would not have ever come out of the bathroom in her panties, but Dementia is funny.  It is as if the "filters" that once controlled our life, and our judgment are now gone. 

I can reflect on these incidents now and smile.  I can recall the incidents that I find comfort in and let those bad memories slip away.   The pain and the dismay I felt initially have slowly materialized into care, compassion, love and pleasure.  Yes I did say pleasure.  I love to see the smile on Mom's face when I do something good for her.  I love to feel her feeble little hand in mine when we are walking.  I love to sit next to her on the love seat and chat.

I feel compelled to continue spending more and more time with her, out of fear that one day I will no longer be able to.

I hope you enjoyed this little Fashion Show story.......it brings a smile to my face


Lima Beans

I don't think I like Lima Beans anymore . . .
So when we are young, and its time for dinner we often cringe when we are told what is being served.  I was sitting with my mother the other day and as I do almost every time I visit, I ask her what she had to eat.  It was an evening visit so I asked what she had for dinner.  She said, "they fed us meatloaf, mashed potato's and lima beans.  I did not eat the lima beans" to which I replied, "You did not eat the lima beans?  All those years when I was young and you forced me to eat them, and you did not.  What's the deal with that?"  Her sheepish reply was, " I use to like them, but I don't think I like them anymore so I did not eat them.  What's wrong with that?"  I really had no comeback.

Life evolves in ways we are not accustomed to.  When we are in our youth, we rely on the advice and instructions from our parents.  We listen to what they say, and do what we want.  We take our lead from them. 

Each trip to visit my mom is very different.  I never know what I am going to encounter.  I don't know what I will hear, what I will see or what she will be doing.  Most days however she is just sitting in her room, on the love seat, hands folded in her lap, feet up on the ottoman staring into space.

She has a TV which is rarely on.  She has her bible and some reading material, but with her vision impairment she rarely reads anymore.  I bring her the church bulletin and she struggles to get thru it but always asks each week if it has arrived.  She complains constantly that she is having more and more trouble reading things, but does the best she can. 

There are activities scheduled where she is living, but she does not always participate.  She picks and chooses each activity she will attend carefully.  Music and entertainment typically are the draw for her, but even that is hit or miss.  She enjoys going but does not always enjoy getting there. 

It has become harder and harder for her to walk as her balance and gait have changed.  She gets winded now, where before she could do laps in the hallway .. . not fast, but at least she would try.

Lima beans have been removed from her diet  . . at her own choosing.  It just struck me funny that suddenly she no longer likes them.  I can remember vividly sitting for hours at the dinner table because we were forced to eat them.  She would say you can sit her all night long, I don't care but you WILL eat them.  As I got older, I would knock them off my plate into a napkin and since my job was to clear the table, I would throw them away.  This kept me from having to stay at the table all night.  I don't know if she knew that.  But I do know she will no longer be eating Lima beans. . .

This photo is of Mom and her grandchildren
(l-r) Thomas, Elizabeth, Mom, Jeremy and RJ (in the rear)

Breakfast . . . food for thought

As we sat eating breakfast at IHOP, I could not stop myself from staring at my mom. She was excited to be out. She was thrilled with her "French pancakes" (crepes). She was loving the lingonberry sauce. Each bite she took, I silently watched as a portion slipped off her fork, onto her lap. She was not even aware it was happening. She ate ALL of her breakfast. She drank her coffee and was just excited to be out. It saddens me to see her changing literally before my eyes, but I cherish each day we have and would never make her feel inept, or out of place by embarrassing her about how she uses her fingers to push the food into her mouth, how her clothes are covered with food particles much like a child.
 I would never ignore her or begrudge her the little things in life that make her so happy. I am at peace with my decision to alter my life, leave everyone and everything I know behind and care for her.
I am proud to call her mom and take care of her; as she did me when I was a child. Role reversal can be quite challenging. It can make even the strongest person collapse and feel weak, but it is by far the most rewarding and satisfying thing I have ever done.
I have see her more and more as a child these last few weeks. She asks me silly little things that I know she should know, but I answer and act as if she has never asked before. I have morphed myself since Jan 2011 when I found her unconscious on the floor; heat off and body temp down to 84. I have grown in ways I did not know I could and I have become to appreciate my mother more now than ever. I know that Dementia is not a curable disease.
I know that one day, she will no longer know who I am. I know that when I mention my siblings, or an in-law, when she asks who I am talking about it is the disease causing her not to remember, but I just take the time to explain again and now know, do not get upset because she is not in control anymore. I have laughed, cried, yelled, screamed, and even walked out on her. I have cursed, sworn and thrown my hands up . . . before I knew the depths of this disease. Today I am calm, almost too calm some days. I just listen and go on. It is when I get home, when I am alone that I begin to feel sad.
I miss my Mom and I see her almost daily. The actual human being is the same, it is the mind that has slipped away. I miss my mom, that lady who made all my clothes growing up. The bowler, the Rosary President, the Cub Scout Leader, the ice skater, the best Swedish meatball maker, the sewer. The one who got me hooked on CSB Soaps . . . the mother who drove us everywhere we wanted to go, the first person that refurnished and updated a room using money she earned refunding. I miss her laughter, her silly little idiosyncrasies.
My mother and I have not always been close. We have gone full circle. We have definitely had our ups and downs but this is by far the best UP I know.
I love you mom!

Monday, March 4, 2013

Role Reversal

Role Reversal - we have all heard the term.  What exactly does it mean?  When does it occur? How do we cope with it?

Dictionary.com says:
Main Entry: role reversal
Part of Speech: n
Definition: a circumstance wherein two people adopt the opposite role of their normal one or switch normal roles

Wikipedia says:
In psychodrama, role reversal is a technique where the protagonist is asked, by the psychodrama director, to exchange roles with another person (an auxiliary ego) on the psychodrama stage. The former assumes as many of the roles of the other as possible and vice versa. In that way, one is able not only to experience a different perspective of the situation (to walk into someone's else's shoes), but also to witness one's own behaviour from the other side. Thereby, the role reversal can bring significant abreactive and mental catharsis, insight, and transformation.

Beth's D4Dementia blog:
From the ultimate role reversal, however, comes the ultimate lesson. Cherish every moment you have with your parents, however irritating, irrational or restrictive their parenting may seem. If you ever have to become their parent, you will understand where they were coming from. After all, the apple doesn't fall so very far from the tree.

Oxford Dictionary says:
Definition of role reversal


  • a situation in which someone adopts a role the reverse of that which they normally assume in relation to someone else, who typically assumes their role in exchange: one marriage counsellor makes use of role reversal, inviting husband and wife to pretend to be each other
My definition of it is that Mom can no longer make sound, concise, accurate or viable decisions on her own, and I must become the parent to be certain that she is safe, cared for and happy. 
At first, it was making sure that we were on top of all the medication that had been prescribed.  Being here for her when the OT, PT and VRN arrived.  Being sure that when we did have a doctor appointment, she was telling them exactly what was going on and not leaving out any of the important information, which could ultimately mean a prescription change.
I did the cooking, cleaning, laundry, shopping, bill paying, and everything else that comes along with being a parent.  I made sure that she was safe, and happy, and that her needs were met.
I worked with the visiting nurses that would come into her home to be sure that not only did she follow through on her exercises, and her medications, but that she felt comfortable with their decisions.
I met each at the end of the walkway, pretending to smoke before they arrived and filled them in on what I wanted to be sure they covered with her.  Unbeknown st to her.   I did whatever I could to make sure that she could remain at home, where she wanted to be.
Role reversal . . . definitely not an easy task for any child.  No matter the age.  Our parents are proud people.  Most from one of the last generations that really cared about family and pride.  Our parents spent their lives making sure that WE the children had what we needed, had clean clothes, had food, had a roof over our heads.  Doing whatever it took to provide for us.  In my family that was not an easy task.  There were six children . . . all needing their own things. 
We were not wealthy by any means, but we never went without.  Our parents provided for us the best they could and they never let us feel like we could not have something. 
Mom was a stay at home mom!  She cooked, cleaned, and raised each of us  . . . without baby sitters, or a cleaning lady, or any assistance other than her own mother on occasion.  Mom worked harder at home raising the six of us than many mothers who worked outside the home.
Role reversal . . . I had to tell her she could not, I had to tell her do not, I had to tell her please don't.  We fought a great deal.  She was not happy that I was trying to take over, but what she could not understand was that she was not capable of doing it all alone any longer.
One day I got a call from the home owners association telling me that they had received mom's condo fees . . . not once but twice.  Because of the way they are set up, the could NOT give her a refund so she would be paid in full for TWO years.    During our conversation, I asked if they could at least come and speak with her, so that she would be aware of what she did.  The lady was wonderful.  She made copies of everything, came to our home and explained it all to mom. 
Mom, you can no longer pay bills by yourself.  I need to know what you are doing and when so I can prevent this from happening again.   She did not like it at all, but reluctantly gave in.
On another day, I could hear mom on her phone in her "office" speaking with the cell phone company.  She was saying " My phone has been stolen.  I know that the bill is very high, in the thousands.  I want to report it and I want to know how I will go about paying it."   "Yes I told you, it was stolen"  "Yes the Jitterbug"
As I sat on the couch in the living room, I could not help but laugh . . .she was on her Jitterbug . . . she was calling from the stolen phone.
When she came out of the office, I asked what she had been doing and she said none of your business . . . I was handling something that needed to be taken care of.   Okay, I replied . . .do you need any help?  No she said, I can still manage my own affairs . . .
Role Reversal . . . the hardest action a child will ever undergo.  The trials and tribulations of taking "ownership" of your parent. 
My mother still today, after 2 years fights me on issues especially finances.  She believes that she is fine and that I don't need to do everything for her.  Usually she says, "I could probably still do it, but you won't let me."
My mother was a strong woman and in many ways still is.  She was always independent and today, wishes she could be.  She does not understand that if left on her own, to manage she would be a failure, and that I am doing what I need to do, to prevent that from happening.
Role reversal . . . becoming the parent to your parent to protect them from them self!

Saturday, March 2, 2013

I can hardly believe it has been over a year since my last post.  Where has the time gone? I am providing a brief update with photos for now, and will retrieve the stories from last year to post at a later date . . .very soon.

For each of you who have written and commented to me privately, I appreciate and enjoy your support.  It has been a road I never imagined I would be on, and I am learning so much about who I am, and who my Mother is.  I even think I now know what I want to do when I grow up!  I want to be exactly like my Mom and I want to be an advocate for those who in their Golden Years are unable to fight for themselves! 

My work with Cancer patients will continue, but I will now also branch out and work on getting Gram's House in order!  Volunteers always welcome!

The longer I am around the patients in the "memory care" facility of the Villages Assisted Living,  I realize that God is truly kind. I mean that in a wonderful way. These poor patients don't know their names, where they are, what day it is and how to get from their room to where they eat. They wander around all day, looking for a way out . . . a way to go home . . . God has removed their pain as well as their worst memories. Basically they are "existing" because family and caregivers are making sure they are safe.  My family is fortunate because our Mother is not like them . . . well at least not all the time, yet. 

I can tell you that it has been a hard road for not only my Mom, but for me as well.  The pain I have endured watching her slip away over these last two years is something I never imagined nor can most understand. 

A few years ago when I lost my friend suddenly I discussed with her husband my struggle with a loss, as sudden as hers; or watching someone who has a terminal illness, where nothing can be done.   Today, having watched my Mom struggle as she has, I would definitely have opted for that "sudden".

Mom's health is wonderful . . . it is her brain that is failing her.   She continues to ask to go home, to go see her condo, to at least be able to visit.

Feb 5, 2012 is the day I had her placed in assisted living.  She still has no idea how long she has even been there.

Today March 1, 2031 I took her laundry back to her and listened as she told me the story about a co-resident who keeps coming into her room; stealing things; and bothering her.   I have empathy for her struggles, but I cannot control them.  I don't have the answers for her, and I cannot make the facility react they way Mom would believe they should.  I listen often silently and just say well, okay, how about, what if?  She thinks I don't care, but I think I sometimes I care too much (if that is possible). 

The photo here is from Mom's first fall back in the end of April last year.  She was so afraid to tell anyone because as best she can recall that is the reason she is there.  She remembers that I came in from NJ, found her on the floor and that is all.  She does not remember the stories she told me, or the dementia with psychotic episodes.  She does not remember that I had to have someone break in.  She does not remember that she had the heat turned off, or that the door leading to the garage was wide open.  She does not remember that it was in the low 30's, and the her body temperature had fallen to about 86 if I remember correctly.  She does not remember the ride in the ambulance; not once but twice. She does not remember the video conference the following day, which made the ER physicians have her transported to a Psychiatric Geriatric Hospital.   She does not remember the ride in the County Sheriff car from the local hospital to the Geriatric hospital.   I guess that is a blessing for her.  She could not see the bruising on her face due to her severe vision loss and did not realize that we could all see it.   When I asked her what happened her reply was simply, "I fell".  Are you going to hold that against me?  Use it to keep me here?  Then proceeded to tell me she has several friends who have fallen and they are still able to live at home, ALONE!

Psychosis is a loss of contact with reality that usually includes: False beliefs about what is taking place or who one is (delusions); Seeing or hearing things that aren't there (hallucinations).

This fall happened just about a year ago now.  Thankfully she was not injured worse than the marks on her face.  She was "packing to go home" because she knew I was on my way, and in her haste with her belongings piled up in the center of the room, tripped and literally fell into her closet.  She did not tell the staff or anyone - they saw the bruising.  So you see; Mom has some rationalization still.  She knows what will and will not get her into trouble and knows when to use it.    Additionally I will add to this segment by saying . . . I was NOT on my way to take her home.  She had only been there a little over two months at that time. 

I am happy to report that she only had one other incident where she fell.  I had taken her to her appointment with Dr H.  her favorite doctor, who she believes will one day tell her she can go home.  I placed her in the chair in the lobby and since I do not smoke in my car while she is with me went outside while we had some time prior to the appointment.  I think I just lit the thing when the nurse came out and asked me if I was with the woman with the "white cane". . . .look at her, look at me . . . do you think?  Well anyway I ran inside to find her on the floor.  She was not comfortable in the chair I told her to sit in so she decided to move to the other side of the waiting room . . . did not know where the furniture was situated, did not ask for help, or wait for me to get back inside.  She thought she was going to sit on the chair, and missed.   She was so upset with herself and agitated . . . because again, that "first fall" is what has made all of the changes in her life these last two years.

April 2012

Easter Season was a good time because we had visitors.  Ginny and her children came in.  That always makes Mom happy, when her children and grand children come to visit.  Here is a photo from Easter . . . .

L - R  Virginia (Ginny), Elizabeth, Kathy and Mom front & center . .
May 2012

Whenever the facility has an event for a holiday, I make every effort to attend.  Typically my friend Sheila and I volunteer our time and culinary skills.  Mom is always thrilled to have "guests" and as you can see, she loves to be photographed.  All you have to is say "SMILE" and there it is, broad across her face from cheek to cheek.   She is still the same beautiful young woman my dad fell in love with over 60 years ago!  and I know what I will look like in years to come . . ha ha ha
Memorial Day, waiting for the festivities to begin! 

June July 2012

Summer was fun with Mom.  On good days, when the weather permitted, we would go sit outside on the patio.  The facility has a wonderful activity coordinator.  She takes the residents out for walks, drives in the van, and continually strives to keep them entertained and engaged. 

Our family reunion is held every other year, and in 2012 it was held just about 100 miles from her.  My siblings were able to come in and visit.  I got the facility to let us use a sun room in one of the other buildings on the property.  My eldest nephew came in and surprised Mom.  He escorted her from her building to where the rest of us were gathered to have a dinner with Mom.  It was a wonderful surprise and evening.  The following is a photo of Mom with her Grandchildren who were present. 

Enter Mom with Jeremy
L - R Thomas Frank, Elizabeth Frank, Mom, RJ Bailey Jr, and Jeremy Bailey
 December 2012

Mom's Birthday outing at Olive Garden

Celebrating Christmas with Family & Friends

This is a photo from our family Christmas Party. 
(L - R  Kathy (me), Rodney Dow (Ikey), Barbara (Mom), Ruby (Mama)

The following are from the Villages Christmas Party

 My friend Sheila, whom I would be lost without . . she has been a godsend!  not only for me, but for Mom as well.  Dad always called her the "red-headed step-child" . . . . Mom now calls her #4 - then says, "Daughter #4#

And what Christmas party would be complete without the Ho Ho Dude!  Santa gave each resident a present.  He came in and gave each female a stuffed animal, and each male a ball cap.  Then the residents' families provided a wrapped gift for their loved one.  Santa gave Mom diabetic socks - she is not a diabetic, but she has edema, so they were a welcome gift and she was wondering how he knew!  Gotta love it!    Look close and you can see her Rudolph in her lap.  She would NOT put it down! 

Valentines Day 2013

So as I end my update of 2012 I place the first 2013 photos up.  Valentine's Day photos.  How appropriate to complete the year in review with a day of love.  My heart was touched when as we were getting in the car after her outing for Valentines day and she said "This is the best Valentines Day I ever had.  Dinner, candy, balloons.  Your dad never did this!"  Well, I guess I have come to realize that I will not have her forever so these little events we have shared in last 12 months, have been as special for me as they have for her. 

And no, that is not a bruise on mom's head . . it is residual ashes from Ash Wendesday

Tuesday, February 14, 2012

Valentines Day . . . Supposed to show your love

Today was a very hard day . . . I had a card, candy, a new clock .  .BIG NUMBERS - Black & White . . . . all prepared and ready to take to the "Villages" for Mom.

Early in the day my cell phone rang.  I picked it up and it was a nurse from the Villages calling for Mom.  The nurse put Mom on and all she did was SCREAM and YELL at me.  She told me she had a doctor appointment in the evening at 5 PM.  She told me that my brother was outside her window and that he was not allowed in.  She asked me if I was in New Jersey?  She was angry, upset and very confused.  Then she said, "I am gonna throw this damn thing on the floor and shatter it into a million pieces."   I asked what she was talking about . . she said my cell phone and then the line went dead.

I hopped in my car and did the five mile drive to the facility . . . . as I got to her hallway, the nursing staff was carrying chairs down the hall.  They were going to sit outside her room.  She was threatening to break out . . she was saying that there was a truck on the way to pick her up, and her things.  All of her belongings were piled in the middle of her room about three feet high. 

The bag of goodies for Valentines Day was placed on her bed.  I never even told her I had it.  I just left it, hoping that when she finally calmed down she would see it, and appreciate it.

She told me she had spoken to a judge, she had been discharged.  She and her friend (imaginary) Joseph were talking and she knew about my car accident.  She asked what type of surgery I had had in Elizabeth General Hospital?  I asked if she knew where she was.  I said Elizabeth General is in NJ and we are in Tn.  She said I know where the hospital is, but you have been in NJ

She was livid because I have not allowed anyone to visit her . . . I cannot make family, friends or anyone visit if they elect not to. . . How do I tell her that?  We are in this alone - me and her for now . . .

She asked what I was arguing about in the hallway with her brother Richie?  He is in Arizona and they have not spoken in years . . .

So my question today, after hours of thought and many tears is how do I continue to deal with this?

For a year I have done everything I know to do to keep her safe, to keep her home and to keep her from being put away.

I have made sure she has had everything she needs, just as she did with me as a child.

Today she said to me, I am the parent and you are the child . . . so I replied, then act that way.
Today she told me that she no longer trusted me, I am a liar, a thief, and have taken everything she owns.
She told me that it was HER condo, not mine and she wanted to go home

As quickly as she said all that, she told me about the voices, and the people she has heard and seen outside her window.

I am not a rock, I can feel the cracks starting and I know it is only a matter of time before I myself have a breakdown.

I need a break, I need to get away, I need someone to tell me I am not those things she says.

If you have never lived with dementia, or a mental illness, you don't know how hard it is to look at the person and take what they say, because they look exactly the same, but you know in your heart they are gone.

I struggle to keep calm, to keep from responding and saying something I will regret, but that woman who is sitting there, yelling at me is NOT my mother.  I know that and I believe that, but she looks exactly the same.

For years I wondered if it was easier to lose someone instantly, as in an accident or to know they are sick and at least be able to say good bye.

Today, I know that I would rather lose my mom quickly.  To see the internal struggle she is going through.  Her mind is tricking her, changing her, making her vanish before my eyes, but physically she is healthy.

I miss my "Mommy" . . . I want my "Mommy" and I pray for her each day.  

The picture above is from my web cam, just after the beginning of the year, prior to her recent hospitalization.  She continually struggled with the voices, and sat for hours, trying to escape them.  Today they are still present.  She cannot tell what is reality or what is created by her, in her own mind.

I wish I could do something, anything to help her.  I am tired, I am saddened, I am lost and lonely.  I feel helpless against this disease.  My helplessness against this makes me feel like a failure.  How do I continue to pretend to cope?