Wednesday, August 13, 2014

From this
to this in just 8 years

When I first started blogging about my experience as Betty's caregiver I got some negative feedback from a family member who felt I was "putting too much out there" exposing her, possibly putting her in danger.  I couldn't find my voice after that and pretty much stopped blogging.. only posting occasionally.

In December my husband and I moved in with Betty because she could no longer be alone and we just hated the idea of placing her in a memory care unit.  It has been the hardest thing I have ever done.  Some people are easy to live with.  Betty is not all that easy.  I found the perfect word to describe her; acrimonious.  If you go to that link and see all of the words that define acrimonious you will see what I live through every day.

In late December I started to see these white ghost shapes sliding up and down in my eyes.  I had no idea what it was but it was very annoying and very disconcerting since I had such a hard time describing it.  In January we made an appointment with an eye doctor down here in Florida and he brushed off my complaint.  I continued to see the white spots and also seemed to have a million more floaters, so I made an appointment up north with my regular eye doctor, as we had my sons wedding in June.  

When I explained the whole thing to Dr. Goswick he took me very seriously and took pictures etc.  He noticed a big change since my last exam and sent me to a retina specialist the next day.  I was given all sorts of tests and was diagnosed with Birdshot Chorioretinopathy.  Needless to say I was and am, floored.  Biggest fear I have always had.... blindness.

What does all this have to do with Betty?  One of the components of Birdshot is that stress is often the factor for bringing on the symptoms. Could I be more stressed?  This is NOT fun.  This situation is just NOT fun.  You have to have more patience than I have and I am pretty darn patient.  Bob.. not so good at patient.  It is a constant battle to remember that "IT IS THE DISEASE" and not just Betty being Betty.  Oh, there is still that.  She has been acrimonious since I met her in 2000.  How much is disease and how much is Betty.. I have no idea.  She wakes up on the wrong side of the bed 99% of the time.  One wrong word and BAM! 


This disease SUCKS!  There, I said it.  It sucks that Bob is spending his retirement years locked in a house that he never planned to be in, trying to learn patience, trying to be a loving son and an understanding husband.  He thought he would be playing golf, sitting on the deck reading, maybe even getting an RV and traveling.  Instead, he is trying to read while listening to the same story over and over and over.  He did just join the golf course here but that means he will have to leave me with his mother and he can't help but feel guilt about that.  (Not necessary... I will survive.)  We cannot go out to eat.  We can't have a conversation without parroting or lectures that we can't discuss things at the table.  We can't talk or make noise in the morning or night.  We have to keep the cat quiet and out of sight as much as possible because, Betty hates cats.  We can't vacuum when we want to because it makes noise and no one makes noise at "that time."  I can't prepare dinner without trying to figure out a way Betty can help or hearing over and over the stories.  I can't get up in the morning and make a batch of muffins or put some dishes away in the cupboard. Simple things.  I cannot relax in the kitchen and just prepare a meal or make a loaf of bread or wash the dishes.  If I do not do the "right thing" I can look over and she is crying.  You know, it is not easy to change the way you like to do things.. not for Betty and not for me.

This disease sucks!  It is the disease that allows for Betty to sit and worry about what she is going to prepare for her guests.. us?  She worries about what she has in the fridge to make.  She has not cooked a meal in almost eight years.  Has not really shopped for over five.  I have done everything for her.  Imagine me trying to bring all of my belongings into her kitchen and putting them away without making it too obvious to her.  Moving things.  Shifting things.  Rearranging.  She says every day, "Leave those dishes and I will wash them."  Nah.  Not so much.   She still thinks she washes her own clothes.  It is up to us to figure out how to do all those things without causing her to realize that she does nothing but sit in the chair staring straight ahead.  Our reality is not her reality.  We have to learn to live in her often made up reality and I am here to tell you.. HARDEST thing EVER!  

This disease sucks!  I blather on.. poor us.   Lord, please remind me every day that this disease has a stranglehold on Betty.  That SHE is the victim.  She is the long-suffering.  I am here to be the comforter.  God please give me a better attitude and the kindness I need, to deal with my living situation.  Please guide me. Amen.

Friday, December 27, 2013

I am sorry that the quality of this picture is not great because it is such a wonderful picture of Bob comforting his mom while she was sundowning and became very confused.  

We were at her niece's home for Christmas Eve dinner and it was just us and her niece's husband and their 44 year old son.. very low key.  I watched as the look came over Betty when she gets confused and agitated.  Bob got up from his chair and walked over and sat next to Betty and answered her questions about where she was.


When we were getting ready to leave for the three minute drive back to the house Betty was searching for her things as though she had been living with Paula.  For the time we were there she enjoyed herself until the sundowning came over her.



One thing I have not mentioned is that we came to live with Betty on the 16th.  It has been rough but has shown some signs of becoming our new normal.  I told Bob it would not be long before she would think she is visiting us not us in her house.  There have been glimmers of that already.

Wednesday, November 13, 2013

Ruth - Chapter 1



Time To Make Decisons

The time has come to make the very hard decisions concerning Betty.  We visited our first, and high-end of what Betty can afford, Memory Care facility.  We spent two and a half hours talking to the sales person, (my term) and looking at the Memory Care Unit.  When we walked in thru the keypad entrance the large group was sitting in the rotunda, singing.  Some were singing and some just looking around like deer caught in the headlights.  We were told that it had been a big day for family visits but no family were there then.  

They allowed us to go into one of the private rooms.. large enough to include a bed, small couch and her own TV.  There was a private bathroom with toilet.


Then we were going to see the semi-private room which is really what Betty can afford but there was a woman laying down so we couldn't go in.  My impression was..SMALL.  Was that the ploy to get us to go for the private or was it simply so that we would not get a vision of just how small the room would be?  Those are things that came to my always cynical mind.


The place was clean, staff attentive and very friendly.  It was possibly ideal.  But, it doesn't feel like Betty to me.  They have their own private dining room with fiesta ware dishes and menu's to choose their breakfast, lunch and dinner.

It is truly a lovely facility but, it just doesn't feel like Betty.

I went to bed still burdened with the thoughts of putting Betty in such a place.  Their suggestions for little white lies to get her there.  Her hug last night rippling through my mind.  Her fear, faith in us, her happiness. All of those things churning through the terrible sleep.  I awoke and turned to Bob and said, through tears, "I just don't think I can do it!"  I really do not think I can.  


We have talked about the impossibleness of moving in with her.  Their arguments, my frustration, just no privacy.  We have now talked about the possibilities of moving in with her.  Not spending on a new house just moving in and spending to make it a place we could take care of Betty until she is not aware of her surroundings or is incontinent or bed bound.  We are facing that now because we could not hurt her and we cannot lie to her.


And so.. we are visiting one more place before we make a decision and before we mention it to Betty.  It is well with my soul.  Maybe I am more Ruth than I had thought.

Thursday, July 4, 2013

"I've Never Had This Before"

Yesterday Betty had another episode of acid reflux pain.  Bob had called earlier in the late afternoon and she mentioned that she would like to think of solutions for her living arrangements.  Of course when trying to list some solutions she said that she didn't like those options and wants to remain where she is, as is.

Then, she called about two hours later and was crying and describing pain below her breasts.  I recognized this as a recurring pain that she gets when she has not eaten regularly or she is upset, in this case... both! Bob told her that she has had this   We told her not to lay down as that would make the symptoms worse.  Bob tried to ask when she had eaten but she was hearing none of it.  So, I said Betty.. I am coming over.

Bob decided to come too and off we went.  I did call her when we were actually in the car and said "we are on the way."  She seemed glad and far less anxious when she answered.  The voice changes almost immediately from whiny to normal.

When we arrived Betty was in her chair and feeling almost 100%.  She insisted that she has never had anything like that before and even with reminding that she was hospitalized over night for these same symptoms, she found it difficult to accept.  I did get her to undo her tight pants. "These are not tight!" I did give her a Tum's.  "Do I chew it?"

After a few minutes I suggested some oatmeal for dinner.  It was after 8 p.m. by the way.  I got up, made the oatmeal and she downed it pretty fast for someone who was suffering in terrible pain 30 minutes before.  We stayed for quite some time until we were sure she was ok and then headed home.  

She does not remember that she has a knee replacement.  Does not remember the stomach issues that caused her to have to take Nexium.  Clearly, people with dementia need health records at hand.  I am not sure I know all I need to know.  More to work on this coming week.


Wednesday, July 3, 2013

Long Time No Write

It has been a very long time since I have blogged about my journey with Betty.  Much of that I want to say is due to restrictions put upon my journaling about Betty by family, afraid that Betty's privacy was being infringed upon and that my journaling would somehow put her in danger.  I internalized it as criticism and stopped journaling.  Then, I lost my grandson Ethan and I used that as an excuse not to journal.  I was still living this journey, still struggling without communicating about it, keeping it all inside and just being stressed.

I have made a decision to go ahead here and journal, to open up about our daily walk.  I have no way to go back and have a visible path of the progression of this disease.  I have a fairly good memory but I tend to block out things that disturb me.  I can't go back and write about the shower struggles; the good, bad and ugly.  I have no reference point.

I can say that we are still here and are not traveling with Betty. I can say that we do not feel, at her current level of disease, it would be anything but detrimental to her health to change her environment other than the possibility of a permanent move to a memory care unit.  Betty does not do well with change.  She is ok as long as things are routine but a doctor's appointment can wreak havoc for days.

We are in the place where we MUST move forward with either full-time in home care or a placement. Betty is very unhappy in her current situation.  The change is not easy for Bob and the process is slow.  I have no idea what is feasible.  I wish this were easier.  The stress is pretty scary actually.  

I am going to journal.